Managing Cerebral Palsy/Spasticity

Bekki,
Sorry it took so long to respond but I am out of town right now. I would love to share all of Nia's experiences with you if it helps. She was diagnosed with mild CP (spastic diplegia) just before her second birthday. We realized that there was definately something wrong when she was approaching her first bday. She couldn't walk, crawl or even sit up on her own. We started therapy shortly after. She finally sat up on her own at about 14 months and took her first unassisted steps at 30 months old. Today she is about to turn 4! She runs, walks and attempts to even jump now. We still get weekly therapy as well as other treatments to manage her spasticity like botox and serial casting.

Please email me if you have any specific questions that you would like to ask. Just click on my name.
Desiree

Hi Erica,

My daughter Elena is 2yrs 9 mos, is currently ready for her 2nd botox shot. She was a 33 weeker, 5 weeks NICU, her pediatrician started worrying about CP when she was 9 months (after her 1st strabismus surgery was a failure and her eyes were still crossed). We had a definitive diagnosis at 15 months, but we were warned much much earlier and she started therapies through the Early Intervention program for her delays before she was 1 yr old. She got her first AFOs shortly after her official diagnosis (dates getting fuzzy here) and we got a walker on loan almost as soon as she could stand. Elena is a mild spastic diplegic. Before her 1st set of AFOs her feet were SO pronated her toes started to curl "out" (does that make sense?). Now without any shoes on she can stand up flat-footed, slight arch in the left foot (her right side is slightly tighter). We are now on her 2nd set of AFOs (our orthotist expects these to last about 6 months). The difference in stability with better fitting AFOs is astounding! With shoes (and AFOs) on, she can sit-to-stand, stand-to-squat-to-stand, and walk anywhere from 0-20 steps unassisted (she falls TONS, so we have to be ready to catch her). She can use her walker (regular walker, do they call that a 'forward' walker?) like a champ, she almost never falls, and she can steer it, back it up, even through tight places. She doesn't use it in the home any more, b/c now she's cruising or wall-walking (or crawling) to get places and the walker is 'too slow'. We go 'shopping' with the walker several times a week, including some instances where the surfaces are NOT flat (carpet, gravel, hills, etc). She is very tolerant and seems to love challenges (good thing).
She gets her next botox shots in a month (probably just calves). I am PSYCHED! I expect great gains, b/c she wants to do so many things but her body just won't cooperate.
Elena is changing rapidly now, I feel like this year (and part of last year) was the equivalent of most "normal" children's 1st year, where SO MUCH changes and they become their own little person. Share has been great b/c it's helped me get more of a reasonable timeline in terms of development for my child. I think Elena will be a bona-fide walker sometime this year (she will be 3 in April)...then she'll learn to fall. Our hope is she won't need the walker except for longer distances.

Amy

Erica~
Like you said every child is different but I thought I would share Nia's story with you. She was diagnosed with mild CP just before her second bday. As she learned to walk we found different things to help her along. I bought Little Tikes play push walker with adjustable speed. She could walk really well behind it. Then as she became more stable she would walk behind her baby doll stroller. Finally at 30 months old she officially became a walker. I can certainly say that Nia is anything but a example of devastation. She is absolutely inspiring! She doesn't let anything stop her. Email me and I will share with you videos of her walking so you can she how amazing she is.
Good luck.
Desiree

Thank you for your stories. I have been worried that Annabelle would need to have the walker for a very long time. Now that her botox has kicked in she's a hoot. She is cruising the coffee table and turns to grab the couch (about 1 foot away at a right angle). She seems to think the walker is hilarious. She laughs nonstop while going as fast as she can. A couple of times she has inexplicably let go and fallen flat on her face--it's actually a little funny (if you've seen the Princess Bride when the little guy drinks poison and goes from laughing maniacally to falling flat on his face, it's like that). Sometimes I wonder how I can doubt her, she's going to do whatever it takes to go, go, go.
We finally got her Dennis Brown brace and her knee immobilizer. She is tolerating her 2 hours on 'the board' fairly well and I think the immobilizer is awesome. She was sleeping with her knees tucked to her chest and now that one is held straight the resulting hamstring stretch has been noticeable.
I'm so glad that I have Share to keep my spirits up with success stories.
Thanks
--Erica

Erica~ Thought I would share some special moments I had watching my little girl....

