Cerebral Palsy

[jonij]

My 7 year old grandson has many symptoms that point to possibility of CP (Cerebral Palsy). Is there anyone who has suggestions re: how to get the pediatrician/neurlogist to listen to us? They keep shrugging off, saying he will outgow tremors tics and tiptoe walking, even though they are getting worse as he gets older. Any/all pointers will be greatly appreciated.

[curt]

You can read about CP on this website. If your not satisfied with the answers you are getting, get an appointment at a children's hospital with the neurologist there. See if you can find one that has an interest in CP, good luck

[jonij]

I did read about CP on this website - and no neurologist will touch any child in this medical system we have, without a referral. So what's the next step?

[jennifer312903]

I don't think at seven he will be outgrowing the symptoms you described. I think your best bet might be to find a new pediatrician who will listen to you. Or tell them, What could it hurt just to have it checked out to ease our minds and to catch it early enough to correct it ? Make sure that your are seeing a "pediatric" neurologist also. They better understand these kinds of things in children. You might be able to go to an orthopedist who specializes in pediatric care if he is tiptoeing so that they can look at the bones and muscles in his legs also. Having a problem with their hips and hamstrings can also cause them to tip toe. They can also prescribe braces to keep him off his toes and stretch his hamstrings. You can also stretch his legs at home to see if that helps with the tightness.

My son was born premature and has hydrocephalus which caused his cp. He sees a neurologist, orthopedist, neurosurgeon and opthemologist from Emory in Atl. Emory (Egleston Children's Hospital) University Hospital is a great hospital and they have done wonders for my son.

[pleasehelp17]

ive been having strange symptoms my whole life and everyone told me i was a drama queen or a hypocondriac but when i went to a new dr because i was tired of seeing a simple pediatrician they found a 1.7 inch whole in my heart...u will probably have to do what i did sit in the waiting room and DONT leave thats what i did it took 4hrs of sitting in an internists office for them to see me but when they did a simple ecg they found my problem sometimes thats just what u have to do sit in the office and dont leave they will ask u to leave but its illegal to actually make u leave , u also might want to try seeing an internist they work with everything from neuology to pediactrics...

good luck.

[CHRISTINE VAZ]

My son Tylor was born on June 28,2002 about six weeks early, about nine days old he started with Seizure, He was moved from ICU in Waterbury, CT. to Uconn Hospital PICU, to find out at the he has Cerebral Palsy, and Epilepsy. And our little Son Tylor will not do the following thing - Speak well, Walk, Eat well, unable to Move. We didn't know what to do we just look at each other and said " One day at a Time" TIME I hate that word. Because that all the Doctors kept saying "Time" Only Time will tell.Well Time did go by, Tylor is now 5 years old, and He speaks and says some words like bye, hi, out, happy, ma, da da, and he eats without a problem EVERYTHING.Tylor doesn't walk but he get by, he uses a Wheel chair, and a Pony Walker and in School he uses a gait trainer. He Loves School.Tylor has a speach theropy, Ocupational theropy, and he uses his AFO's Braces on his legs to keep his feet from pointing down on his toes. And He is always so Happy. Tylor sometimes still has seizures and we go to CCMC, ( Connecticut Childrens Medical Center) in Hartford, CT. He has them controlled by Medication ,Dilatin for Seizure and Dantroleen for his Tone for CP. Botox shots did help Tylor, and also Baclofen.Time it goes by and it does get easy when they get older just give them losts and losts of LOVE and KISSES, Because they are SPECIAL. xoxo

[natasha.fagel]

I am a child advocate, specializing in helping children with Cerebral Palsy.

Where are you located? I can help you find a physician if you live in California.

[Swampfox]

I agree with the others, find a new Pediatric Neurologist who will listen to you. I would also look up Centers for Independent Living to find a local Advocate who can help you get through the problems much faster and learn the pathways to getting help.

I have friends around me with all sorts of different disabilities, while I have my own. We have found that getting the help often takes someone who already knows the ropes.

Best of luck to you and your child!
Swampy

PS Some friends of mine have kids with CP who are using the BunniSteps motor assisted therapy cycles. After awhile of using them their knockknees pop apart and their feet straighten out. One person with CP said that it was like getting a massage without anyone touching her. <www.assistivetherapy.com> If it's reciprocal activity driven therapy (brain patterning)... wish you could see Gabrial's story... he's increased his vocabulary.