When will my daughter with Mild Spastic Diplegia walk?

Abi - posted on 01/23/2009 ( 68 moms have responded )

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My preemie, born at 28 weeks, 1 lb. 12 oz., 13" long was diagnosed with Mild CP (Spastic Diplegia) when she was 15 months old. She is now 2 1/2 and has yet to walk. She has physical therapy twice a week and the therapist thought she would be walking on her own by now. We are going to try AFOs per the neurologist's suggestion. We always see progress....but it's so slow....and I'm not a very patient person. My back is killing me from carrying her. I try to make her walk (she pushes a wooden, weighted baby stroller as her 'walker') as much as I can, but that's not always convenient.
Has anyone else gone through Mild CP with their child? I feel so blessed, because she has overcome so many other medical problems and almost guilty asking for support.

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Hi, My son is 3 and was a 28 weeker and born completely healthy at 2 lbs 4 oz. and 14 inches. He got the RSV virus in the NICU at less than 3 lbs. and was very sick and suffered 2 strokes. He has PVL and Spastic Diplegia CP. He is a "mild" case but every milestone takes longer than "normal". He is walking with canes right now and gets speech, O.T., and physical therapy every week. We also got him involved with HIPPO therapy- on a horse with a physical therapist and he loves it! Swimming is a great way to work him out as well. We are looking for any info on the SDR- selective dorsal rhizotomy surgery... has anyone done it for their child? We have a meeting with the neurosurgeon, neurologist, orthopedic surgeon and other specialists next month to decide between that and the baclofen pump surgery and other possibilities for our next step. He has been getting botox injections in his legs for the past 2 years and it is no longer working so we are now entering the next phase of things for him. Any info would help if your child has had the SDR-spinal surgery or the spinal pump baclofen. Our son is not in any pain and his speech is catching up fast now and he understands everything and is very smart. He has a lot of spasticity only in his legs. Thanks so much.

Delene - posted on 09/30/2012

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Hi, my name is Michel and i am a 6year old cp diplegic girl. I am one of a twin and my brother, Rubin is strong and healthy. I was unable to walk when I turned 3 but in Sept 2009 I had orthopeadic surgery done on both legs by dr Denise Potgieter at the Little Company of Mary in Pretoria (012 346 6650) and another three operations followed. I walk well on my own and is currently in rehad after little support blocks were inserted in both ankles. Please dont ever give up and remember we are special little people with special families.



Greetings

Michel Coertze

(coertzedelene@gmail.com)

Autumn - posted on 01/24/2010

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I know exactly how you feel! My son was born at 30 weeks and at 10 months old was diagnosed with spastic diplegia in a mild form as well. he's turning 3 next month and he's still not walking but he crawls everywhere, his doctor had said that he would be walking at the age of 4 or 5 with either a walker or something else that would help him stay balances. I know exactly what you mean by slow progress, my husband and I are getting tired of seeing our son crawl everywhere when he's almost 3 years old, it almost feels degrading that he still has to crawl everywhere when his brother whos a year and a half runs and walks everywhere.
What I started doing with my son because he's now to big for me to carry I help him stand up and hold his hands and we walk everywhere that we need to go except in stores and that kind of stuff, and that has helped out my back a bit except for the bending over part.

Markeyuna - posted on 09/14/2012

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Hello everyone , My daughter is now 3 years old and still hasn't started walking yet. she was born very early 4 months early she was a 24 1/2 weeker. she wighed 1 lb 7ounces 11 1/2 inches. she was diagnosed with hydrocepalus so she had to get surgery to get a shunt placed in her brain so the bleeding can drain; she has mild cp as well. she get physical therapy, occupational therapy, as well as speech therapy. she have came along way though i can say that she really fought to be here. she has made a lot of progress because when she was born the doctors said that she wouldn't be able to do half of the things she is doing now. she was in the hospital for 8 1/2 half months after she was born when she was finally able to come home she had to come home on oxygen, due to her chronic lung disease the doctors told me that she may be on oxygen all her life, due to her lungs being so damaged, but my daughter is a fighter at 2 years of age she went for a sleep study and we got great news that she no longer needed oxygen because she was able to breathe on her own. its been a challenge i just make sure that i give her the love care and support she needs. She still does not sit independently on her own yet and she has very low tone in her trunk, its geting better but she still needs support in that area. she hasn't started crawling yet, but when in therapy, and at home, she has started to take steps while standing her up and supporting her at her trunk. She also have AFO's as well as other equipment in the home such as, a stander to help her bare weight on her feet, and an activity chair. she is in preschool now and she does not have a wheel chair, or anything yet but the teacher said that i should consider getting her a wheel chair since she she still can not walk on her own yet. I thank everyone for being brave enough to share your stories with other parents who are experiencing the same things i know that i will not give up, and i know that i can't rush it, it just may and will take time for her to walk, but i do have hope for my daughter and i really hope she is able to walk because i see how she look at other kids around her like my niece and her cousins and seem them walking and i know that she wants to do the same.

