New here... - Cerebral Palsy Message Board

Marcus&DeanaMum · 09-10-2007, 04:46 PM

Hi My name is Rosalie i have a 4 year old son and a 2.5 yr old daughter who has spastic displegia cerebral palsy and peri ventricular leukomalacia.She was diagnosed at 1 yr.
I am just wondering what the future is for her atm she can sit independently and can almost position herself to sit,commando crawls and pulls herself to her knees.She sees a st,pt and ot.
She is due to have botox in the new year and will also have surgery for her strabumis, she will also get afo's nex week.
I guess i am wondering walking etc.. wise what things will be for her. She is a very smart little girl.
Is there anyone who has children with similar issues..

open_the_door · 09-10-2007, 10:00 PM

Quote:

Originally Posted by Marcus&DeanaMum

Hi My name is Rosalie i have a 4 year old son and a 2.5 yr old daughter who has spastic displegia cerebral palsy and peri ventricular leukomalacia.She was diagnosed at 1 yr.
I am just wondering what the future is for her atm she can sit independently and can almost position herself to sit,commando crawls and pulls herself to her knees.She sees a st,pt and ot.
She is due to have botox in the new year and will also have surgery for her strabumis, she will also get afo's nex week.
I guess i am wondering walking etc.. wise what things will be for her. She is a very smart little girl.
Is there anyone who has children with similar issues..

My son is now 3 and he has CP diplegia. It is more like triplegia because his left arm is also involved and of course his legs. He is walking with a walker now, which took a year for him to use. You can't force someone to use it, but he is now willing, and very interested in doing so now(Thank God). He started getting Botox back in February 2007, and has since received it three times now (Feb., May, and then in August) it is basically every three months. It has helped him the first two times, but the third time it has been very hard on him because they gave him more units(200). There were a total of 10 shots. This last one he got, they gave him alot of botox in his hamstrings which really has paralyzed them, so he has to stand and use his hips more. It was very difficult for about the first 2-3 weeks because he wasn't used to using his hips and glutes(butt) and that way for walking. He is now adjusting, and I need to actually make an appt. tomorrow for a follow-up with the neurologist. I'm so busy. My son who has CP is a twin, so altogether I have 4 children. My husband is deployed so I am so busy.

You need to understand that every child is different and CP affects them differently too. Peter had a 2 grade brain bleed and periventricular leukomalacia too. I have learned this and am still learning so much more. Peter didn't get diagnosed with CP until he was 2 years old. They told me that he would walk when he is 3(they told me that when he was one years old). I never imagined that he would use a walker. I have had a very difficult time accepting this, but I and the family have come a long way. Everyday we see progress, and our Peter is a very happy and loving child. There are so many difficult moments, but you learn to deal with them one day at a time. We are truly blessed, and this has brought the family together even closer. You learn to appreciate things so much more. It is so difficult for Peter to just sit because every movement has to be broken down, and learned correctly. I really cherish the simple things in life now.

I hope my info. has helped you......thanks for reading........

KarimsMUM · 09-11-2007, 05:42 AM

Hi,
Welcome both of you. I have a very similar situation with my son, pvl grade one and at 3 1/2 uses a walker now with interest...it took a while. He has botox every 6 months. Karim is lucky...his powers of speech are very dominant and he talks non stop which is so great to see!!! He has personality plus!! In the last botox they did hamis and calves which made him crouch a little so next round (round no 3) scheduled in Nov will be just in the calves. He has a lot of clonus in both feet but more in the left. And his right arm is also a little stiff.
Karim sat at age one too and commando crawled at age 2 for a long time until he got to his knees. He w sits A LOT!!! Which is very common in diplegics. I have noticed in the last few month hi concentration and comprehension skills are not all there and his physio said that diplegics in his opinion seem to be like that a lot. Also his motor planning skills need a lot of work. Karim has been in AFO's since the age of two and he is now wearing hinged afo's without resistance bands.
Toileting is a bit of an issue and I'd love to hear from anyone that can give advice on what worked for them in term of strategies, I'll post in another thread for that issue.
But as the other post stated, cp is so different in each person, it is as individual as dna and that is what is so frustrating as a mother because you have no guide of benchmark a lot of the time. You can listen to advice from several well meaning people, from experts, doctors, therapists, but in the end you will have choices and decisions to make that don't always seem clear or easy but remember you are the parent and you know your child and knowledge will get you a long way. Be involved and ask questions and demand satisfactory explanations.
And last, you can always post here. I have learned so much about cp from reading over peoples postings. Thanks and welcome.

Marcus&DeanaMum · 09-11-2007, 01:40 PM

Thanks so much.It is great to hear from people going through the same thing.

Deborah7 · 09-11-2007, 04:59 PM

Hello, Welcome aboard Rosalie and open_the_door.

God bless
Deborah