Monday, January 28, 2008

First Round of Supplements

*Side NOTE* In May 2007, shortly after visiting with Dr. Adams for the first time, we had to pull Kynsie out of occupational therapy by it was so traumatic for her that she simply could not function. During one session, she was doing swing therapy and stopped breathing. The therapist thought she was having a seizure, but it turned out that the 1 revolution (circle) in a swing was such an intense experience for her that her body completely freaked out. At her age, she should have been able to tolerate 10 revolutions with no reaction. (Braylen could do 10 with no problem. He thought it was fun--which is normal or neurotypical) From then on, the sight of a swing sent her into cycling tantrums with genuine terror. She was out of occupational therapy for over 2 months due to the trauma. In addition, she experienced regression as a result of the trauma. Her minimal play and social advances took about 10 giant steps back. It was during this time that we experienced what I refer to as "The Shoe Episode" at the mall.

On to the Supplements
With biomedical intervention for Autism Spectrum Disorders, unfortunately results are slow. It is also VERY important to add supplements/treatments one at a time, with time in between so that you know what your child is responding to with reasonable certainty.

In addition, all kids don't respond the same (or at all) to all treatment options. As a result, to a huge degree there is a LOT of trial and error to the process. That is why it is critical to be guided by a licensed physician who is knowledgeable about biomedical/neutraceutical interventions for Autism, and who specializes in treatment of children affected by ASD. I recommend a DAN! Doctor. A regular pediatrician or a rogue parent should not be steering this ship. This is a comprehensive treatment plan that requires a knowledgeable physician, committed parents & caregivers, and therapists who are all willing to work from the same plan.

So, we started with reducing dairy. At the time, I believed this was enough...I was wrong, but we will get there in a few posts. Kids seemed somewhat better. After 2 weeks we began with probiotics. My kids experienced what is commonly referred to as a yeast die-off reaction or Herxheimer Effect. in a nutshell, this means that the probiotics got into their intestines and started kicking some yeast (fungi) butt. As the yeast began to die, it released toxins into the kids bodies. As a result, their bodies had a reaction as they tried to purge the toxins from themselves. SKIP THE NEXT PARAGRAPH IF POOP GROSSES YOU OUT!

Their reaction was explosive diarrhea for 15 days. We are talking 6-10 poop diapers per child, per day for 15 days. I seriously thought I would LOSE my mind. Now some docs suggest that this die off is indication that the body can't handle the die-off/toxin release. Others argue that it is part of the healing process and proof that the treatment is working. At any rate, we had the reaction, and then their bodies seemed to readjust and move forward. At this time we were seeing subtle improvements, but nothing exciting.

We added Zinc with no visible reaction.

Digestive enzymes caused serious diaper rash and belly discomfort and we discontinued them.


There we were 3 months into biomedical treatment, with nothing new to show for it. We were 8 months into traditional therapy with no significant progress.

The Sound of Silence

Braylen still said "Ma-Ma & Ba-Ba", but nothing else. Not one more word. He played with his toys some, but was still visibly behind. He did enjoy playing at church and was very social. This was never a problem for him.

Kyan said nothing, and rarely babbled. He stimmed ALOT and did not play with toys functionally at all, except in therapy. And then, he fussed and cried the whole time. In addition, he tantrumed ALOT. Kyan melted down during 'transitions'. A transition can be as simple as changing rooms, and as dramatic as going outside. Something as basic as laying him down to change his diaper caused a MASSIVE melt-down, EVERY TIME. Any kind of change threw him into a tailspin. He just felt so uncertain in his own body that anything remotely different sent him right over the edge. Kyan rarely responded when we called his name.

Kynsie said no words, and did not babble either. She wandered aimlessly around and did not play with toys. She simply had no interest. When we tried to encourage her to play or to engage with us or with her therapists, she screamed and ran away. She had no interest in age-appropriate play or socialization. She just stimmed all of the time--rocking, bouncing on her bottom, spinning, flapping her arms...over and over and over. She had MAJOR melt-downs with transitions too. If we went anywhere different, she would LOSE her mind. She could not handle new places, new people, or any variance from the norm. We tried church several times, and she would just lose it as soon as we got there. She would cry and cry until she began refluxing, and then it would hurt...more crying...more reflux...until we were paged to come get her. We had tried to get her off Prevacid several times over the previous 6 months with no success. The acid reflux was just too much. When we called her name, she did not respond. I actually had begun to worry that she could not hear.

