Posted by Tammy Manassa
on October 01, 2000 at 13:28:53:
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:
Hi Melissa and Cathy. I have a four year old son who was recently diagnosed with Mild Static Encephalopathy from a ped. neuro docotor. My son has displayed alot of what you both described. He sat, walked and talked very well and on time. At two years old my doctor told me his tripping all the time was typical for his age. Again, at three years old they said the same. At four years old I told them it was not typical and we started to see specialist. He was only diagnosed two weeks ago. He has no shaking problems, but tested 9 months delayed on fine motor skills, and was a danger to himself going down stairs. He also has bowl movement problems, drools, and throws-up sometimes. In addition he has birth marks on his arms and upper body; I thought cafe-o-lay spots. These are all signs of his condition. His condition falls under very, very, mild CP, but the doctor chooses to call it Mild Static Encelphalopahty. He has had an MRI, which came out normal and is typical of this condition. My doctor feels there is a difference between CP and his diagnosed. However, if you go on the internet you will not find information on Mild Static Encephalopathy without first looking under CP. My son is receiving some services from our school district even though he is in preschool. All preschoolers are eligible, but first the school tested him. In addition, we just found out that our insurance will cover 60 visits a year because he was given this diagnose. Does all this sound familar. Did either of you ever heard of this condition while talking to your doctor. It is interesting how similar our stories sound, yet we are given different information. If you know anything on this I would like to know what you know. I feel great knowing I just found two other people with the issues. P.S. I had a normal delivery and know problems at birth with my son, so we don't know how this cam about. I look forward to your replies. Sorry so long. : : 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