My 7 year old son has very Mild Cerebral Palsy

Vivienne - posted on 04/05/2013

My daughter has mild left sided hemiplegia. she has botox every 6 months followed by serial casting then wears an afo. She is at the top of her class, does nippers, tennis, swimming, netball. she gets a lot of pain though from her tightened leg and toe walks. The casting causes lots of issues and she gets a cut under her big toe constantly. she also really dislikes people noticing or talking about her leg and falls a lot. Shes eight.

Has anyone had SDR for mild, high functioning CP? I am considering taking her to Missouri but am scared that I may hurt her in some way or make things worse. She has physio twice weekly but its a fight as she is growing so tall and its hard to keep her ankle from fusing. She has no consentual movement from her knee down left side. I really want to talk to mums with similar - it seems a dream to have her flat footed and she would work hard at the physio but I am frightened of an invasive op.

Roshni - posted on 03/21/2013

Hi Aleesha

My son just turned 5 in October, and also has mild CP, he is on epilum for seizures, but THANK GOD doing much better. He also has this toe walking, but only the right foot. It seems like the right side is weaker then his left. He has also had botox done recently and goes for Physio. We are having such a problem at the moment, finding a school that caters for kids like him, cause we are not sure, how he will adapt having him go to a mainstream school. We are also having such a problem with him going to the loo, he refuses to stop wearing his nappy. Can you advice. Thank you

Lana - posted on 12/28/2012

hi Caroline Mangelsdorf,
what are the special supplements you gave your daughter and from which company can I get them.
lana

Sue - posted on 12/14/2012

it feels good to read your post ladies, for a long time i feel so alone after receiving diagosis from the doctors. Early this year my 17 months old daughter has been diagnosed with dystonic cp and we were told that she will never walk, talk and will be a wheelchair user. We have been to PT, OT and speech therapy and I am very hopeful every single day inspite of the challenges i'm facing everyday. When put in sitting position she's sitting straight and it just happened recently. She's improving every week and we constantly give her exercises at home after work. From a very floppy baby, she's able to hold her head well now and opening her fisted right hand. She's able to walk around assisted on her trunk.
I must admit theres a lot of times i feel so down but I'm glad that I found this site where parents with children with additional needs can share their thoughts and emotions here.

Christina - posted on 12/11/2012

Hi not sure if you have treated with Botox but wanted to

Tell you about our son. He is 7 and was born at 26 wks with

Mild spastic cp, we did two yrs of Botox in his lower legs

And it worked great that was at age 3 I wanted a permanent fix and

Researched everything we finally had a selective dorsal rhizotomy done

In July and he is 90% better! No more tippy toes and no more tightness or

Pain. It was a major surg with one month in house rehab and six months outpatient

But we found it worth it. If you have questions need info let me know. Our surg

Was done in NYC at Colombia NY Presp

Barbara - posted on 10/23/2012

My son has a little more cp then your precious little boy. He does walk but with a wide step, does not run with feet off the ground they tried Spadix shorts sewed in the crotch aria together trying to have the separation of his legs closer together.but it hasn't worked. But never the less. I will pray for ur son and I know as he grows things will get better,and also try some not so heavy weights on his ankles that can help,and also it mite help his tippy toes.God bless.

Shaista - posted on 10/22/2012

Hi Aleesha,



I just came upon this website and your story and the responses sound like my daughter Hannah. She has mild spastic dipeligec cp that effects her lower extremeties. She has done phenomenal and now attends Kindergarten. I feel we are at a plateau in terms of her milestones and I feel like a fish out of water. I know I have to do more for her but I don't know what!! She gets PT once a week, she takes swim lessons, she wears SMO's in her shoes. They cannot be seen but I am not sure they are doing anything. Her hamstrings are tight so our PT mentioned to get an e-stem machine that create more range in her feet. She did use a knee immobilzer at night, which I felt got the best results. We did do serial casting over the summer, but did not give us any major results. I am toying with the idea of botox but not sure! Any suggestions on shoes?

