possible new mild cerebral palsy diagnosis 4yr old

[hollyanne1338]

I have a 4 1/2 girl that was born emerg c section, no milestone issues nothing noted until we started to treat her toe walking. Casting was worthless and then we were referred to a rehab doc. I watched with horror (Im a nurse by the way) as she displayed abnormal reflexes on her left side that were never noticed before. The doc said she very well could have "mild" CP though she didnt really want to diagnose her as she didnt want her "labeled"? we are awaiting some clotting lab results to see if she has problems in that area( my half sister does) and has been referred for orthotics and to OT for "brushing". We went there yesterday and have been "brushing" her feet for a day so far.
Besides the toe walking and some mild behavioral issues only noticed here at home ( preschool/daycare hhave never said anything about any of these things) we never even would have thought of this diagnosis.
The doc says its not necessary to follow up with her or anyone else unless the labwork is screwed up and even then there is no treatment for kids with the abnormal clotting issues. (?)
I asked if she should get tutoring or go see a developmental pediatrician or someone I dont know and she said no, just wait and see what happens to her next year when she starts school ( Im holding her for kindergarten until she is 6).
Any thoughts? Im wondering if we should really see someone else (who?) Her final words were basically "Ive never met an adult toe walker that didnt have CP or autism but dont worry tons of people have mild CP and are fine"

[Annasmom327]

I feel like I will be in the same boat.  My daughter (now seven months)  seems to have mild cp (involuntary movements of the arms and legs).  She has no delays as of now, she can sit on her own, crawl, pull herself to a standing position.  My fear is that when she gets older she may have difficulties doing some things. I spoke to her doc and she doesn't feel like she should run any test yet because like I said she has no delays as of now.  

I have never seem (at least not to my knowledge) anyone with CP.  My thoughts are however, if our children can do things on their own even if they need a little help than they will be fine.  I refuse to believe that since my daughter is doing all those things now (many of which she was doing before other babies her age), that she will have extreme difficulties as she gets older.  

If you live in the states, you can call Early Intervention Services even though your daughter is 4 they can refer you to a program that deals with children your daughters age.  Even if she needs a little bit of therapy I truly believe that your daughter will be fine.  Be greatful that she can walk, talk, sit and do many things on her own.  That is definetly a good sign because some children with CP can be severly delayed.    

[hollyanne1338]

Well, besides the toe walking we never noticed anything, except she did have some ptosis of her left eye and now I see that th left sided deficits were all related. The physical medicine doctor said not to "label her" now and just see how it goes in kindergarten which she isnt even attending for 1 1/2 yrs. Toe walking to me isnt that big of a deal and that has been the only reason she has needed PT or OT. Tomorrow she goes to an orthotics place to have some sort of inserts made to be placed in her tennis shoes to help her walk more "normal". Shes very interested in writing, numbers, coloring etc and seems to be ok so far. Will see how it goes since the doc says theres not much to do at this point. She would not qualify I wouldnt think for any other services since she has no "official diagnosis" and I cant see at this point what other early interventions she culd need. She doesnt need speech hearing vision any of that.

[Annasmom327]

Your right about that because I called to have my daughter evaluated when she was 4 months old by early intervention and she did not qualify because there was no official diagnosis and they said that she was advanced for her age.  Unfortunately, all we can do now is "wait and see" how they develop.   I sincerely hope that all goes well with you and your daughter and you will be in my prayers.

[wantanswers2day]

Your daughter sounds like she is doing fabulous, however, to be on the safe side, I would get a neurology consult.  The abnormal movements may be nothing, or a very mild CP, but it could be related to some other things too.  (not to scare you...and Im not saying this is even remotely close to the case with your daughter.)  But just "in case" I would get a referral to a neurologist.  If nothing else, at least you know you are taking care of any "what if's" just in case she does end up needing early intervention.

