Hi

my daughter has many things going on. She was born with multiple birth defects and has had 9 surgeries. 3 were open heart surgeries. She also has mild spastic cerebral palsey, central auditory processing disorder and asperger's and/or nonverbal learning disability. She has only 1 kidney and has major heart problems still. All her internal organs didn't form right and are not in the right places.

We are facing some new problems as she is getting older. We were told her heart condition was under control but we have concerns. She has a heart rate of 42 bpm, leaky valves, small hole and 1st degree block along with some other things. She now has something new going on with her knees. They have been purple every day. Both knees turn purple regularly. We went to the ortho to see if it was related to her CP and tight muscles but he said no. He said we need to see cardiology. I'm a little worried. Ok, a lot worried. It just seems weird that just her knees are purple. Her hands and feet get ice cold but no color change.

Also she is being evaluated for seizures ...we're pretty certain she's having them now. Seizures develop both with CP and Autism in adolescents which nobody ever told us.

Also, I have a question that maybe someone can help me with. My daughter has not been develeoping normally. She is very short which goes along with this syndrome she has. But now she is having problems with developing evenly (this is a female thing) her chest is not even and she's extremely upset. I don't know where to go for this. I asked the pediatrician but he didn't give me the time of day...he just said he wasn't surprised. Well this poor kid has so much on her plate ...this is a big deal for her. Also, I am concerned about other female organs and whether they are developed right. Especially since nothing else really turned out normal. I just don't know where to go now..what Doctor do I go to now?

I also need to find an OT that deals with sensory integration which is almost impossible.

Well I'm in pain so can't type anymore. I have TOS and RSD so typing is a real challenge.

Off I go...good night

Welcome Mom

I'm sorry to say I'm not much help. But hopefully someone will come
in soon to help.

I'll see if I can locate some one that can help.


But I'm Donna, and my son has seizures.

Donna

Welcome to the forum. Im a mother of a child with Severe Spastic Quad CP. It sounds to me like her issues might be cardiac related too. I work in a Cardiologists office and I would take her into see one just to rule our any circulatory issues, or any cardiac issues.

As for the female issues, why not take her into your ob/gyn? They can at least get you in touch with the correct people that might be able to tell you what is going on. My daughter had issues with her bowel being backwards when she was born. And we had to have it turned around. But I dont know much about the rest of the organs being on the wrong sides. Im not much help but wanted to let you know I saw your message and hope someone with better info will come along.

Carrie.

Hello. I don't know how much help I will be either but, my daughter has spastic quad CP due to lack of oxygen at birth. My daughters feet will turn purple and her hands and feet are always cold. We were told that it had something to do with the venus (sp?) blood flow. She had an echocardiogram done in December and her heart is fine. With your daughter's underlying heart issues I would ask her cardio about this.
As far as the female issues go, my daughter who will be 13 this year, has had hair in her female region since she was around 4 or 5 yrs old, she does have hair under her arms and very small breast buds. We were told it was precocious puberty (sp?). Megan is also labled small stature. She is very tiny, she weighs about 57 lbs and is 49 or 50 inches tall. If you are concerned about this like Carrie said perhaps you could ask to be referred to an Ob/Gyn or an endocrinologist. As for seizures, Megan has had them since birth, when she was little she was on meds, but due to the side effects and the fact that her seizures only come a few times a month, we have chosen not to medicate. I do hope that you are able to find some answers. Know that there are a lot of wonderful parents here to lend a shoulder if you need it. {{{Hugs}}}
Tracy

Hi

just wanted to mention that my son had OT for his sensory integration dysfunction and it was really helpful, so I hope you manage to find a qualified therapist. Once you know certain techniques, you can do them at home with your child.

One that was really good for my son was soft brushing
Buy a really soft brush and either you or your child frequently brush arms from the hand toward the shoulder and same with legs and also back. It really helps!
We also have one of those wooden roly poly things for back massage, except my son puts it on the floor and then rolls it under his feet while he is seated at his desk etc.

there is an excellent book on SID by Carol Stock Kranowitz called "The Out of Sync Child"
here is her website
http://www.out-of-sync-child.com/