Mild CP questions and intro post

Hi there, i am sorry this is so long. I have 17 month old triplets born at 34 weeks, which is considered pretty good for triplets. They had an uneventful birth and short nicu stay. Normal apgars, no evidence of anoxia. At around 6 months we realized that baby C was starting to fall behind his brothers and that he had very stiff legs. in the months that followed he has made progress every month , always doing something he couldn't do before, though he has a global delay of about 5 months. Now at 17 months he crawls, cruises, an pulls up to stand but does not walk or stand independently and his movement is awkward due to stiffness. He receives pt. speech/feeding and special Ed services. His pt acknowledges the stiffness but thinks he will grow out of it.

We see a dev ped every 4 months. They had always been encouraging but at the last meeting seemed more non committal in their assurance that he was fine. They said the delay was still "mild", was definitely not an indicator of asd in his case, but when I asked about cp they would only say "we can't say until he is two." They suggested bring him to an orthopedist to see if he recommended leg braces. I could not get an appt for a while and at the suggestion of our special Ed teacher I took him to a physiatrist in the meantime who was pretty frank that this coul in fact be cp but that he might grow out of it. He rec'd braces and more aggressive pt which we are doing.

I am very concerned and I am also frustrated that there is no consensus - his reg ped and pt says he's fine. The dev ped won't say anything, but implies it. The physiatrist said maybe cp but at least is giving us something we can do in the meantime to help him.

For those with experience with mild cp - Is this lack of consensus normal? Who have you found most helpful in guiding you- your regular ped, pt, physiatrist, neuro etc? Also I don't know much about the field of physiatry and am not sure how much weight i should give to her opinion.

It seems the diagnosis is so subjective that I wonder how much stock to even put in it :(

Thanks for reading this long missive!

Re: Mild CP questions and intro post

Don't have personal experience (although I have some friends with CP), but I would look into going the neurologist route..........Maybe start with Cohen's children's hospital or a similar well regarded institution.

I know there can be a wait sometimes though which is the only major downside.

Re: Mild CP questions and intro post

My ds has mild cp. our neurologist gave us that diagnosis at 1 year old. Cp is when there is a brain injury so usually an MRI can help diagnose this.

We use dr. Semel at st Charles as our physiatrist and love her! Our neurologist is dr. Engel at ny presbyterian/Cornell in NYC.

Fm me with any questions.

Mild CP questions and intro post

See a neuro and get a MRI. It can be diagnosed before 2 so I would never see the dr that told you that again.

You have to be your own advocate and push for the tests.

Re: Mild CP questions and intro post

We are currently going through all of the testing for this at 1 year old. I would try seeking another opinion. It was told to me that it may be a possibility, but as they run the tests, I was under the impression that I would get an answer.

Re: Mild CP questions and intro post

Re: Mild CP questions and intro post

My 4 yr old DD has mild CP. She is a twin. We noticed her increased muscle tone as early as the NICU as she was able to hold her neck up at birth ( 34 weeks gestation). As she got older we noticed the tone for sure, she had super human strength for a baby, she had some tremors and as she aged we saw the delays begin to show and we too her to see a developmental pediatrician and she said mild CP, we got a second opinion and he said same thing but wanted an MRI. We did not get the MRI b/c we didn't care what it would show and the TREATMENT would have been the same regardless. The diagnosis has not done much for us. She gets services based on levels and needs and development. I did not want the risks of the MRI for it to even possibly show nothing, , mild CP sometimes doesn't even show up on MRI's.

I do not think you need to worry about the label. It is just that. It will not increase or decrease the care given. Mild CP's delays can be outgrown...we are hopeful for my DD that will be the case, she has come far.

She gets Speech, p/t and o/t now in pre K. She has sensory issues and possible ADHD as well.

A neurologist might be helpful to you. The diagnosis is subjective indeed, and that is because thankfully the cases we have are mild. Focus on the services.

Mild CP questions and intro post

We are in same position as you are now. My twins just turned 2 on Oct 28. We had MRI which came up normal. I suggest you have one. (We see a neuro on regular basis) They have speculated mild CP of the right foot. We have no formal diagnosis, nor do we want one. The only reason why you need one is to get services. If you already get them..so be it. Find yourself a GOOD P/T. We believe solely in ours. Our orthopedist said NO BRACES. Our P/T with EI wanted them for our son (twin B) We have had them since he started to learn to stand. She taught him to walk with a child size walker. She was not sure he would walk indepently. He is now. He started at 20 months & surprised us all. He has a slight gait. The left foot turns in for balance & right foot is the issue. The orthopedist said has tight heel cords. He is HIGHLY INTELLIGENT & fine in all other areas. Contact me if you want to talk further. I am in east meadow. I had my boys 38 weeks & he weighed over 7lbs as well as the other twin

He had low tone trunk & legs high tone.

Message edited 11/24/2013 9:29:55 PM.

Re: Mild CP questions and intro post

Thank you all so, so much for sharing your stories. We brought DS to one of the supposed best ped orthos at Columbia who heads their CP center and he diagnosed him with mild spastic diplegia. It was hard to hear but I know that CP is a spectrum disorder and they said that his prognosis for ambulation is excellent since he is already cruising.

I have decided against an MRI at this point bc he would have to be sedated. He had strabismus surgery in August and poor thing has been through so much with all these doctors and therapists. Maybe when he is older. But we have to see a neuro anyway to "round out the team" so to speak.

Thank you again. I am just so surprised to be dealing with this diagnosis with a 34 weeker who weighed 5.7. But your Stories show that it can happen.

I am sure I will be checking in again for advice etc.

Thanks!

Eta- do you ver stop wondering what happened or how this happened? I keep thinking If I had made it farther along maybe it wouldn't have, but I guess I'll never know.

Also want to add for anyone in need of resources I found my experience at the Weinberg cp center at Columbia to be really helpful.

Message edited 11/24/2013 9:52:56 PM.

Re: Mild CP questions and intro post