hypotonic CP

[The Real Cinderella]

My second daughter is 4 months old and suffered deprivation of oxygen at birth resulting in brain damage.

She currently cannot hold her head, and is very floppy and tends to be very lethargic and favours her right side. She doesn't grasp toys or reach out, she cannot roll over etc

Just wondering if anyone had any experience of this kind of cp and can you tell me if your child walked?

 

[kirstenb1]

I'm sorry I don't have experience with CP. But our younger dd was dx'd with hypotonia after she couldn't hit any 6 mth milestones, as far as gross motor skills. She was a very floppy baby, and still is a little weak as far as her grip, doing things like high fives, trying to kick in the pool, etc.

She's nearly 6 now. She received physical therapy through EI starting at 7 mths. She did walk at 19 mths. Her PT said not to rush it, because children need the muscles to throw their arms out to catch themselves when they're first learning to walk, and she had delays throughout her body.

Anyway, have you been in touch with Early Intervention? Some states call it Birth to 3. It's a local government program that provides various services to children with developmental delays. Best wishes to you and your dd.

 

[MaggieMollyMom]

My second daughter is 4 months old and suffered deprivation of oxygen at birth resulting in brain damage.

She currently cannot hold her head, and is very floppy and tends to be very lethargic and favours her right side. She doesn't grasp toys or reach out, she cannot roll over etc

Just wondering if anyone had any experience of this kind of cp and can you tell me if your child walked?

My daughter was/is hypotonic and walked at 17.5 months...she did great! Lots of therapy early on. She also had a feeding tube until 18 months because of her hypotonia and inability to suck/swallow/breath at the same time.

good luck to your daughter!!

 

[TeddiBarra]

One of my twins has mild CP- specifically hemiplegia/hemiparesis (right sided).

One thing I wanted to mention- at her age, she may be hypo- but it is possible that it can change as she ages to hyPERtonic tone. This is very common. This is not to say it will happen, but it certainly can.

Get PT and OT started by whomever you can. If you have private insurance, or even state insurance, get them to get you in with pediatric PT/OT. All 50 states have some version of Early Intervention. If will be scary at first, but pro-active, more hands on, more interaction is going to help her. What used to be thought was that brain "damage" was permanent. The more we learn the more we find out that there is what is called "plasticity" in the brain, especially in a pediatric brain while it is not yet hard wired. If you can get it via EI and privately, do that. Go to the PT appointments and stay, and try and have the therapist work out a home programs that you and other caretakers can do on a daily/weekly basis.

If you live in CA, PM me and I can give you more info about some special CA only programs. There are some good books out there too, if you want I can PM you a list of a few I've read.

 

[minkydog]

My son Christian is very hypotonic as a result of his chromosome disorder. He has mild, mixed CP--his arms & legs are strong, but his trunk and neck are weaker and floppier. When he gets excited all that can reverse in an instant and suddenly we have Mr. Jelly Arms arching his back or neck in some weird way and flapping his hands. God love him...

When Christian was little nobody gave us any hope. He was limp as a dishrag, couldn't bring his hands together to midline, couldn't make eye contact, or roll over, or do pretty much anything other than stare at the ceiling. Our doctors basically said, just love him as long as you have him. Yeah. Thanks, Doc. Here's your check for, oh, about $100,000...

But here's the thing...We never gave up on Christian. It was a lot of hard work--PT, OT, Speech,horse therapy, aquatic therapy-- but we kept at it. We never gave him a pass. I expected to accomodate his needs, but I would not give in to going easy on him because he was disabled. It took a long, long time but Christian *did* start to make some progress. He was very baby-like for over a year, very small and lethargic. He was 17 months before he ever smiled at me, about 2yo before he could tolerate actually baby food in him mouth. But then it seemed like he started to add some things, and each accomplishment seemed to unlock the door to another skill. Christian sat up at 2-1/2yrs and finally walked alone at 5-1/2yrs.

Today, Christian is 16. He still has the symptoms of mixed CP. His legs and arms are strong, his abdomen is weaker. He stoops a little when he walks because his neck muscles are weak. But the kid walks about 2 miles a day! He eats everything in sight. He swims and swings and kicks a ball. Christian never stops moving. We call him the Incredible Amazing Wonder Boy.

My advice to you is this: Never give up. Whatever it takes. When you're going through hell, keep going (Okay, that one's is from Winston churchill.) When we go the news that Christian would never walk, talk, eat, play or do anything, I just wasn't willing to accept that. I realized that NONE of the doctors was raising a handicapped child and none of them had even SEEN a child with Christian's rather rare disability. All they had was what they read in a book. No crystal ball. So we made our own future.

I wish you the best. You can do this.