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Old 03-04-2007, 02:07 PM   #1
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mama65566 HB User
Question i am new here but have a 2 year son with cp what someon to talk to

Hi
i am looking for someone to talk to, i have a 2 year old son who has cp,cvi,ivh,pvl,epilepsy,he is almost 2 and cant speak, he just started to walk. i dont know anyone who has been through something like i have been through. i would love to hear any advice
thanks

 
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Old 03-07-2007, 02:37 PM   #2
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Re: i am new here but have a 2 year son with cp what someon to talk to

would love to chat with you! I have a son aged 3 with cp(spastic diplegia), he also had a pvl and diagnosed epilepsy. He is able to pull to stand using furniture, can use a walker for short distances and has afo's. My son at aged 2 also did not speak, maybe a few words. In the last 6 months his language has exploded and can ask simple questions. It is so great to see.
My son was diagnosed quite late at 18 months, the paeds wanted to make sure it was not just a delay due to prematurity. Lately I have noticed his fine motor skills not progressing as well as hoped, he is booked in for an assessment on the 15th. But otherwise is going as well as hoped. He has been through one treatment of botox and the next i scheduled for end of April. He does well with these.
Anyway, welcome to the message boards and hope to chat again.
Karimsmum

 
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Old 03-08-2007, 08:41 AM   #3
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Re: i am new here but have a 2 year son with cp what someon to talk to

i am happy to talk to someone who is has some of the same stuff as my son, what is this botox i keep hearing about?? what does it do??? i am glad to hear that your son is doing so well it gives me hope!! is this your first board?? this is mine... my mother told me that i need to find people that i could talk to, i was a little deppressed as i am sure you are no stranger to. i cant keep everything inside anymore.. i would love to talk with you too

mama65566

 
Old 03-08-2007, 09:15 AM   #4
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Thumbs up Re: i am new here but have a 2 year son with cp what someon to talk to

Hi ladies!!! I just wanted to welcome both of you to the board!!!

I hope you find the support and answers you are looking for.

My husband is why I'm on this board. He is 33 and has CP. He didn't walk on his own until he was about 7 1/2. i don't know how old he was when he started talking, but I'd imagine that it was delayed also. I'll have to ask.

Again, welcome to the board!!!

Becky

 
Old 03-09-2007, 03:04 AM   #5
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Re: i am new here but have a 2 year son with cp what someon to talk to

Hi mama 65566,
Yes this my first board too, stumbled on it by chance. I was getting very frustrated within myself as I haven't really had anyone to chat too either.
Botulinum toxin type A, or Botox, is a therapeutic muscle-relaxing agent that reduces the rigidity of muscles or unwanted spasms in a specific muscle. Botox is produced from the bacteria that causes food poisoning. In my sons case his lower limbs are affected by cp. The tightness or spastcity of the muscles cause his legs to turn in, his feet to hyperextend and hence the tippee toe effect. The botox treatment involves injecting very small amounts of botox into identified muscles which are tightened by the cp to relax them. This treatment in children is not used primarily just to relax the muscles although that is the effect, but rather to get them to do things thay would not otherwise be able to do. For my son his first goal with treatment one was to learn a better sitting position. ie to get used to legs out front straight rather than the w position. "Legs out front" is a big catch phrase in our house!!
My son is about to get his new walker, the crocodile walker, infinately better than the kaye walker and hopefully he'll take to it. I'm anxious for him to be up and about more on the walker rather than crawling.
Hi becky, would love to know what capability your husband has now. To what degree is his cp?
Take care girls!!

