*****WARNING!- this post talks about POOP!*****
Took the boys on Thursday to the Dr for follow-up visits.
The night before, David was really gassy and stinky. I looked at Troy and said "That isn't good."
Sure enough, the stool test we did on 10/18 showed a +3 for Candida! That is moderate flora, not good.
So...while we were at the Dr., David proceeds to have an accident, because his stool is so runny it won't hold form. He is starting to act giddy again...but you know what?
He is happy and totally wonderful to be around!
I can not stress to parents enough who are treating their kids for yeast. Do NOT remove gut support! The probiotics, Enhansa, and iGg powder are essential to YOUR sanity!
David no longer has to use Enhansa because the inflammation in his gut is totally healed.
Remember the nightmare month of August we had, with the crazy defiance and horrible behaviors? That was all from going OFF gut support to take a stool test and check for yeast.
Well, you can check for yeast without removing that support...just check for the flora and continue to support the gut and heal inflammation.
Your hair will thank you since you won't be ripping it out!
David's behavior is still improving, he is still enjoyable and we are still seeing changes in him even though he has a bunch of yeast...again.
We are getting ready to start Nystatin again...for two months.
We are trying the BioFilm approach. It's a 4 step system, because OBVIOUSLY the yeast in David's system isn't giving up that easily.
Apparently yeast protects itself but exuding a slimy protective barrier (imagine a slug trail if you will), and when you take the anti-fungal, you see some improvement, but that slime protects enough yeast, that when the anti-fungal is removed there is enough there to start growing again.
Well, there is a targeted digestive enzyme that is made to remove that slimy protective barrier. So we take that, then 30 minutes to one hour later we take a dose of anti-fungal, then David eats his meal and one hour later we take activated charcoal and modified citrus pectin to "mop-up" the die off and lastly, we bring in fiber, to scrub the intestinal walls clean and carry the crud out of the body.
Sounds fun, huh?
Not when you are trying to determine HOW to do this on a school day!
We have to do this twice a day... it's all about logistics.
I will post more once we get started...but even with moderate flora David is still thriving and doing well.
Praying die-off doesn't turn him into a crazy horrible kid again...
Until next time...
Saturday, November 17, 2012
Monday, November 12, 2012
When you see a light...
I am amazed.
In the last two days, there is a light in David.
He understands.
He is paying more attention to things.
He's being intentional with his discussions toward us. Don't get me wrong, he still perseverates on the things he loves a lot.
He went over and picked up Troy's phone off the floor and told Troy "I'm putting your phone on the entertainment center Daddy."
Intention.
Absolute Blessing! I feel like crying, and WHY NOT! I feel like we are truly starting to see our beautiful boy emerge right before our eyes!
Praise Jesus!
I'm just sayin'...
I know we have a long road ahead still. All the effort for the last three years has paid off!
Well, if I really think about it, the MAIN effort was in the last year. I still feel like I didn't get anywhere that first two years ACCEPT to educate myself on my child's condition and to plead and pray for the Lord to guide me. I knew in my heart of hearts I wasn't getting responses with the first doctor.
I needed change in David and I wasn't seeing it. All the things I read and underlined in that book when David was first diagnosed had all been set aside and put on the back burner...because the doctor we were seeing wanted to go a different route.
That need FINALLY led me to go with the doctor that was recommended to me when David was first diagnosed... and she is a tremendous God send.
I knew it was the best move as soon as she spoke. She wanted to start B12 shots right away, one of the things I had underlined in my notes regarding things I felt David would possibly benefit from in all my research.
I recommend her to EVERY mother I have met with a child that has special needs.
For the last four weeks, I have taken David to an indoor trampoline park for some therapeutic jumping and cardio. He and his brother spent time the first two weeks in the "kids section", but I wasn't seeing a good level of real jumping. So, I started going on family night where it's 25% off for entire family to jump.
Tonight, it was just David and me. He wasn't bothered with the music or how many people were there. He jumped and he had fun. He flew into the foam pit this time and CRAWLED to the back of the pit to look outside (big garage door opened to the outside) and see the big bus that the air park uses for group stuff.
When I asked him nicely, he crawled right on back to me, got out on his own and we went and jumped some more. I asked him later if he wanted to see the bus again, he immediately ran over and jumped in the foam pit and crawled to the back again for another peak.
If you have ever been to an indoor trampoline park, and the foam pit...talk about MAJOR heavy work out!
Such good therapy for David (and me) to get in there and have to use ALL our muscles to get out!
Inviting David's friend from school to join us next week. That'll be good a social workout too!
I feel like I could go on and on tonight...my heart feels light for the first time in a long time...like I said, I know we have a long way to go...but I am feeling renewed.
Thank you Jesus.
In the last two days, there is a light in David.
He understands.
He is paying more attention to things.
He's being intentional with his discussions toward us. Don't get me wrong, he still perseverates on the things he loves a lot.
He went over and picked up Troy's phone off the floor and told Troy "I'm putting your phone on the entertainment center Daddy."
Intention.
Absolute Blessing! I feel like crying, and WHY NOT! I feel like we are truly starting to see our beautiful boy emerge right before our eyes!
Praise Jesus!
I'm just sayin'...
I know we have a long road ahead still. All the effort for the last three years has paid off!
Well, if I really think about it, the MAIN effort was in the last year. I still feel like I didn't get anywhere that first two years ACCEPT to educate myself on my child's condition and to plead and pray for the Lord to guide me. I knew in my heart of hearts I wasn't getting responses with the first doctor.
I needed change in David and I wasn't seeing it. All the things I read and underlined in that book when David was first diagnosed had all been set aside and put on the back burner...because the doctor we were seeing wanted to go a different route.
That need FINALLY led me to go with the doctor that was recommended to me when David was first diagnosed... and she is a tremendous God send.
I knew it was the best move as soon as she spoke. She wanted to start B12 shots right away, one of the things I had underlined in my notes regarding things I felt David would possibly benefit from in all my research.
I recommend her to EVERY mother I have met with a child that has special needs.
For the last four weeks, I have taken David to an indoor trampoline park for some therapeutic jumping and cardio. He and his brother spent time the first two weeks in the "kids section", but I wasn't seeing a good level of real jumping. So, I started going on family night where it's 25% off for entire family to jump.
Tonight, it was just David and me. He wasn't bothered with the music or how many people were there. He jumped and he had fun. He flew into the foam pit this time and CRAWLED to the back of the pit to look outside (big garage door opened to the outside) and see the big bus that the air park uses for group stuff.
When I asked him nicely, he crawled right on back to me, got out on his own and we went and jumped some more. I asked him later if he wanted to see the bus again, he immediately ran over and jumped in the foam pit and crawled to the back again for another peak.
If you have ever been to an indoor trampoline park, and the foam pit...talk about MAJOR heavy work out!
Such good therapy for David (and me) to get in there and have to use ALL our muscles to get out!
Inviting David's friend from school to join us next week. That'll be good a social workout too!
I feel like I could go on and on tonight...my heart feels light for the first time in a long time...like I said, I know we have a long way to go...but I am feeling renewed.
Thank you Jesus.
Wednesday, November 7, 2012
Light at the End of a VERY Long Tunnel...
It has been a rough few months.
Defiance is still present in David.
We got in last month to the Dr and we stopped the "ramp up" of methyl folate (5-MTHF) and brought additional supporting amino acids on board to provide a more rounded support to his system. We added additional NAC and Glycine and also added 5-HTP.
Things have started to improve.
