YAY Finally a Dianosis

[kaydencesmom07]

I will start with a little background first, I was induced at about 34 weeks gestation due to me having really high blood pressue and borderline gestational diabetes my DD ended up being born by emergency c section because I failed to dialate past a 5 and I also got a fever because my water was broke for way way too long. My DD spent 10 days in the NICU and then was sent home for some crazy reason then ended up back in the NICU at the local Children's hospital because she quit breathing on me at home when she was 15 days old let me tell you how scary that is to have your newborn need CPR. She spent most of the 1st year in the hospital because she had severe apnea and acid reflux. She was labled failure to thrive at 3months old because she was so floppy she couldn't hold her own head at all and also she kept her hands in a fist. We were told when she was 6 months old that she had a the clinical signs and symptoms of a kid with CP her head and trunk were low tone and her arms and legs were high tone made things hard. Well she recieved EI services from the time she was 3 months old until she was 3 then we go told that she had aged out of the program so she was with out services for a little bit and now she gets just OT at a private company. She is almost 4 years old now and we finally got a diagnosis 3 weeks ago. Her Diagnosis is something I already knew. The dianosis's are Gross Motor Developmental Delay and Hypotonic Cerebral Palsy. If there are mom's out there that still don't have a Diagnosis don't give up. The dr that gave her diagnosis was a Muscle Rehab dr and it took us 3 1/2 yrs of fighting for a diagnosis before we finally saw him. Good Luck to all the mommy's out there.

[Amy385]

 

[Crystal8327]

I am going through the same thing and my son is 18 months old so I guess I have a long ways to go. I just know what it is, its funny when we can diagnose just by a little bit of research and the ie's agree yet no doctor wants to say anything.

[sammygrl77]

Yay !

[kaydencesmom07]

Good Luck too you mama. Will keep you in my thoughts a prayers

Quoting Crystal8327:

I am going through the same thing and my son is 18 months old so I guess I have a long ways to go. I just know what it is, its funny when we can diagnose just by a little bit of research and the ie's agree yet no doctor wants to say anything.

[LilMommaInSC]

Have you tried genetic testing for possible Rett Syndrome (all it takes is a simple blood test)?  Rett Syndrome is often misdiagnosed as CP and Gross Motor Developmental Delay, I know from experience.  I hope your diagnosis is correct, it's just best to make sure.  Your daughters story is just like my girls story.  Best of Luck to you all.

[Crystal8327]

That is interesting about the Rett Syndrome, my son has a scheduled testing with a genetisist this Monday and I will try to have him tested for as much as possible.

[LilMommaInSC]

Rett happens to boys, but rarely.  They can test him for Rett, Angelman's and CDKL5.  Those are all Similar to Rett and CP.  It usually takes a few weeks to get results back.  Good luck!

[kaydencesmom07]

Thanks for that information. We have NEVER seen a genetisis. How do I see one?? Also does my DD qualify for Social Security? I have applied before and was told without a DX she ddin't qualify??

[Crystal8327]

Yes cerebral palsy definittely qualifies for ssi or ssd i forget which one. Ask your childs ped or state program for a referral to a genetisis. Depending on your insurance you may need an official insurance or not.

[Crystal8327]

official referral*