CP board?
JoJoGee
member
Hello Everyone,
There is some talk that my daughter may have CP. She presents some of the symptoms (left hand dominance, tone issues on her right side, stability and postural issues, developmental delays) and risk factors (micro-preemie, received steroids). However, her symptoms present intermittently. Her therapists and doctors both agree that there is a difference in the way she utilizes her left side compared to her right side, but no one is willing to diagnose CP as of yet. She will be going in for an MRI in March, when she undergoes several other tests. Then, she'll be evaluated by the Neurologist at the High risk clinic at the end of March. But, the Neo's at the HIgh Risk clinic told me that they normally do not diagnose CP until 2 years of age. So, this may mean we have to wait another year to get a diagnosis. In the meantime, I would like to lurk on a few CP discussion boards and gather information. Can anyone recommend a CP board?
TIA!
Re: CP board?
DS2 (2yr) has CP. CP is usually diagnosed by 3yr old. Some doctors will diagnose it early, as in our case (diagnosed at 9mos, 3wk, 3d) and some like to wait. DS2 had a MRI that showed PVL (periventricular leukomalacia - may be spelled wrong). I will caution you that people with CP CAN have a completely normal MRI. The MRI more supports the diagnosis that makes the diagnosis if that makes sense. A CP diagnosis is a clinical diagnosis only. There is no test you can take that will say yes so and so has it or they don't.
The things I was noticing that I brought into the 9mos well baby appointment were: eyes (both) would intermittently cross inward, right handed dominance, zero interest in sitting or crawling, tight legs (like I had to physically bend one leg, which always caused the other leg to bend, during diaper changes), hands (especially the left) fisted, his feet were almost always flexed (vs pointed down or in a relaxed position), and his feet would "quiver" (found out this is called clonis or clonus). The early intervention PT is the one who told me to ask the pediatrician about a possible neurological issue. DS2 entered early intervention for undiagnosed torticollis (undiagnosed because the original pedi would not diagnosis but myself and EI thought he had it).
DS2 was diagnosed at St. Louis Children's Hospital by a neurologist. As for discussion boards, I belong to a yahoo group called cerebralpalsymoms but I usually lurk. As for the no one diagnosing, depending on the therapist they are not allowed to make diagnoses or they may prefer a specialist like a neuro to actually make the diagnosis.
If you have any questions about anything let me know. There are a couple of other people on this board who have children with CP too.
Peyton had a partial placental abruption in-utero at around 22weeks or so. Ditto what max&ruby said, the MRI is not a know all diagnostic tool with CP. Some kids who are highly functional will have horrible MRI's while others who are very limited will have good MRI's. Our neuro explained it to me, as it can show whether or not you have 5 fingers but not if you can move them all.
That being said, we got our clinical dx around 6 months of age, at Children's hospital of Pittsburgh, and we moved and when she was 11 months old we saw another dr at children's national in DC who agreed with the dx.
We started therapy when she was 2 months old for other things, so I believe that's been a big help in what she's able to do. Her last MRI was completely clean, the brain can kind of grow over those bad areas and cover it with new brain.
She is very left side oriented, writes with her left side, uses her left leg for weight bearing to go up/down steps, etc. Most of her CP issues now would fall under 'atypical behavior' for a child. A lot of ppl not medically trained wouldn't pick up on it.
I don't go to a CP board, so I can't give you advise there, I just hang out here.
Good luck and keep us updated!
Most dr's won't diagnose CP until 2 because in the first 2 years of life the brain doubles in size. It's the only time in life this will happen and some of the damage or issues than a newborn/infant brain have can be repaired and/or corrected as the brain grows.
A diagnosis of CP doesn't mean much in terms of an actual diagnosis. There is no treatment plan (outside of therapy which you are already doing). Basically, it will be managing the side effects such as hand preference, tone management, etc.
DS does not have CP but presents like a child with it. He has a genetic mutation and has severe hypertonia, small optic nerves, and is tighter on the right side. However, he does MORE with his right side that requires greater control such as pushing up to sit, rolling to a crawl. But puts crackers in his mouth with his left hand.
I don't have a CP board reccomendation and the biggest thing to remember with CP is that there is no predictor of the future. My son has a perfectly normal MRI yet he will have an intellectual and physical disability because of his genetic issues. A child with what looks like pretty significant damage can end up functioning perfectly typical or just slightly varied.
My son was deprived of oxygen in utero also (unknown reason). He had seizures, IVH grade 2 and white matter brain damage. He had abnormal EEGs until about 7 months. I hope your LO does well. Ditto PP who said that MRI's don't really mean much, how the baby acts is the real indicator. Hang in there.
Babycenter has a CP board. Not too active but for sure will get a response or two within the day. Lots of good back reading while you wait for a reply:-)
Thanks everyone for all the advice and information. I love reading your stories. I did know that the MRI wasn't the be all, end all for diagnosing CP. My daughters initial cranial ultrasound, which was performed a week after her birth, didn't show any IVH or abnormalitites. So, I don't really expect the MRI to show much, but I am comforted by knowing they are going to look.
I know a CP diagnosis won't really change where we are when it comes to my daughter's therapies (she already recieves PT and OT every week, and we are waiting on speech to schedule us), but somehow, I feel like a diagnosis would make me feel better. I spend every waking moment I am with her working with her on her therapies and exercises, but a part of me still feels like I have failed her. Sometimes I wonder "Did I hold her too much as a newborn?" "Do I not work with her enough when it comes to her therapies?" "Maybe if I was a better mother she wouldn't be struggling like she is." If we had a CP diagnosis, I feel like I could finally let go of all that blame. Oh geeze, I think I am going crazy sometimes.
You're not going crazy, that's completely normal. Even Peyton's original pedi thought she was "completely fine." We moved when she was 9 months old, sometimes I want to send her now 3 inch medical records with an "I told you so!" sticker on the cover.
To have how you are feeling validated by someone else, is part of the healing process.
I honestly can't imagine waiting until Peyton was 2 to get her dx. I would have lost it. I *know* that the brain can grow, etc. But, knowing that your child has CP is important in terms of vision and speech as well. Most of us here feel a huge sense of relief when we finally get a diagnosis and that is completely normal.
Hugs.
I can tell you that I literally almost laughed out loud when they threw CP out there. My MIL was with me and I think she was stunned. I knew something was wrong but getting the initial diagnosis devastated me in a way. I'm a year and a half or so out from getting the diagnosis so it doesn't bother me anymore but I do still play the "what if" game in my head and probably always will. I also had a similar issue in that DS2's original pediatrician thought he was just fine. So much so that he actually put it into DS2's medical records. That pisses me off and I would love nothing more then to see him and tell him he was wrong and that I was right. he he he All that matters is that you get the services you need and that people support you. :-)