Any kiddos out there Epileptic with Cerebral Palsy?? If so ROP->

Caroline - posted on 07/03/2012

My daughter was born 9 weeks premmie, weighed 3 pounds & 11 ounces, she had many challenges. She was not able to walk un-assisted, she needed support to sit up, druelled constantly, developmentally delayed, frequent body tremors, some seizure like episodes, kind of in a daze all the time, clenched left hand, choking on her food, speach problems, left side weakness etc tec. She was elevated on her toes when holding her to walk, she was splinted for a leg brace & they wanted to give her botox, but after researching botox and discovering how its made and there were no long term studies I decided against it. Her life was restricted & so was mine ...and it looked this way for the rest of her life ... & mine. I felt hopeless.

We were attending all sorts of treatments and therapies which cost a lot. A friend told me about some special wellness supplements from a particular company, she started taking them in her yogurt, after one week she was up walking un-assisted, it made an immense difference to her brain function, memory, balance, mood & cognition in a short space of time. I was elated!

I am so grateful to the person that told me about this incredible technology. She now has a life now ….. and so do I. Its now over 14 yrs later and she continues to take these special nutrients, she has attendednormal public schools, now she is almost 16, in a few weeks she begins driving lessons and has just started an after school casual job in a fast paced food takeaway.
http://www.navig8.biz/LifeStyle2

Caroline - posted on 07/03/2012

My daughter was born 9 weeks premmie, weighed 3 pounds & 11 ounces, she had many challenges. She was not able to walk un-assisted, she needed support to sit up, druelled constantly, developmentally delayed, frequent body tremors, some seizure like episodes, kind of in a daze all the time, clenched left hand, choking on her food, speach problems, left side weakness etc tec. She was elevated on her toes when holding her to walk, she was splinted for a leg brace & they wanted to give her botox, but after researching botox and discovering how its made and there were no long term studies I decided against it. Her life was restricted & so was mine ...and it looked this way for the rest of her life ... & mine. I felt hopeless.

We were attending all sorts of treatments and therapies which cost a lot. A friend told me about some special wellness supplements from a particular company, she started taking them in her yogurt, after one week she was up walking un-assisted, it made an immense difference to her brain function, memory, balance, mood & cognition in a short space of time. I was elated!

I am so grateful to the person that told me about this incredible technology. She now has a life now ….. and so do I. Its now over 14 yrs later and she continues to take these special nutrients, she has attendednormal public schools, now she is almost 16, in a few weeks she begins driving lessons and has just started an after school casual job in a fast paced food takeaway.
http://www.navig8.biz/LifeStyle2

Ruth - posted on 09/01/2010

My child does also have CP. His is spastic and it affects all 4 limbs. He has been seizure free since February. He is currently 15 months old but was 12 weeks early. He too does not sit up, crawl or walk. My OT said something about Botox for loosening the muscles, I can't see how that would have an adverse effect on any meds. From what I understand they try this usually as a last straw and it has it own set of side effects just like everything else. Maybe talk to your neurologist regarding. My child starting doing much better and has not needed anything other than his daily stretches. I really think the seizures play into the CP, specifically when not controlled. God bless you and your family.

Shelly - posted on 08/29/2010

Don't ever give up hope-they learn about new treatments and drugs for Epilepsy every day. You have to be well informed about side effects because some drugs do have difficult side effects. Sometimes you have to weigh the pros and cons of a drug or sometimes try a new drug to see if it helps or not. My daughter was on a drug several years ago that was only approved by the FDA for a short time-they later took it off the market I think-but it did help when she was on it. I did not know at the time that this drug was weakening her immune system. She now takes a steroid and will always have to-to help her body heal and recover from illness and stress. My daughter in her 29 years has been on at least a dozen different drugs and combinations of drugs. She is now having fewer seizures than she has ever had in her life. As kids grow their med levels change and need to be adjusted, so having blood levels taken regularly as recommended is important. You don't want her to have too much or too little in her system at a time. It sounds like you are doing as much as you can for her- keep fighting for her. She may surprise you, doctors said my daughter might not develop beyond a 3 yr olds intelligence and that she may not live past 30-well she is 29 looks normal (but has like a 13-15 yr old mentality)and has reached a third grade level in math and reading. She is still learning-so don't ever give up on pushing her to do as much as she can. We will be celebrating her 30th birthday next February and plan to celebrate many more. Praying for you and your journey. Remember every child with epilepsy is different and each one reacts to medicine differently-it is up to you and her Dr's to find the one(s) that work best for her. I tried to have as many people work with my daughter as soon as she was accepted into as many programs to help her with her learning and speech problems and I really don't know where or how she would be doing now if I had given up and hadn't tried to get every available service for her I could. I worked with her at home every day and I think it helped her a lot. Keep fighting for what is best for your child. I always pray that God guides the Dr's hearts and minds to do what is best for my child-I am not a Dr and I know that I can't "fix" her myself so I have to trust people to help her and me so she can have the happiest life possible. That is ultimately what we all want for our kids in the end and it is no different for a child with epilepsy or any other condition they are dealing with.