I love that name. We are parents of cp kiddo. We do see a nuerologist. Also, a pt ot speech therapist. GI and Peds surg. Pumonologist, ...a lot of ists! However the nuerologist is the one who heads us in those directions. They also do scans of Cohen's brain to keep tabs on progress. Have you done any stem cell research?? I'm just beginning to find families who went to mexico or china with their cp kids and got good results.
JO

I have to be honest but I have never heard of stem cells being used to help with CP. Interesting. Like a lot of options out there, we have been told that Nia is too mild treat with anything other than lots of stretching, therapy and botox (bascially very uninvasive measures to control her tightness). We have had neurologist, physiatrists and orthapedic surgeons all care for Nia and they all give the same treatments. We haven't had a head scan since she was one year old. They told us that the damage that was done isn't progressive so there is no need to keep looking at it. Why does your doc continue to do head scans?

Pardon me for butting in, but I have heard about using stem cells to treat spinal cord injuries as well as brain injuries including CP. It just got me thinking... I should look into it again! There are also treatment centers where they do Hydrobaric Oxygen Chamber treatment for CP and other developmental disabilites. I actually looked into a "camp" in Canada... I can't remember what it's called now. There's also a clinic in one of the southern states (again, can't remember where... I think maybe florida) that uses that treatment. There were incredible results noted there too!

Hey Girls. SO, we did the hyperbaric treatments in Madison Wisconsin and we now own a chamber in our home! We LOVE it. It has shown amazing results with Cohen-NO LIE!! He had no head control and now his head control is amazing. He didn't make a sound and now he comunicates through grunting and oohs and aahs. His eyes were always off the the right and now he has some eye control. I could write forever, but if you would like me to send you his treatment journal via email that I wrote during his treatments-just let me know.
About the head scans-they don't think Cohen's is progressive as well, but they do them once a year-good question!
JO

I am in awe of all the strange things our PT suggests to improve Annabelle's movement. The latest suggestion is to have straps attached to her AFOs and connected to a belt around her waist. The term she used has completely escaped my brain. The goal is to keep Annabelle's left foot from rotating inward as she walks. Everything the PT said implies that this is awesome for Annabelle to need as young as she is. (She'll be 20 months on Sat.)
As with any new thing, I'm wondering what are the drawbacks? What horrors should I expect to come along with this? Will she wear them under or over her pants? Will she catch on things and fall more? Is this really a sign that my baby is doing well? (I know the PT keeps a lot of things on a 'need to know' so I'm not always stressed out)

side note: she stood solo for a good 1-2 seconds today!
Thanks, Erica

Erica,
Luke used something I think may be similar to what you're talking about. They were basically just big rubberbands they wrapped around his legs to keep them from rotating inward when he walked. He only used these for a brief time, but when he was wearing them we did see some improvement in his gait. He didn't continue to use them because the doctors decided that surgery would be a good thing for him.

I believe that the straps are worn outside the clothing most of the time, but I honestly don't remember.... Luke really didn't have any issues as far as falling more often etc... in fact, it really did seem to make walking a little easier for him once he got used to it. He didn't wear them all the time, though either. I'm not sure what the plan is for your little one.

Good luck with everything. I hope I was able to help somewhat...

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Erica, We have those straps too but we don't get much use out of them. No matter how I seem to strap them they still seem to 'ride up' on her eventually. I have no idea what I am doing wrong. When I asked the PT she showed me again but I still have problems with it.

Thanks for all the information. Annabelle got her bands yesterday morning. She doesn't seem to mind them. She has more control of her walker when they're on, she can turn and move more methodically. It really makes a difference to have her feet straight. So far I think they'll be helpful.

--Erica

Hi all,

I am NOT an expert, but my entire job relates to stem cells--as much of a 'miracle cure' that they might possibly be, there is much more to their functionality besides simply 'injecting them' or putting them next to tissue (i.e., white matter) to make them behave and function like normal cells. Please be wary of places that offer "stem cells" as a service/intervention. They offer fabulous potential for treatment of illnesses/disorders, but we are very far away from this being a reality at the present time.