Mistey - posted on 09/03/2012

hello my name is mistey i have a 7 yr old son named braxton who has cp on the left side affecting his arm and leg. he was diagnosed about 6 months old with it, at birth he was in nicu for his first month due to at that time they thought a mass on his heart and blood pressure very very high but after a couple months of test after test they found out he had a severe abdominal coarctation of aorta ( hope i spelled that right ) the docs was able to pull my baby thru that but he still deals with alot of other health issues. he has high blood pressure and is on 3 different meds an aspirin and one to stabalize his moods. he is developmentaly delayed, he is in regular 1st grade class but is pulled out for an hour a day for special ed teacher. he is a very determined little boy he doesnt let his disabilities stop him. he is in ot, speech and fixing to start pt again. nobody knew for sure if he would ever walk. he started out rolling every wheres the went to scooting with his right side then to walking at about 3 yrs old. he has had a couple different afo's but never really worked and botox twice trying to get his left leg to loosen up cause he walks on his tiptoes on left foot. there still alot of days to where he will ride in wheelchair because his legs hurt, but we go tomorrow to hospital for surgery. the doc is doing a heel core lengtheny surgery, i am really nervous about it but i keep praying that this will work. he will be in a cast up to his waist on left side for month then he will go into another afo. it has been a very long 7 yrs of ups and downs and very stressful alot of times cause i have 2 other kids to and im a single mother. he still has a very long rode ahead of him but u just have to stay positive. his smile on his face every day is what keeps me going most times but if any others would like to talk send me a message somtime.

Michelle - posted on 08/29/2012

Hi Aleesha...



You are not alone. It is nice to know that there are other mom's out there going through the same thing we are here. Here is a little bit about my daughter Mary. Hope this helps.......

My 7 year old daughter has mild spastic dysplasia cp. She goes to a typical elementary school, but is in a sped classroom due to dev. delays. She can run and play with the other kids at school. Cp doesn't stop my little angel. Her walking and running is compromised b/c her legs do turn in. She wears twister cables and dafo foot braces. She can get along well without them. but is very clumsy. They do rotate her legs out and make them strait but only when they are on. She has no muscle memory of them. So they go back in. She has tried theratogs they are like a diving suit material and can be for your legs or upper body. It did not help her but may for you. We have also tried rotator straps. Worked well but kept falling down. We may trie kenisis tape (spelled wrong) its tape that the swimmers used in the olympics if you watched it. It is supposed to last about a week and help with muscle memory. I am also worried like you what is the correct course of action. Our children are also at that age where they are starting to notice they are "special" Mary does participate in gymnastics and dance class ( dance is for sped b/c legs get tierd fast) but has a great time. We have done soccer in the past. Nothing stops this kid. She is inspirational. I worry b/c the drs. have mentioned internal rotation surgery when she gets older and I am trying to avoid that at all costs. At the same time she hates the twister cables( they are vey apparent. worn on the outside of your close and there is no hiding them). All she wants to do is wear pretty Hello Kitty Shoes like all the other girls. So I let her now and then. It is hard though. I find it hard b/c she looks like every other kid with out them on until she walks around. How does your son do with writing? We are discussing with the school using a keyboard b/c her hands don't always do what she wants. Don't fret you will do the right thing. It is always hard and as a mom we always 2nd guess ourselves. I hope you find some comfort knowing you are not alone. Feel free to contact me anytime and we can chat. Our kids are the same age and it sounds like some of the same issues.



Michelle:)

Laiba - posted on 08/27/2012

anyones kid with spastic quadepegiea cp sitting our walking.

Laiba - posted on 08/27/2012

hi my name is sham ive got a 4 years old daughter with cerabal pasly spastic quadpegiea

Caroline - posted on 07/02/2012

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

Sharlene - posted on 06/22/2012

Hi my little girl has mild cp as well she has low musle tone and when she does walk around toys and furniture she very clumsy. Also she has other GDD and also has feeding problems with swallowing and has a feeding tube. She in OT ,speech and physio and other services.

KIMBERLY - posted on 06/12/2012

HELLO IM KIM MY SON IS TYREE, HE HAS MILD CP WHICH IS SPASTIC DIPLEGIC CP. TYREE LEGS ARE VERY TIGHT ALSO, I WAS SUGGEST THE GOING TO A OTHOPECDIC DOCTOR, BECAUSE THE SHOES IS ONLY FOR SUPPORT FOR THE FOOT. HIS HAMSTRINGS IN HIS LEGS ARE TIGHT THATS WHY THE FEET OR FOOT WILL GO INWARD.PLEASE SEEK A ORTHOPEDIC DOCTOR LET THEM MAKE THE BEST DECISION. ASK ABOUT BOTOX INJECTION IN THE HAMSTRINGS OR SPASTIC MEDICINE. TYREE IS STILL FUNCTIONABLE WITH TAKING ORAL BACHLOPHYLN.