Felt we needed just a bit more calming, so we have added Trytophan as well.
Waiting for the week to be through, then we'll move toward ramping up the methyl folate again.
Goal is to get to a pharmaceutical level of methyl folate (5mg or higher) then add in folinic acid.
We are going to heal my boys methylation cycle!
It is a long hard road, but patience is paying off.
When we didn't see the MAJOR changes that a lot of people see in their child when they start B12 shots, we knew that his cycle needed some serious repair. It's like B12 is just one spoke of this boys broken wheel. We've added a spoke of 5-HTP, another of Taurine and another of Tryptophan. We've "lengthened" the short spokes of NAC and Glycine by adding just a little more...
We will get this wheel rolling on it's own soon enough.
We know we are getting there because the defiance is actually a clue that things are working.
David is asserting a personality, he's irritable because more info is getting in and overstimulating him...now we need to provide the sensory support he needs (proprioceptive (heavy work) and vestibular are the main ones to support right now.
Helping him to tune out background music and not become overwhelmed by it. This had been achieved at our OT appointments! The last 3 or 4 appointments, he hasn't even mentioned the music playing in the background, when he would normally immediately turn it off.
Slow but sure successes are so encouraging.
Thank God, we are ready for a little breather for awhile.
It's so hard when you want a "break" from your child. You feel like such a horrible parent when all you want to do is run the other way because you don't have any more patience or energy to fight. You can't decide if punishment is appropriate because you aren't certain if your child comprehends what is happening.
I can do all things though Christ who strengthens me...David's favorite scripture is what gets me though and reminds me that I can't do this...WE can't do this without Christ.
Now if we can slow down a bit to enjoy the time we have...
Defiance is still present in David.
We got in last month to the Dr and we stopped the "ramp up" of methyl folate (5-MTHF) and brought additional supporting amino acids on board to provide a more rounded support to his system. We added additional NAC and Glycine and also added 5-HTP.
Things have started to improve.
Felt we needed just a bit more calming, so we have added Trytophan as well.
Waiting for the week to be through, then we'll move toward ramping up the methyl folate again.
Goal is to get to a pharmaceutical level of methyl folate (5mg or higher) then add in folinic acid.
We are going to heal my boys methylation cycle!
It is a long hard road, but patience is paying off.
When we didn't see the MAJOR changes that a lot of people see in their child when they start B12 shots, we knew that his cycle needed some serious repair. It's like B12 is just one spoke of this boys broken wheel. We've added a spoke of 5-HTP, another of Taurine and another of Tryptophan. We've "lengthened" the short spokes of NAC and Glycine by adding just a little more...
We will get this wheel rolling on it's own soon enough.
We know we are getting there because the defiance is actually a clue that things are working.
David is asserting a personality, he's irritable because more info is getting in and overstimulating him...now we need to provide the sensory support he needs (proprioceptive (heavy work) and vestibular are the main ones to support right now.
Helping him to tune out background music and not become overwhelmed by it. This had been achieved at our OT appointments! The last 3 or 4 appointments, he hasn't even mentioned the music playing in the background, when he would normally immediately turn it off.
Slow but sure successes are so encouraging.
Thank God, we are ready for a little breather for awhile.
It's so hard when you want a "break" from your child. You feel like such a horrible parent when all you want to do is run the other way because you don't have any more patience or energy to fight. You can't decide if punishment is appropriate because you aren't certain if your child comprehends what is happening.
I can do all things though Christ who strengthens me...David's favorite scripture is what gets me though and reminds me that I can't do this...WE can't do this without Christ.
Now if we can slow down a bit to enjoy the time we have...
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| Gregory, Madeline & David- First time trick or treating this year! |
Monday, September 17, 2012
Wits End...
This last few months have been such struggle for us and David.
We have been treating for yeast since the end of June. We have seen an improvement the last few weeks and then yesterday, David decided he wasn't going to use the potty again and started going in his pants.
This is so stressful, the amount of laundry or money spent on pull-ups is ridiculous.
Not only that, but we have seen a major increase in defiance in David. We say "No, David" and he replies "Yes!" or vice versa...it's been a constant fight and battle gradually getting worse over the last few days.
We've heard that die-off reaction can be almost as bad or even worse in some children.
Is it that, or something else?
We have him on diflucan, a pretty strong anti-fungal.
We were also told it could be an increase in methylation for David. Which is a VERY good thing, but why all the defiance?
He's asserting his personality.
More sensory information is getting to David, so he gets overstimulated much faster. It's causing him to be more "oral" at school. Chewing on his fingers, his shirt and even his toes!
I don't know if we are dealing with die-off or increased methylation or BOTH.
We are so tired, after this last few months. We've been looking forward to things hopefully getting better...and we are still having so much trouble.
There is a lot of yelling in the house. David defying every request, arguing at every turn.
It is so frustrating, because no matter how simply we explain a punishment, he doesn't seem to understand.
We have taken away the iPad as consequence for messing his pants the last few days.
He cries consistently for it and almost to the point of puking.
It has been exhausting to consistently hold our ground and stand firm on the punishment. Lord give us strength...Please.
Hopefully we'll have more answers this week from Dr on what is going on with our kid and how we might get some relief...for all of us.
We did a small trial of L-Theanine chewables for calming and it seems to help a little, so we are going to go try a 800 mg dose of these as directed to see if it brings us some peace. These things taste amazing, they are like candy and David loves them.
Until those come, we'll continue to hang on to what sanity we have left until we get direction on how to handle our little tyrants behavior.
One exhausted Momma,
Until next time...
We have been treating for yeast since the end of June. We have seen an improvement the last few weeks and then yesterday, David decided he wasn't going to use the potty again and started going in his pants.
This is so stressful, the amount of laundry or money spent on pull-ups is ridiculous.
Not only that, but we have seen a major increase in defiance in David. We say "No, David" and he replies "Yes!" or vice versa...it's been a constant fight and battle gradually getting worse over the last few days.
We've heard that die-off reaction can be almost as bad or even worse in some children.
Is it that, or something else?
We have him on diflucan, a pretty strong anti-fungal.
We were also told it could be an increase in methylation for David. Which is a VERY good thing, but why all the defiance?
He's asserting his personality.
More sensory information is getting to David, so he gets overstimulated much faster. It's causing him to be more "oral" at school. Chewing on his fingers, his shirt and even his toes!
I don't know if we are dealing with die-off or increased methylation or BOTH.
We are so tired, after this last few months. We've been looking forward to things hopefully getting better...and we are still having so much trouble.
There is a lot of yelling in the house. David defying every request, arguing at every turn.
It is so frustrating, because no matter how simply we explain a punishment, he doesn't seem to understand.
We have taken away the iPad as consequence for messing his pants the last few days.
He cries consistently for it and almost to the point of puking.
It has been exhausting to consistently hold our ground and stand firm on the punishment. Lord give us strength...Please.
Hopefully we'll have more answers this week from Dr on what is going on with our kid and how we might get some relief...for all of us.
We did a small trial of L-Theanine chewables for calming and it seems to help a little, so we are going to go try a 800 mg dose of these as directed to see if it brings us some peace. These things taste amazing, they are like candy and David loves them.
Until those come, we'll continue to hang on to what sanity we have left until we get direction on how to handle our little tyrants behavior.
One exhausted Momma,
Until next time...
Thursday, August 30, 2012
Emerging...
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| Brothers... |
For those of you closer to us, you know that we have had a struggle this last few months with yeast...and David's behavior. We saw a more prevalent come back of yeast once we finished the Ampho(anti-fungal) and also stopped gut support for a week prior to getting a new stool sample.
