toddler with c.p anyone to chat to!

Shannon - posted on 04/27/2010 ( 27 moms have responded )

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I have a toddler with c.p and i was just wanting to talk to mums who have a child the same,I have been told Kodie isnt severe which im happy about although he is 21 months not sitting up he can get around on his back if he wants to but not that often,and can say a few words like dad,and golly and babble a bit he does have some vision probs but we are still at the stage of meeting therapists it seems to take so long to get started is there anyone thats wants to chat who is in the same situation that would be great.

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Chalee - posted on 10/11/2011

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My daughter has cp and her doctor wants to botox her and i want to get some feedback from moms that have done that with there kids. If you could please tell me if you did or didn't if it helped or made it worst that would help me out alot. Thanks!

Brandy - posted on 01/04/2011

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I have a 2 1/2 year old with CP...He can do what we call and army crawl. And he wears legs braces to help him keep his legs straight. He does sit up on his own for up to maybe a min but them he falls backwards. He can not say anything really. He just babbles... I would love to chat with you sometime. It sounds like our kids are a lot alike...

JessieRaye - posted on 12/01/2010

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My son has been receiving Botox injections for about 3 years. It is amazing on how quick it works for him. His left side is were he receives the shot. He used to get it in his neck (torticollis). I have always been inpressed on how well it works for him.

JessieRaye - posted on 12/01/2010

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I have been in the same situation as you. My 1 lb 15 oz mircle is now 4years old. He was diagnoised when he was a little under 1yrs. He is a high functioning CP kid. He didnt walk until he was a litte over 2 years old. His therapies have continues but have slowed down. They want me to continue stretching him at home. If you have any questions I will be more than happy to chat with you.

User - posted on 12/01/2010

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Hello,
My so is now eight. He has mild CP and he has made a great deal of progress. He did not sit up until he was almost two, walk until three, babble until three, or eat more than baby food. Therapy has really elped him a lot. He started off with the Regional Center. It is a long process but I think that has to do with funding and the need.

Shannon - posted on 06/04/2010

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I would just like to thank everyone for your own stories it gives me hope and lets me understand that we can get somewhere with our little ones,that they are not forgotten Kodie is still continuing his progress and he will be having Botox when he is 2 apparently physio is much better for them,his eyes apparently are not caused from c.p its just a lazy eye and he can see quite well,physio has showed me a different way of sitting Kodie with his legs crossed instead of seperated and the other day for the first time he sat for 150 seconds unsupported i was so happy we are also trying to stop him from wanting to push back so the corner chair is good or i will support him,he is also taking very good steps (supported)but still scissors abit unless his hamstrings have been fully stretched but he is still crawling around on his back and certainly gets where he wants also he is becoming very loud he cant talk but lets me know exactly what he wants he is the love of my life and im sure im not alone in this feeling for our children.

JessieRaye - posted on 05/27/2010

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my son was born at 26 weeks 1lb 15 oz. his motto is slow and steady progress. He didnt walk until he was 2 yr 2 month. (approx) He has had many services. continue to love and advocate for him. If the doctors use there big words have them slow down and explain it better to you. He turned 4 in feb. He has been getting botox injections since he was one. His left side is effected eye,arm,trunk and legs. He has a ton of support and continues to make slow and steady progress. I am happy that he continues to thrive. He has a infectious smile and a great personality.Get your kids into early intervention. any help will benefit you and your child. Enjoy your child and have fun. everyday is a learning experience.

Linn - posted on 05/25/2010

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My daughter Annabelle was diagnosed with hypotonic/mixed Right hemiplegic CP at 1 year of age. She is now almost 3 and is starting to walk with assistance. She is able to say a few words. She is a preemie (34 weeker). She has been in therpay since she was 3 months old. She has come so far and I couldn't be more proud of her!

