About 15 years ago I started a group called Myelin-Mail for parents of kids with myelin disorders as my son has. You can search our letters, I have kept it free of spam but most of the kids are older now and unlike you we are not so nervous anymore. Every kid is unique, my son stabilized but he only has use of the left arm and hand. Stay in touch with the professionals. I actually moved my family twice for medical reasons. We live in Rhode Island now and my son was seen regularly for many years at the Hasbro Childrens' Hospital. Now he is 16 and needs less visits.
The kids develope how they develope and doctors only have general information. They can't see the future. Like everyone else, the kids are individuals. I wish you patience, that's what I often needed. When one doc saw my kid at 6 he said take him home and don't challenge him. The other doctor in the same office took my son and treated him for years until we moved to RI. My son attends regular school. You probably understand how I could consider myself lucky. You could write a letter to Myelin-Mail.
Originally Posted by VeryNervousMommy
I am form Texas I am New Here Just wanted to Say "Hi". If anyone has any info on White Matter Disorder or Cereberal Palsy plz feel free to share. I am in a whirlwind right now confused. Just had one child diagnosed with cereberal palsy. Seizures are awfull and last MRI showed somes signs of permanent damage to her brain. Cant find a med that helps.
My youngest was diagnosed with White Matter Disorder and Autism. From birth i knew they were both small and developing a little slow and never quite on track with kids their age. But no huge flags. Until about 3 yrs ago. Kynley started drooling and walking with her tilted and kinda hunched over. (like her head was heavy) Been in and out of Hospitals ever since.She has No Fear and has these Awful RAGES. She Screams as loud as she can for as long as she can. She will hit punch throw things and then like a light switch shes done. She is so loving and wants to be held but in 2 seconds she doesnt want to be touched. She has days where she forgets things we done the day before. But she has a Smile that will melt your heart. And she loves to make people laugh Shes A Mess.
Tasia had her first seizure at 1 yr old. I knew instantly something was wrong. Her speech isnt as clear as it should be, and her balance is terrible constant falls, tripping, its gotten so bad that she broke her elbow during a seizure. She cant sit unattended now even on the potty. She just seems to continue to get worse. She is A Very Smart child Her Grades are Terrific. She loves to read and can write better than I can.She is the sweetest child I have ever met. She is quite and loving always encouraging to her sisters. Always trying to do things that are hard for her. Like Dressing Herself but she tries. She never loses her smile. But I see the pain in her Eyes. Shes my child I see the good and the bad. And I am truly affraid for her. I am affraid for them both.For some reason my heart feels like Kynley is so strong and so fearless She will push through this with No Problem. But Tasia is so weak so tiny and so fragile.I struggle not being able to make things better for them. I just am truly overwhelmed. I still dont even know what These things mean White Matter Disorder? And I was told that Cereberal Palsy doesnt progress, but my child struggles more with each passing day???
Any Info Plz Share......