Caroline - posted on 07/02/2012

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My daughter was born 9 weeks premmie and she had many challenges. She needed extra care and attention as it was looking like she would be wheel chair bound at age 2. She was not able to walk un-assisted, she needed support to sit up, druelled constantly, developmentally delayed, frquent body tremors, seizure like episodes, kind of in a daze all the time, clenched left hand etc tec. She was splinted for a leg brace which she disliked. Her life was restricted & so was mine ...and it looked this way for the rest of her life ... & mine. I felt hopeless.

We were attending all sorts of treatments and therapies which cost a lot. A friend told me about some special wellness supplements from a particular company, she started taking them in her yogurt, after one week she was up walking un-assisted, it made an immense difference to her brain function, memory, balance, mood & cognition in a short space of time. I was elated!

It’s now 14 years later and my daughter still enjoys these special products. She stopped wering the leg brace in primary school. She wrote her own resume a few weeks ago, got 2 x job interviews in one week and started her first casual job after school 2 weeks ago in a fast-paced food takeaway in our local shopping mall. She is now saving to go to Europe and buy her own home when she finishes college. She will begin her driving lessons in about 6 weeks. Her self-esteem is through the roof! I am so grateful to the person that told me about this incredible technology. She now has a life now ….. and so do I.
http://www.navig8.biz/LifeStyle2

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Manal - posted on 09/11/2013

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Hi, my daughter was born in the 26 week weighing only 750 gm, she was put in the incubator for 2 months, now she is 3 yrs, and was diagnosed a yr ago as a mild cp child, that affects mainly her hands and legs. Alia has started her Physiotherapy , when she was 8 month, and we thought this will only last for a sometime, now she is 3 and has been doing PT for 2 yrs and 2 month now. She didn't take any step yet , she is completely normal, with the exception of walking and she uses her hand well plus she walks well but uou have to hold her from the shoulder, i feel her waist is not stable and that whats causing the whole thing. Any clue when is she expected to walk, i m feeln sad, especially that she started going to nursery and you can understand the challenge.

Patricia - posted on 01/13/2013

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Therapeutic horse back-riding is a great tool for children and adults with cerebral palsy.
Therapeutic riding can facilitate cognitive and sensorimotor development in childhood help develop a sense of responsibility, self-confidence and fair play in adolescence and provide life-long recreation and sport. It can do all this while stimulating good posture, balance and flexibility needed for functional independence off the horse.
Talk to your daughter's pediatrician and see if their is one with certified therapists in your area. i have seen so many positive results with this form of therapy. And the children and the horses develop a bond that is incredible. Horses are chosen and trained for this form of therapy.
Good luck and God bless you and your family. Patricia :)

Stephanie - posted on 09/30/2012

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Hi Michel,



Where is Pretoria?? How old are you now??? Can you mom get in touch with me???





Thank you for your encouragement!!! God Bless you.

Marisa - posted on 09/29/2012

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My daughter is 2 1/2 and is having similiar problems, the orthopedic says it could be cp, or muscular dystrophy b/c she is have arm and trunk weakness too. Which sounds like a worse case than your child. try to get in touch with a local family helping families group or a cp organization.-marisadeleonreyes@yahoo.com

Markeyuna - posted on 09/27/2012

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Yes I strongly agree that her tone tends to increase when her emotions are elevated we were just talking about that in her physical therapy session yesterday.I am not familiar with NDT what type of therapy is it? Thanks for the information when she goes to therapy next week I will ask her PT therapist about that, as well as do my own little research about it this is my first time hearing of it. I am so glad that I joined circle of moms I learn something new everyday and I appreciate the helpful information, yes does walk on her toes.

