I need to ask parents whose children have C.P.

jenabr1705

My daughter is two and half and has C.P. all her life.  Progress is slow and she has stiffness in her ankle joints. She can’t talk, even though she’s coming along and walking isn’t possible at the moment.
She has  to wear glasses as she has a squint in her left eye and there might be a possibility an operation is needed to fix it,  Her paediatrician has prescribed her with a muscle relaxant to help loosen her ankle joints.  We as parents are not keen on this as we’re afraid it might effect her eyes or another part of her body.  I’ve expressed my concern to the paediatrician and  she wasn’t too concerned. I want the best for my daughter and would love it if she can start walking, but I’m not sure giving this medication is the best step way forward.  Has anyone had this and if so what has been the outcome? I don’t to make things worse for her. Thanks.x

hartill77

Hi jenabr1705 

Welcome to the community!  

Here is a link
 https://community.scope.org.uk/categories/physical-impairments-and-cerebral-palsy 

To give you some more info or parents in a similar situation. 

Hope this is useful 

Charlene 

JennysDad

Hello Jenny @jenabr1705 and a very warm welcome to you. Good to see you've encountered one friend already in Charlene.
I'm going to tag a gentleman in here who is extremely knowledgeable about CP and who should then respond to your post quite shortly. @Richard_Scope. We are, of course, rolling into the weekend now, so things might be slowed down a little, but bear with us and people will be in touch with you as soon as possible.
If you've any questions in the meantime, or if there's anything more you'd like to tell us, please don't hesitate. We are here for you.
Warmest best wishes,
Richard

steve51

Hi @jenabr1705

It’s great to meet you this afternoon.

We have got lots of info on “cp” here on our website.

Here’s the links to them for you:

https://search.scope.org.uk/s/redirect?collection=scope-meta&url=https%3A%2F%2Fwww.scope.org.uk%2FSupport%2FFamilies%2FDiagnosis%2FCerebral-palsy%2FCP-treatments&index_url=https%3A%2F%2Fwww.scope.org.uk%2FSupport%2FFamilies%2FDiagnosis%2FCerebral-palsy%2FCP-treatments&auth=wS6gvSz6QeOpOfirBk44ug&profile=_default&rank=1&query=Cp

https://search.scope.org.uk/s/redirect?collection=scope-meta&url=https%3A%2F%2Fcommunity.scope.org.uk%2Fdiscussion%2F38971%2Fletter-to-louis-new-book-by-parent-of-a-child-with-cp-free-books-for-your-reading-group&index_url=https%3A%2F%2Fcommunity.scope.org.uk%2Fdiscussion%2F38971%2Fletter-to-louis-new-book-by-parent-of-a-child-with-cp-free-books-for-your-reading-group&auth=eOn2fWapROOz6IQHsJgJEA&profile=_default&rank=3&query=Cp

Please please let me know if I can help you further with things!!!!!

debbiedo49

Welcome 

jenabr1705

Sorry for replying so late.  A lot has happened since I last posted. My daughter has been taking Bacolfen for several days now and we recently have noticed how tired she is.  Her eyes are baggy and she looks exhausted and that’s not like her at all. She attends private nursery when I’m in work and the past two days she’s been crying uncontrollably and nobody can soothe her.  Today was her last dose and I’ve been told I need to contact the paediatrician to get her to increase the dose.  Honestly I’m pulling my hair out as we’re not keen on increasing the dose even when a small amount does this.  The questions I need to ask are going back and forth and don’t have anyone to talk to who has similar problems. I’ve had a look at the links that have been kindly given to me, but I’m not having much luck.  Can anyone help me?

JennysDad

Hello @jenabr1705 and I am sorry to hear things are proving so difficult.
I'm assuming that the drug you're referring to is Baclofen? We're not allowed - we're none of us qualified - to attempt to diagnose conditions or dispense medical advice.
I have, however, done what you or anyone else could do and have looked up the side effects of Baclofen on-line. You need to discuss your daughter's condition with appropriate medical specialists and, if you remain unhappy, you can request a second opinion. If that is the way you decide ultimately to go, I ran this search phrase on Google and got some positive looking results: "how do I get a second opinion on a consultant's decision UK".
It's not a lot, but I hope that little may help.
Warmest best wishes to you,
Richard
@JennysDad

Zeezee

Hi @jenabr1705 I am sorry your daughter doesn't seem to be reacting to this medication too well. My daughter started on baclofen last year when she was 3. I was initially very concerned about the type of medication it is, but luckily she had a fantastic reaction to it and it is hugely beneficial to her. I am not a medical professional and can only share my experience. I can't express how strongly I believe that a mother knows her child best. Do as much research as you can and don't be pushed into giving your daughter anything that you do not believe is helping her, especially if you believe it is actually causing her more problems than it is curing. There are usually different options to every issue our children have. I hope you find a solution and remember it is you who spends the most time with your child and you know her best. Take care xx

Richard_Scope

Hi @jenabr1705
Good to talk with you. 
I will include a link to the potential side effects of Baclofen. https://www.rxlist.com/baclofen-side-effects-drug-center.htm
I've no idea if it would be appropriate for you but I do know that some people who need the benefits of baclofen but struggle with side effects get fitted with a pump that delivers the dosage throughout the day and night, see:
https://www.scope.org.uk/support/families/therapies/intracathal-baclofen

I hope that is of some help.