CP

lemen99

Can anyone explain to me - how is CP diagnosed? 

I can't help but wonder if Andrew has some (mild?) form.  Maybe it doesn't even matter if it is diagnosed (if he even has it) if we are addressing his various issues.

I wonder because he had a grade 2, 4 IVH at birth.  It seems like lately various issues have come to light - speech issues (not a true delay we're told, since he isn't progressing in a normal pattern, but he's way behind for whatever reason and finally catching on), high and low areas of tone (he is getting orthotics in a couple of weeks, we were fitted this week), reflux, GI problems, difficulty eating (has issues chewing, swallowing, and had a swallowing disorder as an infant where he had a delayed swallow and deep penetration of his airway), and significant gross motor delay (measuring 16 months and he's 27 1/2 months actual, 24 1/2 adjusted) and a swaggery walk.

We are addressing all of these so maybe if there is some overall "cause" it doesn't really make any difference.  I suspect that all of these functions are affected by the neurological system, and we know that he had brain damage at birth. 

I'm not stressed about this really, but more curious. 

 

Rachel&Joe

I think it's not typically diagnosed until 2-3 years of age.  And even then, no one can really tell you your child's potential.  Have you talked to any of his therapists about it?  If there are any concerns about CP, I would think that they would tell you right away.  And from what I know about CP, it seems that if he does have it, it's pretty mild since his symptoms seems more like glitches vs. major things (walking with a limp, inability to talk or swallow, etc.  I researched CP alot during Stella's first year since she was really stiff as an infant & also had a swallowing issue.

MaxandRuby

DS2 (18mos) has CP and was diagnosed at just shy of 10mos.  CP is diagnosed clinically - usually a neurological test, physical exam, and history.  CP is a movement and balance disorder and there are a variety of types and can vary from mild to severe.  We believe DS2 is mild to moderate.  He gets OT, PT, and ST; although for ST he has usually been on the border of delayed/very low end of average.  At DS2's 9mos well baby appt (although I had concerns prior to that), I brought up the following things (from memory so may not be a full list): crossing his eyes, both of them intermittently (this is not normal after 4 or 6mos of age); right side dominant as in and still does barely use his left side but left arm specifically (hand dominance is not usually determined until after 12mos but usually 2yr); at 9mos old he could not sit up on his own nor did it seem like the thought of sitting every crossed his mind (at 18mos he still is not independently sitting); he was/is fairly constipated (he gets 2.5tsp of Miralax daily); grasping problems with his left hand (still has these issues); legs seemed stiff (I was and still do on occasion have to physical bend his legs during a diaper change).  I know there was more but I can't think of them now.

DS2 was born at 35wk, 5d via an emergency c/s due to lack of movement (he failed all monitoring tests).  I do know that DS2 scissors when he walks especially if his trunk is not supported (he cannot walk on his own or cruise yet).  He also walks on his tip toes which is common with CP but he does have the ability to go all the way down on his feet.  Feel free to PM me if you have other questions or want to know more.  Before I forget, they did do a MRI which showed brain damage (moderate PVL and no brain bleeds) and some bloodwork which all but one test came back normal.  He may have some small swallowing issues that we are going to have looked at in the near future - I'm just waiting for the authorization to come through.

Hmmm, I added some edit notes but they are posting for some reason.  Here are the additional things I posted: therapists are not allowed to diagnose CP but DS2's early intervention PT was the one who got the ball rolling by having me ask the pedi if he felt DS2's issues could be neurological related. The pedi then submitted referrals for a pediatric neurologist, a pediatric ophthalmologist, and a hearing test (there were concerns about hearing).

Also, if your child has CP then it shouldn't get worse since it is not a progressive disorder.  It may look like it gets worse as the muscles may get tighter and cause contractures or something if therapies aren't followed through on like stretching.

MaxandRuby

This may be too much information but I did just run across this as I was doing my own research on CP.

https://cshcn.org/sites/default/files/webfm/file/CriticalElementsofCare-CerebralPalsy.pdf

 

lemen99

Thanks so much ladies!

 This is interesting:  therapists are not allowed to diagnose CP but DS2's early intervention PT was the one who got the ball rolling by having me ask the pedi if he felt DS2's issues could be neurological related. The pedi then submitted referrals for a pediatric neurologist,

 

His therapists (one in particular) really has alluded to this a few times. 