We will not do that again.
The Dr. even agrees that we know the iGg powder is working and the probiotics are essential, so the next stool kit we do will not be as comprehensive, we'll just check for yeast and stay on the gut support.
Thank God. I've asked for a few months to breathe, where things are back to "normal" and we can adjust to new school year and having another sibling going to school.
We recently learned that David's younger brother also has a few sensory issues and have addressed those, also needing to make dietary changes to help his system. Our whole home may be gluten free soon, it was recommended from the start, but I didn't go for it. It's not that it's that hard but...well, it's hard. Worrying about what David may have gotten a hold of...and now that Gregory is presenting with a bit of an intolerance too.
I am having an iGg panel done on myself and if I present with similar intolerances, we have outnumbered my husband and our household will go gluten free.
I know I make yummy breads and cookies, so I'm not worried there. I'm actually worried about cheese, you see, I'm a Tillamook girl, through and through. But enough about me...
We've had pretty good success starting to limit the sugar in David's diet, and still trying to lessen the carbs and increase protein. I am grateful for Vegalite chocolate powder, it has really helped... and thanks to my husband, he has made it even more fun for David in this great sunny weather we are having. He mixes David's chocolate "shake" and then freezes it... making a chocolate slushy that David really enjoys.
One of our next endeavors is "pill swallowing training". Yeah!
David has a strong gag reflex, I'm not looking forward to this really, but I'm going to keep a positive attitude and try and help David understand that if he can swallow pills/capsules there will be less "icky juice" to drink. Hopefully he makes the connection and complies.
Please let him comply.
We actually received a pill swallowing training kit from the Dr's office! It comes with a bottle full of cellulose capsules to practice with and a list of helpful literature and tips for learning and teaching how to swallow pills.
We will also be going after that methylation pathway and working on additional support with more 5-MTHFR (Methyl Folate). We are going to increase it 2 weeks in to the diflucan and praying we will see a good response. We will then start adding in folinic acid. Supporting focus and attention, speech and language centers.
I can't wait to see major changes in David. We know that since he is getting daily B12 injections that he needs additional support because we didn't see major changes with just the B12... we are taking the next step and are prayerful to see God's handiwork.
I will say that folks in church notice how he engages a bit more, how talkative he is and that his eye contact is much better...and I love that feedback.
I'm going to go after reading comprehension...which is a whole other obstacle to tackle that most of our kids on the spectrum struggle with...
...so I'll leave that for another post.
Saturday, August 11, 2012
A few steps back...
All I have to say is it has been one rough summer.
We have basically been treating David for yeast for a couple of months. Since school has been out.
David has struggled with the lack of schedule.
We finished that last dose of Amphotericin, waited one week off of iGg powder and decreased probiotics to do the stool sample and... all hell breaks loose.
David regresses, looses fine motor skills for buttoning, snapping, zipping pants. He won't wash his hands and when you try to help he's all "wobbly" and squirming all over the place!
Oh, did I mention he is not using the toilet? Yeah, he's back in diapers! (Yeast makes stool so soft/runny, I don't blame David here- but man, the laundry!)
He's chewing on his shirt.
He's defiant.
But hey, he's sleeping later!
He's craving carbs and sugar, of course.
And what does that feed...?
YEAST!
Argh- it is back with a vengeance. We gave it more ground when we took away gut support with iGg powder and probiotics...and any sugar he ingests just feeds it more. :::SIGH:::
Luckily, a few days after this behavior starts, Dr. lets me come in early to talk about David (when I'm supposed to be getting Gregory's allergy test results) and we both felt the yeast was back.
She immediately called in Nystatin before we get the stool sample because she knows we've got to make some headway.
Well, the pharmacy gets the Rx yesterday and once shipped we wouldn't get until Monday.
No! I can't do this craziness all weekend.
I tell you, I struggle when David is "below" his "normal". It really stresses me out, then I feel like a bad Mom because my patience is gone sooner in the day then it should be.
Well, we took an almost two hour trip to Snoqualmie Falls yesterday to go and pick up that medicine, the pharmacy is right by the Falls themselves and it was a gorgeous drive.
Well, we immediately gave David his first dose once I received it...and was it just me or was he so calm on the way home?
The kids did pretty well, for the most part and we enjoyed some sightseeing too!
Well, we are on our way to beating this yeast again.
Now I know what die-off looks like in MY child. I also know what his behavior is like if yeast comes back.
I guess there is a silver lining.
We have basically been treating David for yeast for a couple of months. Since school has been out.
David has struggled with the lack of schedule.
We finished that last dose of Amphotericin, waited one week off of iGg powder and decreased probiotics to do the stool sample and... all hell breaks loose.
David regresses, looses fine motor skills for buttoning, snapping, zipping pants. He won't wash his hands and when you try to help he's all "wobbly" and squirming all over the place!
Oh, did I mention he is not using the toilet? Yeah, he's back in diapers! (Yeast makes stool so soft/runny, I don't blame David here- but man, the laundry!)
He's chewing on his shirt.
He's defiant.
But hey, he's sleeping later!
He's craving carbs and sugar, of course.
And what does that feed...?
YEAST!
Argh- it is back with a vengeance. We gave it more ground when we took away gut support with iGg powder and probiotics...and any sugar he ingests just feeds it more. :::SIGH:::
Luckily, a few days after this behavior starts, Dr. lets me come in early to talk about David (when I'm supposed to be getting Gregory's allergy test results) and we both felt the yeast was back.
She immediately called in Nystatin before we get the stool sample because she knows we've got to make some headway.
Well, the pharmacy gets the Rx yesterday and once shipped we wouldn't get until Monday.
No! I can't do this craziness all weekend.
I tell you, I struggle when David is "below" his "normal". It really stresses me out, then I feel like a bad Mom because my patience is gone sooner in the day then it should be.
 |
| My wonderful family... the Plumbs. |
Well, we immediately gave David his first dose once I received it...and was it just me or was he so calm on the way home?
The kids did pretty well, for the most part and we enjoyed some sightseeing too!
 |
| David checking out Snoqualmie Falls. |
Well, we are on our way to beating this yeast again.
Now I know what die-off looks like in MY child. I also know what his behavior is like if yeast comes back.
I guess there is a silver lining.
Saturday, June 30, 2012
He's really six years old?
My little man turned six yesterday.
We had a great day as a family, decided to take the kids to the Imagine Children's Museum. David nearly spent the entire hour and a half in the "bus" there, he is fascinated with buses lately.
Another big thing that happened yesterday, was David rode a bike for the first time. If you desire to see how he did...check out our video here. He had so much fun. He sang a song from Mickey Mouse Clubhouse Road Rally (a free app we downloaded for his iPad). It's quite fun.
David does seem to tie everyday life into things he's seen on television, which in some cases has been really helpful. For instance... getting David to take all of his vitamins and supplements was helped tremendously by Sid the Science Kids video on smell, follow that link, select investigations and arrow down to "What's that Smell?"
David is fascinated with the tiny Tupperware Midgets I have, and tied that to the cups in this investigation. He gets 3-4 midgets of juice with all of his supplements in it. One day my husband went to pour them into his normal sippy style cup and David said "Want this one?" and pointed to the midget. Then he said "cup #1 has...popcorn", Troy (my husband) poured another one and David grabbed it and said "cup #2 has... cinnamon" quickly drinking each one and awaiting the next... it's worked for months now!
