Today marks 3 years since our generation’s American Tragedy. I don’t often think of it…that tragic day where we realized that this strong country is vulnerable, weak, penetrable. I remember, barely 2 months pregnant, wondering if this was a world I wanted to bring an innocent new baby into. Now we run about in our busy lives, listening to the Republicans defend our position at war, the Democrats scoffing at it, a nation divided amidst the appointment of a new President. Yet, does there truly exist, amongst the American heart, a fear of further tremendous destruction here at home? I sincerely doubt it. Yet, today, as we are so vividly reminded through scenes of that dreaded day, our hearts stop, but for a moment, to worry as mothers, fathers, friends and family for the safety of our own.
We have put our baby through his own “hell”. He has started “school”. Jack has returned to Forest Hills Baptist Church’s Mothers’ Day Out program for his second year. Perhaps his new found awareness of self has made this a bit more difficult. Whatever the reason, I have watched him suffer these last two weeks. To soften the blow, I sent a therapist to his class to “shadow” him each day. I have found that having eyes in the classroom is a blessing and a curse. I am glad to know that someone, solely with his interest in mind, is within arm’s reach of my baby. But, to know that he is lying on the floor, failing to participate, holding his beloved blanket and pacie, moves me to tears. Is this cruel and unusual punishment, masked by the theory of “socializing” him for his greater good? He is a changed boy since that first day of school last week. He demands his blanket and pacie at home at all times and oftentimes soothes himself by saying “It’s okay?” over and over. The reports do show that he is making progress at school, but what will the cost be? The anxiety bothers me greatly. My sweet, usually happy boy. Unsettled by the unsettling of his little life.
His language is building! He is using names to request, when the motivation is high. Yesterday he could not find his pacie. “Wuh wuh wuh blue pacie?” he stated (his version of where is blue pacie). Then he said “Vovvy…pacie!” When I produced his pacie he said with glee, “There it is!”. The makings of sweet conversation!
We’re chugging along at the slow pace of progress and becoming disenchanted with the current pace (which I feel is a good thing). Time to put the pedal to the metal. Jack is 2 and a half. Rapidly approaching three, where he’ll be thrust into Metro’s land of opportunity (sarcasm). Mom and Dad are asking me to pick out a new chandelier for Christmas, and I am suddenly burdened by the expenses of non-material things. We MUST take him to an expert. We must tackle his underlying metabolic/biomedical issues. Correcting the myriad of issues going on biochemically will cure the ailments, not treat the symptoms. That is where true healing takes place for this dreaded disease. And time is fleeting…with each passing day he falls further behind in our race to “catch up”, all the while his brain becoming less and less malleable, neurologically speaking. We need to be moving with lightning speed. Days are turning into months. We’ve been at this formally for 6 months already. What have we accomplished?
Officially on the downward turn toward 3. Yikes! Only 6 more months of all of this generous intervention. And we seem to have some momentum going! Jack is surprising us daily. Today he finished therapy and, while heading for me, was intercepted by Daddy. Daddy scooped him up and kissed him. Jack obliged him with a returned exchange, then turned to me and said “Want Vovvy!” and leaned out to me with outstretched arms. Delightfully delicious.
School has become a respite for me and a tolerable morning for Jack. Teacher reports indicate that he is settling in “nicely” although observational reports seem to reflect a less rosy picture. He is starting to tolerate some peer interaction during play time and has definitely become accustomed to the routine of the day. Naptime is a bit of a struggle. Friday he was put in a crib across the hall from the classroom, where he promptly went to sleep. I’m left wondering if it would be better for all (except me) if I were to pick him up after lunch to avoid the nap fiasco in its entirety.
Jack spontaneously pointed on Saturday night. One might consider this a pivotal moment in his developmental timeline. Seems, if only for one brief moment, that he figured out that a) he needed our attention, b) could command our attention with a gesture and c) picked the correct gesture to summons our attention! Hooray! Something that seems so very simple is such a struggle for these sweet little ones. We have not seen him again do this spontaneously but are now encouraging pointing in general in hopes of solidifying the relationship of pointing to having his needs met.