I mean, we know that there are neuro issues going on - he is seen by a neurodevelopmental dr and we know that he has some brain damage and had cyst and some dead tissue where the bleeds were.  We did not specifically ask the doctor about CP or a diagnosis, but I was just wondering.  I'm not sure what the "criteria" is.  It seems like with all of his issues combined, and known brain damage, it makes sense, but I don't know if there is some other criteria or if a diagnosis is important!

I'll def have to bring it up when we go back in about 5 months!

laragabrielle

I rarely post here, but thought I'd add my two cents.  My little one (9.5 months adjusted, 11 months actual) has been getting PT for several months because of a slightly weaker left side as well as some overall tone issues.  I googled like crazy and shed many tears initially, because it seemed that asymmetry of tone and movement could only be attributable to CP.  Since she had a relatively run-of-the-mill Special Care Nursery experience and was never diagnosed with a brain bleed, it took an adjustment to be told that she probably *had* experienced some sort of insult on the right side of her brain.  Now, several months later, I care far less about the label (and it seems like your attitude is really healthy on this front).  Both the physiatrist and developmental pediatrician we saw explained that, since the "treatment" (PT) was the same, it was not necessary to sedate my daughter and arrange an MRI right now. 

I have come to learn that, while my little one may technically have CP (brain insult plus an effect thereof on movement), what matters is her functionality, not what an MRI would show (though obviously testing may be necessary for other purposes down the line).  Our physiatrist said over and over that she was hesitant to diagnose because she does not see my daughter's asymmetry having a real impact on my daughter's life.  She uses her left hand, just slightly less. As previous posters mentioned, CP is not progressive, so even if Andrew technically does have it (and remember, it's such an umbrella term, covering such a range of movement issues), it sounds as though it will definitely be manageable.

 

MaxandRuby

I can tell you that while the pediatrician submitted the necessary referrals for DS2, he did not diagnose CP....the pediatric neurologist did when we saw him.  Once we got the diagnosis, I called the pediatrician and asked him his thoughts regarding it and he said that he did feel that CP was what he had but he wanted someone more specialized to do the actual diagnosis.  I'm kind of paraphrasing there and is my interpretation of that conversation. 

lemen99

Thanks!  I think that even if he has it, we are doing everything we would be doing, and I question if there's any benefit to even putting any energy thinking about this.

 Selfishly, the only advantage I can think of, is maybe it would get some family members off my back and reduce explanations for so many things people are starting to notice...

 I didn't know if there were any other advantages of knowing or having a diagnosis!  

 

MaxandRuby

Personally I would rather know a diagnosis if there was one and I like that my son is being followed by a couple of specialists.  He has various therapies (speech, occupational, physical, and feeding) through early intervention services and through private insurance.For me knowing has also meant having an idea of what may happen in the future, helps me know that DS2 will be on an IEP when he starts school (vs the IFSP through early intervention), helps me to be realistic about goals for DS2, etc.

We are a military family and the diagnosis meant we were required to enroll DS2 into a specific program.  That program is on DH's file and means that the Army will do what they can to make sure we are near a base that can provide the medical needs my son requires. 

Glad to hear that you are getting services for your LO and good luck on the decision of getting a diagnosis or not!  It sounds like you are doing everything you need too already.

FYI: You may want to look into insurance for your LO.  We got life insurance for our kids (DS1 and DS2) before DS2 was diagnosed.  I found out after the fact that his diagnosis makes him uninsurable...meaning, he will be denied if he tries to apply later for insurance.  Thankfully since he had a policy prior to diagnosis, he can use the OPIs through the insurance to increase the amount that covers him.

lemen99

MaxandRuby:

Personally I would rather know a diagnosis if there was one and I like that my son is being followed by a couple of specialists.  He has various therapies (speech, occupational, physical, and feeding) through early intervention services and through private insurance.For me knowing has also meant having an idea of what may happen in the future, helps me know that DS2 will be on an IEP when he starts school (vs the IFSP through early intervention), helps me to be realistic about goals for DS2, etc.

We are a military family and the diagnosis meant we were required to enroll DS2 into a specific program.  That program is on DH's file and means that the Army will do what they can to make sure we are near a base that can provide the medical needs my son requires. 

Glad to hear that you are getting services for your LO and good luck on the decision of getting a diagnosis or not!  It sounds like you are doing everything you need too already.

FYI: You may want to look into insurance for your LO.  We got life insurance for our kids (DS1 and DS2) before DS2 was diagnosed.  I found out after the fact that his diagnosis makes him uninsurable...meaning, he will be denied if he tries to apply later for insurance.  Thankfully since he had a policy prior to diagnosis, he can use the OPIs through the insurance to increase the amount that covers him.

 

I was wondering about this.