Anyway- maybe some else out there has a child that makes unique abstract correlations with stuff and can find this useful?
David watches Wild Kratts and one brother wears blue and the other wears green. David's blankets are blue and his brothers are green...so their blankets are Martin and Chris (Kratt). See what I mean about abstract, it totally loses me and Troy or our childcare if we aren't paying attention. Some we still don't understand... but he's making or seeing some kind of connection...fascinating. I want to learn how he thinks more every day, so I can understand.
We had a great day as a family, decided to take the kids to the Imagine Children's Museum. David nearly spent the entire hour and a half in the "bus" there, he is fascinated with buses lately.
 |
| David may drive bus someday... |
David does seem to tie everyday life into things he's seen on television, which in some cases has been really helpful. For instance... getting David to take all of his vitamins and supplements was helped tremendously by Sid the Science Kids video on smell, follow that link, select investigations and arrow down to "What's that Smell?"
David is fascinated with the tiny Tupperware Midgets I have, and tied that to the cups in this investigation. He gets 3-4 midgets of juice with all of his supplements in it. One day my husband went to pour them into his normal sippy style cup and David said "Want this one?" and pointed to the midget. Then he said "cup #1 has...popcorn", Troy (my husband) poured another one and David grabbed it and said "cup #2 has... cinnamon" quickly drinking each one and awaiting the next... it's worked for months now!
Anyway- maybe some else out there has a child that makes unique abstract correlations with stuff and can find this useful?
David watches Wild Kratts and one brother wears blue and the other wears green. David's blankets are blue and his brothers are green...so their blankets are Martin and Chris (Kratt). See what I mean about abstract, it totally loses me and Troy or our childcare if we aren't paying attention. Some we still don't understand... but he's making or seeing some kind of connection...fascinating. I want to learn how he thinks more every day, so I can understand.
You learn something new everyday...
We have really started hitting occupational therapy hard this summer for David.
We are seeing someone every other Friday. We've added someone every Monday and now we've started every Tuesday as well.
This new therapist (Tuesdays) is great, she works out of her home. She was great with David and had a lot of wonderful info to offer me.
Namely, she suggested a book called Raising a Sensory Smart Child - it's a great tool for parents and how to learn about sensory processing disorders prevalent in children on the spectrum. I love this book! I'm learning so much about proprioceptive, vestibular and all the other senses and how they work with each other.
There is a sensory questionnaire to help determine your child's needs and how to find a therapist to help. It teaches the difference between hyper sensitive and hypo sensitive. Great tips for everyday challenges in the home and ideas to help your child's "sensory diet".
I highly recommend this book.
We are now working with two occupational therapists and one physical therapist for David. They are all working together. We will be starting Integrated Listening very soon, we have decided to buy the program outright, though not all programs, just 1-2 as the OT sees fit...we can add more programs later if needed.
I am praying for a good summer, I know we will learn a lot about how to help David's sensory issues so when school comes we have a calmer more attentive child.
I am also looking at ways to recreate a few of the items that the OT uses that David responds so well to. He loves the industrial size sit n' spin someone made for the center there, and I can't find directions on-line. I know my family will help me build one.
I am also looking at a way to recreate the bubble/light tower and ways to control programmable Christmas lights for David.
Once I have directions and lists of materials I will gladly post here if you desire to create a sensory section for your child to relax at home. We already have a "cocoon" swing, but David loves the lycra (layered) swing at the OT...she made it and will give me the materials list and knot instructions to make one for home.
More to come...
We are seeing someone every other Friday. We've added someone every Monday and now we've started every Tuesday as well.
This new therapist (Tuesdays) is great, she works out of her home. She was great with David and had a lot of wonderful info to offer me.
Namely, she suggested a book called Raising a Sensory Smart Child - it's a great tool for parents and how to learn about sensory processing disorders prevalent in children on the spectrum. I love this book! I'm learning so much about proprioceptive, vestibular and all the other senses and how they work with each other.
There is a sensory questionnaire to help determine your child's needs and how to find a therapist to help. It teaches the difference between hyper sensitive and hypo sensitive. Great tips for everyday challenges in the home and ideas to help your child's "sensory diet".
I highly recommend this book.
We are now working with two occupational therapists and one physical therapist for David. They are all working together. We will be starting Integrated Listening very soon, we have decided to buy the program outright, though not all programs, just 1-2 as the OT sees fit...we can add more programs later if needed.
I am praying for a good summer, I know we will learn a lot about how to help David's sensory issues so when school comes we have a calmer more attentive child.
I am also looking at ways to recreate a few of the items that the OT uses that David responds so well to. He loves the industrial size sit n' spin someone made for the center there, and I can't find directions on-line. I know my family will help me build one.
I am also looking at a way to recreate the bubble/light tower and ways to control programmable Christmas lights for David.
Once I have directions and lists of materials I will gladly post here if you desire to create a sensory section for your child to relax at home. We already have a "cocoon" swing, but David loves the lycra (layered) swing at the OT...she made it and will give me the materials list and knot instructions to make one for home.
More to come...
Eating and nutrition for David
It's been a rough road this last few years. David is a very picky eater, eating mostly white or brown foods...which equals tons of carbs. You weren't able to tell before, but since the Enhansa worked so well, he's put on the weight.
Dr was concerned about him getting more protein, and preferably not soy. She was going to send me some samples to try and the manufacturer didn't have any. So, I ventured out on my own to try and get him more protein.
I tried Silk's Fruit & Protein, which David loved...downside to that was TOO MUCH SUGAR, 22 grams to be exact...oops! When you are treating yeast, you really have to watch the sugar intake. Finally, I broke down and ordered a full size of what the Dr had been recommending...Thorne Research's Vegalite. They make it in a vanilla or chocolate powder. I of course ordered chocolate, we add it to Pure Almond Milk (original or vanilla).
I use a hand blender to mix it thoroughly and David loves it. He does a full serving (10 oz of fluid) and 1 scoop of the powder...he gets 23g of protein and only 1 g of sugar.
I also made an "executive decision" and went back to canned veggies with no salt instead of frozen. David loves veggies, but apparently only canned, because he wouldn't touch the frozen ones and we were wasting money.
I'm still concerned about the possible aluminum connection, but I am thoroughly rinsing all the veggies when they come out of the can and storing leftovers in an airtight container.
If his aluminum count goes up... we'll truly know the culprit.
David enjoys Ian's chicken nuggets 3-4 nights a week now, and waffle the rest... but ALWAYS with veggies. Tonight he decided that he wanted me to mix carrots, peas and green beans for him to enjoy. I was glad to do it...
Dr was concerned about him getting more protein, and preferably not soy. She was going to send me some samples to try and the manufacturer didn't have any. So, I ventured out on my own to try and get him more protein.
I tried Silk's Fruit & Protein, which David loved...downside to that was TOO MUCH SUGAR, 22 grams to be exact...oops! When you are treating yeast, you really have to watch the sugar intake. Finally, I broke down and ordered a full size of what the Dr had been recommending...Thorne Research's Vegalite. They make it in a vanilla or chocolate powder. I of course ordered chocolate, we add it to Pure Almond Milk (original or vanilla).
I use a hand blender to mix it thoroughly and David loves it. He does a full serving (10 oz of fluid) and 1 scoop of the powder...he gets 23g of protein and only 1 g of sugar.
I also made an "executive decision" and went back to canned veggies with no salt instead of frozen. David loves veggies, but apparently only canned, because he wouldn't touch the frozen ones and we were wasting money.