 
Old 03-10-2007, 04:26 PM   #6
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Re: i am new here but have a 2 year son with cp what someon to talk to

hi to both ladies,
thank you for answering my message!!! i am am so glad i joined... i just got so tired of not being able to talk to someone who know what is up. i tried to talk to my friends but they don't understand the hurt and sadness, they tell me that i should not be deppressed i will be perfect soon. and sadly i know that is not true but i have come to terms with it. i am so glad that i have finally found people to talk to!!!!!
mama65566

 
Old 03-10-2007, 10:56 PM   #7
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Cool Re: i am new here but have a 2 year son with cp what someon to talk to

Hi,
yes I get that "don't be so upset he'll be better soon" crap all the time. In particular from my in laws who simply don't understand and choose to stay ignorant because they maybe don't want to believe it. I have learned to live with it but I know that if they don't adjust their ideas then later on my son will see it. Right now he is only 3 so he is not aware fully of how they see him. But on the other hand I have a fantastic group of friends that do get it and are very supportive. One of them had her son diagnosed with autism around the same time so she went through the same emotional roller coaster. Getting a diagnosis like cp, it's very confusing and upsetting. Grieving for the child you thought you had and then having to deal with the child you now have to nurture and provide for. I'm not saying I love my son any less, probably more so, I think too being the mother there is more of a need to accept it and get on with what needs to be done. At least that was the case in our household. My husband still to some degree has not accepted it and finds discussing things like wheelchairs very confronting.
Take care

 
Old 03-11-2007, 12:20 AM   #8
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rhales199 HB User
Thumbs up Re: i am new here but have a 2 year son with cp what someon to talk to

Quote:
Originally Posted by KarimsMUM View Post
Hi becky, would love to know what capability your husband has now. To what degree is his cp?
Take care girls!!
I would say my husbands' CP is moderate. We've met people whose CP wasn't as severe as his, and people whose CP is much more sever than his. I don't remember if I mentioned in my previous post how CP affects my husband, so I will mention them now. It affects his vision (he doesn't have a lot of control of his eye muscles, so he can't focus, so he's legaaly blind), speech (but he is understandable), legs, and fine motor skills (and hand/eye coordination). His CP doesn't affect his intelligence- he is one of the brightest adults I've ever met (and he has a better memory than I do!). As far as walking- he used a walker or crutches until he was about 7. At age 7, he got to where he could walk w/o any aide short distances, and could walk long distances w/ a cane.
Unfortunately, when he was 13, he was in a car accident and broke 4 ribs, both collar bones, a punctured lung, his right jaw was broke, and part of his right ear was almost ripped off. He was also in acoma for 8 days. So when he woke up and started rehab, he had to totally re- learn everything- including how to walk. The effects of the accident made it so it is harder for him to walk now than before the accident, which is why he no chooses to use a wheelchair a lot, but he can still walk with assistance, and can do things like transfer from his wheelchair to another seat and things like that.

Have a good weekend, ladies!!

Becky

 
Old 03-12-2007, 10:33 AM   #9
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Re: i am new here but have a 2 year son with cp what someon to talk to

well i am so glad that we all found each other!!! it sounds like we all have allot in common?!? i have a couple of questions for you guys, my son has been through so much and his doctors dont seem to care or want to help. tyler has been mis diagnosed a couple of times and i feel like there is something that his doctors are not telling me??!! so i dont know what to do. i have tried to get other doctors to see him but they tell me if i make them then they will but they dont want to. he has been at cardinal glennon for his whole life, do you guys have any advice for me??? i feel i need more agressive doctors but cant seem to find them... my son is very delayed and does not seem to be getting any if at all better. tyler will be 2 next month but is at a 1 or under level, he is been there at that level for about 6 months now no worse and no better. i am just so frusterated.. he has a eye appt. the 21st and a nero appt the 2nd but when i go to these appts they llok at him and tell me how cute he is and send us on our way. i dont know what else to do!!!!! look forward to hearing from you guys on this.
take care ladies

 
Old 03-12-2007, 09:17 PM   #10
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Re: i am new here but have a 2 year son with cp what someon to talk to