Jane - posted on 05/25/2010

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My boy is in my profile pic. He has CP, it's pretty severe, spastic quadriplegic, but since he worships Steven Hawking, he doesn't mind the wheelchair or the computer to speak. :) Chat anytime, hun. xx

Jessica - posted on 05/24/2010

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Hi Shannon, my name is Jessica and I have a almost 4 year old with CP with right hemiplegia. She also has microcephaly and alot of different diagnosis. Unlike most of cp cases my daughters wasn't from birth. When she was 10wks old her babysitter shook her. She lost 63% of her brain, most of it her left hemisphere. At the beginning they told me she would never live off machines, and she did. They told me she would never move her limbs, with therapy she did, they said she would never walk sit up yada yada yada. Well she is now running, jumping, climbing, talking. Yes she has delays, her right hand does not work as well as her left but she compensates. I always prepared myself for the worse case that way I was happily surprised when it wasn't that way. This was a long time in the making. We were very lucky to get very early intervention starting when she was only a 4 months old. She is still in therapy and she has made huge progress. There is hope, I have witnessed it. It has not been easy and still isn't. I also had to mourn the circumstances and still have my moments. But hang in there! Any time you want to chat I am here!

Mary - posted on 05/21/2010

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hi april just wanted to let you know a little about the botox injections my son who is 4 got his first treatment in feb of this year he has spastic triplegia cp which effects his right side and his left leg, he got the injection in his right calf and it worked very well its used to loosen the muscles which have tightened to cause the lack of movement, now they dont work for every child due to them all being different but i would say dont rule it out give a go at least once it can only help or not at all it wont make it worse, i would be happy to talk at any time on the posts ror by private messages

mary

Mary - posted on 05/21/2010

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hi just thought id let you know, i was always confused when you all mentioned terms like spastic, dystonic and other forms of cp because i was always just told cp with a right hemiplegia but after my son had his mri and i was told it was also slightly in his left leg not just his right side i wasnt too sure what that meant because id never heard of it in 3 limbs before, but he had an appointment in school the other day and was told that this was true so i looked it up and found out it is called spastic triplegia cp which might not mean much but it is a relief to me if you know what i mean i hope you do

Shannon - posted on 05/15/2010

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Hi everyone,Kodie has been to a few appts in the last cuple of weeks,and im sure you all know how tiring it can be listening to the docs speak in there own language,Kodie is doing great!! he is still cruising on his back but now he is rolling over on to his tummy sometimes he gets a bit stuck from the spasticity in his hamstrings somedays he will pull his legs up and crawl a bit otherdays not very comfortable for him they have decided to give him botox for this in 3 months,with his arms his left seems great and can do alot feed and play he can with his right if we sort of cover the left like with a glove or mitten he tends to want to use the right great therapy i think his eyes are getting really good and he is becoming really verbal too and he is 2 in august

Tiffany - posted on 05/11/2010

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HI Y NAME IS TIFFANY AND I 2 HAVE A SON WITH CP HE IS NOW 6YRS OLD AND WAS BORN WITH CP. HE IS NON-VERBAL AND CAN'T WALK BUT IS VERY SMART AND A JOY 2 B AROUND. HE LETS YOU KNOW THE THINGS HE WANTS AND BY POINTING AND DOING LITTLE GESTURES, HE CRAWLS TOGET WHERE HE NEEDS TO GO HE EVEN GOES UP AND DOWN THE STAIRS WHEN HEALTH PERMITS IT. IT TOOK A LONG TIME 2 GET WHERE HE IS 2DAY AND HE STILL HAS A LONG WAY 2 GO BUT AS LONG AS WE KEEP PUSHING AND HAVIG FAITH IN OUR CHILDREN THEY'LL GO A LONG WAY. PLEASE FEEL FREE TO TALK 2 ME ANYTIME, THANKS

April - posted on 05/10/2010

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Shannon and Sarah,

I'm excited that I can talk to other moms with the same diagnosis and since your kids are older it really gives me hope, odd sounding but true. My sons neurologist said it was highly unlikely that he would ever walk or communicate with me via mouth. She also told me he has a chance in loosing his vision. But since going to the pt weekly and really concentrating on HIM I've seen a noticable change in his attitude. Yes he's only 9mo but now he's smiling and cooing and just more aware.

