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Post your childs diagnosis!! - Page 23

post #441 of 735
My son has global developmental delays and was recently diagnosed with mild hypotonia and Generalized Seizure Disorder.


This was a while ago. He's recently been diagnosed with suspected mitochondrial disease and a secondary neurotransmitter disease.
post #442 of 735
My son, Hayden (3 1/2) was diagnosed in April, and we're still waiting to hear where on the spectrum he lies and what therapies he's going to be eligible for.
post #443 of 735

Diagnosis

My daughter was born with Pierre Robin Sequence. She has a cleft palate (two surgeries to repair, at least two more to go). She has a trach and a g-tube (mic-key). She is significantly speech delayed and has mild physical delays. She receives PT, OT, ST and Special Instruction. Later this summer she will have jaw distraction surgery to pull the jaw forward and, hopefully, facilitate the removal of the trach (within 1.5 years) and the tube (within 8 years - we hope). And, yet, with all of her problems, she is an utter delight! :
post #444 of 735

William's Syndrome

Newbie here, hello all! My daughter Ava Jewel who is 18 months old was dx last month with William's Syndrome. Any other parents out there with a child that has William's Syndrome?

Warm regards

Anna
post #445 of 735
Welcome!

I'm pretty sure there are 1 or 2 families around here who have Williams Syndrome.
post #446 of 735
Quote:
Originally Posted by plumpyellowchick View Post
Newbie here, hello all! My daughter Ava Jewel who is 18 months old was dx last month with William's Syndrome. Any other parents out there with a child that has William's Syndrome?

Warm regards

Anna
hey there! our youngest has ws. i just posted to you on another list about 'self-feeding'.
post #447 of 735

Bipolar child

I think my son is Bipolar. I am, my mom, aunt, my cousins, I think my Grandma, and there are stories of other family members. I have done a lot of reading about it. I am just not succeeding in getting any professional attention. He is very social and friendly much of the time and that is what most strangers see. They never get to see what it's like to have ten long intense sobbing sessions in one day. Hoping to find other parents w/ this issue and see what I can learn!
post #448 of 735
Hi there, I am looking to make contact with other parents of children that are or may be bipolar. How did you get a diagnosis and at what age?
post #449 of 735
Hi there, I am also looking for other parents of bipolar kids. Have you found any help? How did you get a diagnosis and at what age?
post #450 of 735
Our son(who passed away) had his esophagus disconnected from his stomach, he was also born with 4 fingers in his right hand and 3 in his left hand.

i will post more...

Well when i was pregnant I got a virus that it's called the vater virus, it affects several organs in the body, for instance, my son was born with his heart in the center, and he was born with scoliosis, but he passed away of another thing not of any of this.
post #451 of 735

I have four boys w/Special Needs

My 15 yo has severe ADHD. He has improved dramtically, though, since we began homeschooling.

My 12 year old has Cystinosis www.cystinosisfoundation.org and was diagnosed with this and Fanconi's Syndrome (kidney disease) at 13 months of age.

He was in end stage renal failure last year, and received (from my brother) a kidney transplant just before last Christmas. Life is so much better for him, now.

He was on 17 different medications, including daily growth hormone and procrit injections. Now, he's down to 6 meds and NO SHOTS! : YAY!

He had Vit D-deficient rickets, as well as failure to thrive before the transplant. His legs turned out severely during the End Stage Renal Failure due to excessive bone turnover, so he will be having another surgery to correct them in September.

He is still photosensitive due to the crystalization in his eyes, and so wears transition lenses, a hat, etc. when he goes outdoors.

I also have 5 yo twins. One is Autistic and the other has APD (Auditory Processing Disorder).

There's never a dull moment around here, as I'm sure you all can relate.

