CP Parent Message Board
Im looking for a little feedback
Im looking for a little feedback
8/6/09 5:31 PM
Good Day Everyone -

I am located in Arizona and am a foster parent. I have been approached about fostering to adoption a little boy with Hypotonic CP. He is 2.5 years old. I have not met him yet. I have seen photos, and asside from "looking" small/frail, he appears to be fine. He apparently was receiving physical therapy but that has now stopped since it seems, he has "caught" up in the physical abilities. I have been told he does receive speech therapy and now is about 4-5 months behind in his learning.
I have been told this is a non-degenerative form of the disease, but surfing the internet, I seem to get all sorts of conflicting information. As a foster parent we see everything, however this is my first experience with CP. I thought Id go to the experts...The families that love these babies. Any advice, good reading, web-sites etc would be appreciated.

What can we expect? I know its hard flying blind, since Im doing that now in asking the questions, but Im just starting the research.

I hope I have not offended anyone with my ignorance. Your time and information is very much appreicated.

Amy in Arizona
RE: Im looking for a little feedback
8/19/09 2:52 AM as a reply to Anonymous.
I am a parent of a child with cerebral palsy. My son also has Landau-Kleffner Syndrome (separate from the CP, so don't think your boy will get this), so my son has different issues to deal with.

In truth, the physical portion related to the cerebral palsy has not given us much concern because we have so many cognitive things we need to approach. Cognitive that may be resulting from ongoing seizures. It's also due to the location and severity of his damage due to an intrauterine stroke.

I think it's important for you to go in with eyes wide open. The internet can only tell you so much; other parents can only tell you so much. The truth is, each child with CP is so very different from the next. Some things may be "similar", like possible GI issues that are usually overcome with the assistance of laxatives. Other things are individual because of location and severity of damage.

It's probably a good thing you haven't met him yet....mostly for his sake. Maybe have a list of questions that a caseworker can get answers for. Questions such as, how did he get CP; where's the location; what duties are effected by that portion of the brain; what does this likely mean? Any sort of prognosis. Will you have financial assistance for any adaptive equipment. Can they assist getting him on medicaid as soon as possible.

Having a child with CP, I certainly wouldn't rule out adopting another. Our children are beautiful, capable little people who will open your eyes to a whole new, wonderful world if you give them the opportunity. Most importantly, for him, he will need parents who will be able to be strong and help him stand when others might seek to knock him down; someone who can advocate for them, push them when he needs it and hold him even more. If you can do that, if you can promise him that...you're a good match.

Good luck.

MiaHysteria
http://www.GeneralHysteria.com
RE: Im looking for a little feedback
8/22/09 2:30 AM as a reply to Anonymous.
Hi Amy... I am a mom of a now 7 yr old boy with spastic diplegic CP (basically he has high tone - tight muscles - in his legs) and had some low tone in his trunk. As written on this website, http://www.reachingforthestars.org/facts.htm, "Cerebral palsy itself is not progressive (i.e. brain damage does not get worse); however, secondary conditions, such as muscle spasticity, can develop which may get better over time, get worse, or remain the same." I admit I find it hard to believe that a child with hypotonic CP could be "caught up" at 2.5 yrs, but every child with CP is different. If you do foster this little boy, the best thing you can do for him is to coordinate with Early Intervention to have PT, OT and ST evals.... and consider hippotherapy (PT with the help of a horse) which will significantly help him build more strength. The less effort he will need to make in coordinating his muscles, the more his speech will improve and less he will fatigue when trying to learn new things. If he is small and frail, he may have feeding issues or GERD (my son did/does) and may need to also see a GI or Feeding Specialist. He needs a family who will love and fight for him and he will thrive.
RE: Im looking for a little feedback
9/13/09 4:23 PM as a reply to Anonymous.
Hi! I'm new here.

My son is two (twenty-six months) and has the hypotonic form of cerebral palsy as well.

Like someone else said here, the initial injury is done--the child should not get worse. However, there are some areas that may require management. In general, I find that these are less in kids with the hypotonic forms of CP. For example, we take no medications for my son's tone and we've had no surgeries because of his CP. There's another boy in our area with the hypertonic form of CP and he's had botox injections and hip surgery and now he's looking at another surgery.

If they think that the child is "caught up" at two and a half, I would think that it is a very mild form of CP. Here is a uselful tool for determining a child's level of involvement and potential issues: http://www.chsd.org/documents/CP/gmfcs.pdfMotor Classification Scale for Cerebral Palsy

I can think of one child on the 'net who meets the description of "mild case of hypotonia" and that's Holland over at Holland and Eden: http://micropreemietwins.blogspot.com Holland is the one in the glasses--not the one in the wheelchair.

I have my own blog, but my son falls more into the category of moderate as opposed to mild. My blog address is http://birdonthestreet.blogspot.com

I wish you the best of luck in this decision. CP kids can be very inspiring, but it's always good to go in with both eyes open!

Katy