Emerging...

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 are making good headway with David, he starts school next week. We'll finish Nystatin in the next week and move to fluconozole (Diflucan) to bump up the attack on the yeast remaining in his system.

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.

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.

My wonderful family... the Plumbs.

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!

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.

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.

David may drive bus someday...

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.

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...

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...

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?

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.