Hi mama,
Yes it can be very frustrating not getting anywhere with the docs. Have you got a cp league or organisation that provides support? If so they may be able to provide you with some names of paediatricians that specialise in special needs children. The same goes for therapists. I found word of mouth worked well. With some medical staff you just have to be very vocal in your needs and they aren't cutting it let them know. My husband found the paed visit a waste of time. He said that the doctor couldn't answer any of his questions, but that's because sometimes they don't know. They have some idea of your childs path but it's not set in stone.
I was lucky, my sons paed has been with us since his birth. He consults in the special care nursery at the public hospital my son was at. And once my son was diagnosed I started seeing him privately.
It will be a very long road though. I for a long time saw no improvement but other people have.
How often does your son have PT? With my sons physiotherapist, we see him once a month and he gives us ideas on excercises to try and practise at home. With botox he'll go once a week.
Can I ask what grade was your sons pvl? My sons was grade 1 pvl on the left ventricle.
cheers!!

 
Old 03-12-2007, 10:34 PM   #11
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Talking Re: i am new here but have a 2 year son with cp what someon to talk to

i have a 4 year-old son that was diagnosed with cp at birth, low tone, speech delayed (can not speek yet), and does not walk yet, and is prone to to seizure activity. Actually he just had one yesterday and i was shaking so much i couldn't give him the emergency diastat and had to call the ambulance. I too am looking for someone to talk with about things, it is great to find another person with the same issues. How is it with your little on walking? Fun? My son is due to get botox injections in his right leg and arm, we hope that he will walk soon. Good luck with everything.

 
Old 03-12-2007, 10:50 PM   #12
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Re: i am new here but have a 2 year son with cp what someon to talk to

HI KarimsMUM!
I am new also and was reading your reply to mama and Becky. Not to seem nosey but have you heard about Selective Dorsal Rhizotomy (SDR) surgery? My little girl had it in December of 2006, we went to the best and got the best results. She was also on her tip toes and her feet were hyperextended but not anymore! Let me know if you want more information!

 
Old 03-12-2007, 10:56 PM   #13
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rhales199 HB User
Thumbs up Re: i am new here but have a 2 year son with cp what someon to talk to

Mama- you might call your local/ state United Cerebral Palsy, or your state Council On Developmental Disabilities (I think every state has one, but I might be mistaken), and see if they can give you any suggestions as far as Dr.'s (or anything else, for that matter). they should be listed in your phone book (the DD council would be under state gov't), or goooogle them on the internet.

Welcome, Abbeysmom and Jesse4!!!!

Becky

 
Old 03-13-2007, 08:11 PM   #14
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KarimsMUM HB User
Re: i am new here but have a 2 year son with cp what someon to talk to

hi abbeys mom,
I did actually read about this somewhere, not sure if he would be a good candidate or not. His afo's seem to be able to keep his feet in place and his botox specialist told me these are going to be long term aides for him. How is your girl now? Can she walk?
Hi jesse4, that must be a harrowing experience for you. I have a friend who has a son with cp and has seizures almost every week, which more often than not involves a trip to the hospital. I am very lucky with my sons seizures, we have them under control and if they stay like that until next year then we can think about reducing the meds. Good luck for the botox treatment, it can work wonders. My sons walking is very trying at the moment, his abductors (?) are very tight and his scissoring legs make it very difficult. He is getting injections in the hamstrings, calves and abductors this time.

 
Old 03-15-2007, 01:45 PM   #15
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Re: i am new here but have a 2 year son with cp what someon to talk to

welcome to all that wants to talk..... i have yet been able to find anyone who knows what grade his is, but i did my own search and according to his symptoms he had the 2nd to worst or the worst. i don't even know what type of cp he has, i have tried to ask but i get the run around. i have tried to contact some foundations and such but had no luck i cant seem to find anything in my area, i tried the st louis area but have not recived anything back yet. we go to the eye doctor on the 21st and the nurolagist on the 2nd so i hope everything goes well. my son is walking but not so well, when he first started he did pretty well but i don't know what happend all the sudden he got very unstable he walks into walls,doors etc.. i always have to explain to people that i dont beat my son, this gets so frusterating!!!!!
take care all

 
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