It seems that I have not journaled of Jack’s new passion: Thomas the Tank Engine. It has been about 4 weeks since we went to the Stansbury’s house for dinner. Tate & Grant have a large train set in their playroom and, during the course of the evening, the boys all watched a Thomas movie together. Jack was mesmerized. By the second week thereafter, all we heard was “Thomas” this and “Thomas” that. Now from the first word of the day to the last (almost literally) we hear: “watch Thomas. Okay!” or “It’s Thomas. Hiya Thomas. Whoo whoo.” “It’s Percy. Hiya Percy. Whoo whoo.” “It’s Jays (James). Hiya Jays. Whoo Whoo.” He talks to himself about the Island of Sodor and quotes lines from the movie (“how dare he say we’ll do. How dare he say we’ll do). It’s typical two and autistical scripting all at the same time. He LOVES to go to Barnes and Noble to play with the Thomas trains there. He now “works” for Thomas time during therapy. It’s sweet and all boy. Christmas this year will bring big surprises for Jack!
We went to visit Grandma & Grandpa in October. We had a great visit. Mom & Dad commented just how “different” he seemed. He was truly a delight. However, mid-trip, Jack went for a swim with Grandma in the pool. He enjoyed himself thoroughly, but we saw immediate behaviors associated with exposure to the chlorine. These symptoms are similar to what we see/have seen when Jack has a phenolic reaction to foods. He was madly giggling, hyper, stimmy…and it lasted for about a week (he went in the pool two days in a row). It was tough to watch what was almost like a regression! Thankfully, most of the symptoms have now subsided (except occasional head shaking) a month later. Phenol sulfertranferese. Can’t explain it…just know that is at the core of the stimmy weird behavior. Hope we can fix it!
One month after we began treating yeast (on a whim, mind you) we have a new little boy with us. Other than his obvious language delays, he is doing remarkably well!!! He is “just one of the kids” at school, participating beautifully in therapy, and an all around delight to have around! His speech teacher observed him in class on Friday. She called me to discuss her findings. She was amazed at how well he fit in and “flowed” with the rest of the kids. Other than seeking out his teacher’s hand to walk to the gym and choosing her lap instead of the floor for story time (perhaps he’s just clever!), he would be hard to pick out by the untrained eye. What great news! And in therapy, he’s doing things that a month ago were impossible (and had been that way all summer). Imitation was a lingering concern as we went into month 5 of his individual ABA therapy. However, in October (month 6), imitation truly blossomed! Now he is happy to imitate you touching your nose, rubbing your tummy, patting your head, or whatever else you show him at a mere command of “Do this!”. What a HUGE developmental leap! At home, transitions that previously seemed “typical two” (But obviously weren’t) are now a thing of the past. No more shrieking at the mention of bathtime, but instead a willing toddler who claims “pee pee potty” as we enter the bathroom. (No, he has no idea about GOING potty, we are taking baby steps!) Now when movies end, he yells “Yay!” instead of crying as though his beloved dog had died. He is chasing the dog and giggling with glee. He is happy to go to the grocery store to ride the train, willing to come inside after a car ride without hesitation and loves to “play trains” in the playroom. Pointing is a regular occurance, and he is now starting to use carryover phrases like “It’s a two” instead of just “two”. The effects of 30 days of yeast treatment is ASTOUNDING!!! We finally feel like we are gaining momentum. So, what’s next? Well, it’s time to rock the boat, of course!
I had a consult with Scott Smith, P.A. at Dr. Bradstreet’s office on the 3rd. This is Phase II. Now bring in the big guns…cuz we’re fighting the big boys now! Scott thinks that Jack is carrying a significant heavy metal load. He recommended that we begin chelating right away. So, that’s what we’ll do. We will keep most of our protocol the same, with one major difference. We will adjust our Nystatin dosage significantly. Dr. “Crap”delaine was dosing Jack at 1,000,000 units per day. Dr. Bradstreet had a cow when he heard that! The most he is comfortable prescribing is 250,000 units per day. Another nail in Crapdelaine’s coffin. What is he doing over there? Thank God that He directed us to Bradstreet. He’s currently treating 5,000 kids worldwide. What an amazing database of symptoms AND treatment!?! I imagine that we will see, over the next few months, the treatment rollercoaster again emerge. I am ready this time. I know what “pretty good” looks like in Jack, and I can’t wait to see what “Great” or perhaps, “Recovered” looks like. I’m willing to take “difficult” for a time if it gets us to greatness. Perhaps I should bookmark this line, to refer back to in the days ahead!