Barbara - posted on 04/22/2012

sorry about your sons feet I hope they find a solution......hang on in there.

I also have a son with CP mild but at eight my son has just started limping lifting

his left leg to walk he was off of school for a week ,but is going back on Monday I will talk to the therapist and then to a specialist i'm so worried.......if anyone knows of this problem when he was walking fine but not great and now is lifting his one leg to walk.please tell me.

worried mom

Eileen - posted on 09/19/2011

yes my son Lucas has mild CP. he was born premature at 27 weeks and is now 8-1/2 years old. he wears a brace on both his right hand and foot. he started walking when he was 18 months old but only because of intensive pediatric physical therapy. he does the pediasuit protocol now twice a year at therapies4kids and he loves it! good luck to you

Karla - posted on 05/25/2009

My son John has a mild case of cp. He was diagnosed when he was about 10 months old and will be 5 in December.. We have had so many ups and downs. He has a lot of trouble walking but has been using a reverse walker for about a year and is doing pretty good. Every PT we have seen the last couple of years has a different idea, we go from afo's to insert's to nothing!! It gets so frustrating.. He has had botox several times but I'm not sure it really worked the way it should because they didn't cast him as often. The PT we see now wants him to see an ortho finally I've been asking about that forever. I kinda excited to see what they will say maybe something to keep his feet from turning in, it kills me to watch him wall barefoot because his big toe is under his foot. That's all for now. I'm so glad that I found this site, I was beginning to think I was the only one out there having trouble!!

Rebecca - posted on 03/28/2009

Our daughter has been wearing braces for her feet since the age of 2 and she proved to be a little Houdini when it came to getting her feet out of them!  This went on for a very long and frustrating time until our ortho put these little 'pillows' on the inside of the brace around the sides of her heals.  This has proven to be a god-send as she is now unable to get out of the braces and she has stopped walking on her toes.  She doesn't care for the braces but realizes that they do help her maintain walking.  She has had 2 bouts of Botox for her heal cords that have worked wonderfully!  She hasn't needed them in the last few years but in the beginning they really worked for her and according to her ortho she doesn't need to have them again so far!  Hope this helps and I can understand the frustration you are feeling.  Our prayers go out to you and Bryce and to the doctors!

Hollie - posted on 03/28/2009

Hi Aleesha! I just joined this group and this was the first post I read. Your son Bryce sounds so much like my son Ian. Ian was diagnosed with Mild spastic diplegia CP in July of 2006 when he was 6 years old! Ian will be turning 9 on Easter Sunday. Ian's CP affects mostly his ankles and feet. Just like your son, his hamstrings are extremly tight. His heel cords are also tight and Ian is also flat footed. Ian had AFO night braces to wear when he sleeps and wears nothing during the day. We always make sure to buy him good shoes with good arches. Right now he is seeing his PT once a month just for check ups as he is at a good point. Ian takes taekwondo which has been a blessing for us. It helps keep Ian stretched out and active. Just like your son, Ian walks up on his toes a lot. We are also watching Ian's legs as one is slightly longer than the other. So far we have not had to discuss surgery although it is always a possiblity in the future. We had debated casting about a year and a half ago and decided against it. That is when we put him in taekwondo, had him in a therapeutic horseback riding program, and started using his AFO's at night and that is what has worked for us.



Good luck in all your decisions and feel free to write me anytime.

Tammy - posted on 03/24/2009

Hi Aleesha,

My 5 year old daughter also has mild cerebral palsy. Hemiplegia to be more specific. My daughter had afos from the time she was 2, but no longer uses them. They didn't seem to be helping and just slowed her down. She had 1 round of botox also, never again though. We thought it might help a bit, but it really didn't make make of a differece at all.