By Mid-July, I was on the verge of a nervous breakdown. I can say that now, but then I couldn't even think it. I was afraid to. I was afraid that if I admitted my fear and my utter lack of control over the 'situation', maybe then my worst nightmare would come true. Maybe I would wake up in the 'crazy house' or something. I know that sounds dramatic, but I was at my end emotionally, physically, mentally. I spent night after night researching Autism treatments until 1am trying to find something that would help our children. Life was swallowing me whole every day, and I honestly could not see our way out of this. I remember wondering if Kynsie would EVER, EVER talk. What would their lives look like? Seriously Lord, where is the purpose in all of this?

Therapy wasn't working, and neither was the biomedical treatment. It had only been a few months, but I was not sure how much more I could take. day-in, Day-out. Repeat. Day-in, Day-out, repeat. I finally talked to my friends about it (after some prodding) one night, and I totally came unravelled. I really was afraid that I was going to have a nervous breakdown, but then what? Who would take care of my babies then? It was truly a hopeless time.


Biting the Bullet
I gave the shots. So, I held out on the B-12 shots until July. They were actually getting close to expiring before I decided to bite the bullet and go for it. It wasn't so bad, and we all survived. 3 days later, I gave them again. 3 days later...and so on. Then something CRAZY happened. If it had not happened in my own home, I promise you I would not believe it. 2 weeks to the day after their first shot, Braylen started repeating words we would say to him. Within 1 month from the first B-12 shot, Braylen had 25-50 new words. It is important to mention that nothing else in their diet, medicine, therapy, routine--NOTHING else changed. His therapist was rejoicing and urged me to keep doing "whatever it is you're doing at home". Also, I should add that Braylen does not have Autistic Spectrum Disorder. He has some mild developmental delays (resulting from prematurity) and some lingering issues as a result of vaccines, but he still responded dramatically to B-12.

Braylen wasn't the only one with dramatic results. Kynsie who had been spending 90% of her day stimming had abruptly stopped. She suddenly spent less than 10% of her day stimming, which was HUGE. In addition, she began to socialize with us and with her therapists. She went from running from them and screaming at them, to touching their arms, approaching them for play, and smiling at them. The therapists were floored. There were no new words, but maybe we were on to something.

Unfortunately, Kyan was a non-responder. This is typical for kids who are very YEASTY. We now know that he has a MUCH greater problem with yeast overgrowth than the other 2, but we did not know that then.

So, Braylen was off to the races with his speech by August. He was still behind his peers, but making ground every day. He knew his animals and their sounds. He knew shapes and most of his colors. AND he wanted to know the name of everything. Progress! Kynsie was opening up and really beginning to interact with other people. Again, MAJOR progress!

Kyan though, had made no improvements. I just knew that there had to be something else I could do for him. I began reading some more and became convinced that what might be required was a RADICAL change in diet. I discussed this with Dr. Adams, and he agreed that we needed to try it in hopes of bolstering Kyan's progress. So, I studied up on the Gluten-Free/Casein-Free Diet and went to the store. In case you are tempted to think that this is just a matter of removing a food or two, let me give you a link to a list of "Unacceptable Foods". If you are brave, or just curious, print this list out and go to your pantry or refrigerator. You will find few items there that are allowable on the GF/CF diet.

PLUS--All studies indicate that with a GF/CF diet, you either have to be RIGID and never allow them to cheat. If you are unwilling to be a Nazi about it, there is simply no point in bothering. 1 slip-up and you undo weeks of effort. SO I printed out this list of 'acceptable foods' and went to the store. I found rather quickly that most of the food that is on the list can not be purchased at Kroger. And then, some of it that can (Pork Cracklins & Skittles) were not exactly ideal for a toddler's diet. So I had to be creative. Everything in their present diet had to go, with the exception of fruit & veggies. I had to replace everything. This was not going to be easy or cheap.

Next time, I will tell you more about the diet; how long it takes to rid the body of Gluten & Casein; what happened after we went GF/CF; what our grocery bill now looks like; and all of the hidden sources of gluten and casein and the crazy lengths we have to go to to keep it away from our kids. Oh yeah--and I'll tell you the results of this gruelling diet.


Emily Doss said...

1. I totally hear you on the transitions. I had students at school who would panic just from entering or leaving the gym.
2. My friend's husband is on a Gluten Free Diet and it's really helped with his stomach issues/ulcers, but it's a total pain. **and he is an adult who can make his own choices.

You are totally a rock star mom and I'm glad you have this outlet. I've shown many people your blog; it is so informative. Thanks for journaling all this info!

Annaka said...

wow. I hadn't checked your blog for a while and I came back and saw all of this. I'm so sorry to read everything you guys are going through. But, I'm glad to read that it seems like you're doing the best you can and researching everything. I read through everything that I had missed all in one night. Hang in there.

Talley Images said...

wow, Im glad I check in on you guys, it sounds like you are going through so much, but Im so glad you found the B-12 shots, that sounded wonderful