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1+tripsmom
member
New with questions
1+tripsmom
member
I will start with a intro. I have a 4 year old former 34.6weeker who had developmental delays but with therapies is good now. He has SPD, ADHD, and maybe more on spectrum. I also have 17 month old triplets and the big issues are with my daughter.
Now the questions I also have 17 month 35.3 weekers triplets. Babies B &C are typical developing or advanced they are trying to potty train. But baby A who was always the smallest took longest time to come home from hospital. She has severe delays she does not have any words, apps he is not walking started crawling at 13 months. We just moved across country less then 2 months ago and before we moved she was getting a ton of therapy and hope to start it here soon. But the issues aside from delays she has hypotonia, FTT, GERD, she had a wondering eye, near sighted, severe astigmatism, asthma. The drs thought for sure it was CP but her MRI showed no CP but she does have hypoplasia of the cerebellum. She has had trimmers and absent seizures we think she had a EEG and that showed she had seizure tendency's but no seizures during exam. We know she needs leg braces to try and walk with out them not sure if she will at all. Her hips have been checked and they are fine. She has had every blood test under the sun done and had genetic testing it all keeps coming back normal. She also we found out at over a year has a dairy allergy and has been put on eleacare jr a month ago and she has shot up height and weight wise now. She sleep so bad waking up crying a screaming also. Ok I think that is most of her history. Has anyone delt with a kid like this? Or have any idea what it could be? We see a new Neuro at the end of the month and hoping they have some answers. Just thought I would ask and say hi since I have been lurking.
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Re: New with questions
I'll add more later. Read up to the CP part and that the MRI showed no CP. Just wanted to tell you that a MRI will not show CP. It may show PVL which helps support a CP diagnosis but not all those with CP will have PVL. CP is a clinical diagnosis only - there is no test that says "you/your child has CP". I have a 3.5yr old CP who is a former 35wk, 5d. I'll write more hopefully later tonight but for now I must get back to work.
ETA: OK, I'm back. My son doesn't have all the things you listed but he did/does have a few. He has mixed tone (sometimes loose, sometimes tight), his eyes cross (he has worn glasses since 10mos old and had eye surgery last year, is farsighted, and has a stygmatism in each oeye), he wears AFOs (orthotics), crawled late, doesn't walk yet, doesn't sit independently except for W sitting. My son has PVL with wallerian degeneration of the corpus callosum (this was per the MRI). His hips are currently fine.
What I was saying about the CP diagnosis is that it is usually given based on case history and clinical exam. Some doctors won't diagnosis it early but DS2 was diagnosed at just shy of 10mos old. We did not do genetic testing and only a some blood work.
I'm not saying your child has CP but I am curious why you state the doctors seemed certain it was CP but then after seeing a MRI they decided it wasn't. It very well could be (or may not be).
In the end, you may or may not get a diagnosis. For now, make sure he is getting the therapies he needs. I'm sorry that I am probably not much help but know that this is a very supportive board and that I'm glad you found us. :-)