Son with CP .. should he continue school?

April - posted on 05/12/2010

My son is 9mo and his doctor is already suggesting the pump. He has told me directly that they have pediatric pumps for small children. We have to wait til he is 3 but it is an option. Your son sounds lovely and I can't imagine your situation until I hit the school age for mine, but without a doubt I will do any and everything for him to feel like he is having a normal life. Dont take him away from his friends and socializing because your scared for him. That would be devestating. Best of luck to you

Iridescent - posted on 05/12/2010

Current pump information - and a phone number to call with questions.
http://www.medtronic.com/your-health/mul...
It's smaller than it's EVER been, at 3.4 inch diameter and 0.77 inches thick. That combined with the fact that it's for an adult (albeit small) means there really is no reason the surgeon can refuse if you are serious about controlling the spasms.

Iridescent - posted on 05/12/2010

I honestly don't know what type of doctors you are seeing, but I'd seriously consider changing them. The current standards for the baclofen pump are 35+ pounds. Does he weigh at least that? I'd guess so. Old standards were 25+ pounds, which is a very large difference for some, but not for most by the time they're 18 years. Being thin shouldn't make a difference at all considering they can always put a balloon in to stretch the skin in the correct area. There is so much that can be done. In addition, a doctor refusing to treat a known bone issue, that's malpractice. I guess I'd be pushing a lot harder for appropriate medical care.

Renee - posted on 05/12/2010

Amy i'm impressed you knew about OI!My late dh had severe OI.Our son has Oi and mild cp.Let him finish school.Also look into getting him on a bisphosphante drug to help with osteoporosis.pm him if you need more info.They help.

Cindy - posted on 05/12/2010

Let him graduate !!!!! YEAH for U Daniel :)

Janele - posted on 04/27/2010

I would keep him home. That's just my opinion though. It sounds like that is the best physical option for him. It is a very difficult decision!!! I know that as a parent of a special needs child, the decisions seem to be harder because this is completely new territory and not many people can relate. Best of luck!!

Michelle - posted on 04/26/2010

Hi. Is Danial capable of voicing his opinion? Our oldest is MIR/MI (dual diagnosed) but is capable of expressing himself quite well. Is there some way you can have home bound instruction for Danial? Would you consider doing home instruction yourself? Leaving school is very understandable in your situation, so I also ask you to think about how he is with and with out structure environment?

Lesa - posted on 04/25/2010

Daniel has limited speech and does use a communication device. He is able to say "YES" or "NO" pretty consistantly. In the morning we often get a loud "NO!" about getting ready for school. Once there he loves the teachers and other students. Has a GREAT DAY for the most part. I can find no Dr here or statewide that will treat him for the osteoporsis with meds. The bones of his legs are very small like those of the forearm. Daniel does take oral Bachlofen with some relief. He enjoys socializing very much. Daniel has had his hips worked on with extra on the right causing shortening of the leg. The bachlofen pump was refused since Daniel is thin around the middle. We were told the small pump was no longer made. He does have tube pump feedings at night and during the day for calories. Daniel also eats orally at times. His wheelchair is custom and even reclines for him.

Mayme - posted on 04/25/2010

Does he have an opinion on what he wants to do?

Iridescent - posted on 04/24/2010

Does he have osteoporosis or osteogenesis imperfecta? Osteogenesis imperfecta is "brittle bone" disease, osteoporosis is not. Osteoporosis does cause weakened bones, but it can be treated. If it is osteoporosis, why is this not being treated?



Pain meds - there are many non-narcotic pain medications, many newer on the market that may be appropriate to try. They would all be less likely to "put him out".



In regards to the surgery for the hip/femur, I cared for a patient with both the hip and head of femur removed (long story, it was done by a surgeon as a punishment for walking too much while she was institutionalized. This institution was headline news and shut down in the 1980s, but the patients are still alive in many cases). It required she be positioned carefully in bed and also she became wheelchair bound. Other than that, it didn't change anything! She was fully capable of taking baths and swimming, so I have no idea why a surgeon would tell you he wouldn't be allowed to after. This link is in regards to animals, but it's about the same for people as well. http://en.wikipedia.org/wiki/Femoral_hea...



Even not having a Baclofen pump, he can be on oral Baclofen for nearly the same result, it would just not be a continuous dose automatically done. I don't know the specifics of your case by any means, but I don't understand why a surgeon would refuse a Baclofen pump yet be willing to remove the head of his femur, as both are surgeries to address his pain. The Baclofen pump would actually be likely to benefit him more, considering it would effect his entire body and not just the hip.



Have you also considered a new wheelchair fitting? They should be able to make him one that fits well enough not to cause discomfort within the 90 minute to 2 hour range he would need to sit in one, at most, at a time.



Socialization is very important for every age. He is getting that from school, plus they provide therapy. If you choose not to send him to school, you could also consider a "work" type thing. These are local to us for individuals with disabilities, and they also provide the therapy needed by each, medications, care... They offer them in every state. http://web.mac.com/mndaca/Site/DT&H_Prog...



I sincerely hope you find some ways to help Daniel to be as pain-free and happy as possible, for as long as possible. By what is written here, it sounds like there are a lot of issues that should be addressed.