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tarajayne
member
Cerebral palsy anyone?
tarajayne
member
My DS got diagnosed today. Kind of feels like we have had a bomb dropped on us though now when I am reading the info it really does fit his issues.
Just wondering if there are other moms out there. I would love to hear your stories.
This discussion has been closed.
Re: Cerebral palsy anyone?
Hi,
My DD has CP as the result of her sever prematurity (born at 26w 2d). I suspected she had CP this time last year, but it took until June to confirm the diagnosis. She will be 2 in January and is just learning how to sit. If you have done your research then you know that every child with CP is different. CP ranges in severity, and can affect every child differently, so my daughters difficulties may not mirror others. However, I am happy to answer any questions you may have.
I am glad to know there are other moms here to talk to! I have done some research, not a lot since we just found out but I do know there is a wide range.
He was 36 weeks, everything seemed normal, but around 4 months or so we started noticing he was behind his brother. We noticed torticolis, plagio cephaly (I am probably butchering these spellings...), and crossed eyes. His pediatrician wanted us to wait until 6 months to see if he grew out of them. Obviously he didn't, so he went to therapy for the tort (did show some improvement) but during the course of therapy we noticed he wasn't using his left arm/hand hardly at all. This was at about 5 1/2 months old or so. (He had just began to reach for things at this age). The therapist gave us some streches to do and said mention it to the doc at the next appt (they discharged him from PT after 4 weeks). So we were in a few weeks ago because he had a nasty virus, and we mentioned it then. They scheduled and MRi and set us up with the neurologist which we just saw yesterday. (In between these we did get to see the opthamologist, somewhere in the month we were waiting for that appt his left eye started to have random spasm). Eye doc said he is farsighted and he has glasses on order, but wants to see the mri results to make sure he doesn't have any tumors on those nerves.
So with all of these things and everything the neuro observed from him, that's what she says. She says that he most likely had a stroke in utero due to lower blood flow to his placenta (his brother was 1 lb and 3 oz bigger than him at birth). But the mri and blood work will give us more info to make sure he doesn't have any clotting issues that would put him at risk for something to happen again. She thinks it was a one time thing so things shouldn't get worse, but he obviously may never have fully normal function on that side. She thinks his left leg will have problems but since he is not even attempting to stand yet (he barely ever even straightens his legs), that's why we haven't noticed that. He is 7 months old (almost 8) and developmentally he is like a 3-4 month old. Which we know because of his twin brother who is developing completely normal.
I posted on the multiples board too, because one of the biggest challenges is seeing his brother learning to do everything and A just is getting left in the dust. They don't really play together much because O just kind of likes to steal his toys and A can't do much unless he can reach with the right hand!
So the plan right now, his glasses are on order, and next week we are going to have to go get him fitted for a helmet, and go back to therapy. In Jan we are set up with a program called Early On which is through the school district but they do some PT and OT things and they will assess what services he is eligible for.
The encouraging thing... he is an extremely happy kid. He smiles and laughs (he actually laughed before his brother did
He rarely cries unless he is hungry poopy or sick. As the doctor was telling me all of this, how could I get upset when I have this sweet little angel in my lap looking at me and smiling? He is telling me he is going to be ok.
I know the spectrum is great and there are a lot of things that might or might not go wrong. I am trying to hope for the best and prepare for the worst, what else can I do!
Thank you all for your responses. I know we are going to need support groups and this is the best way for me to find that!
DS2 (just turned 3) was diagnosed with spastic quadriparesis CP at just shy of 10mos old (9mos, 3wk, 3d to be exact). He is on the mild to moderate side, but I'd say closer to moderate. He had undiagnosed torticollis (his originally pedi would not diagnosis him with it, although that is how he got into EI because THEY noticed it and I always felt he had it). Outside of the tort which was taken care of between 4-6mos, I started noticing things around the 6mos point. His left side is also affected and he has worn glasses since 10mos old. He is farsighted and both of his eyes would cross intermittently but not at the same time. He had surgery to correct the strabismus this past July. No brain bleeds or strokes or anything of that sort were seen on his MRI, but PVL (periventricular leukomalacia was) though.
