Cerebral Palsy

Katherine - posted on 04/27/2009 ( 40 moms have responded )

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Does anyone else here have a child with Cerebral Palsy? If so I sure would like to talk to anyone with some insight.

Thank You
Kathy

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Natalie - posted on 05/11/2010

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hi my son is 3 and he has a rare form of cerebal palsy called worster drought syndrome he can sit up unaided but doesnt attempt to speak he had an ng tube but now has a button in his tummy to feed him ....he was diagnosed on fri 13th .... just over two weeks old ...if want to talk feel free ...

natalie

Dyann - posted on 05/15/2009

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Yes, I have two older stepchildren, which are my son's half siblings, and I have a younger son (22). Ryan really loves his older brother, but he lives almost 3 hrs. away and has a family of his own. Our youngest son is afraid he will be responsible for Ryan if something happens to me and his dad. I attribute part of that to his age and the fact he doesn't know what he wants to do with his own life right now. Ryan moved into his own apt. when he was 21. Wheelchair-adapted apts are not easy to find, but they are out there. I finally found one that had a roll-in shower, which was a necessity, and it also has the wider doors. Has your son had many ortho surgeries? Ryan had a baclofen pump implanted when he was 14 and back surgery to correct severe scoliosis when he was 17. I don't know what kind of supports you have where you live, but the agency that provides Ryan's staff, case management, etc. always attended IEP mtgs, helped with volunteer opportunities for Ryan and general support for the family. Hopefully, you have someone that can advise you to what programs/opportunities there are for you and your son. Let me know if you have any questions. (I didn't mean to write a book!) With such a loving family, your son's future can be very bright!

Dyann

Dyann - posted on 05/11/2009

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My son is 24 years old with quad. spastic cerebral palsy. He was diagnosed at 7 months. He was a 32 week preemie. He had pt, ot, speech therapy until he was 21. He uses a Dynavox communication device, which has environmental control capabilities. Ryan graduated from high school and tried community college. Lives in his own apt. with 24/7 staffing which is provided by a local, non-profit org. which provides supports for children, families, adults with disabilities. If you have any questions, just ask. We've probably been through it!

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Natalie - posted on 03/04/2011

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hey there,

i have a 3 year old son with a rare form of cp...it called worster drought syndrome .....if any one else has a child with the same condition please feel free to get in touch

love nat

Tiffany - posted on 05/11/2010

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HI MY SON IS 6YRS OLD AND HAS CP HE WAS DIAGNOSED AT ABOUT A YEAR OLD BUT HAD BEEN GETTING THERAPY SINCE HE WAS 6MTHS SINCE THEY THOUGHT THAT'S WHAT HE HAD IN THE 1ST PLACE HE CAN'T WALK OR TALK JUST YET BUT HE DOES HAVE A WALKER AND WHEELCHAIR, HE GOES TO SCHOOL AND IS VERY SMART EVEN THOUGH HE'S NON-VERBAL....FEEL FREE TO ASK ME ANYTHING ANYTIME OR IF YOU JUST NEED TO TALK I'M HERE

Samantha - posted on 05/11/2010

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yes my daughter she is almost 3 has cebreal palsey too i need some one to talk to as i have little freinds

Berneice - posted on 05/10/2010

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Hi Kathy,

I have a 5 yr old son with Spastic Quad. CP. He is a very vibrant and adorable little boy. He loves to laugh, singing and music, and lots of attention!! You can contact me anytime!!

Tricia - posted on 05/09/2010

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I also have a 5 yr old with CP. He has hypo-tonic CP which means he has low muscle tone. I am still learning all about it myself.

Sarah - posted on 05/09/2010

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i have a son who will be 3 in july. he has cp. we noticed something "off" at about 4 or 4 months. hang in there!! things might get bumpy! just love your kid and know they are perfect just the way they are. i am here if anyone wants to talk... i'd love some company!

Katebradfield - posted on 05/06/2010

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Hi my name is Kate and I have a 3year old son, Tagen, with cerebral palsy. He was born at 31 weeks and stayed in the NICU for 3 weeks. I noticed early on that it took him much longer to do things than a "typically developing child". I don't know about you guys, but I hate the word "normal"!! He has been doing PT, OT, and Speech since he was about 1, but was not officaly diagnosed with cp until about a month ago. I knew in my heart that he had cp, but with a normal MRI I was hopeful that maybe it was just developmenal delays and he would catch up. Tagen has ataxic cp. He is walking but he has terrible balance and falls a lot. He does not talk, but I am hopeful that now that he is walking the language will start to come. He has come so far and I am very proud of him. He also has some sensory issues. He starts pre-school in August and I am very nervous because he is an only child and not use to be away from me for very long. His sensory stuff makes him bite a lot and he likes to pull his hair out and pull it through his lips. I am desperate to chat with some moms that can relate with me. You just can't understand until you have a child with cp. I would love to hear from some of you about your children and what your lives are like.

Julia - posted on 06/20/2009

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Hi Katherine! My daughter is 4 yrs and was diagnosed with CP at birth. Ask me anything!

