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Hey ladies! I'm Anne, mom to Kaiden (14mo). He has Down Syndrome and was a preemie (33w3d).
He was doing very well developmentally until about 6 months of age. He became very anemic (got exclusive BM, hadn't started solids) and I let the pedi give him some vax's - which he had been getting, just a few here and there - and then all of a sudden after this batch we had a bad downturn. Yeast overload, seizures, he felt so awful, he would just lay there and you could tell he didn't feel good. His pedi repeatedly blew me off . . . anyway . . . long story short I took his health into my own hands & then got a different pedi.
The seizures he developed after the vax are benign myoclonic seizures which do not affect him cognitively - they are more of an annoyance than anything else bc they are completely random - just a big jerk every now and then. We saw a neuro but he turned out to be not very helpful - didn't believe me that diet had ANY effect whatsoever. Yeah, tell me why, then, anytime he eats certain foods (and we've had repeated results) his seizure activity spikes for the next 48 hours???
So, that means Kaiden is on a special diet, created by me, and on Targeted Nutrition Intervention, also created by me (with his food sensitivities we can't just go get a supplement like Nutrivene, we have to do each ingredient separately to see how he reacts). I am pleased to say he has come a long way since implementing that!!!
He does have low muscle tone but great strength, if that makes any sense at all! He is a little "floppy" with looser ligaments/tendons. He also "fixes", meaning he will hold his body in a certain way like it's fixed there. But he can do things with his abdominal muscles that I certainly don't have the strength to do!!
We've had EI since about 3 months I think . . . had to get rid of the Special Education person, she was awful . . . really like the new one though. Also PT & OT. They are very helpful and nice and completely supportive of my alternative choices for Kaiden's health and treatments, they are even bringing some to us!
Welcome to the group, Anne! What a road you've been through - I'm sorry to hear you've had to deal with so many sub-par members of Kaiden's team. That stinks! Good for you for taking things into your own hands though, it sounds like you're doing great by him!
Low tone and high strength makes total sense to me... That is Danny too! It is amazing what they can overcome because of the strength too.
I'm glad you've joined us and hope you jump right in! I'm Kel; my son Danny (just turned 2) was born premature with congenital CMV, a virus that can cause a large number of disabilities. He was very slow developmentally for the first year or so, but has since started making a lot of progress. Along with his low muscle tone, he has a left side weakness, global delays because of his first year and prematurity, and is deaf. He also had feeding delays but has since overcome them completely.
You've really had quite the journey with him. Are the seizures something they don't typically relate to food? It seems so foolish of the doctor to just shrug off the relationship you found between the two.
the neuro was of the opinion that the seizures were just something we'd have to deal with - they were just THERE, and nothing "caused" them, nothing "causes" them to spike, and that nothing but modern meds would take care of them (with some really nasty side effects) basically there was nothing I could do and I better be a sheep and listen only to him. Yeah, that didn't fly well. Sad thing was he was supposed to be the best neuro around.
We tried Epi-Still & Triple Complex Nerve Tonic from Native Remedies, together, they made a huge difference, significantly reduced the amount & severity, but after 5 months on that, we seem to have hit a plateau. So I switched to Dr. Christopher's products (of which I am a huge fan, should have just started with that in the first place! ) we started them on Monday afternoon and his balance improved overnight (HUGE thumbs up there!!!), the seizures so far have been extremely mild - BUT he could just be having some good days so only time will tell on that.
That neuro sounds like a real piece of work. The "best" ENT around said my DS would outgrow his oversized, chronically infected, scarred up, fused tonsils. I ended up having to switch to a new pediatrician that took the infections seriously who sent me to another ENT that took the whole situation seriously and removed them just after he turned 3. Sometimes you just need to dig around for doctors with brains. How some of them get licensed to practice is beyond me.
Hello Anne & welcome! I'm Stacy & my SN child is Luke. He also has Down syndrome. He will be 2 the end of May..... had OHS at 3months & has been doing well ever since. We are currently receiving PT & OT & are starting ST next month. He has major oral aversion but we are making progress. EVERYTHING but food makes its way into his mouth
Kaiden is gorgeous! I love those cheeks!
Thanks Yvonne (Jaidynsmum) for my beautiful siggy!