Most sincerely,
Amy

*clarification** The major procedure involving 'stem cell transplant' is a bone marrow transplant, or HSC (hematapoetic stem cell transfer), which is used for life-threatening blood disorders and many types of cancers. As far as I know, established stem cell therapies have nothing to do with spasticity or CP.
Amy

Hi Bekki,
My son Dawson is diagnosed with cp. He is 15mo. now. We're still working on sitting and crawling. He can army crawl and sit up for a little while. He has pt twice wkly and ot once wkly. Here soon we're adding develop therapy and speech therapy. Our state(Indiana) has a organization called First Steps. It's state managed so you pay buy income. You might check to see if your state has any programs for your daughter. My advise is to be as pro active a possible. I've been through alot since he's been born and finally feeling I've got some handle on the situation, at least for the time being. There's so much I could tell you but it's a bit lengthy. I've go most of my story in my blog. You might want to check it out. Feel free to email me (shirlsue@inbox.com) or reply through this site. This is a good web site to get questions ask by regular people going through the same stuff you are or just to get out feelings and emotions out. It's been a big help to me.
shirley

Dear Dr. and others concerned, Our son was diagnosed with mild to moderate spastic diplegia (a form of CP) at 12 mos. He could only just sit up by himself at 12 mos but could stand if holding onto something. The most obvious issue was overt stiffness in his legs and his left foot looked limp and turned partially on its side much of the time. When he was born we saved his umbilical cord stem cells. He simply could not withstand too much weight on it. We started on physical therapy but were pretty depressed because his gross motor development was very slow. We reinfused his umbilical cord stem cells via IV drip when he was 18 mos. Process took 2 hrs at the hospital.

Within 3 weeks the left foot significantly straightened out as if by divine intervention. He bagan moving his body in little ways that he never did before. My wife was in mild shock. 2 mos after the infusion we started him on hyperbaric oxygen because we heard it can help. After about 40-50 hrs of HBOT the stiffness in his legs is essentially gone. It is remarkable. Granted, we also give him physical therapy, but the stiffness is really *gone*. If is now The remaining issue is balance. He still cannot stand up without holding onto something or walk without holding on. It is now about 4.5 months post infusion and about 65 hrs of HBOT (we aim to reach 80 hrs of HBOT). The progess is really undeniable.

One point of reference. Before stem cell infusion, when our son lay flat on the floor his left foot was almost flat on the floor instead of at a roughly 45 degree angle as a normal. After about 3 months post infusion, 40 hrs of HBOT, and PT, his foot now is at an angle of around 25-30 degrees. I seriously question whether physical therapy alone can do this in just 3 months.

We are now considering whether to do another autologous stem cell infusion from peripheral blood given that we heard that the HBOT our son is receiving can elevate the stem cells in his blood circulation by up to 8x.

I look forward to any questions, comments, sharing, caring!

sincerely,
A loving Dad.

Don't know if this might help you but my son, Cainen sees a pediatric rehab doctor and a neurologist. I am not sure if this is due to the severity of his conditions. At any rate, feel free to ask me anything you'd like, I will help out if I can!

It would be beneficial for your child(ren) to see a neuro Doctor. It will help you log what is going on with your child and if any new research comes available your already on track with having an idea of where they started out.

You should always think that there are medical break through everyday and you want to have as much information as you can gather.

Hi Ian,

That is fantastic news about your son! As a parent of a child with CP, I do understand your excitement regarding how your treatment is affecting your son.
We did not have the chance to preserve my daughter's cord blood given the circumstances of her birth. Kudos to you for doing so. We have also not pursued HBOT, though I have heard some good things about it. My educated guess is that if the stem cells have something to do with your son's improvement, it has to do with oxygenation of the body rather than regeneration of nerve tissue. I am not trying to be negative...however, there seem to be so many steps between an injection and repairing a brain. Still, since CP is generally caused by lack of oxygen to the brain, well...if receiving oxygen (like HBOT) helps, then maybe it makes a difference.
I'd love to hear other comments, especially if others have tried this. I'd also be interested in a timeline--meaning, does one see the effects of HBOT/infusion lessen as a child gets older? Just curious.

Thanks for reading,
Amy

Hi...hope I'm not intruding. My daughter Drew also has mild cp. She was diagnosed when she was 12 months and is now 3 1/2. We're on our third set of AFO's. She does great-she walks, runs, and even jumps now. If you didn't know that she had CP, you might not even notice. She's still really tight though, especially her ankle areas. My question is about stretching. How often do you guys stretch your little ones and how do they like it? Drew HATES stretch time. She will do anything to keep from having her legs/ankles stretched. It's a constant battle and because of it somedays I don't stretch her legs as much as they need to be stretched. I never hear anyone else talking about stretch time so I was just wondering if anyone else has to do it and how their kiddos act. Any suggestions? Thanks, Kayla

Stretching has always been a very important part of Luke's treatment plan. We do it everyday at least once, but it's rare that we get in the recommended 10-20 min. Our PT always said that as long as we get *some* stretching in each day, he's better off for it.

