Discussions that mention botox

Cerebral Palsy board

Hi all,

I have a son with CP from birth that is just about to turn 2 this month. The last 2 years have been a bit of a rollercoaster as many of you will know. My son has been diagnosed with CP of the Athetoid Dyskinetic Type and he can also be decribed as Quadraplegic (4 limbed CP).

It has taken me and my partner some time to come to terms with his disability (Me in particular). My partner has been a great mother and will continue to be. So far she has supported him in so many ways and looking for so many different ways to help him. She does struggle to understand the reasons behind his abnormal movements and slow development. She so wants him to walk and talk. (One of the biggest questions for CP).

I, on the other hand have convinced myself I understood his CP. I've recently realised that I am badly mistaken and am now starting to regret not looking into this further. This sudden realisation and wake call to do more for my son has come from a recent meeting with his developmental doctor and a specialist in Botox. My partner believed Botox was the answer to helping him walk. In turns out that his Quadraplegia combined with his dyskanosis does not make him a good candidate for Botox.

I then got busy, scouring the web for the type of CP they diagnosed my son to have. There are things within the description that can be seen in my son but there is room for argument. Saying this I've come to realise that even getting my son to talk is going to prove as difficult as walking (even sitting). I read posts on adult sufferers of CP and they offer hope because they consistantly prove physicians wrong (in regards to motor ability). What I do not see is any posts from CP suffers of Athetoid Dyskinetic type.

Ok so everyone with CP is different. My son appears to be intelligent though he struggles to communicate. He has a wicked sense of humor and is loved by many. I want the best for him as many other parents do. I want him to get the best out of education but with his restriction in movement and speech I am concerned he will not get the most from it.

Basically I am asking what are the chances? I have a list of different treatments including alternatives that we are considering. I just want to know how likely he is to move and talk. I am a computer programmer by trade and if he is going to struggle vocally maybe I could help him through use of computers. Why cannot we use Botox? I just feel like he has been labled like he is never going to sit or walk unassisted. Is this true? Anyone experience any different? I just wonder if there is any hope?

I realise many have been here before and there is no real answer, but at the moment my hopes of my son living as normal a life as possible are diminishing. I just need something to maintain some hope.

Many Thanks
Welcome to the board! As KarimsMum said in another thread, everyone's CP is different so it kind of hard to make judgements based on other people's progress. Keep in mind though that doctors can be proven wrong!

People get turned down for botox for many reasons. I turned down because my hamstrings are already too weak from ortho surgeries, and if I were to have botox it would weaken them so much that I wouldn't be able to stand. That is where CP has been helpful in a sense... if my hamstrings weren't so spastic/tight I probably couldn't walk, and I walk quite well for someone with spastic quad CP.
There is always hope.

My youngest son (now 8) was not diagnosed until he was 3, but we knew something was wrong long before that. His developmental delays were blamed on various issues (including just being "slow"), and at times I despaired, particularly when we realized that he had no concept of abstract representation -- he couldn't "see" pictures or play with a "model" toy (such as a doll or a toy stove or a truck). With much therapy, he is walking now, rather shakily, and he just toilet trained last year. He can even sign most of his ABCs. I don't know if he will ever be able to really talk, but I have hope. Last week, he managed to beat his older brother on the Wii bowling game, something his older brother spent months training him to play. We were all so proud that we were crying. Some things he has learned to do. Some things... I don't know how long it will take to teach him that clothes have a front and a back... But there is hope.

The most important thing is finding out your rights as a parent and your child's rights as an individual with disabilities. Then assemble a team. Find good therapists: physical, occupational, and speech. Find a case manager if you need one. Look into what your area has in the way of special/developmental education. In the US, many states have Infant/Toddler programs that provide services for children with disabilities under age 3. Then the children transfer into the school system.

Find good doctors, good orthopedists, good clinics, etc. It sounds like your partner is already doing some of this research. Good. That task has occupied much of my life for the last 7 years. I feel my efforts are paying off, slowly but surely.

Try alternative therapies. I don't tend to be a holistic medicine type person, but my son responds surprisingly well to various sensory integration techniques.

The road ahead can seem long, and the progress depressingly slow at times. While my son has a supportive extended family, I long for the day he will have friends. But at one time I feared that he would never be able to read or recognize signs. When he was six and still in pull-ups, I wondered if he was even capable of bladder and bowel control. Those fears are mostly resolved (we're still working on the reading), but new ones emerge. The likelihood is that he may never do all the things he wants to do, but we won't know his limits until we find them.

Plus, new therapies are coming out regularly. Botox was relatively new (at least in our rural area) 5 years ago when my son was going to clinics (we found HAFO's better for his condition). Something better for your son may be just around the corner.

Best wishes