Harry was initially evaluated at 11 months. Being a twin and all, it’s hard not to notice a difference when at six months a typically developing child crashes and burns while his other half finds wings and soars. We found ourselves in the evaluation room at Babies Can’t Wait with our almost one-year-old who, we were told, was at a 0-1 month level with speech. Right, so into speech therapy we went. Once a week, then a few times a week with oral motor worked in, then the super-intensive-every-day-bring-on-the-PROMPT-Therapy-combine-it-with-PT-and-OT-and-pull-it-out style as Apraxia was suspected at 19 months when he received his Autism diagnosis. It was confirmed around three, but treated as such the whole time. Could not blow bubbles, sip from a straw, pucker for a kiss, blow a cotton ball across a table…so, we knew. We also knew he had the capacity for language because he would randomly say words, spontaneously, in context. He would smile sweetly in his crib, I would kiss him and he would look at me and say “kiss”. And say not another word for months.
After 2 ½ years of intensive and cutting edge biomed treatments with some of the finest doctors in the country coupled with every therapy we deemed useful, classical homeopathy and the beginning of CEASE we still had no progress in speech…although our mito markers- initially 4 of 5- were essentially in the normal range, oxidative stress was gone, chronic constipation, gone as well.
Not complaining about any of that but I obsess about speech. I dream about speech. I perseverate on speech. I stim on speech. I mean, I NEED to hear what this sweet child has to say…even if it’s “Get that f*cking nasty a** supplement-filled syringe away from me already woman, and squirt it in your own stupid mouth! And stick a b-12 shot in your OWN damn butt for a change!” OMG would I LOVE IT if he said that. I really, really would.
At our September DAN! visit our doc said he still considered Harry pretty severe because of the lack of speech and the number of interventions that had not worked. I started to argue that I KNEW he had the capacity for speech and that I just needed to find the right thing to open it up, when he reassured me he was by no means giving up, but was thinking we might need to try something even further outside the box then we’d gone before. Oh yeah, that’s why I love our doc. He suggested running a test to see if Harry’s nagalese was elevated. Um, what? Short and simple: Nagalese levels are elevated when the body is not effective in recognizing or fighting viruses. Cancer and AIDS patients have elevated nagalese, and, as it turned out three weeks and a blood test later, so did Harry. Short and simple again: GcMAF is the chemical your body naturally produces to fight viruses. GcMAF is used in Europe to treat Cancer, but I was a little nervous. It’s a human product (though virtually a homeopathic dose) which carries, at least, theoretical risk. So I sat on the results and continued CEASE clears for a few months until I couldn’t sit on the results any longer. I hopped online and read Dr. Bradstreet’s blog about it and decided it was time to act.
We scheduled some time with Dr. Bradstreet (who will be talking at AutismOne in May) He took a look at Harry’s recent labs and noted high neopterin on his last urinary porphyrins test, which is a secondary indicator that GcMAF might be helpful, and noted his chronically low Vitamin D levels…another indicator. We decided to give it a shot, literally, of course, because you give shots of GcMAF weekly. His office made up a series of four homeopathic injections for us to give once a week and shipped them overnight.
We gave the first one in his thigh and within ten minutes we had a rash (if you read my blog post about CEASE two weeks ago, you will notice a trend). For ten days we had spectacular rashes, but we saw gains from the get-go. Day 2 he stood in front of the mirror, smiled and said “Hi, Harry!” Um, what??
He started to spell three letter words on his Ipad. His receptive language began to explode. He understood so much more than he had in the past, and he began to follow simple directions like “put your shoes on” from across the room. The auditory processing delay that had decreased with CEASE disappeared completely and he responded just like any other child. School took notice and the reports home were reports you dream of receiving. So we kept going, meeting with Dr Bradstreet every month, reporting progress, and receiving four more injections. And the gains kept coming. The child who could in September do two signs…”more” and “milk” had now mastered thirty and was using them in combination. He was parallel playing with peers. He was sharing toys, and objecting—not walking away—when something was taken from him. He learned how to swim and COULD BLOW BUBBLES! He started puckering to give kisses…the first one to his twin who has never once treated him differently because he has Autism (although she has, at times, treated him like her life-size doll…but I digress).
We were told in the beginning of the treatment that if you see speech from this it usually comes between 12-16 weeks. After 12 shots, Dr Bradstreet suggested adding in Prevagen which is, um, jellyfish goo and its sold OTC at Walgreens so at around 13 weeks, we did. Prevagen binds to excess calcium and Harry’s calcium has always been extremely high. I was interested.
So back to our amazing week. On Monday, he started nodding yes. It was a waist-up effort and stiffer than you can imagine, but it was Yes. And he has been able to repeat that over and over this whole week. Consistency—what we strive for but very rarely get. He started shaking his head No…finally…and I think he kind of likes it. I got a few head shakes when he eyeballed the syringe with the Prevagen in it…I have a feeling jellyfish goo tastes pretty nasty.
Last Wednesday I picked Harry up from school and he ran full speed, smiling and hugged me, as now has become our long-awaited norm. We turned and I said ‘say bye bye to your teachers’ and expected his usual cheerful wave. He paused and grimaced, then with tremendous effort said “BYE BYE” and of course I screamed so loudly that he is probably still trying to recover his hearing BECAUSE HE SAID IT ON DEMAND!!!!! Not a random, spontaneous word, but he listened and was able to repeat something back to me for the very first time. Thursday, he did it again. And he did it again on Friday too…twice actually because I got the courage to ask him to try it again at home.
We had our follow up with Dr. Bradstreet on Thursday and I basically professed my undying love for him (but I promise, Dr. Bradstreet, I am a fan, not a stalker). He professionally confirmed he was seeing the same thing with other patients using the combination of GcMAF and Prevagen (and probably looked into restraining orders, lol). He also confirmed Harry’s second nagalese test was in and it was no longer elevated, but that he would like to see it even lower. He made some other supplement suggestions that he thought might push speech along too.
Today is Saturday and we gave shot number 17. I know you will not read this till it posts on Tuesday but man, was it a good day. He said bye bye a few more times. Mama Mac suggested having him say it to everyone we encounter and um, yeah, sorry everyone at the mall who even looked in our direction today and thanks for being such good sports. Harry and I were in the car when his sister dozed off and I slipped him a treat in the form of a Teletubbies DVD. He loves those four…aliens? (What are they anyway?) but his sister and brother have moved on. I asked him “What is Dipsy wearing?” and he looked at me and said “HAT!” and then looked so proud of himself for answering the question out loud. YES! A HAT! YOU ARE RIGHT!!! My gosh I have waited so long for this brief conversation—yes, I’m calling it that—and man, do I appreciate it. The Teletubbies then said “Big Hug!” and started hugging each other. Harry looked at me and grinned with arms outstretched saying “HUG!” YES! You got it. One smothering, completely-over-zealous-and-maybe-bone-crushing hug from Mommy coming right up pal.
This is working for us. I think back to everything we tried over the last 3 years that didn’t work and I am thankful I never once doubted that we would find something that would. I think doubt is probably the most toxic thing for an Autism Mom, like a gateway drug to despair and depression. Don’t allow it in there people, no matter how hard it is; it’s like GMO for the soul and it will slowly kill your resolve to fight to get your child back. Know that the Thinking Moms are here with you and don’t doubt for one minute that you can make your child’s life better in some way. You can, and we are here to help.
And, incidentally again, TMR does not endorse any type of treatment, nor can we predict if this will help you & yours. Just sharing my experience with this :).