Friday, December 13, 2013

One At A Time....

It's been close to a year since we drove up to New York and started down this biomedical path of supplements and probiotics. It's been a bit of a bumpy road, but it's sure as shit been better than anything else we've tried.
As I mentioned when we put James on all these different things, we did it very methodically, starting with the things we were pretty sure weren't going to cause a reaction and ending with the things that had more of a potential of some sort of side effect or die off effect. We only kept the things that benefitted him.
Probiotics are frequently known to have a die off effect when the gut is crowded with bad bacteria. This means, basically, that the good bacteria are crowding out and killing off the bad. During this period, it can make you feel kind of cruddy, but then it should ease up. The probiotic that we put James on, I had heard was a bit gentler on them. And it really seemed to make him better almost immediately. In fact, at one point I had him on a slightly different one (because the names were stupidly similar and I hadn't realized I'd gotten the wrong one), and he wasn't doing so hot. When I noticed my error and switched back to his normal one, he was markedly better.
Well, when we went in for that fasting blood test several weeks ago, he had 24 hours without any supplements. The next morning I stared at him (creepily) for a while and realized he looked better. His color was better, his face a bit less drawn. He also didn't have to rush to the bathroom as he'd been doing for the past couple of months. I decided to, again, add back his supplements one at a time and see if something was now causing a problem. (Btw I realize my tenses are all wonky...bear with me.)
Anyway, I suspected the probiotics were causing issue so I saved it for last. He just kept doing better and better, pooping as close to normal as he ever has. I didn't even want to put him back on the probiotics at this point, but I knew it wasn't a perfect experiment unless I did. So I gave him a quarter of a dose and he immediately ran to the bathroom.
Talk about killing him with kindness. Course, the doctors don't quite know what to do with this information. His labs actually show he has a need for probiotics. So there are questions of....which one do we put him on and why is he so much better without it? And why the change??
At this point though, he's gained a pound and a half, probably mostly in fluids, and has gained huge ground in his interest in food. He wants to try everything! Interestingly enough (kind of), putting your kid on a GFCF diet is super easy when they don't care about food. Gets tricky when they want all the things other kids are having. We've been having veeeeery lengthy discussions when we go other places about what is gluten free and what isn't. And who eats gluten free and who doesn't. And what will happen if he DOES eat gluten. Etc etc. Etc......etc.
Anyway, he's all into sandwiches now. So I'm, of course, soaking and dehydrating raw cashews and making nut butter so he can digest it. And he is actually eating lunch at school now and doing SO well. It's just....weird. It's definitely opening up a whole new world for us.
I talked to another mom recently about a really long term, intensive feeding program she was considering for her son, which is something we have considered at different times. Some of them are pretty hard core. And I may have given different advice before our latest experiment. But I threw out there that without figuring out WHY her kid wasn't eating, an intensive feeding program would probably be stressful, and probably would only work temporarily. Which is something that Jenny McGlothlin told us many times. It's kind of like losing weight on a juice cleanse diet. It's probably comin back!
It's wonderful to see James feeling good and having energy. We aren't really sure what's going to happen next because....I still haven't gotten The Plan. But at least we are at decent place right now where hopefully we can see some results!

On another note, it's really cold here. But it's the first time that James has felt well enough to play in the snow! He's never been able to last more than a few minutes and it pretty much always ended in tears. This year, he even outlasted Eve!!

They like to watch videos of themselves sledding. While they are sledding.




  1. Yes! I just commented on an earlier post about our success with gfcf diet for our son's SPD. We do probiotic in the morning, fish oil supplement, GABA supplement, and multi-vitamin gummy. Lots of heavy work throughout the day. The diet makes the biggest difference though. Wheat is a grass. Animals that eat grass in nature are called ruminants (think cows, goats, sheep, horses, deer, giraffes, etc...). Ruminants have a specialized 4-part stomach that can break down the grass. Milk is normally drank by baby cows, goats, sheep, etc... again with their specialized stomach.
    I noticed that you have Type 1 diabetes - an autoimmune disease -celiac is very often seen with Type 1 Diabetes, and your son might have the same condition (not just gluten intolerance, but will actually destroy the lining of the intestine). Anyway, great news is that celiac and gluten/casein-related sensory issues are very treatable. Just remove the gluten and casein. :) If kiddo had a lot of ear infections as baby, likely antibiotics killed good gut bacteria. Probiotics will help restore. Here is a link to a great book that explains everything.
    Sorry you have suffered so long. Wish more pediatricians knew about SPD, and neurological symptoms of food intolerances.

  2. Another follow up - our kiddo was recently just dx with PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). Related condition is PANDAS (Pediatric Acute-onset neuropsychiatric syndrom associated with strep) and sometimes called PITANDS (Pediatric Infection-triggered Autoimmune Neuropsychiatric Disorder). Sensory processing is actually a symptom of the underlying PANS. It is essentially brain inflammation from the body's own immune system. Have you guys tested for Lyme, strep, mono and mycoplasma? One big flag is anorexia. Treatment is 2-fold. 1. Treat infection, and 2. shore up immune system (eliminate inflammation by taking out gluten, dairy and adding probiotics and anti-inflammatories like fish oil (Omega 3). Great books called "Saving Sammy" and "Childhood Interupted." Best of luck!