I'm still concerned about the possible aluminum connection, but I am thoroughly rinsing all the veggies when they come out of the can and storing leftovers in an airtight container.
If his aluminum count goes up... we'll truly know the culprit.
David enjoys Ian's chicken nuggets 3-4 nights a week now, and waffle the rest... but ALWAYS with veggies. Tonight he decided that he wanted me to mix carrots, peas and green beans for him to enjoy. I was glad to do it...
Saturday, June 16, 2012
Aluminum Be Gone!
Big celebration on Thursday...we went from 10 in aluminum to ZERO. We have conquered the aluminum in David's system.
We are continuing to focus on arsenic and will do the same thing we have been doing with the suppositories and glutathione precursors to help David's body eliminate the arsenic as well.
Die off reactions from the yeast seem to be irritability and hyperactivity... some days are better than others. We'll continue with a new medication that's stronger after this Nystatin runs out...and then retest stool to see where we stand (in about 2 months).
Dr. is really impressed with David's response to many of the treatments we have tried since November. Did I mention all the intestinal issues/swelling have disappeared since we were on the Enhansa- it worked!
David's a hefty 72 lbs. now and we are tackling a lot of OT this summer to help his core strength and fine/gross motor skills. Praying we will start ILS (Integrated Listening System) in July with an additional OT... to help get things ready for school.
We have lots of reading homework to do through the summer, fine/gross motor and sensory stuff to work on... it'll be a busy few months.
But when is it not busy?
We are continuing to focus on arsenic and will do the same thing we have been doing with the suppositories and glutathione precursors to help David's body eliminate the arsenic as well.
Die off reactions from the yeast seem to be irritability and hyperactivity... some days are better than others. We'll continue with a new medication that's stronger after this Nystatin runs out...and then retest stool to see where we stand (in about 2 months).
Dr. is really impressed with David's response to many of the treatments we have tried since November. Did I mention all the intestinal issues/swelling have disappeared since we were on the Enhansa- it worked!
David's a hefty 72 lbs. now and we are tackling a lot of OT this summer to help his core strength and fine/gross motor skills. Praying we will start ILS (Integrated Listening System) in July with an additional OT... to help get things ready for school.
We have lots of reading homework to do through the summer, fine/gross motor and sensory stuff to work on... it'll be a busy few months.
But when is it not busy?
Thursday, May 24, 2012
That little monster...YEAST!
Has finally reared it's ugly head in David. Got the results last week after we sent in stool sample to see if we needed to continue Enhansa. Inflammation was all gone, so Enhansa worked. David had been on a 5 day course of Zithromax for a long time cough he had and that is probably what gave us prime conditions for the yeast. It's LIGHT, but we are attacking it right away with a month of Nystatin and then a month of another drug IF it is covered under insurance (its super expensive).
What we are not looking forward to is die-off reactions from David: aggression, irritability, hyperactivity- if anything...praying for the later. I was told to give him activated charcoal on an empty stomach if we start seeing these behaviors and ibuprofen if he complains of cramps or headaches.
This is a 30 day treatment. We will be going in for another blood draw and glutathione push in a few weeks- hoping that goes well. Will check his aluminum and arsenic levels and see if cutting out a lot of the juice and apples has helped or not.
Hardest thing about this yeast is that it feeds on sugar. All David eats is carbs! That's not too good.
What we are not looking forward to is die-off reactions from David: aggression, irritability, hyperactivity- if anything...praying for the later. I was told to give him activated charcoal on an empty stomach if we start seeing these behaviors and ibuprofen if he complains of cramps or headaches.
This is a 30 day treatment. We will be going in for another blood draw and glutathione push in a few weeks- hoping that goes well. Will check his aluminum and arsenic levels and see if cutting out a lot of the juice and apples has helped or not.
Hardest thing about this yeast is that it feeds on sugar. All David eats is carbs! That's not too good.
Last minute decisions...
Well...we decided on the day that David was to start Tomatis in Bellevue, not to do it. Why you ask? Well, I started the quest to file a benefit advisory to help insurance pay for the treatment, which was denied as "investigational procedure". So I was in the middle of working on my appeal.
Since Tomatis is new to the States (about 10 years) and there isn't a lot of research stateside for it's use, I started to email Dr's that were on the research studies that I did find for a letter of support for the Tomatis program to try and build my appeal.
I was actually contacted by one of those doctors! He took time out to contact on Monday and ask quite a few questions regarding how David was referred for that program specifically, who diagnosed him etc. This Dr is professor at Howard University in Washington DC, he has been researching the various listening programs out there for over a decade and specializes in auditory and sensory processing disorders...so he knows his stuff.
He said that across the board ALL listening programs will provide you a calmer child. That the goals we were given were not realistic. He said once you have a calmer child, the OT/PT and Speech therapists get more quality time out of your child and THAT is where the benefits and goals met comes from. He felt that we would achieve the same results from a listening program with our current OT and that insurance would pay no problem.
I am thankful for the call at the last minute. I would do anything for my son, to help him grown and learn and achieve more socially. We are going to hit OT hard this summer with weekly sessions and get him specialized sensory help as well.
Can't wait...
Since Tomatis is new to the States (about 10 years) and there isn't a lot of research stateside for it's use, I started to email Dr's that were on the research studies that I did find for a letter of support for the Tomatis program to try and build my appeal.
I was actually contacted by one of those doctors! He took time out to contact on Monday and ask quite a few questions regarding how David was referred for that program specifically, who diagnosed him etc. This Dr is professor at Howard University in Washington DC, he has been researching the various listening programs out there for over a decade and specializes in auditory and sensory processing disorders...so he knows his stuff.
He said that across the board ALL listening programs will provide you a calmer child. That the goals we were given were not realistic. He said once you have a calmer child, the OT/PT and Speech therapists get more quality time out of your child and THAT is where the benefits and goals met comes from. He felt that we would achieve the same results from a listening program with our current OT and that insurance would pay no problem.
I am thankful for the call at the last minute. I would do anything for my son, to help him grown and learn and achieve more socially. We are going to hit OT hard this summer with weekly sessions and get him specialized sensory help as well.
Can't wait...
Thursday, April 19, 2012
Learning how to listen...
We had our consult today with Liliana Sacarin. She adores David. She was really good with him. She had him listen on the headphones and pressed the "sound button" then he got to press the button for her! He really liked that. He also enjoyed the microphone where he could talk and hear himself loud and clear in the headphones!
David will start the Tomatis Listening method on Monday May 21st from 4-6pm.
Dr. Sacarin and I sat down and made goals while David played.
1) Improved Muscle Tone Regulation (fine and gross motor, ability to ride a bike, catching & throwing balls)
2) Improved Eye Contact
3) Improved Ability to listen & follow directions- as opposed to the "immature" way he will repeat the direction he is given to help him process it before he goes and does the task.
4) Decreased sensitivity to foods. His tolerance to try new foods should increase.
5) Pain threshold will DECREASE- may start to complain more when he isn't feeling well or bumps into something. (*** side note: David face planted in the toy room in front of a young man receiving his listening treatment...he said "Wow, you have a strong son, I would have cried so hard")
6) Improved Ability to express emotion (longer sentences & more talking)
7) Communication! An exchange of conversation (I will cry when this happens)
8) Social Interaction (Playing WITH peers, not parallel play)
9) General Maturity will start to occur
I can't express the excitement to get started. I have a wonderful case manager at my insurance company who is helping get things in order to POSSIBLY have insurance play a part in paying for this treatment. That would be such a blessing! Dr. Sacarin allows payment plans which is also a blessing. So we are able to get started in May instead of waiting for July when my health savings starts over.