I think like others that the doctors give us the worse case scenerios to keep us from saying the "you said" game.

Please keep posting any changes you have in your childs life. I would love to hear more and know what steps you are taking. My sons pt doctor has suggested the Baclofen pump when he turns 2. IDK enough about this but if you know could you give the inside scoop? Also it's been sugg. about botox injections.

Thank you for everything!! Seriously, if you'd like to ever talk please feel free to email me. Thank you again, april.

Sarah - posted on 05/09/2010

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hi. my son, keagan, was diagnosed with something called holoprosencephaly. but i think it's wrong. his therapists say he has spastic quadrapeligia cp. he will be 3 in july and is just now able to crawl on his hands and knees. he walks in a gait trainer but not well. he is getting stronger every day! his vocabulary is good. he doesn't say some words right but i know what he says. :) the hardest part with dealing with him is his anger. he bites (himself and others), hits, punches, kicks... you get the idea. i hate to see him hurt himself and don't like being hurt either. he starts preschool in sept and a behavioral therapist should be coming to see him. i really am glad to know i am not alone. reading all of your stories helps. i am here if anyone needs to talk. :)

Nadine - posted on 05/05/2010

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Hi! My son has CP but its not evident anymore. We did physiotherapy on a daily basis from the age of 7 month! I would notice how we cant cross over his arms and it was hard watching the physio holding down his other arm and pushing him to cross over his arm to catch a toy. He was late in sitting and walking but we pushed him hard. I also worked hard on his diet read a lot about food that can boost nerves and avoided sugar, white flour etc... his vision was affected but it cleared up he is now 6 years old

Heather - posted on 05/04/2010

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Hi Shannon! I am the mom of a 5 1/2 yr old boy with cp. He was over 2 by the time he could sit by himself more than momentarily, rolled to get around, & when he could finally sit he would scoot on his tush. With a lot of therapy he could finally walk by 3 1/2, but we use a wheelchair for any distance or if we go shopping or to any place with crowds where he could get pushed bc his balance isn't great. He can't speak yet, but he has a few rudimentary signs & is getting a communication device at school. The hardest part is seeing much younger children surpass him developmentally, because he is starting to become aware that he is "different" and gets frustrated & upset, which hurts me! Anyway, it's been a long road, & every little bit of progress is celebrated. After 2 typical children, it's amazing how much the smallest milestone now means!

Brianna - posted on 05/03/2010

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hi shannon,
My name is Brianna, and I have a 3 1/2 yr old little girl (Alexa), and she has spastic/ dystonic quadreplegic CP caused from a birth injury. She was full term but was with out oxygen for too long during delivery that she got moderate white matter loss in her brain. That's the area that control every motor function- gross, fine, and speech. She is not yet walking, but she is starting to stand in place and can walk with her posterior walker and her foot braces. My little girl didn't sit till 1 yr old and still cant sit straight. She didn't start crawling till a little over 1 yr old and that is her way of moving about still. I am here to talk, if you need me. I totally understand all the hardships of having a child with CP. Our kids are awesome i know, but i also know how painful it is to see them struggle to accomplish all the "normal" milestones. So if you want to chat I'm here.

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Hi! My name is Charlotte, and my son has CP, birth injury. Long story there. He is severely disabled, we've been told global damage. We were also told he would live maybe 2 months. He was sent home with hospice care and we were told to make him as comfortable as possible for the time he was with us. We did that, and still are. My son will turn 6 this June. He can't sit, can't speak, can't swallow, will never walk or even crawl, and will never talk or tell me he loves me. But, in the last 5 years, I have learned so much about patience, tolerance, and the importance or celebrating the little milestones in life. The first time he smiled. The first time he turned his head toward me. His first day of school. Most of those firsts came in this last year. I don't want to start in on a sympathy kick, I don't want it, and I'm not sure that many moms of special needs kids do. I just wanted to pop in and say Hi, introduce myself, and get to know other moms of kids with problems that take a lot more than just a kiss and a hug. (They need that too, just sometimes a little more!).