[mommyofnathan]

Hi,

I have been on the CP boat for a while now.  My son is severely affected.  Truth is, doctors know all about neurology and diseases and deformities and all that, but they are yet to figure out how to fix it.  She seems to be doing fine and although CP is and always will be a devestating condition in severe cases, she should be able to live a full independant life since it is only toe walking she shows.  The brushing really helps but only for tactile oversensitivity/undersensitivity.  Unless she refuses to walk on her feet because she cannot tolerate things on the soles of her feet, the brushing won't do much good.  I would suggest you see a neuro-physio to try and help her to place her heels on the ground in order to walk with a "normal" gait.  Other than that, there is not much else you can do.  Don't label her, I agree and only treat symptoms/attempt to treat them as they arise.  Good luck  

[Swampfoxer]

Studies are being run all over the US and Overseas on Exercise for kids with CP and other developmental disabilities.  They are finding a connection in keeping them moving and keeping the spasticity at bay at this point.  I know from a small study continuing to be done by Physical Therapists in certain places that these kids need true reciprocal, full range of motion activity.  (That means as in crawling activity where the right hand and left leg move and then the left hand and right leg)  A tricycle or bicycle only works the lower half of the body.  Some assisted machines do not really do reciprocal activity properly and do not do full range of motion to it's fullest.  There are only 2 that I've seen that really do the work right.  Both are costly but you need to look at their studies before you purchase... not just their advertising.  Then look at them in person at EXPOs for the people with disabilities.  Get on them and try them for yourself.  

If your children are on MedWaiver programs and insurance, they will sometimes cover these machines as medically necessary.  You have to get a Dr behind you on this.  Sometimes a Physiatrist is more open minded and helpful.

Most PTs and Drs trained in the US are very slow to admit that they will not look at things "outside the box" that the Medical Communities overseas will try sooner.  They fear admitting that something outside of themselves will help others that really need constant help.

[mum2beagain]

My son toe walks on his right because of his mild CP.
I don't understand why the doctor doesn't want her "labeled", CP is nothing to be ashamed of and with a "label" of CP she will at least be monitored by the relevant specialists who will be able to make sure that her toe walking doesn't develop into painful shortened hamstrings, a tight heel cord or flat feet (something that my son has to deal with).

[dramatically_correct]

We are in the process of a receiving a CP (spastic diplegia) diagnosis for the first time for a seven year old girl. Deep in my heart I always knew that something was different - she has always been a toe walker but the family doc said that she would outgrow it. She has  been active in ballet, gymnastics, soccer, t-ball - you name it. While slower than the other kids, she has always enjoyed activity. Our problems started when she had a tremendous growth spurt at the end of last summer. All of the sudden, my toe walker was hunched over and falling all the time. Our NEW pediatrician immediately called it spastic diplegia and sent us to a neurologist for confirmation. It was very difficult for me as well to see my daughter fail all sorts of reflex test - I don't know if they were ever done before to be honest with you - and I feel like a terrible, horrible parent for it.

Our neuro. said that CP is a diagnosis that comes only after everything else has been ruled out. For us, everything has come back negative so far, including tests for hereditary spastic paraplegia. The neuro. referred us to a PT that is amazing and was able to explain to us why everything tightened up on us so quickly. She loved the fact that our daughter has been so active and that has what has probably been a key factor in keeping the spasticity at bay. When she grew so much (2 1/2 inches in 3 months) the bone grew so much faster than the tendons that the activities she is in still could not keep up. The PT said that our symptoms are so incredibly mild that a non-trained person might not even notice them.

We do 40 minutes of PT twice a day and are starting braces to help her stay off of her toes - it is a habit developed over the course of 6 years and extremely difficult to break. In a way, I am glad that we are just now getting a dx because I don't know if I would have tried to limit her in any way. Right now, she knows she is slower, but she knows that she can do anything. I encourage all of you who are newly diagnosed to keep your child active - I believe it the one thing that has made a difference for us.