She is in a normal class at school. I am concerned about the possiblitiy of learning problems as she gets older. Does your son drive a bike? I am having trouble getting my daughter to. She is a bit scared  (her balance isn't the greatest), and the one foot slips off.

How is yyour son doing now.

Hope to talk to you soon.

Ellie - posted on 03/20/2009

Hi Aleesha, my son Matthew was diagnosed with mild CP when he was 8. This was a huge shock to us, with both my husband and I being PE teachers, but we always thought Matt has coordination issues, but were not overly concerned, til he started walking up on his toes. We had a range of tests before the CP diagnoses. Since then, matt has had several botox injections into his calf muscles and used AFO's. he has had some casting as well. All three of these things have given him positive outcomes in terms of his range of movement. Regular exercises are helping too. Matt plays soccer and swims, which have also been great in regards to helping his range of movement. The botox has had a great impact .. not sure if you have tried this with Bryce .. we are only new to CP (2 years) .. but can see benefit from botox with Matt.

Karen - posted on 03/16/2009

hi, my name is Karen and i live in Australia. my daughter nichole is now 14 but she was born with a right Hemiplegia and has mild cerebral Palsy. i can't say it has been easy, but she has gone through therapy since she was eight months old and an assortment of Afo's and splints on her leg and hand. She too goes to a main stream school but has been put in a special unit now she is in high school for some lessons. She walked for a long time up on her toes and had a prosthetic to wear that came up to just before her knee that she wore inside her shoe. She hated it and the fact that she stuck out amongst the other kids as being different. she has learning problems now she is older but is accepted by most of her friends as being just like them and no different from her twin sister.
Hope this is of some use to you and you can ask me if you have questions I might be able to help you with.

Tammie - posted on 03/15/2009

My second daughter has CP plus she has Autistic spectrum disorder.  She is now 15 1/2.  She cannot speak & is very physical.  after being told that she most likely wouldn't walk, I spent almost an entire summer on the phone requesting help in getting a wheechair for Alex, she decided to stand up & walk on her own just a week before her 4th birthday.  She is extreemly active.

After I was injured in a car accident We hadto make the hard decission of placing her in full-time care.  Alex now lives in her own home staffed round the clock by 9 wonderful women.  We can see her as often as we want & make sure she comes home at least one day a week for dinner with her family.  Alex was only 5 when we placed her in full-time care.  She is very happy.  Happy to visit, happy to go to her home.  We gt to laugh with her & have lots of good family time as she comes with an aid to look after her personal needs as I am unable to.

Wendy - posted on 03/11/2009

You sons case of CP sounds a lot like mine.  I have a 5 1/2 year old who was diagnosed at 2 1/2 with spastic CP which only effects his lower extremities.  He is playing Tball this year for the first time and I must admit I'm a bit nervous for him because he does stumble quite a bit and fall since he tends to turn his left foot in when he runs.  He wears AFO's (the left all the way up to the knee and hte right is just around his ankle) but it does help keep him from toe walking.   I understand the confusion with knowing what to do and everyone having different opinions.   My sons case is mild enough that we do not require follow ups with a neurologist but he sees a PM&R physician who handles his CP care.   We are fortunte to have wonderful therapists here in the Medical Center at Texas Children's HOspital.   He is in Land PT Therapy one day a week and is finishing up a rotation of pool therapy which he has shown so much improvement.   I will be praying for you and Bryce.   

It is a good feeling to know I have found a place that other parents are dealing with the same types of things I am.   I am new to facebook and joining groups so I am very glad I found this one!!!!

Amanda - posted on 03/04/2009

My child doesn't have CP but my younger brother does. It's a mild case and it only affects the right side, his hand and leg. His right leg is shorter than his left so when we buy him shoes we have to send them to get a lift put in the right shoe so he can walk evenly, hopefully preventing more problems in his hips. So far we've been extremely blessed with his case. He has surgery every year to stretch out his heel cord. He also walks on his toes on just his right foot, besides the lift put into his shoe he also wears a leg brace. It's made of plastic and is keeps his right foot at a 90 degree angle. The top comes up to about a couple inches below his knee and straps his shin in. The bottom is a full plastic piece that covers the entire bottom of his foot which forces him to walk on flat feet w/o tip toe. He's now 11 years old and understands more of what's going on but still needs to be reminded every now and then to stretch. I also have another younger brother who is 10, when they were younger we would play games with them that would be fun but at the same time would help him stretch and cause him to be on flat feet.



