Anyone with CP kids?--Newbie

iVillage Member
Registered: 03-07-2006
Anyone with CP kids?--Newbie
7
Tue, 03-07-2006 - 8:25pm
My son was diagnosed friday with Hypotonic Infantile Cerebal Palsy (not even sure if I'm even spelling that right) and I'm freaking out. I started the process with getting him assesed through a program that denied him last month for dev. delays (because he's only 20% delayed...to me, that's too much), but it'll take another 45 days to get in the door. So now I'm stuck waiting, and I don't know what else to do. my hubby looked it up and found out some helpful info, namely about how he got it. You know, it would help if EVERYONE THAT DEALS WITH ME AND MY SON WAS ON THE SAME DANG PAGE!!! I had strep B after testing negetive, and they didn't know he had it at first. Not to meantion that they never bothered to treat ME for it. But that's another Dr. Phil show...but now, I read that meconium asperation also may be related...he had that, also low birth weight, premature, and oxygen deprivation and/or saturation...all said could be causes, all he had. No one bothered to tell me that these could turn into CP, so I was completely blindsighted with that. And I've only had 4 days to take it in, and it finally hit me today. I have a hanicapped child. It wasn't even easy to write. Not that I'm ashamed in the least of him, but scared. I don't know what I'm doing. Or going to do. I'm scared. Can anyone help me?
iVillage Member
Registered: 03-07-2006
Tue, 03-07-2006 - 8:28pm
Sorry, btw, my name is Cheri, I'm a 31 year old mother of 4, and I live in Southern California.
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Registered: 03-19-2003
Tue, 03-07-2006 - 10:25pm

Hi Cheri and welcome!

 


 



iVillage Member
Registered: 03-07-2006
Wed, 03-08-2006 - 3:13pm

Well, all of my children are special, to me anyway! I have a 10 year old named Jonah, a 7 yr old named Hannah, a 3 yr old named Elijah (Eli) and baby Caleb is 6 months. We found out on Friday that he has Hypotonic Infantile Cerebal Palsy. I knew something was wrong when he was 2 months, but Doc said he was fine bcause 'all babies develpo differently'. But at 4 months when he wasn't reaching for toys, among a few other things, they sent us to an ophthamologist to have his sight tested, wich they said that his eye is developing normally so far, but they can't test for vision problems until he's 1. I did my own test, and he can't see my hand comming from the side, but can see everything in front of him fine, near and far. Anyway, they also sent us to neurology. He said that (at 4 months) his tone was a little low, and he was at a 2-3 month level. He told us to contact the resource center and have him tested for a physical therepy program. We did, but he was denied because he was only 20% delayed at the time. (5 months). And both his neuroligyst and his therapyst that saw him said that he seems fine, and he'll outgrow it and catch up.

Wich brings us to friday. He had another neurology appt...his update check up, and that's when my happy world because cofusing and scary. I was by myself, wich didn't help. But we thoguht everything was fine, although I even knew that his tone was still not good, but I've been working on it. I thought maybe it was because I hold him a lot and I just needed to help him a bit more to sit up and such. So anyway, I went in, happy as a lark, and told him everything above about the resorce center. He asked me if he was sitting up or standing for any length of time, and I told him no because he likes to be close to me and cries a lot (a LOT) if I don't hold him. Now, I know what some of you may be thinking, and I was once a mom that said 'don't hold them all the time because they know, and they'll cry until you puck them up again'. Caleb is my 4rth. I have never EVER been one to deny my kids a hug, or hold them, or anything like that, but I never EVER held my kids 75% of the day. Well, Caleb sure is special, let me tell you. He'll cry so hrd that he can't breathe, and I think that's WAY more tramatic than having to hold him all day. Anyway, back to Dr. Gervany, so he asked me a bunch of questions, and then, without a pause or like a warning or anything (we were laughing and joking...) he just said it. And let me tell you, those were the biggest, scarriest words I have ever heard in my life. I never thougth it could be something like this. I mean, a lot of kids are delayed in on sense or another...I expected him to say that. But man, I never thought that it would have been CP.

So the third call I made on the way home was to the resorce center again and got that ball rolling...again. And now I'm trying to find a support group for my hubby and I. He's more angry than scared like me. But I think thats a man thing because he can't fix it, you know?

So thats our story. And I just have to keep reminding myself that God blessed us with him, so we have to do the best we can. I'm just scared that it wont be good enough for him, you know? Has anyone else had that feeling??

~~Cheri~~

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Registered: 03-26-2003
Fri, 03-10-2006 - 9:29pm

Cheri, I remember so well feeling the way you are feeling and my dd is 13 years old now. She had meconium (tho I can't remember if she aspirated it), was at some point deprived of oxygen, probably before birth. She was full term but born very sick from the fetal distress--spent her first 2 weeks in NICU. She had seizures, too, so started out life on phenobarbitol. We were sent home with her not knowing anything, really. Told to just watch her and referred to all the necessary specialists. A very scary time--not knowing if she would be "normal", have slight delays, severe disabilities, or somewhere in between. Like your baby, Sydney cried ALL the time and I held her and nursed her ALL the time. I honestly don't remember when she was officially diagnosed with CP. But I do remember having her evaluated at about 4 months and they told me she was delayed at that point. Her soft spot on her head closed up very early, too, which isn't a good sign for brain growth--that freaked me out a lot because it pretty much indicated microcephaly. She never really hit any milestones other than smiling and some rolling over. The first 2 or 3 years were very difficult as far as coming to terms with having a handicapped child and, in Sydney's case, the degree of her disabilities. It was like becoming part of a whole new world that no one wants to be a part of. This was also before the internet, so I didn't have as much info available, which would have been very helpful. I remember feeling scared a lot, even scared of my own baby--those feelings are still so real when I think back to that time. You actually go through the grieving process--all those stages.

