Discussion Forums
Fri, 05/21/2010 - 11:16
My son Ronan has cerebral palsy..hemiplegic but with triplegic tendencies... it happened during my pregnancy when he had a brain bleed in utero at 34 weeks. He also has a seizure disorder due to the brain haemhorrage and his condition. The brainwaves and he static in the brain, if it happend to hit the scar tissue where the brain bleed happened.. it can cause the seizure , so I guess the medicine tricks the brain in some way,,, it still amazes me :)He has only had two episodes whenre this has occurred..thank God... Nov 2008 and Feb 2010..it is very well controlled now..the 2nd episode happened due to his growth spurt and his body requiring an increased dosage twice daily of the seizure medicine..Keppra.. it combines well also with other meds if he has a cold etc ..like tylenol or if he is ever on an antinbiotic... , there is never any issues..just in case anyone is researching types of seizure meds for their kids with their neurologists etc.. Ronan's type of seizure is the atonic type, where he looks like he is falling asleep and appears a little out of it.. ..but at least we have it controlled now.
He is doing really well..thanks to great PT, OT and Speech therapy... we are continuing with swimming this summer and are trying hippotherapy ..horse riding therapy is supposed to be very beneficial...he will start preschool in Jan, as he is a December baby.. I dread that moment, where in fact I think he will absolutely love being with his peers.. his Early Intervention therapists have set him up in the summer to do a transition group, where I get the opportunity to leave the room occasionally, so that he gets used to hanging out with some of the therapists and assistants, without seeing me there , throughout the whol 2 hours that we are there.. they do singing, art and crafts and story telling.. he loved his group last time that we did it.. anyway just wanted to fill you in and give you a bit of background into out family... Ronan is doing awesome and had successful eye surgery this past April to correct the strabismus in his eyes... his eyes looks fantastic....we are all so proud of what he has accomplished up to now... the "we" ..being my husband and I and his big sister (who is 6 years old and the most understanding child that I have ever met), I am so proud of my family.. we are doing a walk here in Boston with United Cerebal Palsy on June 6th, to raise awareness of CP and to raise funds for children and adults with CP, helping them with supplies etc, equipment, for the adults.. assistance in the workforce and living independently
I hope you have enjoyed reading about my son :)
Hi my name is Liz it was nice to read about your son. My 5 year old (as he says he will be 6 in 9weeks) has cerebral palsy right sided hemiplegia with some spacticity, I feel very lucky has he only has it mild I believe we are very blessed to have him, although his attitude lately is like a teenager he is really finding his feet. He was born 33 weeks into pregnacy, they had me on standby all day for emergency ceasearean as I had been in slow labour a month, later in the evening they gave me pethadine and said they were sending me home in the morning, within half an hour the consultant who had out me on standby came back on shift and checked the room for a new patient when he found me he was quite surprised, he checked my machines and immediately took me into theatre, my placenta had come away and the baby was in distress, if he hadnt have come when he did my son would have died. He was sent to SCBU for 2 weeks and finally came home, he was a very sickly baby wouldnt take his baby milk and at 16 months old we noticed a problem, we saw a consultant who refferred us to a speacialist consultant who set up therapies such as physio sppech etc and a year after we noticed the problem we were given the diagnosis, we have been very lucky medical wise professionals have been brilliant he started school 3 years ago first 2 years were brill but this year has been pretty bad as they dont know how to really deal with him, they had four disabled children in the school (including my son) 3 in the same class, 1 left last june the other left this January, then there is my son and the 4th child only comes 1 day a week and has a full time carer. My son wears a splint on his leg, has physio in school once a week with a professional who comes into school he attends speech therapy as his speech is pretty bad and he stammers badly, worst part he has 2 part time teachers who dont have a clue what they are doing, I am hoping next year will be better he his a pretty smart kid and I can say that because he is learning to languages at once and doing really well with it, the school just dont understand about special needs but believe me I have given them a good kick up the rear end