Will keep you posted on more milestones as they occur...
We have one more week at B12 shots every other day...then we go daily!
I feel in my gut we are on the verge of a beautiful breakthrough. Can't wait for God to continue to glorify himself in the changes in our son!
David will start the Tomatis Listening method on Monday May 21st from 4-6pm.
Dr. Sacarin and I sat down and made goals while David played.
1) Improved Muscle Tone Regulation (fine and gross motor, ability to ride a bike, catching & throwing balls)
2) Improved Eye Contact
3) Improved Ability to listen & follow directions- as opposed to the "immature" way he will repeat the direction he is given to help him process it before he goes and does the task.
4) Decreased sensitivity to foods. His tolerance to try new foods should increase.
5) Pain threshold will DECREASE- may start to complain more when he isn't feeling well or bumps into something. (*** side note: David face planted in the toy room in front of a young man receiving his listening treatment...he said "Wow, you have a strong son, I would have cried so hard")
6) Improved Ability to express emotion (longer sentences & more talking)
7) Communication! An exchange of conversation (I will cry when this happens)
8) Social Interaction (Playing WITH peers, not parallel play)
9) General Maturity will start to occur
I can't express the excitement to get started. I have a wonderful case manager at my insurance company who is helping get things in order to POSSIBLY have insurance play a part in paying for this treatment. That would be such a blessing! Dr. Sacarin allows payment plans which is also a blessing. So we are able to get started in May instead of waiting for July when my health savings starts over.
Will keep you posted on more milestones as they occur...
We have one more week at B12 shots every other day...then we go daily!
I feel in my gut we are on the verge of a beautiful breakthrough. Can't wait for God to continue to glorify himself in the changes in our son!
Saturday, April 14, 2012
Learning something new...
I started taking David to OT this Friday. I decided to do outside OT because David doesn't get much time with his OT at school and we know he needs more help with motor skills.
Learned about 2 things to help my son.
David responds well to squeezes. Not full body hugs with pillows but firm grips with both hands on his arms and legs.
I never knew.
Now I know and we will do this at home at least 4-5 times a day to help him "load his nervous system".
David likes Theraputty. Hide marbles in it and he gets a fine motor workout digging them out!
Already ordered some on-line.
Can't wait to learn about more ways to help my boy in two weeks.
I just need to know what to do. Show me and I'll do it.
Wednesday, April 11, 2012
Something else...
So...we finally made it in to the doctor on March 29th for David's blood draw and IV glutathione. It was interesting, but we got it done. David was very calm after the glutathione, which I hear is very common.
Then we wait for 1 week for the results.
During that time I went to David's school for a conference with his teacher and OT/Speech Therapists. They have discovered that David is a "sensory seeker". David has not been able to focus, especially during group time, he would tip back and fall over in his chair consistently which would distract the class. He is also not ready for pen/paper work or scissors, he's still too far behind on the much needed fine motor skills to operate these simple items. So, the teachers are working on getting him to focus and strengthening his fine motor skills though games to hold his interest.
The therapists tried a few things and found that if they have David sit on a vibrating chair pad AND wear headphones with an MP3 player playing classical music that David would focus better.
Interesting... one would think that might be more distracting.
Well, one week after the blood draw I went back to visit David's doctor for the results and talk about our battle plan as it continues.
We were focused on that aluminum in his system that was so high (10) before... it was down to 6! The arsenic in his system had stayed the same though and the fractionated urine test showed that it was a HIGH amount (out of range) of inorganic (toxic) arsenic. Where is this arsenic coming from? More than likely, fruit juice and organic apples...I'm sad to say. I'm going to have to start juicing from scratch with dark berries to provide the "base" we use for giving David all his supplements during the day...and no more juice box in his school lunch.
If it's not one thing...it's another, right?
Ok- so we put David on glutathione suppositories every night since we found out two months ago about that high amount of aluminum. We also sent in that urine test because we wanted to know more about the arsenic. We have had David on B12 shots every 3rd day for quite awhile...with small changes but nothing truly significant.
Well... the test that we took recently showed an elevated MCV, which the doctor says can show up when the body is lacking B12 and Methyl folate... so we needed to do more.
Kids with autism are kind of like onions... there are all these layers...and those layers are revealed by doing testing (blood draws, consults with PT/OT/Speech/Sensory etc) only then can we truly start to understand what is going on in our child's bodies... because autism is different in every child.
So- we will do B12 shots every other night for 2 weeks and then move to every night until further notice. We are also increasing the Methyl Folate (5-MTHF) from 1 mg to 2mg. I'm excited to see changes... we are moving in the right direction, I know we are.
I was so sad to hear that David is the kid who needs the most attention in his class from the teachers/para-educators... how hard is that to hear as a parent? But then...a glimmer of hope... because I strongly believe that God has a major hand in my child's life and with me and Troy being his parents.
I told David's doctor about the findings at David's school with his teachers and she immediately recommended the Tomatis method, low and behold one of 8 specialists happens to be right up the road from our doctors office.
I am still learning about this method, but I am also fascinated and can not wait to report on the changes we will see in David.
Basically, they're 2 hour "listening" sessions that retrain the brain to sift through unnecessary stimuli. Some of our kids are overwhelmed because of the barrage of stimuli...right? This helps them learn more effectively and sort thru items that would normally distract them so they can focus better. Listening effectively, whodathunk?
Check out: www.sacarin.com there is also a link at the bottom (for some light reading) on the research conducted with the Tomatis method in children with developmental delay and autism.
Stay tuned...
Then we wait for 1 week for the results.
During that time I went to David's school for a conference with his teacher and OT/Speech Therapists. They have discovered that David is a "sensory seeker". David has not been able to focus, especially during group time, he would tip back and fall over in his chair consistently which would distract the class. He is also not ready for pen/paper work or scissors, he's still too far behind on the much needed fine motor skills to operate these simple items. So, the teachers are working on getting him to focus and strengthening his fine motor skills though games to hold his interest.
The therapists tried a few things and found that if they have David sit on a vibrating chair pad AND wear headphones with an MP3 player playing classical music that David would focus better.
Interesting... one would think that might be more distracting.
Well, one week after the blood draw I went back to visit David's doctor for the results and talk about our battle plan as it continues.
We were focused on that aluminum in his system that was so high (10) before... it was down to 6! The arsenic in his system had stayed the same though and the fractionated urine test showed that it was a HIGH amount (out of range) of inorganic (toxic) arsenic. Where is this arsenic coming from? More than likely, fruit juice and organic apples...I'm sad to say. I'm going to have to start juicing from scratch with dark berries to provide the "base" we use for giving David all his supplements during the day...and no more juice box in his school lunch.
If it's not one thing...it's another, right?
Ok- so we put David on glutathione suppositories every night since we found out two months ago about that high amount of aluminum. We also sent in that urine test because we wanted to know more about the arsenic. We have had David on B12 shots every 3rd day for quite awhile...with small changes but nothing truly significant.
Well... the test that we took recently showed an elevated MCV, which the doctor says can show up when the body is lacking B12 and Methyl folate... so we needed to do more.
Kids with autism are kind of like onions... there are all these layers...and those layers are revealed by doing testing (blood draws, consults with PT/OT/Speech/Sensory etc) only then can we truly start to understand what is going on in our child's bodies... because autism is different in every child.