II hope this helps and I hope that things work out for your family. i think it's great that he plays ball and enjoys it. My brother is too self conscious and scarred that he will be made fun of for only being able to use one hand. (though truthfully he does better with one hand than I do with two...I think he knows this and that's why he likes playing with me =) stay strong and keep smiling.

Jenny - posted on 02/28/2009

My son is 3 years old. He wears hindged DAFO's made by Cascade. They keep him from toe walking and somewhat turning in his right foot. Before he was in the hindged DAFO's, he wore solid DAFO's without a strap at the top. If your son is as mobile as mine, he needs as much freedom mobility that an orthotic can provide.

Catherine - posted on 02/24/2009

My son also has mild CP.  We have had trouble with him on his toes and his feet rolling inward too.  Louis has AFO's One short (right at his ankle) and the other to his calf.  He is five now.  We have to constantly remind him to walk on his feet when he is home and doesn't have his braces on.  Our neuro thought it would best if he didn't wear his braces at night or on the weekends as he was begining to rely on them too much.  We don't worry about having to remind him, because he is so young, we just think eventually he might be in the habit of doing it himself.   We stretch him  twice a day and of course he get PT and OT.  We have also thought about getting taps for his shoes.  It will probably get on everyones nerves but if it helps him.  Abilitations has some that aren't that expensive.  It encourages heel toe walking.  If your son didn't want to wear them out, he could at least wear them at home and it would help him be more aware of how he is walking.  Good luck and I hope you find something that works for him!

Leann - posted on 02/22/2009

my sonJustice has a mild case of cp to.he tries to walk in his walker he also pulls himself up to sit and stand.he is just starting to do a combat crawl.he rolls from side to side and very strong lil man.he is 8 years old was a25 week preemie.we other things as well were trying to over come.he is suppose to be getting afo's soon so wil see.take care.Leann

Abi - posted on 02/03/2009

I'll be keeping you and Bryce in my prayers.  You've had more experience with this than I have, as my daughter Anya was only diagnosed with mild CP a little over a year ago.

Sharon - posted on 02/03/2009

My Daughter who is now 17 was diagnosed with Mild CP down her Left side, when she was first born they thought she had clickey hips so we did the whole doulble nappy thing by the time she was 8 weeks old they realised that she had cerebral Palsy. I was told not to let her put any weight on her legs, only to massage her muscles, the Orthopedic surgeon who i first went to told me that she would never crawl or walk and that her lot in life was to be in a wheel chair. That night I was up feeding my daughter when a very old movie came on about this nurse who treated polio children and removed their braces and srenghtened their muscles, the very next day I didevery the opposite to what i was told, i would get her to push with her legs, as she got older I would hold her up in a standing postion and taught her to put a little basketball into a little hoop on our fridge, to kicking that same little ball, She never did crawl but sh did walk at 10mths straight into his office. I then changed surgeons , i did have to have her sugically operated on, they cut the abductor tendon in her groin to release the tightening so the leg would grow and unlock. My daughter has no fine motor skills, Struggles with school and still has learning support to this day for school work, but she has represented NSW against Aukland in New Zealand for Littlle athletics and has represented Qld for Soccer (we live in Australia)  My daughter also is eplipetic which I havebeen told can be a side effect of the CP. The next testing for her will be the MRI I have never allowed them to do this yet as I have allways condidered her too young till know they tink she has a blokage of some sort. You will know in your own heart if you are making the right decision.

Nicole - posted on 01/25/2009

My 2 year old son has mild hemiplegic cerebral palsy and we are going thru the same issue with feet braces. His cp effects his left side, mainly his hand. We start meeting with the school in March to see if he will qualify for extra help after infant development. It sounds bad but I really hope that he does qualify.His speech has been up and down the scores and think that he could use extra help to stay on target. But I will pray for your son. And if you are not sure it is the right choice ask questions and push for answers. I feel the more I understand their thoughts and what they see present and future the more I can make a informed decision on effective treatment. I am not sure if you can request a trial in the braces that your therapist recommends from the doctor, but I would think about it. Keep us posted on the results.