Stephanie - posted on 09/27/2012

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HI Abi,



This sounds like my son. He just turned 3 and he walks in a "gait trainer". I believe their tone tends to increase when their emotions are elevated in any kind of way. Example, excitement, anger, fear, etc. I have my son with a PT that is specialized in NDT which is Nuero-Development Therapy/Treatment. Ask your daughter's PT about that specialized training and see if that can help her. Does she walk on her toes?

Simona - posted on 09/20/2012

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Hello Abi Aars, I myself delivered my twin sons at 27/28 weeks..1 day beforemy 28 weeks...Twin B (Dylan) weighed 2 lbs 9 oz was 14 in long was diagnosed with mild CP also around age 2. He was receiving PT twice a week. He tried the AFOs also which helped straighten his feet forward and with his balance. He is now 11 and still receives PT twice a week and will soon start getting botox injections once again. His balance is still improving...Dr says he is still too young for any kind of surgery since he is still growing..maybe when he's 14 they might consider surgery.

Have faith and keep patient..I know its hard to do at times just take it one day at a time..been there before...:)

Melissa - posted on 09/19/2012

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Hello. My son is 5 1/2 and in my mind he has mild cp. The doctors don't consider him mild because he does not walk. He has AFO's and uses a walker. Every child with cp is going to be different and I learned that you can't compare you child to another (I know my friends child walked at 2 and I know another that walked at 7). They do things at their own pace and no two children with cp are alike. I believe my child with walk but its slow going. Sometimes I get inpatient and talk to others who don't see him on a daily basis and they can't beilieve his progress. Having a child with cp is a lot of work for everyone. Once I feel things are good and he is progressing then things change. I hope you feell better that you can talk to other moms who know what you go through.

Caroline - posted on 07/03/2012

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My daughter was born 9 weeks premmie and she had many challenges. She needed extra care and attention as it was looking like she would be wheel chair bound at age 2. Her life was restricted & so was mine ...and it looked this way for the rest of her life ... & mine. I felt hopeless.



We were attending all sorts of treatments and therapies which cost a lot. A friend told me about some products from a particular company, she started taking them in her yogurt, it made an immense difference to her brain function, memory, balance, mood & cognition in a short space of time. I was elated!



It’s now 14 years later and my daughter still enjoys these special products. She wrote her own resume a few weeks ago, got 2 x job interviews in one week and started her first casual job after school 2 weeks ago in a fast-paced food takeaway in our local shopping mall. She is now saving to go to Europe and buy her own home when she finishes college. She will begin her driving lessons in about 6 weeks. Her self-esteem is through the roof! I am so grateful to the person that told me about this incredible technology. She now has a life now ….. and so do I.

http://www.navig8.biz/LifeStyle2

Fara - posted on 07/02/2012

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I have a son who is 13 and has spastic diplegia but has been ambulatory. I wanted to tell all you moms about a surgery that he had 3 months ago. It has been LIFE CHANGING FOR HIM!!! He has been getting botox for years and wore AFO"S etc.but he was getting to where he was just exhausted all the time. We heard about Dr. TS Park at St. Louis Children's Hospital and a surgery that he performs. At first it freaked me out but I did my research and joined their facebook page (Selective Dorsal Rhizotomy) and educated myself. Gunner doesn't have any spasticity left in his legs and is able to use an arm that he has never been able to use. There is no way that I can list all of the changes he has had over these last 3 months! He can jump, he can bend down and get things from under the bed, he can kick in the water, he can tie his shoes, put on a belt, button clothes- he couldn't do any of this 3 months ago. It is alot of recovery but we are just so excited about the possibilities for his life. There are tons of documents and videos on there and many people come from the UK to have this surgery. I live in Arkansas one state away and didn't know it existed. I hope by putting this on here someone may have the wonderful results that we have!

Amanda - posted on 06/25/2012

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My son was born one day shy of 30 weeks. Weighing 2lbs 15oz. I didn't find out he had cp until he was 14 months old. I do PT, speech and OT. He has also done Botox which helps for a while, but then tight again. We also do horse therapy which helps so much. He overheard a year ago that he would never walk without surgery. Within 2 weeks he took off walking. He does walk on his toes and does fall a lot sometimes. He will be 5 in July. There are great walkers out there for children. I would see if your insurance will cover one. If you have any questions you can email me at aexline0407@live.com