No, he doesn't like it, but at 7, he understands why he has to do it. We have always been quite honest and open about his disability, and have been explaining it to him since he was very small. He always says now, "I hate stretching, but I know if I don't do it, my legs will get tight really fast, and I won't be able to walk very well.

Hang in there and please feel free to email me if you'd like to talk about it further!

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Wow 10-20 minutes stretching! Annabelle is 21 months and she barely lets me get in basic stretches daily. She screams the entire time. We have her in a knee immobilizer at night to 'stretch' one hamstring at a time (we switch legs every night). I wish I could reason with her and get more stretching in.
I was wondering if it would make a difference if I stretch her after a nice warm bath?
--Erica

Thanks guys...I'm glad I'm not alone on this one. Drew is a very strong willed child (that's the nicest way to put it ) and she does not like stretching at all. She's getting older so it is easier to explain to her why we need to do it, but she still doesn't like it. We try and get in a few stretches a day, but we never get the recommened amount in either, which at times makes me feel like the worst mom ever.

She's funny too-she is beginning to understand when we tell her that she has CP. She is a toe walker if she doesn't have her braces on and if we see her up on her toes then we remind her to put her feet on the ground. She's totally into Disney princesses right now, who, if you've never noticed, usually walk or dance on their toes. Her rebuttal is "But princesses walk on their toes". What can I say to that? LOL

Kayla

Stretching after a bath is a great idea, especially if you're putting lotion on. We usually try and get in some stretches while we're applying lotion, it makes it a little easier. Kayla

Hi Kayla--what a great picture!!
Elena gets stretched at least 4x/day--in the morning before we put her AFOs on, and after bathtime at night are the 'long stretches'. She also gets stretched (a little) during diaper changes (we're in the middle of potty training, though). Her longest stretches are at night, and recently she has been fighting stretch time A LOT.

We normally sing songs while we stretch--our favorite is Yellow Submarine (the whole song), we normally sing it twice. She likes to be an 'echo' sometimes. I also try to vary our stretching environment--sometimes we do it under a 'parachute' (outer space bedsheet) and that keeps her occupied. I've also given her a harmonica to keep her busy while we stretch her.

I try not to get her too excited during stretches as the long session is normally right before bed, but HEY--whatever works, right?

Good luck!

Nia doesn't mind stretching until I start on her hamstrings. They aren't as tight as her ankles and calves but are the most uncomfortable for her to stetch. I am lucky if I get more than a few seconds out of her. She begins to wiggle her way out of it quickly. I can't believe the strength this tiny little girl has.

Drew probably fusses the most with her hamstrings as well. We call them her "butterfly" stretches. She's really tight in her hamstrings so it really does hurt if we do a huge stretch. But it has to be done...and that's what stinks.

In December, in her IFSP, we made goals for Annabelle. Her 6 month PT goal was to be able to use her walker, including transitions to and from sitting or crawling. I was crushed to think she'd be using the walker in 6 months, much less just getting proficient.
Cheers for Annabelle! She can move, turn, and get into her walker by herself. We just got a chair that she can work with--so that skill isn't ready. Yesterday the PT said that our next big goal should be to get rid of the walker! We have a lot of torso strength to go before she can balance for walking, but it's a new goal!

How much time does your little one spend on physical therapy exercises every day? I try to fit in some sitting/balancing, a few laps in the walker and a trip up stairs every day, but I always feel like I'm slacking.

--Erica

Way to go Annabelle! That's GREAT progress!

When Luke was a bit younger, we worked on PT activities all the time. We worked them into his regular everyday activities. When he would be watching a movie (his favorite activity) we would have him sit on an exercise ball. (for core strength and balance) When we were reading a book on the floor, I'd sit behind him, legs out in front and I'd lean into him to get some hamstring stretching in. When he was playing with playdough at the table, we'd have him sitting on an inflatable wedge to work on that core strength and balance again. We'd have him on his tricycle or bike (with adaptive foot straps), Standing at a low table playing with bubbles or water play we would be stretching heel cords... You name the activity and we could make it PT!

Most of the time, he didn't even realize what we were doing. It was just fun to him. The discomfort of stretching was (usually) overpowered by the activity. Once he got a bit older, he was on to us, and it became more of a struggle. Now, we just tell him it's PT, he needs to do it. He usually understands and goes ahead with it once reminded that it will help him to be able to continue walking on his own most of the time.

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