First B12 injection went super smoothly last night. Mommy was uptight, Daddy thought he was in private practice and Jack was none the wiser. NEVER EVEN FELT IT! What a blessing! I do feel like we are getting a little “alternative”, if you will. Next we’ll be rubbing cow spleen on his backside or some other black magic treatment! No reaction to the B12 and the injection site was undetectable by morning. Hurray for the small victories!
On the way into school today, Jack and classmate Grant were entering the building at the same time. Jack saw Grant and made significant eye contact. I prompted him to say “Hi” and Jack sweetly said “Hi”. Grant said a shy “hi” back. Awww.
Lots of changes in the last few weeks. Jack was really doing so well. Late October and November were great. There’s an awesome little boy in there. Now to get him to the surface. We’re banking on the fact that we are going to hit a rough patch that, once beyond, will bring amazing things. I hope we are not disappointed. We’re counting on this!
Jack’s teachers, the school days of the 18th and 19th, were beside themselves with praise for Jack’s behavior, compliance and overall “typical-ness”. I am so proud of that! Jack sat in circle time without being prompted, attended perfectly during Flashcards and all around was a sweet boy with a special spark in his eye that his teachers said they had not seen before.
We started TD-DMPS 3 days following the first B-12 shot. Didn’t see anything good or bad. That sounds good to me. Then on the 23rd, just around the time we arrived at MeeMee’s for Thanksgiving, Jack started screaming more. He was a bit resistant when asked to do some things, like sing, which he had been willingly been doing for the past few weeks. We assume the change is yeast related, as DMPS can trigger yeast growth. We had also dropped the dose of the Nystatin from 8 tsp/day to 1.5 tsp/day maintenance dose. By the time we got home on Sunday, the 28th, there was no guessing that something was going on and it wasn’t necessarily going to be easy to deal with. Monday afternoon ABA session was ugly, as were ALL therapy sessions Tues & Wed. Additionally, we are seeing more screaming and increased difficulty in transitioning. Meltdowns at bathtime, etc. Oh boy. What fun.
Our OATS results show elevated yeast and bacteria. 2 new scripts. Hoping that what we are seeing is yeast related and will dissipate with the Diflucan, but also preparing ourselves for a bumpy ride for 2 or 3 months if this is DMPS related. That would be all of December, January and possibly February until there might be light at the tunnel’s end. If that’s the case, it’s going to be one dark winter. Ugh.
A little note about the B-12 shots. Seems I’m an idiot. Correction: seems I am truly a non-medical not-even-able-to-be-called-an-amateur uneducated idiot. In my defense, the pharmacy sends a vial that says .3cc per day and a bag of syringes. That’s it. No instructions. Nonetheless, we have been dosing at 3 units (the syringe, of course, uses different language). Figured out yesterday, 3 weeks or so into the shots that we are supposed to be giving 30 units. What a big fat duh!!!!!!!! No wonder we didn’t see any magic.
Going to an ENT doc on Friday. Had some nose issues that just won’t quit. The most bothersome is a feeling that my nasal cavity is constantly closed. This may be due to an allergy issue, which would be another doc altogether. Might be caused by the enzymes. It is driving me crazy! I don’t have time to have ISSUES!
NEWEST INTEREST FOR JACK: Dora! Especially the Dora episode with the TRAINS. Go figure.
One month since the start of DMPS. While he hasn’t begun rattling off trigonometry equations, he has not begun biting himself and running up the walls either. Guess I’ll take that. We’ve seen a slow and steady consistent measure of improvement. Is it greater or faster than what we’ve previously seen? It sure is hard to tell. Could this be the greatest placebo trial?? He was a bit more stimmy a few weeks in, but that seems to have leveled off at a somewhat “normal” state.