So- we will do B12 shots every other night for 2 weeks and then move to every night until further notice. We are also increasing the Methyl Folate (5-MTHF) from 1 mg to 2mg. I'm excited to see changes... we are moving in the right direction, I know we are.
I was so sad to hear that David is the kid who needs the most attention in his class from the teachers/para-educators... how hard is that to hear as a parent? But then...a glimmer of hope... because I strongly believe that God has a major hand in my child's life and with me and Troy being his parents.
I told David's doctor about the findings at David's school with his teachers and she immediately recommended the Tomatis method, low and behold one of 8 specialists happens to be right up the road from our doctors office.
I am still learning about this method, but I am also fascinated and can not wait to report on the changes we will see in David.
Basically, they're 2 hour "listening" sessions that retrain the brain to sift through unnecessary stimuli. Some of our kids are overwhelmed because of the barrage of stimuli...right? This helps them learn more effectively and sort thru items that would normally distract them so they can focus better. Listening effectively, whodathunk?
Check out: www.sacarin.com there is also a link at the bottom (for some light reading) on the research conducted with the Tomatis method in children with developmental delay and autism.
Stay tuned...
Wednesday, February 8, 2012
My nose...
Just a quick blog about my nose...because I'm feeling sorry for myself.
Pity Party!
This is the third time that David has slammed his head into mine (unknowingly) and crushed my poor nose. It brings tears to my eyes every time.
Luckily, it's not broken- just very sore. This kid has some power behind him!
What hurts more is that David laughs because he doesn't empathize very well- he doesn't understand his actions caused me pain.
I can stop him and say, "David can you say that you are sorry to Mommy, you hurt her nose" (as he is rubbing his head from the accident).
Then I ask him to kiss it. He lays his lips on my nose...no smack or pucker...just contact.
I love my boy.
Pity Party!
This is the third time that David has slammed his head into mine (unknowingly) and crushed my poor nose. It brings tears to my eyes every time.
Luckily, it's not broken- just very sore. This kid has some power behind him!
What hurts more is that David laughs because he doesn't empathize very well- he doesn't understand his actions caused me pain.
I can stop him and say, "David can you say that you are sorry to Mommy, you hurt her nose" (as he is rubbing his head from the accident).
Then I ask him to kiss it. He lays his lips on my nose...no smack or pucker...just contact.
I love my boy.
Sunday, February 5, 2012
Constantly changing...
Just wrapped up another visit follow-up for David with his new Dr. She asks tons of questions about how he's doing and adjusts supplements accordingly. We talked about all the "white & brown" food he eats- the pancakes, waffles and french toast. It's a concern. We need to work on adding more items to his diet...I've been trying! Argh.
I will start taking David to additional OT starting February 24th and will also talk with a nutritionist to see what tricks and tactics we can use. It's hard to introduce something and have him waste it...constantly.
David loves veggies and fruits- but we've been doing canned with no salt. We need to switch to frozen as cans can have BPA in them and possibly aluminum too.
Aluminum- another concern. From our whole blood mercury/lead test, we found David has a very HIGH amount of aluminum in his system. We know that this is in some/most immunizations...so it could be from that, it also ones from cookware and stuff too. I have no idea what my huge Costco cookie sheets are made of...so we'll need to buy new ones, since I bake so often on them.
David also has a good amount of arsenic in his system too. There are two forms of arsenic: organic an inorganic, the latter being the dangerous stuff. So we are doing a fractionated arsenic test (pee in a cup) to determine what type it is.
Did you know that arsenic can be found in chicken and apples! Learn something new everyday!
We are going after that aluminum right away: Aluminum is a neurotoxin and can affect his development. We will start giving David glutathione precursors: Glycine, NAC and Glutamine to help his body hopefully rid itself of the aluminum. Oh, did I mention we will also have to do nightly glutathione suppositories- joy.
I don't mind, if it will help David in the long run and get his body that much closer to healing itself on it's own. We follow-up in 8 weeks with another blood draw that I'm not looking forward to, as we are not drawing at the normal lab and with the normal person we are used to. While we do the blood draw at the Dr's office, they will do an IV push of glutathione as well to boost that attempt to rid the body of the aluminum.
Momma's going to need valium for that blood draw day...and I get to load David up on GABA and bring the iPad in hopes of that much more distraction during the draw. This is really the hardest part thus far for me.
We will follow-up one week later for the blood test results to determine the next course of action. If the aluminum in the blood goes down, we will continue with the precursors and possible IV pushes of glutathione... if they count does not change we will have to look at possible IV chelation, which at this point feels impossible since blood draws are so difficult.
We may also increase his Methyl folate and B12 to every other night instead of every three days.
Stay tuned, draw in on 3/29... results on 4/4!
I will start taking David to additional OT starting February 24th and will also talk with a nutritionist to see what tricks and tactics we can use. It's hard to introduce something and have him waste it...constantly.
David loves veggies and fruits- but we've been doing canned with no salt. We need to switch to frozen as cans can have BPA in them and possibly aluminum too.
Aluminum- another concern. From our whole blood mercury/lead test, we found David has a very HIGH amount of aluminum in his system. We know that this is in some/most immunizations...so it could be from that, it also ones from cookware and stuff too. I have no idea what my huge Costco cookie sheets are made of...so we'll need to buy new ones, since I bake so often on them.
David also has a good amount of arsenic in his system too. There are two forms of arsenic: organic an inorganic, the latter being the dangerous stuff. So we are doing a fractionated arsenic test (pee in a cup) to determine what type it is.
Did you know that arsenic can be found in chicken and apples! Learn something new everyday!
We are going after that aluminum right away: Aluminum is a neurotoxin and can affect his development. We will start giving David glutathione precursors: Glycine, NAC and Glutamine to help his body hopefully rid itself of the aluminum. Oh, did I mention we will also have to do nightly glutathione suppositories- joy.
I don't mind, if it will help David in the long run and get his body that much closer to healing itself on it's own. We follow-up in 8 weeks with another blood draw that I'm not looking forward to, as we are not drawing at the normal lab and with the normal person we are used to. While we do the blood draw at the Dr's office, they will do an IV push of glutathione as well to boost that attempt to rid the body of the aluminum.
Momma's going to need valium for that blood draw day...and I get to load David up on GABA and bring the iPad in hopes of that much more distraction during the draw. This is really the hardest part thus far for me.
We will follow-up one week later for the blood test results to determine the next course of action. If the aluminum in the blood goes down, we will continue with the precursors and possible IV pushes of glutathione... if they count does not change we will have to look at possible IV chelation, which at this point feels impossible since blood draws are so difficult.
We may also increase his Methyl folate and B12 to every other night instead of every three days.
Stay tuned, draw in on 3/29... results on 4/4!
Friday, February 3, 2012
A little weight...
 |
| this is just a few months ago in October |
 |
| Just today- we started Enhansa about 3-4 weeks ago. |
I'm actually going to look into nutrition therapy, and ways or tricks to introduce new foods to him. It's so hard and frustrating when you spend the money on a new GFCF item and they take one sniff and won't touch it. I do all of my own baking for David but full meals are harder. He was doing Ian's chicken nuggets for awhile, then just stopped. He won't eat grilled "cheese" sandwiches any more and won't let me make him any kind of sandwich...all he wanted for lunch was his crispy bar- now he won't even eat that!