DS2 rolled one way at 4mos old, the other way at 9mos old, started army crawling at 1yr old, regular crawling at 2yr old (this is still his main form of transportation in the house and he is 3). You have to remind him to use his left hand all the time. So far he has full range of motion but he does fist his hands especially when feeling unstable and has his left arm bent a lot. Do a lot of stretching to prevent contractures from forming. DS2 can only sit on the floor independently by W sitting which the PTs will tell you is horrible (but his orthopedist says it isn't as bad a thing as PTs tell you - I'm not sure who to believe). He cruises a little and can only walk with a walker or with both hands held. We just got a wheelchair a couple of months ago that we use like most people use a stroller for (ie: long distance type stuff). My son is also a pretty laid back and happy guy.
I'm surprised at 8mos old he is going through the school district? Do you not have early intervention where you are? I've heard it called Infant Toddler, First Steps, and something else I cannot think of right now. That is your typical birth to 3yr old program.
I'm happy to answer any questions that you may have. As you can see, there are a few of us on here with children with CP. :-) Welcome to the board!
Maxandruby, Early On is like those things, it's from birth-3 years and is done through the ISD. We don't see them until Jan but I am going to get him back into PT before that. I have friend who is a PT and she says to do them both. I'm not really sure what to expect with them.
I feel like he has the minor signs, but not the major ones. He is doing everything normally except the whole side issue. He seems like he is there mentally, I mean he smiles and laughs and grabbed his brother's paci right out of his mouth the other day. He babbles some but does not do it with consonants yet like mamamama dadadada.
redhotchili keep me posted on your son! Obviously having twins makes the entire thing more challenging so I'm sure that we could relate. Is your DS in therapy? It's good that they are keeping an eye on things though. I kind of felt like everyone just brushed us off until we finally saw this neurologist.
DD1 has mild CP she was diagnosed first at 6 months and then also again at 9 months by a different neuro (we moved out of state).
She had a stroke before she was born which is likely the main cause in our situation. Her issues are/were all right sided. She did have tort and severe brachycephaly, mild plagiocephaly as well. We started PT at 2 months of age, and lived PT the majority of our day. There were somethings she never did, like roll in the direction where she would need her right arm to throw her over, etc. Besides her lack of good balance, no one would visually be able to tell she has CP at this point in her life (she just turned 3).
Good luck! I truly believe PT, especially early can make a huge impact along with the early diagnosis/possibility of dx.
Please don't write off your LO's future goals by what someone tells you will or won't happen.
According to our physiatrist a child who can sit independently by the time they're 2 has a VERY GOOD chance of being able to walk independently.
Also, the doctors told us that our DS1 would probably never get beyond rolling over and that he would be severely disabled. He currently, sits, babbles, plays, crawls, kneels, cruises furniture and is in the lovely stage of terrible two's mixed with adorably cute.
WHAT? Typically they say if they sit before 2 (sometimes 5) they will walk. He's still so young, he's got plenty of time to prove them wrong. DS wasn't sitting at 9 months and is getting close to independently walking at 3 years. Each kid is unique.
So nice to meet all you ladies
The bump has been a huge support to me through all of my infertility journey, pregnancy, multiples, etc! So I am glad to know there are people here going through this too.
I am new to this, but with the research I have done and the stories I have heard, I agree with the pp about not letting them tell you what your child will or will not do this young! That is one thing I am really trying to keep in mind with everything I read, every kid is different and we have no idea what will happen at this point. All we can do is be there for our LO's and take it one day at a time!
Honeybe82 I can't imagine being preggo and having to do this! More power to you mama
Hi tarajayne
just wondering how the diagnosis process for your little guy went? My son was born with a brain bleed and hydrocephalus. I was told by neurologist when he was about 2 months old that there is a possibility if CP but not given an official diagnosis. So far the pediatrician is watching his milestones but he's a few months behind. I know it will take time but I just wish I knew if he has it or not. He definitely has some signs so its on my mind a lot. We have an MRI scheduled in a few weeks.
We have our first PT with someone from Early On Kent County tomorrow. How do you like working with them?