Shannon - posted on 05/02/2010

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Thanks everyone for your own stories,Kodie has been diagnosed with spastic quadriplegia aswell i found the news really hard to take at first but as he is getting older and the time i am putting in i can see how hard he is trying aswell,as you all would know any milestone met is better late than never, my pregnancy with kodie was so unbearable i still dont know how i got through it i knew it was different as i have 2 other sons but anyway after having kodie about 5 weeks after he began throwing up his bottles and this went on for about 5 days apparently it was ok as long as he was getting a certain amount of fluids to cut a long story short kodie was acidic i ended up taking him to pmh and he was diagnosed with renal tubular metabolic acidosis his blood was acidic basically and while in hospital for this it all started probs with his eyes and then the spasticity he would tend to just want to look to the right thats what got our attention something was wrong and all the tests started,now he is 21 months and he isnt medicated and really wanting to get going he is starting to push himself up and he quite likes tummy time now he is wanting to feed himself and he is getting around on his back quite nice sometimes the spasticity is bad but other days its good i think some doctors diagnose on a high level of c.p with babies so when they do start there spurts the levels come down kodie started at level V1 now he is level1V i have all the patience in the world and im determined to help my son get to where he needs to be.

AWILDA - posted on 05/01/2010

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my daughter has CP she 91/2 yrs old now, but at 2yrs old she couldnt do much either, she couldnt sit or speak, she just made loud shreaks, she was and is always happy, shes been in special school since she turned 2 and shes done alot of progress, she says like 4 or 5 words, she still dont sit on her own, but if i sit her up against something shes stays sitting for a while, i have to watch her of course make sure she dont fall over, she has poor balance, but shes active now and very alert she can walk with assistance. my problem with her is that she dont sleep well at night, she still wakes up every 3 hrs like a neborn. but shes wonderful and i love her with all my heart and soul

April - posted on 05/01/2010

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Hi Shannon,

My name is April (funny my sister's name is Shannon) I have 9 mo old twins who were born at 28 weeks, Ethan and Elijah. Ethan has recently been diagnosed with spastic quadrapeligia cp. From what the doctors are telling me it is one of the severest forms. Finally after months of waiting my son is on the right medicine. Ethan is a joy. By looking at him you would never be able to tell that anything is wrong with him. I'm new to everything and would love to listen and share stories with you. Good luck to you and your child. Be strong!

Mary - posted on 04/30/2010

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hi shannon my names mary, the youngest of my 3 sons who was 4 in march has cp with a right hemiplegia which im not sure if you know yet but it means it affects the right side of his body, all parents are different and some just want to see their children walking but im not one of them, because although my sons cp isnt extremely severe either he still cannot walk or crawl he moves arount on his bottom and has just started standing at the furniture and he too took a lot longer than other children to sit on his own but i was told that if we pushed for him to walk soon it could complicate his condition thankfully it is all only physical with nathan but he is in his second year at nursery and will continue on to p1 in his special needs school and i can tell you going there has been amazing for him, it will all just take time and patients on everyones part even your sons, would be happy to chat so just get back to me anytime you like and welcome to the community :)

Betty - posted on 04/30/2010

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Hello. My son Billy is 4. He has CP as well. Although physical, he is pretty severe, but mentally he is fairly mild case. I am willing to talk to anyone. I understand all too well how it feels like it takes soooo long to get anywhere, and get the help and support your child needs!!! :)

Mason - posted on 04/29/2010

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Hi Shannon,
I have my Amanda now 18 almost 19. She was born at the 23 week of pregnancy. I have been raising her alone since she was 4 years old. she is blind, she has CP on left side, she is Severly MR and has Orthopedic problems due to the CP. With Amanda I had to teach her by hand over hand, she learned how to talk by me talking with her hands on in my mouth, She was about 2ish before she sat up> and that was just by me sitting her up with my hand on her back for support which seemed like forever before she learned she could do it on her own. It just takes alot of time before the figure out that they can do something.

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