- Pregnancy
- Baby & Toddler
- Parents
- Getting Pregnant
- Baby Names
- Product Reviews
-
Registry
- Community
-
More
Want a personalized experience?
Download the free app
Special Needs
rqb25
member
when did you know your child had cp?
rqb25
member
I have a one month old who had a tramautic birth that led to a NICU stay. I have been concerned about CP since he was born. He has tight leg muscles and had leg and arms twitchin his sleep. I know its too early and all of this could be normal but I cant find any good literature on early symptoms. Does anyone have experience with this?
This discussion has been closed.
Re: when did you know your child had cp?
CP isn't usually "diagnosed" (it's not an actual diagnosis) until about 2. The brain is an amazing organ that can grow and change. In the first 2 years of life the brain changes dramatically. A babies brain as it grows can learn to compensate and create new pathways. Just because your baby has tight leg muscles at 1 month doesn't mean it will be permanent. Get into early intervention for therapy and make sure you do stretches. Repetitive motion can help the brain create new pathways.
I disagree with Toastie on when it gets diagnosed but from what I've read it is typically diagnosed before the age of 3. DS2 was diagnosed at 9mos, 3wk. CP is a clinical diagnosis. DS2 was born at 35wk, 5d via an emergency c/s and it was found that there was a clot where the umbilical cord and placenta met (everyone's thinking is that there was lack of oxygen). DS2 did not have any NICU time and stayed 1 extra day in the hospital (so 3d vs 2d).
DS2 had undiagnosed torticollis (old pedi wouldn't diagnosis it) that was treated through early intervention. As time went on I began to notice more and more things that bothered me. I remember at the 6mos well baby seriously thinking I was going to change pedis. Due to some hospital changes his pedi DID change and at the 9mos well baby I brought an entire list of things that bothered me. The new pedi did an exam, noticed some of the things I did, and referrals for ophthalmology and neurology were sent. The pediatric neurologist took a history from us and did his own exam and diagnosed CP from there. I have the early intervention PT to thank for getting the ball rolling on this. She told me to ask the new pedi (at the 9mos appt) about neurological issues.
DS2 is now almost 21mos old and has made some great strides lately. I know this is more info then you probably wanted. Feel free to PM if you have any questions.
Like Toastie said, we have been told they won't diagnose until at least 2 unless the diagnosis is needed to gain access to certain treatements (rare). Since the brain and motor function can change so much and it's not a diagnosis that indicates specific treatment we wouldn't already receive through EI, they don't want to create labels unnecessarily. They treat the child and not the diagnosis. Also keep in mind that CP is a very broad category of challenges as well from very minimally impaired to very dramatically impaired. It is definitely not a one size fits all diagnosis nor is it an indicator of how your child might be affected or what your child may be able to achieve.
I would definitely get into EI as soon as possible and learn about ways to work with your child, stretching, etc to improve their function as much as possible.
I have found this book very useful for helping with DS. https://www.amazon.com/Teaching-Children-Cerebral-Movement-Disorders/dp/1890627720/ref=pd_sim_b_1
We have seen two very good neuro's one at Pittsburgh Children's and one at Children's National Medical Center in DC.
Both gave peyton her CP diagnosis, both (obviously) prior to the of 2.
So I have to disagree that it 1. isn't a true diagnosis and 2. never happens before the ages of 2 or 3.
We received P's diagnosis at around 6 months of age, it is a truly clinical diagnosis. Just because her MRI changes/or gets better, doesn't mean she doesn't keep her diagnosis for the rest of her life.
I would start therapy as soon as possible & make an appointment for an eval at a neurologist.
We don't have a CP diagnosis, but we were in your shoes not too long ago. I just want to say that I am so sorry you are in this situation, and I know how it feels to analyze everything your newborn does looking for something. I also tried to research early symptoms, outcomes, etc. I agree with all the ladies that you should get LO an evaluation from your local early intervention. It was so helpful to have a professional work with Carson and really helped me to stop googling, and start focusing on him.
My nephew was officially diagnosed at 17 months. He had been undergoing therapy and testing for the previous 6 months. They knew something was wrong before he was one due to low tone and developmental delays. He is currently undergoing botox therapy and they hope he will be eligible for this surgery when he hits 2:
https://www.stlouischildrens.org/content/medservices/AboutSelectiveDorsalRhizotomy.htm
Will your nephew have this surgery (if he is eligible) through Dr. Parks?
Don't know. They're not allowed to submit anything to them to be considered until he turns 2 which is not for another couple of weeks.
This brings up a question I have-- can a child with low tone officially be DX'd as having CP? My child has a brain injury (PVL) which causes the tone problems, seizures, etc. but I am curious if any of his specialists are just waiting to place that DX on him until he shows that it will have lasting major effects.
I am glad in a way to hear that there are differing definitions and understandings about CP. I have felt like, "Why is this not clear? What am I not understanding?" Sounds like we all could use some clarification.
I don't know why not. Not all cases of CP have to do with children and people of stiff muscles. I think from what I've read about 70% of CP diagnoses are of the spastic kind.
This is from the National Institute of Neurological Disorders and Stroke:
The term cerebral palsy refers to any one of a number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination but don?t worsen over time. Even though cerebral palsy affects muscle movement, it isn?t caused by problems in the muscles or nerves. It is caused by abnormalities in parts of the brain that control muscle movements. The majority of children with cerebral palsy are born with it, although it may not be detected until months or years later. The early signs of cerebral palsy usually appear before a child reaches 3 years of age. The most common are a lack of muscle coordination when performing voluntary movements (ataxia); stiff or tight muscles and exaggerated reflexes (spasticity); walking with one foot or leg dragging; walking on the toes, a crouched gait, or a ?scissored? gait; and muscle tone that is either too stiff or too floppy.
ETA: From what it looks like with the responses, it kind of seems like the age of diagnosis may depend on the physicians/neurologists involved and when they typically diagnosis. That is the way I am interpreting the responses at least.