Hugs,

Angela
post #452 of 735
sensory intergration disorder, hypersensitive but also hypo receptive.
post #453 of 735
We just got an initial diagnosis of Global delays and seizer disorder.
post #454 of 735
My son was diagnosed with bipolar disorder at six. We currently have a new therapist and she will be looking for signs of asperger's syndrome.

Pam
post #455 of 735
My oldest also has bipolar disorder. Starting at age 7. I am having a hard time finding anyone here with a child the age of mine with the BP dignosis.
post #456 of 735
I have 3 gorgeous kids, 2 special needs ones.
Benedict is 7 and has severe autism, mild cp, landoff-kleffner syndrome (I think that's the spelling lol) m=and moderate MR. He is affectionate & cuddly but gets stressed pretty easily.
Megan is 4 and has high functioning aspergers, complete with sensory issues. She is very very bright & can be a challenge to keep entertained.
Zoe is nearly 2 and is developing so differently from the other 2, she pretends play, sympathises with upset children, makes eye contact... I have all my fingers crossed that she will have less issues than my other munchins. Life is so much easier without ASD.
post #457 of 735
My 2 year old son Aidenn has Sotos Syndrome, Seizures, Autism (this was just diagnosed 2 weeks ago). Does anyone on here have a child with Sotos? Aidenn is extremely mushy sometimes but he has his bad days when he is mad and cries a lot. He will not interact with other children. He has tons of fears!!! This can be hard b/c you never know how he will react to things like changing his diaper!!! very stressful for a parent to really not know their child. You really do feel very helpless. I think that is the worst part of having a special needs child. There is nothing you can do. I just wish that he would be normal and i could take all his issues away from him. I know most parents feel the same way. Aidenn is now the ize of a 4-5 year old. He is 3' 6" tall and just turned 2 years old in June. If he keeps growing this way he will be taller then me in a couple of years. He does have Breath Holding Spells that are really bad- he completely stops breathing and his whole body turns blue.. sometimes during these episodes he has seizures where his whole body stiffens and you can not move any part of his body. These episodes usually lasts less than 1 minute but if it does last more then 1 minute there is a chance that his heart will stop. I pray everyday that it does not happen. He doesn't have these episodes at home anymore just has them at school b/c of his frustration issues. ok i will stop now... i could keep going and going.
have a nice day everyone and i am glad that there is a place i can come to and be able to really say how i feel. Thanks
post #458 of 735

Epilepsy

My daughter is 8 months old and was dx at birth with Tonic-clonic (Grand mal) seizures in which she stops breathing. She was in the nicu for 3 months before coming home. Born at 38 weeks at 7#. She is behind developmentally but is now getting help with therapy thru the Birth to 3 program in our state. We have a long road ahead with therapy, speech therapy and we are not sure if there are any learning developmental issues yet. Just wanted to say hi.
post #459 of 735
My 6yo ds was diagnosed this spring with Asperger's Syndrome and Tourette's Syndrome.
post #460 of 735
Quote:
Originally Posted by GinaRae View Post
My oldest also has bipolar disorder. Starting at age 7. I am having a hard time finding anyone here with a child the age of mine with the BP dignosis.
i was diagnosed around that age, which was really rare back then. Now as an adult on my meds, I do really well, pretty average really. I think the best help I ever had was a psychiatrist who explained to me how my BP brain works.

Oh by the way I have BP type 1 & my 2nd oldest is mild on the spectrum, high functioning with OCD & drives me crazy but I love him. they said reading would be his biggest academic problem, but i taught him to read verbally & he learned to memorize words & just this past school year he caught up to his classmates (I'm so proud, he loves reading too). He socializes so-so & is very manipulitive, he makes friends easy but then moves on. He has trouble lerning physical things but he reuses to quit & learns them eventual, although definatly not an athlete.

On the vax question, I vaxed my oldest, but wasn't sure when I had my 2nd, so he wasn't vaxed until age 5, I've decided to o with it, Oh he is also milk allergic, but that is cultural for our people, but not as common as amoungst some Asian groups
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