I'm Sarah, and I have 2 1/2 y/o GGB triplets. They were born 11 weeks early and my identical girls suffered brain damage PVL (which is another long story). Anyways fast forward seven months both girls were right on target for their age and they both were dx with Infantile Spasms. The seizures made all of their milestones go away. When Anna, triplet #1, became seizure free, she had developed high tone in her legs and low tone in her trunk. Her toes now constantly point and her feet curl out at the ankles. Ayva, triplet #2, didn't become seizure free until just recently, in March. Right after her seizure dx she too had high tone in her legs. NOW, she is severely hypotonic. Her feet also tend to point, although not as much as Anna, and curl out at the ankles also, but again not as severely as Anna. They were both dx with spastic CP, even though I don't feel like Ayva fits into the spastic catergory. They boh have Cortical Visual Impairment (CVI) and are globally delayed. My son, the only one of the three who didn't suffer bran damage, is doing well.

I have tons of questions for other parents, especially about Ayva. I know CP has so many varying degrees, but when I've asked about others with CP, they tell me it can vary so much and that's not really answering my question.
Can CP go from high tone to low tone?
Do your LO's who have high tone, does their feet curl under at the ankles?

And I know I'm still in the denial stage of things, but I've done some research online (which isn't the brightest idea I ever had) and found something called Dopa Responsive Dystonia. It mimics CP but is basically cured with meds. I know I would like for my girls to have that rather than CP, but I can't really tell right now if it's my brain saying the symptoms match or my heart, you know?

Thanks.

Yes I definitely agree with you LeaciesMum. It is really hard to accept that one day as we wake up in the morning, our son has CP. There are many adjustments to be done in that case.