Karie - posted on 06/09/2009

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My daughter has spastic CP, she just turned 8 years old:) She can walk with support from a walker. She is kind of stuck right now, not really progressing, but not regressing. She will be having surgery next month to help her out a little. Other than that she is a wonderful little girl! She is VERY smart too!

Maria - posted on 06/08/2009

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HI THERE! my son is 5 years old and he also has CP....he has many other issues to but he is just such a CUTIE!!! he uses a KID WALK walker which is AMAZING!!! )

Mary - posted on 06/07/2009

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Hi I am new to this group. My daughter is 4 years old and has a form of CP called spastic diplegia. We have been diagnosed with CP since she was 16 mos old and have had a wonderful support program in our state. We are now in the Shriner's Program.

User - posted on 06/03/2009

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My daughter Esther has CP, she and her twin sister Abigail will be 3 next month. Esther hasn't really reached any milestones (yet?!). Her smile is the most beautiful thing in the world though and when she throws her head back and laughs it is music to my ears. My heart just melts thinking about it! I can't say that I have insights, but I would love to share my experiences with you and to hear yours. I don't really know anyone else to talk with who understands. I was going to playgroups but all the other children had very minimal disabilities. I found another with some children at a similar level, but since having Jeremy (10weeks old) it is all a bit too hard to get there!

Donna - posted on 06/02/2009

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Hi Kathy, I have a 5 1/2 year old with Spastic Dyplesia. CP that affects both her legs. We live in Ontario, Canada. She is having major surgery at Sick Kids hospital in Toronto one week today. Because she is so crouched ... she is causing major problems with her legs growing wrong. They are going to cut and stretch her muscles. It is terrifying! We have been through Botox, Serial Casting, Major Physical Therapy and Occupational Therapy. I would love to help you on your journey if I can. Just ask! Donna

Amie - posted on 05/21/2009

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Hello my name is Amie and I have a daughter that is 7 years old and has Cerebral Palsy,I am from Indiana and would love talking to a mother with much in common.

Audrey - posted on 05/20/2009

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My daughter Dana was diagnosed with CP at the age of 5, she passed away Feb 26, 2009, with alot of other health issues. She was on oxygen, g-tube fed, as well as multiply surgeries and a seizure disorder. she was 18 yrs of age, with the mentality of a 6 month old child, but always a joy to be around, we learned to treat everyday like christmas or her birthday, We learned early in life what patience really is. enjoy life to the fullest,

Kerry - posted on 05/18/2009

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hiya claire yes lilly does go to a main stream school and i do get help with physios and ots and disabilites team . she has had botox injections 6 lots but last lot of injections didnt work so now r going to try surgery and is popular aswell look forward to hear from u love kerry

Cathy - posted on 05/18/2009

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hi i am mother of twin boys both had cerebral palsy sadly graham died 9 years ago craig is now 24 and in a wheelchair he misses his brother so much xx

Claire - posted on 05/18/2009

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Hi Kerry Sam has quadraplegic cerebal palsy, he does speak but the same as Lilly cant walk. He was unable to sit unaided until he was about 10 years old, he can now but for minutes at a time. He too is really bright and is at main stream school and seems to be a very popular kid. does Lilly attend school? Do you get much support?

Keep in touch

Love Claire x :)

Kerry - posted on 05/18/2009

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hiya im kerry my daughter lilly has diplegia cerebal palsy she doesnt walk but cant talk and is very intelligent she is 5 years old how about u love kerry xxx

Dyann - posted on 05/15/2009

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Hi, Claire! Ryan was seen by a neurologist at Arkansas Children's Hospital and was tested with oral baclofen first to see if it would help any at all and if he could tolerate it. Then he went back down to ACH for an intrathecal injection. They had PT's and cameras to evaluate his movements, before, during and after the test. It was decided that it did provide him with some relief from the spasticity, so during that summer, he had the pump implanted. I think if he perhaps had the pump put in at an earlier age, or if his spasticity was less, we would see more of a difference. However, he does indicate that his legs feel better. He has had the pump replaced twice, most recently this past December. (The batteries in them get weak after a few years.) They are continuing to make better and smaller pumps. He has it refilled about every 2 1/2 months.

We had Ryan's bathroom modified about 2 years before he moved out. Medicaid Waiver paid for it. They will pay for modifications, but not if it increases the footprint of your home. In other words, they won't pay to make your home bigger! Always a catch!

Keep in touch and I'll be happy to weigh in with our experiences.

Dyann

Claire - posted on 05/15/2009

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Hi Dyann

Thank you for your reply. My son Sam has had four ortho surgeries, last one was Jan this year. He is doing really well and will be re fitted for AFO's a week today.I was interested in the baclofen pump you mentioned. Sam takes baclofen but oral, I had emormous troulble explaining after his last op that Sam really needed this medication as it is fabulous in controlling his spasms, they said it was a medicine they rarley heard of?!! If (hopefully when) Sam leaves home he too will need a wheelchair accessible and a roll in shower. We waited for a disabled extention to be added to our house for 10 years, it was compleated last october ...thankfully! but it has made our lifes so much easier.

As for help in my area, there is some but usually unhelpful if you find them or ruled by money!

