Posted by Michelle
on October 02, 2000 at 22:26:44:
In Reply to: Re: Very Very Mild CP - Ataxic? Walks a bit unsteady at times...falls down more than typical child. posted by Cathy on September 30, 2000 at 15:16:36:
: : My daugher Delaney is two years old. She lost ten minutes of oxygen due to my uterus rupturing during a VBAC delivery. She was on a ventilator for less than 24 hours. She did not have any known seizures while in the NICU. In fact they sent her home saying that she was going to be OK and would not have any problems.
: : At three or four months I started noticing she was having good head coordination but she had some slight shakiness. I knew this shakiness was not normal by comparison to my previous experience with my son when he as that age. As she continued to develop I noticed the shakiness in her arms when reaching out for small objects. I took her in for an evaluation at age 8 months and they found she had low tone in her belly in and some tightness in her legs. They recommended some physical therapy which we did for about three sessions. We had to move after that. I took her back at age one year and by this time she was walking. They said she should be OK and did not seem concerned about her future as far as CP involvment.
: : She is two years old now and still has the slight shakiness. She is very bright and articulate. She does drool slightly but could be typical for a two year old. She has the walk of a "tipsy" person. I think she may be ***ATAXIC*****. I'm convinced she has mild CP. I took her back to the DEC at age 2 years and they would not say anything but she is on the low side of normal. My pediatrician thinks she has mild CP, so I'm going to have him set me up an appoinment with a neurologist for an MRI. I want to get her therapy.
: : She is very mild. I am blessed. But I want to do what is best for my daughter. I want to get her involved in some therapy. It is frustrating having a daughter with mild CP who is falling down all the time. She can't catch herself and ends up banging her head the floor, the wall, etc. She is taking some pretty hard hits because of this.
: : I have her in ballet and tumbling. I will do anything I can to help her with this.
: : We are in such a gray area. If this sounds anything like you or a friend please contact me at firstname.lastname@example.org.
: : Thanks for reading my long description of our Mild CP, but I felt like someone out there will be going through this too.
: My daughter Kate sounds similar to yours,but we don't have the shakiness, her's is all balance problems. We noticed at 9 months when she could not sit up well there was something going on. Our pediatrician assure me Kate was fine, just on the slow side of the normal range. She finally walked at 20 months old and I thought our problems were over. Kate would hold on to the wall to walk most of the time, she also walked like she was drunk. She does't walk a straight line..more to the side, and bumps into the walls alot. I change doctors and still no one really told me much. A friend told me about a early invention service in our state, that will test any child under the age of 3 and provide any theraphy needed. I called them and they came out to our home and a physical therapist tested Kate and said she tested at a 15 month old level, at the time she was 27 months old. This was a test of her gross motor skills. They have been providing physical theraphy 2x a week now since March 2000. The physical therapist comes to our home and works and plays with Kate for a hour each visit and the state will pay for it until she turns 3. She will be 3 in December and the school system is suppose to take over the thearpy but they say Kate doesnt qualify for the program because she has no other delays except for her gross motor delay. If she needed speech theraphy then they would pay for it and her physical theraphy. We have insurance but I dont think it is enough to continue the theraphy 2x week. We have had an M.R.I. done May 2000, which showed numerous lesions in the white matter of her brain. Also her periventicular ventricle is slighty enlarged. The Neurologist we went to said this was proably a mild form of Ataxic C.P. but he also sent us for metabolic testing, to make sure it was not a metalboic disorder. It was not. Anyways, I am telling you all of this to say.....we took all of this upon ourself to find out what was the problem with Kate. After the state program told me how delayed she was we made an appointment with the Neurologist, who later sent us to the Genetic doctor. Our pediatrican made me feel like I was stupid or crazy for doubting his word that Kate had no probems. So call anyone or everyone you can think of to find someone who will listen to you and you know what....if you are wrong what have you lost? But it has been a fight all the way. Cathy
I have a two and a half year old boy named Skylar who was born 9 weeks early due to a car accident we were involved in. I went to my doctors office and started bleeding at 31 weeks gestation. They sent me to the hospital and within 4 hours my very tired doctor sent me home still bleeding assuring me things were fine. Within five hours I ruptured completely and they took Skylar by emergency c-section, but not before he swallowed too much of my blood and lost oxygen to his brain. They noticed the first signs of CP at 9 months old. A nurse came to our home for a follow-up visit and mentioned the possibility. His feet are very turned in and when he wasn't walking at over a year we became worried. They then decided to do physical therapy. It helped but didn't correct the feet. Eventually, he saw a neurologist for the third time a few months ago that finally diagnosed him with mild cerebal palsey. We were devastated because we'd been told the feet may grow correctly, they may be able to put corrective braces or shoes on him and now they are telling us it will never get better or never get worse. We are lucky he can walk, though he falls constantly, bumps in to walls, has no depth perception, his left arm swings when he walks but the whole right arm remains by his side. He wears a helmet outside to cushion major spills. He has three older brothers who he tries desperately to impress and keep up with. It took a long time and lots of insistance to finally get in to see someone and for him to get diagnosed. We found out today that his MRI that he had done two weeks ago came back as they anticipated. Definately CP but mild at that. We are looking into gymnastics and eventually tae kwando for balance issues. His speech seems fine. Motor skills very weak on the right side, but improve daily. He is left hand dominate but not by choice. Though we feel very lucky to have him here with us we are at the same time very scared of his future and how others will treat him. Thanks for taking the time to read this. Michelle