Well, he's always been thin, and very tall. We started a new supplement a few weeks back and we have seen immediate results. It's called Enhansa, check out the link if you want- no we are not being paid to mention it. It's a pure curcumin supplement to enhance absorption... all we know is that since we've been on it...David has gained weight! We noticed he has a "little gut" which you would get from eating carbs... it's actually encouraging. It's prescribed by our new Dr, but they offer a chart on-line for directions to self administer as well. I'm very impressed so far. I will watch him though, as that seemed like a lot of weight in such a short time- Dr isn't concerned at this time. His body is starting to retain/absorb calories, vitamins and minerals too- this is a good sign.
Just thought I'd share... see the before and after pics (sorry about the blurry after picture, David was upset by the flash and would cry)
Sunday, January 8, 2012
A vision...
Well, here we are in the New Year. I'm not a crazy blogging Mom, but it's nice to get an "Are you going to update your blog soon?" from a fellow mother. I love to know I'm being read and maybe helping a few people out there with what we have been through so far.
I'm not big on New Years Resolutions, but I'm praying for good changes and the strength to be a part of something bigger for our church and eventually community.
The Lord has given me a vision, a passion for our fellow parents with special needs kids. I hope someday to start a support group for parents in our church with kids that are special needs to support each other and pray for each other through rough times. I think that when things are good for some others may be going through a hard time and we can lift up and encourage one another in which ever side we are on at the time. Sometimes, "regular" parents may not understand some of the things we struggle with day to day, especially if they are not exposed to those with special needs. How little things are really a BIG deal for us. I'm not saying there aren't parallels for all parents, and I'm not trying to make special needs parents more "special"... parenting is hard enough in itself...right?
We have a wonderful loving church family and all of our volunteers that help with the kids are really great, they are open to learning about the children who attend that have special needs and how to interact with them... it's a wonderful thing to have.
I'd eventually like to open that support group up to our community also... but first things first. I have learned in my years with kids that I can NOT be supermom, it just is not healthy. I have to ask for help. I know I can't get this group up and running by myself, I have a vision for it- but I know it can be much more...so I pray, if someone is out there that may have a heart for this as well, that we can team up and take different aspects of making this vision come true.
I know my pastors are behind me, I know that I would like to make this a quarterly group (for the time being), I know I want to have good childcare available and that we will use the church and share a meal together. I want to get to know each other first, then bring in folks to talk about certain topics like biomedical/naturopathic treatments, GFCF diet, B12 injections, things like that...for folks that may enjoy the info and just want to know more- I'd take that time to get suggestions for things families want to hear about. I would need help gathering resources, maybe creating a newsletter, maybe sponsors or donors (for when we support the community) to create a grant for families that need extra help with supplements or treatments that can't afford those things...it is all just so exciting!!
Monday, January 2, 2012
I'm happy to report...changes!
What a great week so far, and it's only Monday.
Got some great feedback from a teacher/Mom at our church that David's verbalization and response to questions being asked has really improved...we are noticing that as well at home.
The methyl-folate was added starting 12/22 and things have gradually started changing. David is more verbal, and more vocal, which can be hard because things seems to upset or frustrate him a bit more. It is to be expected though, since the methyl-folate is helping the vitamin B12 do it's job! Basically, neurons are being repaired and David is getting more stimulation, which can be more overwhelming...hence the vocalization (screaming or stimming (hand flapping) and increased rocking.
So, small downside is David throws himself down and grunts/screams/vocalizes when he doesn't like something he's being asked to do... we just encourage him to use words to help him and tell us what is upsetting him and help him work through it.
It's a change that may not be desired but I will take it, because along with that are wonderful things...like the following conversation.
David:Momma will you sit and talk with me?
Me: Sure...what should we talk about?
David: Curious George.
Me: Ok, let's talk about Curious George...is he a rhinoceros?
David: No!
Me; Is he a monkey?
David: Yes (with such enthusiastic inflection)
I still need to prompt the conversation, but we could talk all day.
I look forward to more of these conversations and the balance to tip to where I won't have to prompt him to talk, but that I won't be able to shut him up =0)
My boy is also singing a lot...he's memorizing songs and sings them while he is playing. To the Moon (from Sid the Science Kid) and a song about decay are his favorites right now. I'm not a big fan of Sid the Science Kid except that there is a lot to learn (thank you PBS) and that seems to override the irritation I have with Gerald (one of Sid's friends)... and the show in general as it seems a bit pretentious.
Today, David shared that he didn't like an item he was given for snack by saying "No, I don't like those." and pointing...that's new because instead he would normally just leave it untouched on the plate!
Also, we have had quite a few weeks of independent potty success! David wants to use the potty on his own, with the door shut for privacy. I encourage this, but we have to continually check on him as he likes to lay on the floor and play. We've had to put the hand soap up out of the way- as we will come in and it is empty...all over David's hair, face and hands, not to mention the floor. David still needs help following through with pulling up undies, pants and washing his hands...but we are getting there. I recently added PECS in the bathroom for help remembering the steps for potty and one in front of the sink for hand washing... I know we'll get there.
What is wonderful, is that this potty thing just happened...basically David started in on his own and we are so grateful for that... now we just gotta get all the steps down.
 |
| Checking out his new drumsticks on "can drums" we made... |
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| A new fidget toy to help him at school... |
 |
| Tinkertoys! I loved these when I was younger... |
Got some great feedback from a teacher/Mom at our church that David's verbalization and response to questions being asked has really improved...we are noticing that as well at home.
The methyl-folate was added starting 12/22 and things have gradually started changing. David is more verbal, and more vocal, which can be hard because things seems to upset or frustrate him a bit more. It is to be expected though, since the methyl-folate is helping the vitamin B12 do it's job! Basically, neurons are being repaired and David is getting more stimulation, which can be more overwhelming...hence the vocalization (screaming or stimming (hand flapping) and increased rocking.
So, small downside is David throws himself down and grunts/screams/vocalizes when he doesn't like something he's being asked to do... we just encourage him to use words to help him and tell us what is upsetting him and help him work through it.
It's a change that may not be desired but I will take it, because along with that are wonderful things...like the following conversation.
David:Momma will you sit and talk with me?
Me: Sure...what should we talk about?
David: Curious George.
Me: Ok, let's talk about Curious George...is he a rhinoceros?
David: No!
Me; Is he a monkey?
David: Yes (with such enthusiastic inflection)
I still need to prompt the conversation, but we could talk all day.
I look forward to more of these conversations and the balance to tip to where I won't have to prompt him to talk, but that I won't be able to shut him up =0)
My boy is also singing a lot...he's memorizing songs and sings them while he is playing. To the Moon (from Sid the Science Kid) and a song about decay are his favorites right now. I'm not a big fan of Sid the Science Kid except that there is a lot to learn (thank you PBS) and that seems to override the irritation I have with Gerald (one of Sid's friends)... and the show in general as it seems a bit pretentious.
Today, David shared that he didn't like an item he was given for snack by saying "No, I don't like those." and pointing...that's new because instead he would normally just leave it untouched on the plate!
Also, we have had quite a few weeks of independent potty success! David wants to use the potty on his own, with the door shut for privacy. I encourage this, but we have to continually check on him as he likes to lay on the floor and play. We've had to put the hand soap up out of the way- as we will come in and it is empty...all over David's hair, face and hands, not to mention the floor. David still needs help following through with pulling up undies, pants and washing his hands...but we are getting there. I recently added PECS in the bathroom for help remembering the steps for potty and one in front of the sink for hand washing... I know we'll get there.
What is wonderful, is that this potty thing just happened...basically David started in on his own and we are so grateful for that... now we just gotta get all the steps down.
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