Life Lately

It's been a while since my last post.  A LOT has happened.  Life has been crazy, to say the least, and hard.  I have been too exhausted from hours in internet research to take the time to post anything, but tonight we had a breakthrough!

The major changes as of late have come about because of the biomedical and diet approaches we have been taking in regards to Chase's "gut".  We met with a biomedical doctor back in December after being on a gluten free/casein free/soy free diet for 7 months.  In simplified terms, I was concerned about Chase's "gut health" so we did a stool and urine test.  Those came back showing he was high in candida (yeast) and clostridia/c. diff. (bacteria) among other things.  His doctor first recommended 2 probiotics for Chase, along with Methyl B-12 injections (every 3 days), fish oil supplements, a multivitamin, grapefruit seed extract (to naturally fight yeast) and some digestive enzymes (which were chewable and Chase wouldn't take them).

So we started the probiotics (rotating every day), shots every 3 days, multivitamin (when we could remember to give it), fish oil every morning, GSE every day.  The shots were recommended to be given at night after he had fallen asleep so he wouldn't squirm or flinch.  The needle is tiny and we were also given lidocaine cream to use to numb the spot.  We found it difficult to give them without waking him up, and when we did give him the shot successfully at night he would later wake up in the middle of the night wide awake!  So we started giving them in the morning, first thing, and didn't have any problem getting him to lay still while we give it.  He is used to it now and doesn't even flinch.

We did all these supplements for 3 months and went back to the Dr. in March.  Based on the previous stool and urine tests it was recommended that we start Chase on 2 weeks of compounded liquid Diflucan (to treat the yeast) followed by 3 months of Nystatin.

We started the Diflucan and the first few days were REALLY rough.  Chase went through what is called a "die-off" period where certain behaviors (stimming, tantrums/meltdowns, sensory issues) were REALLY bad.  Then things started to level out and it was AMAZING!  Chase was talking up a storm at therapy.  He said "see mom", "I fall", lots of new words, great eye contact and focus, great receptive skills...it was the BEST and happiest he has ever been.  I began to see this road to recovery and really believe it could happen.

We finished off the Diflucan and started the Nystatin around mid-April.  I expected a few more days of "die-off" in the beginning and it seemed like that was happening.  But that "die-off" never got better.  Chase just continued to spiral out of control  He developed some major OCD tendencies we had never seen before (moving things to specific places in the house over and over and over, not stepping over thresholds of doors/rooms, weird tics and walks where he would swipe his foot behind him every few steps, obsessed over swinging in the back yard to the point it's ALL he wanted to do ALL day long!).  He was also losing eye contact again, wouldn't respond to his name at all, MAJOR stimming came back along with MAJOR tantrums over every single thing!  We were losing him again!  It was HELL.  I felt like we were back at square one.  All the hard work we had done the last 2 years was gone.

After 3 weeks on Nystatin and researching and researching and researching online and talking with LOTS of other "biomed moms" via groups I'm on on Facebook (my life savers)...I learned that Nystatin was made of a strain of Strep and can trigger PANDAS flairs in kids who are sensitive to strep strains.  I remembered several months back I had given Chase a probiotic that contained a strain of strep and he had developed some tantrum behaviors and some minor other things so we had stopped that probiotic just to be safe.  I wasn't 100% convinced at the time that he was sensitive to strep but now I was SURE!  I consulted with his doctor and we agreed to stop the Nystatin for good and give him some time to level out before going forward.

Chase's doctor wanted to do a blood draw (that was SO FUN!) next to test for some genetic mutations  (Chase is compound heterozygous MTHFR C677T & A1298C) and other deficiencies (low iron, low glutathione, low carnitine, elevated ammonia) and he was also concerned that after treating the yeast, that the bacteria took a strong hold and could be causing some of these behaviors also, so he Rx'd compounded flagyl (at $65 a pop) to take 5mL/3x a day for 2 weeks to treat the Clostridia.  Well, that went over like a turd in a punchbowl!  I tried for a week, fighting Chase, holding him down, prying his mouth open, mixing it with everything I could think of, and the child spit out every mL of that flagyl I tried to give him!  It was so frustrating!  So his Dr. then suggested trying Vancomycin instead.  I called the pharmacy to discuss this with them and they said it tasted just as bitter and nasty as flagyl and at $140 for the Rx (none of this stuff is covered by insurance btw) I said "no thanks" and decided to give the supplements a rest for a while!

We continued the gfcfsf diet, continued GSE, probiotics, Methyl B-12 injections, Low Dose Naltrexone cream, fish oil and multivitamin, but gave the other stuff a break.

A good friend of mine, Andi, who convinced me to do the gfcfsf diet in the first place last summer (when she started it with her son - who was 2 at the time, mostly non-verbal, awaiting a possible ASD diagnosis) had in the last year gone a different route with her son.  She had been keeping me updated on his progress and diet changes every day for the last year (which were/are truly amazing), but had decided to take a more natural and whole food approach to healing her son, with an MSG-free diet.  I knew in the back of my head it was probably the best route to take, but I also knew that Chase was an EXTREMELY picky eater and it was easier to try the supplements than fight the battle of getting him to eat kale and spinach! ;)

Andi introduced me last summer to this idea of MSG and free-glutamate causing inflammation on the brain in the same way as gluten/casein/soy/grains/etc do.  The website Unblind My Mind was what led to this idea.  And through a strict whole food and reduced free-glutamate diet she has completely "recovered" her son from Autism.  I have witnessed it first hand.  The child is amazing.  And so is Andi for all her hard work and perseverance.  All the while encouraging me to JUST TRY THE DIET!

I knew it would suck though.  I knew it would be a battle.  I knew how stubborn and strong-willed Chase is and that EVERY meal would be a battle.  But after seeing how badly he reacted to the Nystatin and what a huge set back the last few months have been, we decided it couldn't get much worse so we should just suit up and fight the battle with an even stricter diet as well!

It's been 1 month since we started Chase on a whole foods only (no more supplements or Rxs, nothing processed, nothing with preservatives or MSG/free-glutamate) diet. We have had some bumps in the road, some food infractions, LOTS of meal-time battles and lots of early morning wake up calls from a hungry 5 yr old who refused to eat his dinner!  It's been HELL!  It's been the 2nd hardest few months (behind potty training) of my life!  BUT we are seeing the light!  Chase is finally coming back to us!  He's becoming aware of us again, so HAPPY, so engaged, babbling up a storm again, MUCH less stimming, and no tantrums in a month!!!  This week he ate A POACHED EGG!! In the past, he would scream and run from the table at the sight of eggs!  And tonight, after a solid month of giving him homemade chicken nuggets at dinner, that he refused to even put in his mouth, HE ATE ONE!  Along with all his green beans and roasted sweet potatoes!  It made all the battles worth the fight!  To see my child turning a corner, coming back to us, getting better, and healing...I will never stop trying!