Amanda - posted on 06/25/2012

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My son was born one day shy of 30 weeks. Weighing 2lbs 15oz. I didn't find out he had cp until he was 14 months old. I do PT, speech and OT. He has also done Botox which helps for a while, but then tight again. We also do horse therapy which helps so much. He overheard a year ago that he would never walk without surgery. Within 2 weeks he took off walking. He does walk on his toes and does fall a lot sometimes. He will be 5 in July. There are great walkers out there for children. I would see if your insurance will cover one. If you have any questions you can email me at aexline0407@live.com

Natalie - posted on 01/03/2012

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My daughter was diagnosed with Mild CP as well, and she didn't start walking until she was a little bit over 2. I believe every child does things at their own pace. In the event that she isn't walking by the time she's three, doctors are more than likely going to give you a special wheelchair to help get her around. Don't feel guilty......even parents with a child who's perfectly healthy a still needs assistance. Never feel ashamed for asking questions. It's really a sign of strength. This is a good page to learn different stories of other parents of CP children.

Amanda - posted on 11/25/2011

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I love reading all these stories about your kids walking. They think my son has mild cp. We are seeing a neuro in a couple weeks. I've been so sad for him that he may not walk but I have faith!

Eileen - posted on 09/19/2011

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my son lucas who is 8-1/2 years old now with CP started walking with Intensive Suit Therapy. He goes for therapy twice a year now at therapies4kids and loves it. he wears a brace on both his right arm and foot and wears glasses. he was born 27 weeks premature

Laura - posted on 04/26/2011

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My daughter has Hydrocephalus which caused her to have CP. She got AFO's at 2 years of age. Then a walker when she turned 3. She started walking when she was 3 1/2. I would have to say each child is so unique.

Melissa - posted on 02/25/2010

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My son too has mild cp and is spastic in his legs and low tone in his trunk. He will be three soon and has a walker to get around. I too have to carry him every and it I tuff. The one thing I do that helps is to stay fit and to pick him up correctly. I am excited to hear that your angel to some steps. I struggle with trying to be patient. I go and forums like this to meet people like you that understand what I am going though. so hang in there and keep us updated on her progress.

Melissa - posted on 02/22/2010

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just wanted to say congrats to Anya for taking steps that is so awesome.....:)

Melissa - posted on 02/22/2010

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my son has mild cp and is also spastic diplegic and he walks ... he is now 13 and he started walking around 2 years old just be patient and keep up the good work momma

Jodi - posted on 02/12/2010

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Hi Abi, our son now turning four next month, I can't believe it. He was diagnosed with mild cp at 15 months. They didn't think he would walk before two and he didn't. He walked just after and not very well. Now he is running outside with his friends and playing. He didn't learn to jump until after his third birthday. I know it can be hard as kids seem to deem when they want to do things. Physio will help. Have you asked about getting her an actual walker with wheels? Not a stroller, but one with handle grips and brakes. Be patient and she will walk soon. Have faith. It's not easy watching your child struggle, and the guilt I felt as a mom because I too couldn't carry a forty pound child all the time... was overwhelming but it's natural. We love our little angels but at times I felt like giving up and cried a lot at the difficulties, but then I looked at all the obstacles our little boy had overcome and I thought what a champion he is so I found the strength. Never feel guilty asking for help or support. It's silly if you don't.

Keep us posted on how she is doing.

Fara - posted on 02/06/2010

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My son was born at 29 weeks, 2 lb. 5 oz, and has mild cp. He started walking 2 months before his 3rd birthday. He can run and does everything now. His walk is not the prettiest but he is full of personality and is loved by everyone! We did AFO"s for years and quit wearing them last year. We do botox injections every 4 months and it works wonders on him! I did get a push chair ( a bigger stroller that holds up to 100 lbs for when he was smaller and he was too heavy. Now we just use it if we go to Disneyworld or places that wear him out. It gets much better.....is still emotional to me at times but he goes to regular school and is one of the smartest in his class!

