Community› The Bump Message Boards› Special Needs
Special Needs
New Discussion

Back Again, Possible CP.

realisticdreamsrealisticdreams member
in Special Needs

https://community.thenest.com/cs/ks/forums/thread/33323862.aspx

So since then we have still been in PT weekly.  We went to a pedi orthopedic doctor last week about her scoliosis and right ankle inversion.  He didn't want to do anything about either but said he was surprised no one had mentioned and/or tested for CP.

CP had been in the back of my mind from the beginning,  but I was stupid in thinking that if she was making any improvement that it meant she didn't have CP.  I didn't know about the varying degrees, as I only know one 17 year old with CP who is in a chair.

I was at PT today and she asked how the ortho visit went, I told her and she said that she had though Peyton may have CP from the beginning but it's not her place to make diagnosis and she didn't want to upset me.  I talked to her about it for a little while, and ended up going to see my pedi afterward, because I was fairly upset. 

I don't want to take her out of therapy, even though at this point she still needs it weekly because her muscles are so tight.  I know early intervention is very important in babies with CP so I don't want to wait until she's 2 and 'not know'  I have a referral to Pitt to see a neuro in early May.  Our local hospital, WVU didn't have a single opening until August. 

So, right now we're waiting.  Also, trying to decide if we want to do a helmet for her plagiocephaly and we have to get an orthotic made for her ankle, which will happen this Wednesday. 

Anyways, trying to grasp all of this, I have a lot going on with my health too so I kind of feel like my head is going to pop off!

 

DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


Report Reply to Post

Re: Back Again, Possible CP.

  • brysladybryslady

    My daughter has CP and I too have learned the wide range of possibilities since having her.  There are kids with right or left side hemiplegia who you can hardly tell and there are those that are more physically involved.

    I am sorry you are going through this.

    My daughter is more involved but she is a smart and beautiful person. (biased mom) :)

     Hope your appointments go well.

    Report Reply
This discussion has been closed.
Choose Another Board
Search Boards
"
"