*****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! |
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