Thanks again

Claire

Dyann - posted on 05/15/2009

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Quoting Claire:



Quoting Dyann:

My son is 24 years old with quad. spastic cerebral palsy. He was diagnosed at 7 months. He was a 32 week preemie. He had pt, ot, speech therapy until he was 21. He uses a Dynavox communication device, which has environmental control capabilities. Ryan graduated from high school and tried community college. Lives in his own apt. with 24/7 staffing which is provided by a local, non-profit org. which provides supports for children, families, adults with disabilities. If you have any questions, just ask. We've probably been through it!






Dyann






It was so nice to read your post , my son is now 13years old with spastic quad CP, he is bright as a button and is attending mainstream high school. I have always wondered if he will be able to leave home at  a later date, Thank you for giving me a little hope.






I wondered if you have other children? I have to others and my eldest son is now finding the thought of his brothers future worrying such as lonliness etc. Have you had to deal with this?






Claire x





 

Claire - posted on 05/15/2009

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Quoting Dyann:

My son is 24 years old with quad. spastic cerebral palsy. He was diagnosed at 7 months. He was a 32 week preemie. He had pt, ot, speech therapy until he was 21. He uses a Dynavox communication device, which has environmental control capabilities. Ryan graduated from high school and tried community college. Lives in his own apt. with 24/7 staffing which is provided by a local, non-profit org. which provides supports for children, families, adults with disabilities. If you have any questions, just ask. We've probably been through it!



Dyann



It was so nice to read your post , my son is now 13years old with spastic quad CP, he is bright as a button and is attending mainstream high school. I have always wondered if he will be able to leave home at  a later date, Thank you for giving me a little hope.



I wondered if you have other children? I have to others and my eldest son is now finding the thought of his brothers future worrying such as lonliness etc. Have you had to deal with this?



Claire x

Claire - posted on 05/15/2009

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Hi I have a 13 year old son who has cerebral palsy which is thought to have been caused by chicken pox when he was 10 days old. He was not diagnosed until he was 9 months old, but i I knew something was not quite right. He has been through many orthopedic surgerys and attends main stream education and is bright as a button. He is my middle child and an absoloute joy to be with. I could not imagine my life without him :)

Tiffany - posted on 05/14/2009

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i had a quick question i have a 4 month old daughter who wont seem to use her left arm and shes not interestng in rolling or anything shes suppose to be doing. she goes for an mri in a couple wks i was wondering if anyone else had a child who started out this way and if so whats to come down the future. the physical therapist thinks it may be a slight form of cerebral palsy but i have no idea...

Chrissy - posted on 05/14/2009

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Hi, i have a girl whos 3 in june with cp affecting both legs and left arm. Were still not sitting or walking. Waiting to find out if her brother whos 1 has it as he is delayed and crawls like my daughter (commando).

Brooke - posted on 05/06/2009

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hi kathy, i have a 3yr old with cp he also has epilepsy, long qt syndrome, and a slight brain bleed in the left side. he is non-verbral and not toiletted. he walks assisted by AFO's and a walker, he wears a soft helmet, and is seen by a developmental dr. andphysio, occupational,and speech therapists. feel free to ask any questions

Hannelore - posted on 05/02/2009

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Hi Katherine
I too have a daughter with C.p in all four limbs. I created a group for parents called " Mothers and Fathers of Severely disabled children" as i needed friends that knew what i was going through, as i am alone in a small town in south africa, and had no help. did not even know what the word cerebral palsy meant. So please feel free to come and visit and you will meet lots of friends.

Lisa - posted on 04/29/2009

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HI Kathy! I have a 3yo son who has CP. He is in preschool and loves it! He loves animals, loves to laugh, swimming is his favorite thing! I would love to chat, I am still trying to figure it all out myself.

Latasha - posted on 04/29/2009

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I have a 7yr old daughter who born with CP. I finally after 6yrs am able to receive CAP services for my child. Feel free to chat with me.

Marilu - posted on 04/29/2009

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i have a 10 yr old boy who was born with cp. he's starting to talk and we are trying to hhave him start walking at school. he attends a special day class. if you have any questions feel free to ask me

Alissia - posted on 04/28/2009

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i have a 5 yr old boy with cp i have been dealing with this since he was 3 mths old he has botox injections every 6 mths at randwick childrens hospital sydney its very hard on my other children because they cant do all the things they want to do because of all the hospital app my husband works long hours so i do most of the day to day things for my son if any one would like to have a chat feel free

Andrea - posted on 04/28/2009

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Hi Kathy, My daughter Rowan Elizabeth just turned 1yr old & has CP. She gets Physical Therapy 2X a week here @home & Occupational Therapy 1X a week. She goes to a CP Clinic every 3-6 months & sees a CP Dr. Feel free to contact me w/any questions or comments! :)

Christene - posted on 04/28/2009

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Hi Kathy, I have an 8 YO with cerebral palsy. Please feel free to ask me anything!

Julie - posted on 04/28/2009

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Hi Kathy,yes i do my son is almost 2 he is almost walking he goes to a cerebral palsy centre witch helps. How about you?

Julie.

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