Megan - posted on 02/02/2010

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Hi Abi, I am currently still going through the hurdles of haveing a child with Mild CP. My daughter is Indiana and she is 3 1/2 yrs old. Indiana was diagnosed 1 week after birth with severe CP. She was born 6weeks early 4lb. 5 oz and had a bleed in her brain and alot of swelling. We were told at first she would never walk or talk or do anything for herself. It was devistating. Amazeingly though, she pulled through and her bleed stoped leaving her with Mild CP. Its hard because no one was interested in helping her untill she got to 2 yrs of age. Its harder when they have Mild CP, the signs change all the time. Indiana started walking at 14mths of age, we were lucky but she walks on her toes 90% of the time. She started her treatment 14mths ago. She has promblems with her hips that need to be monotored, and many other health problems and has just been diagnosed with epilepsiy, but she is a strong determined little girl and nothing stands in her way. She has an older sister and has been in child care since she was 9mths old, i think it helped a great deal for she saw other kids walking and running etc and she wanted to do so it pushed her that bit more to be more indipendant. Now she wont let my do anyting for her LOL. Dont feel guilty to ask for support, its there so use it. I was on my own (single mum) when it came to the care of indiana and her sister so I had to get over the guilt and use it. If it wasnt for me she wouldn't be where she is today. SO be persistant and push to get her the help she needs, I fought for 12mths to get Indiana hers and now its endless the support I get. My email is indalia@live.com.au if you ever want to chat. Megan

Donna - posted on 01/29/2010

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We had the same problem and a new PT came in and pulled ankle weights out of her bag and our daughter walked 20 steps for the very first time. It is supposed to ground them so they know their space..... Our daughter was born at 30 weeks and has a 3 and a 4 bleed of the brain and hydrocephalus.

Paula - posted on 01/28/2010

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Hi Abi i know how you feel. As my son is 5yrs and has spastic quadriplegia where he isnt able too walk at all and he has dislocated hips too. He wasnt too bad before he had a massive seizure in June 07 which took away eveything he had. He was just starting to take some steps with a walker and was so happy using it too. I would love to see that back but unfortunately we wont be able too now. My back is in pieces mosst if the time. Please be patient with preemie and also the AFO`s will make a huge difference too. Hope you go on ok Paula x

Jamie - posted on 01/22/2010

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Hello, my daughter has mild CP also, but she started walking at 13 months. We noticed something was wrong when she was about 19 months and she was falling down a lot and very unsteady. Eventually she was diagnosed with CP, she first had shoe inserts and just recently got AFO's. Since the AFO's she will not walk without assistance whether she has the braces on or off. It is VERY frustrating, since at one point she was walking. I don't know what to do, because the AFO's are making her walk correctly, but she will not do it on her own. She has therapy 3 times a week and all her therapist seem to think she should be walking. We are going to get a second opinion to make sure nothing else is wrong.

Catherine - posted on 01/17/2010

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We got my son at 2 and a half and he was barely walking. He also has mild CP. He was put on AFO's and that helped alot. I have noticed to that my son takes a LONG time to progress. His neuro took him off his braces just recently and said the only thing left for me to do was strength training. I feel very helpless. Just know she will eventually walk and you are doing all you can. ;-)

Robin - posted on 01/07/2010

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My son has mild CP, he was diagnosed at about 13 months old, he stared walking with walkers at 3 and on his own at 5. Every child is truly different and you just can't predict when they will reach different milestones. I had one pt tell me he would probably never walk. They just don't really know. Carrying him until his was so big was very hard, I remember very well, I would just wish that he could at least just stand there unassisted so I could just set him down anywhere to grab things or whatever. Just don't wish for them to grow up too fast, mine is 12 now and looking back it all seemed to happen soo fast, even though sometimes I felt things were moving soo slow.

Lisa - posted on 09/08/2009

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My daughter Jordyn is 4. she also has mild spastic diplegia. We are working as well on walking.. her main means of mobility right now is her wheelchair and crawling.. Jordyn's progress has come in spurts. but things have been slow going and very frustrating. She is beginning to realize that she is different and she is trying to do things like other kids and finding she can't. I too used to be a mom that liked progress coming faster. and I had to allow myself to let that all go.. Jo Jo as we call her is doing this in her timing, it's her show. Jordyn has seen some improvement with AFO's as her feet are collapsing inward and she needs the support.. Maybe it's time to consider looking into something that allows your back a break from carrying her. We had to.. it was killing us to be constantly carrying her. and it's not good for you long term to be doing that.. you have to be healthy to take care of her. hang in there...!!

Kelli - posted on 07/19/2009

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My son Jacob, who is 28 mo, has recently started walking everywhere. He had been using a walker since January and then started taking a few steps about 2 months ago. He got a virus and was weak so he fell more than normal and almost gave up for a while. I think his confidence was shaken, but now he is everywhere. We went to church this morning without his walker for the first time and he was able to walk all the way down the hall to his room. He is slow and takes small steps, but he will get better. Anya will be going everywhere before you know it.

