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Mild CP, seeing a neuro...


Jennifer132
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Hi all! I posted about my dd2 a while back, saying I was considering taking her to a specialist. We finally have an appointment to see a pediatric neuro in May. If my dd does have Cerebral Palsy, it's pretty mild.

 

So what I'm wondering about is this: my dd had alot of trouble learning to walk, and only did so with orthotics at 22 months. At that point she had right side weakness and dragged that leg. She turned her feet outward as well. With therapy we manage to make the dragging and out toeing basically disappear. Then she started toe walking, at which point she got different braces to stretch her heel cords at night and provide support during the day. With the night stretching we are seeing very little toe walking now. Last couple of days I find that the issues with her gait are alot better, and now I'm second guessing myself on seeing a neuro....is it possible to have CP and have such a marked improvement in walking? She has been in therapy over a year.

 

This isn't to say she doesn't have any issues; she has major speech issues that therapy isn't helping at all because it is due to muscle weakness. She does have mild feeding problems like choking and drooling out food. She has some coordination issues with falling alot and can't do normal 2 year old things like the stairs or jumping or walking backward. And she does have an abnormal gait, it's just so mild recently since increasing her stretching I'm worried the doctor will think I'm just overly worried and not take me seriously. My instinct tells me something isn't quite right though. My ped did see my point and made the referral, but he said her walking looked pretty good (three steps across the exam room, so not sure how he could tell!).

 

So I guess this was my long winded way of asking if walking and gait are the main criteria for a CP diagnosis? Will the doctor take into account past struggles that have since been achieved? And anything else you can tell me about CP or about what the neuro appointment will be like, I am open to hearing.

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There is a list of symptoms for a cp dx - some have to be present, others weigh into dx. I don't have the list with me right now and don't know if any websites have them listed. Things like: MRI showing brain issue, retained reflexes, leg length difference, difference in flexibility from one side to another (can't remember the name of the name, behind knee, possibly), muscle weakness/differences between limbs, clonus, etc.

 

We didn't get a dx until very late. DS started walking insanely early, but was very uncoordinated with quick, jerky motions. His gait and endurance have gone down hill with puberty. We used to be able to walk all day (at the zoo, fair, etc) but now have to sit every hour for him to rest.

 

Based on my (limited) experience, it is very valuable to have the neuro appointment and get the dx. Our first appointments lasted about two hours, while neuro put DS through numerous activities. (Watched him crawl, walk slow, walk fast, run, chase balls, watched him use his hands, etc)

 

Best wishes. Feel free to pm me.

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Yes, it's very possible to have CP and show significant improvement. I would definitely keep the neuro appt. They may want to do an MRI, but it can only confirm a diagnosis. A clear MRI doesn't mean it's not CP. My DD has mild CP, she was very mild as a toddler and nobody could believe it. She walked at 15mos- just a week after her twin who doesn't have CP- and met all her physical milestones on time. She could run and jump and kept up with all the other kids easily. The reason you want to see the neuro is because if she does have CP, and especially if it is spastic, then she will decline and have more difficulties as she gets older. The doctors will tell you that it is not progressive but it is just semantics. The damage to the brain won't get worse, but the effects of that on the body will cause increasing problems as a person ages. The good news is that if she is treated early and followed closely, then you can avoid some problems. If you see the neuro and he says she has spastic CP, please PM me. I wish we had been able to treat our daughter when she was 2 rather than wait until she was older.

 

For people with mild CP, much of the damage won't happen until the person is older and has been walking (or not) for a long period of time. What you see at 2 is not what you'll see at 12.

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I wanted to add:

I would recommend reading a book or two on the subject and familiarize yourself with the vocabulary - different muscle tones, different areas of brain that can be affected, etc.

Cp is a wide spectrum, with many types/presentations.

My son has an under developed cerebellum with fluctuating muscle tone, one of the rarest forms. Our son sailed through his first round of evaluations at age two, so - for years - we had all these seemingly random odd issues. Our pediatricians never pieced the issues together. As much as we researched it - everything we read said a child had to miss major developmental milestones, walk late, etc. We have since been told that our DS meeting milestones way too early was a red flag. (He has high tone in the "perfect" places so he held head up early, walked early.)

Just saying that because I would certainly go ahead with the neuro appointment. They will do a complete medical history and look at the complete picture, not just how your child is walking now.

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Sorry, I forgot to answer your other questions. My daughter was diagnosed by an ortho doctor and not a neuro. It went so fast that I actually missed it! I had to take my DS to preschool and knew I'd be about 15min late so I had my DH take her. By the time I arrived, DH called to tell me they were done! Seriously- I was so angry and couldn't believe he could be so sure so quickly. DH said he did a quick physical exam, looked over her chart, saw her walk, and that was it. I don't even think he did an x-ray before telling DH it was cp. Later we saw a neuro who confirmed it w/MRI. I would not have believed it without the MRI results.The diagnosis was actually made not based on her gait but on her reflexes. The neuro spent more time with her because I think he wanted a better idea of how to treat her, not because he was diagnosing her. He spent just as much time or more talking to us about how to proceed. At the time, DD had some tightness in her ankle and she was a little on her toes sometimes on one foot when walking. That's it. She had some speech and feeding issues, but her identical non-cp twin also had the same or worse problems in those areas so we didn't think it was related to CP in her case.

 

The doctor will likely want to test her hand strength to see if it is equal in both sides. He'll check her balance and maybe try to get her to stand on one foot or walk a line. He'll probably order x-rays to rule out any hip problems. They will check her reflexes and see if there's a difference in sensation on one side of the body. They'll ask about her birth history and early milestones, and they will definitely consider the feeding and speech issues.

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Cp can be a weird thing.  The positive though is that it is a MEDICAL diagnosis and can qualify her for OT, PT, Speech and other therapies.

 

I have 3 with various CP.  My son just has a spastic left arm.  It is MUCH better than it used to be, hardly noticeable at all anymore.

 

My 17dd was a late walker at 18 month and no coordinated.  She was the floppy baby with no tone, eating issues, reflux, etc.  Now at 17 she is still not super coordinated but rides a horse and does low level jumping and barrel racing (just fun shows) and has learned to cross country ski, etc.

 

I don't think the neurologist will dismiss you as they can key into this stuff quickly even when other people don't see an issue.

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Absolutely you are not overreacting. Please keep the appt and I hope you learn lots from the neuro. Our neuro appt was what finally got us a brain MRI and then a CP dx from a developmental pediatrician. My daughter has mild, almost unnoticeable CP to the average observer, but it affects her life profoundly.

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Continuing... at age 2 we didn't know anything was wrong. Now at almost seven we are dealing with bowel and bladder management for incontinence, eating difficulties, motor delays, orthotics for deteriorating foot muscles, etc. If your child has even mild CP, you will want to know in order to be able to help her as best you can.

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