Sydney is on the severe end of the spectrum, I guess, as she is non ambulatory, non verbal, wears diapers and cannot feed herself(though she does eat by mouth--yay!). She has severe/profound mental retardation, and still is on seizure meds. I don't think I would have wanted to know all this when she was a baby--I'm thankful that I had time to adjust to it all over the years. We see her as a beautiful, happy, alert girl with her own definite personality, sense of humor, opinions. Taking care of her can be exhausting and it is a full time job. If I could, I'd trade her in for a healthy version of herself but I wouldn't trade her for a different kid that was "normal".

Your baby will probably be much higher functioning than my dd, but I wanted to let you know that things WILL be fine and you will adjust because us moms do it all the time. You just plug along, doing all the stuff you have to do for your kids, and after a while it's normal life for you to have a kid that isn't considered normal. I used to worry that I wasn't doing enough for Sydney. But I just got to the point where I decided the best that I could do was to just be her mom. I took her to all her many appointments, of course, but didn't spend all our time "doing therapy". I left most of that to the professionals.

This has been awful long--I'm tired of hearing myself, LOL. Don't know if I helped at all. Hope I didn't scare you more--each kid is different. If you have any questions, just let me know. Best wishes to you and your family! Pam

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Registered: 05-14-2004
Tue, 03-14-2006 - 10:25am

Hi Cheri. My name is Jennifer, I'm mom to Ainsley who is 2 years old and also has hypotonia. We've had most every test possible in the last two years, and while no doctor has confirmed a cerebral palsy diagnosis, I'm pretty sure that's where we're headed. Ainsley had a brain hemorrage at birth, the cause of which no one has been able to determine. She was born extremely "floppy" and spend 3 weeks in the NICU while they did tests and she gained the strength to eat. While in the NICU, they found her brain injury with an MRI. At the time, it was extremely scary, although we didn't know what that would mean for Ainsley long-term... Would she "catch-up"? Would she be uncoordinated but still able to excel in other areas? Or, would it be worst case scenario, and she'd never be independent? Truthfully, now that she's 2, we still don't know what her long-term prognosis is. What I have come to realize is that she's surprises me every day with how proud I am to see her fight so hard to do the small things that we all take for granted.

Ainsley's been in PT and OT since birth, and just started walking short distances within the past month or so. That was a huge step for us mentally. I had a huge fear that she wouldn't learn to walk. However, the past 2 years has also taught me that as soon as you get over a hump with one milestone, there are others still staring you in the face. That was a hard reality to face. I recently had a doctor tell us that some things would always be harder for Ainsley. I still don't know that I've fully accepted that, but I'm trying to remember it when I see how hard she's working and that makes me all the prouder!

I don't know if this rant hurt or helped your mental state, but at least you know you're not alone! Have you found the hypotonia board yet? It's a good board (although I haven't been very active there lately). They were able to help me through many early questions. The link is: http://messageboards.ivillage.com/iv-ppchdhypoton

Also, we haven't been the best about updating it lately, but here's Ainsley's website and blog in case you're interested in 'meeting' her.

http://members.tripod.com/ainsleysmom1-ivil/
http://ainsleysmom1-ivil.tripod.com/ainsblog

Jennifer

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Registered: 09-05-2006
Fri, 09-15-2006 - 9:22pm
Hi Jennifer! My name is Jennifer too!! I'm new here to and my daughter Victoria has CP and she is six years old. She was diagnosed about 8 months ago. She has always had developmental problems since birth. She had seizures as a baby but she has outgrown them and she has been seizure free sence she was nine months old. She stayed on the meds because the MRI's and EEG's showed signs of seizure activity and praise God there has been no more seizure activity. She only says maybe 15 words and she does a little sign language. She started walking when she was three. She isn't potty trained and shows no signs of improvement in that area. It has been a rollercoster ride for all of us. My mother recently passed away due to brain cancer and I pretty much feel like an orphan. My parents divorced when I was three so she is all I had and now she is gone. I contacted my father but he was a jerk to me and my family. My in-laws think that I need to try to contact him again but I don't need the heartbreak right now. I'm still shocked that my mother is gone. I really could use a friend right now. Take care! Jenny!!
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Registered: 06-06-2006
Sun, 09-17-2006 - 1:19pm

Hi! I have a 16 month old son that has CP. He was injured at birth(that's a whole long story I won't get into), as a result of that along with CP he is fed through a G-tube, has a seizure disorder(although no seizures since birth), has a cortical visual impairment and is hearing impaired. He is severely developmentally delayed, he is just starting to hold his head up and sit with support. It was touch and go with him at first, they kept saying we were going to lose him, but he is still here, still fighting. Hi is strong and determined, with beautiful green expressive eyes. We definitely had to change alot in our lives since he has arrived, but I rather deal with the day to day challenges then not have him at all. Of course it is scary, just take it one day at a time. Take what the Dr.s tell you with a grain of salt they always tell you the worst case senario, in order to cover their butts, this doesn't always apply to your child though, hang in there I wish you all the best.

Saara mom of Naim 7, Ahsan 6, Ilyaas 16 mo, EDD 1/30/07