Tleena - posted on 07/08/2009

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i have been though it my son cody was diganosed with mild CP, he walk just before his 2nd birth but only really started walking all the time in the last few months as it tries his out. we were suprised when my son started to walk because we thought it would take alot longer. one day she will just surpise u and get up and go

Katherine (Kathy) - posted on 06/17/2009

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Hi, I have twin daughters, born 7 weeks premature, 33 weeks. Grace, my youngest twin by 1 minute, got dianosed with Mild CP (Spastic Diplegia) when she turned two. Grace had physical threapy twice a week too, and also got treated with Botox, (yes I know, plastic surgury comes to mind, doesn't it? - Botox was originally designed to treat Celebral Palsy), and also got AFO's which helped her a lot and she was walking by Christmas that year (2005). But every child, even with CP, are different and it does take time. For the first year, we had loads of appointments for her, she even had a MRI, and had to have hip x-rays every six months but as she progressed,physical therapy went to once and week, and hip x-rays to once a year.But her check up with her Orthapaetic specialist were still every six months. She hasn't had to have any more botox, and she has been discharged from that clinic. She is five (5) now, six (6) in August and she is doing very well. Her physio therapist sees her once every three months now, she only has wear her AFO's at night now, and she had her hip xray yesterday and is good so now they will do other x-ray in two years and they will see her in one years time instead of six months as they are very happy with the way she is progressing. Now I am finding it hard to keep up with her, I consider myself lucky that she has responded so well to the treatment etc. Both Grace and her sister have had other things to cope with as well but they are doing well and are happy and that is the main thing. Hope this helped and don't feel guitly for asking for support, we all need it from time to time and it is nice to know that support is out there. Again, hope this helped. Just be encouraging and postive but "good things take time". Take care.

Susan - posted on 04/19/2009

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They told us that my grandson at age 2 would not walk until age 5 then it would be with a walker ! We kept searching... he was walking on his knees.. we found a clinic offering Intense Physical therapy with the therasuit combined with HBOT.. the 3rd week he was WALKING !! Every child is different.. they did not promise us it would help him.. but we HAD to try.. http://www.wisconsinhyperbarics.com/ tell Shannon that Susan sent you.. ALSO... http://www.beyondptkc.com/intensivept.ht...

also.. check out the new web show for families with special need children..

http://www.specialpeoplenormalworld.com you can also become a fan on facebook !

Abi - posted on 04/09/2009

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Anya took ten steps yesterday!  Not only were they steps...they were "slow and controlled" steps.  She would step and then stop herself.  YEA!  Her AFOs are really helping her gain confidence and stability.  I've been surprised by this.  She is starting to pronate her left hip, which the therapist says is normal when the AFOs begin keeping the foot straight.  The therapist said we just need to strengthen her hips more and concentrate "helping Anya walk from the left side" (the left side is the hip that's pronating (turning in)).  This way, Anya has to almost "lean to the left" and won't feel as inclined to turn that left him inward.

Jamie - posted on 04/09/2009

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Hi Abi,



I am a mother of a 5 1/2 year old boy the has mild CP. We also use Botox on his legs and hips. And It has been wonderful. He has been having them for about 4 years now. He also uses DAFO's. And he wears night splints. He just started to walk a little on his own and now is up to 12 steps on his own. Doctors can never tell you if or when your child will walk. All they can do is really guess. 



 



Have faith! It is a long road but it will work out. My son is now also walking with crutches. 



Hopeful,



Jamie

[deleted account]

Hi Abi,Elle is on her 5th lot of botox that she has in her leg and arm,Elle is moderate to sevier cp,i find botox great and we rely on it as she stiffens up very quickley,Elle has botox every 4mths and has a cast for 4 weeks at a time.
For us this is the best option at this time as they like to operate between 8-12yrs but we are looking at the op at about 6-8yrs so in this case it will mean that she may undergo a second surgery due to the fist one being done so young,LET ME STRESS THOUGH to everyone that not all kids with cp needs an op,elle does becouse of the tightness and she is a grade 4 in the legs and becouse of her leg rotation at the hip.

Alot of the botox scares that you hear are for cosmetic reassons due to people having it in their faces under the arms etc and that it places strain on their heart etc,botox was originaly made for cp and other muscular disorders until the cosmetic world got hold of it and thought that it would be a great money maker,and they were right.
We are know trying the new method that they have hear in Australia were the child has the botox under gas,it is less invasive than them being put to sleep and fasting from 7am.
I hope that this helps you with you'r decition on botox,it really does help and botox isn't forever.
All the best and it's great to read so many other stories,this really is a great forum.
Regards
Ruth.

Alison - posted on 04/08/2009

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My name is Alison, I am new here. My son was born at 24 weeks 600grams no longer than my middle finger to my wrist. He suffers c.p I was told he would never walk due to major brain bleeds. I took him to phizo 4 times a week, early intervention, he got/gets massages, and all kinds of different therpies. he then started walking at almost 3. he is now 4 and although he still fall's alot and gets sore legs he can run and accomplish steps with my help. He shows and we show him how proud of him we are. He is in a main streem kinder with a helper and loving it and the kids he is with love him and understand him. Although we have just had sad news that his lung disease is worse you could not tell the way he is always happy and talkative.

Dont worrie about being impaitent its normal. you just have to take a breath and understand that your child will also be impaitant and frustrated that she can not do the things that her brain wants her to do.

[deleted account]

Hi Abi,
My know 5 year old suffered 2 brain hemorrages at 3 and 1/2 weeks old and spent 3mths in the RCH,we were told at first that she had a 50/50 chance of living due to the severity of the hemorrages,at 3mths old i got her into therapy,for the past 5years she has been seeing,2 physio's,2 ot,speach therapists,2 psycologists,peadutrition,opthomologist and other specialists in the RCH,around (12 appointments a year)and other specialists that i have not mentioned.we were told that she would not see and would not walk but we never gave up,it has been a long prosses as you can not rush kids with cp as they use up more energy than that of an average kid and tire out much quicker becouse of their muscle tone.
My daughters head was continuasly turned to one side and still could not sit at 18mths unaided.
At 2 and 1/2 we had managed to train the head to start moving from side to side and then was concentrating on the eyes at the same time,and by this time she had started to bum shuffle,we have had walkers and wheel chairs for her but she hated the walker,at christmas of 2007 we started consentrating on her standing at furniture as she could not crawl,in the may of 2008 when she was 3 and 1/2 years old my youngest daughter started to walk and 3 days later Elle walked the whole lenght of our lounge unaided,i took a double look and she did it again,i cried and called everyone i new and showed her off to everyone,know at 5 she can walk,run,jump only on one leg and is great on the netted trampoline,she wares glasses,has AFO'S,DAFO'S,piedro shoe's,hand othotics for day and night,botox every 4 mths and a cast for 4weeks at a time after botox,we are know in the process of seeing if she has Aspbergus,and we are still looking at many operations that she has to have in the future as her cp is moderate to servier(grade 2 & 4)it has been a long hearl,we have no family around as they all live over seas,sorry for the long email but i can get very pashionate abot this topic,but i just want to say dont rush it,you'r little angel will do it all in her own time,please never give up hope as i know it is easy to not see the light at the end of the tunnel,they are worth all the heart ache and hard work,i have know enrolled my daughter in swimming lessons and if she never swims then that is ok as long as she loves the water and it helps with her muscles and coordination,you're Daughter sounds like she is a little fighter and is doing so well and has acheived so much in her milestones,i'm not sure if you have any other children but i see the big difference between my two but they are both great at different things,Abi good luck and i wish you all well and i hope that our story gives you hope.
all the best.

Ruth xx

[deleted account]

My daughter tried those AFOs and could not walk with them but yet some kids can walk fine with them. If they had just made the ones for her feet instead of the ones that go up the leg then she would have maybe benefitted as now her feet are a bit deformed. She can still walk though. She likes to wear high top runners to give her support.

[deleted account]

My daughter tried those AFOs and could not walk with them but yet some kids can walk fine with them. If they had just made the ones for her feet instead of the ones that go up the leg then she would have maybe benefitted as now her feet are a bit deformed. She can still walk though. She likes to wear high top runners to give her support.

[deleted account]

My daughter tried those AFOs and could not walk with them but yet some kids can walk fine with them. If they had just made the ones for her feet instead of the ones that go up the leg then she would have maybe benefitted as now her feet are a bit deformed. She can still walk though. She likes to wear high top runners to give her support.

[deleted account]

My daughter tried those AFOs and could not walk with them but yet some kids can walk fine with them. If they had just made the ones for her feet instead of the ones that go up the leg then she would have maybe benefitted as now her feet are a bit deformed. She can still walk though. She likes to wear high top runners to give her support.

Abi - posted on 04/02/2009

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We have had our AFOs for two weeks now.  It's going better than I expected.  We're only up to wearing them about 5-6 hours a day...but I feel like we can work up to all day slowly.  They make a HUGE difference in her confidence.  She still can only take about 5 steps without holding on.  The therapist noticed she is starting to do that "hip thing" that others have referred to.  So, we'll just see how it goes!  It's great to hear about what others are going through with this!

Jennifer - posted on 03/19/2009

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Abi,

Welcome! My daughter also has Mild CP with Spastic diplegia and walks with a walker. She is 3 years old. AFO's help her immensely with the support in her legs and ankles. She desperately wants to walk "like the other kids" but she still needs her walker for now. She has been starting to use loftstrand crutches and this will help her learn how to walk without so much assistance. Then the next step will be to try to walk independently.

We tried botox 2x's and didn't see a remarkable improvement so we stopped. It's a lot to put Rachel though without a much bigger return.

She gets stretched out several times everyday. She'll come around to walking when she is ready.

It's great to hear that Anya is making such great improvements. She sounds like a determined little girl. Best of luck to you both!

Bethann - posted on 03/16/2009

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my daughter was about that age when she did. we did alot of stair climbing and long walks because she would at that point walk with our hands. we also had those shoes for kids learning to walk the ones that go up to their ankle.

Cindy - posted on 02/24/2009

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My son is now 6.5 yrs old.  He was not crawling at 12 mo's so we began seeing a physical therapist.  I didn't know it then, but that physical therapist would be the person to teach myself and my son, just what he "was" capable of.  Kamden was full term, but born with multiple disabilities including mild CP.  The P/T would show me what to do at home and work with Kamden one hour a week.  He was crawling in two weeks, then began creeping along furniture for a favorite toy a few steps at a time.  I could tell he was very afraid to move once standing.  He does not have good depth perception even now, so I believe that is the reason for the fear of letting go while standing.  It seemed forever, but in 8.5 mo's he was taking independent steps.  Not long after that the physical therapist moved further away from us, so we decided to go to another facility.  We were at the other facility for about 10 mo's, but Kamden was not making as much progress.  We decided the long drive to see the other physical therapist was worth it.  He went on to teach kamden how to go up and down stairs independently, walk a balance beam, and ride a bike.  We did all the therapies at home everyday, we still stretch his heel cords and calf muscles 2-7 times a week and give him epsom salt baths 2-4 times a week, depending on severity of tightness.  Everyday he needs walking, running, and stretching, otherwise he gets stiff and achy.  He doesn't always enjoy it, and we have always had to push him to the next level.  However, I know all the activity helps because, although he does not speak, when we forget to stretch him or go a few days without much activity, he communicates that he wants to take a walk or that he needs to be stretched.  We recently went snowboarding and he did awesome.  I would have never thought that possible last year.  



So keep your head up, sounds like your little one is close to walking independently!  



Cindy  

Janice - posted on 02/12/2009

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Quoting Abi:



Anya is having a great week.  She's wanting to try and take a few steps on her own....from sofa to our arms....over and over and over....for three days in a row.  I think she's overcoming her fears!



 



That's great news!  It will get esier for  her every day. I did not learn to walk until I was almost 4 years old. The doctors thought I woul be in a wheelchair. I fooled them. I was determined. And one day BAM!!!! I got up and started walking. The only aid I use today is an AFO. I don't wear it as much as I should, but I know my limits.  Good Luck to you and your daughter



 



Jan





 

Abi - posted on 02/11/2009

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Anya is having a great week.  She's wanting to try and take a few steps on her own....from sofa to our arms....over and over and over....for three days in a row.  I think she's overcoming her fears!

Sarah - posted on 02/10/2009

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Hi Abi,



I understand the fear of the botox. My partner and I were also scared about the outcome of the injections after the stories we had heard but also very eager to hear the pros of the treatment. Josh has between 2 to 6 injections every 6 months shared between his ham-strings and ubductors (sorry 4 the poor spelling). In Joshuas case they work very well. The hospital were very good and gave us alot of information on the pros and cons and it was good to know that after 6 months the effects do wear off so if all does go in the wrong direction the it wont last forever. The only down side in Joshuas case is that he does experience some pain in his legs but this does only last for no longer than 48 hours. I do hope that if you do get the option of botox and agree to it then everything goes well for you!

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