developmental delays??? - Mothering Forums

Forum Jump: 
 
Thread Tools
#1 of 11 Old 03-27-2007, 10:09 PM - Thread Starter
 
michellemom's Avatar
 
Join Date: Mar 2007
Location: Philadelphia
Posts: 9
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I have been searching the threads for something but I can't put my finger on it, so I figured I start a new one.

DS has been recently dx with mild cp - high tone in legs and spasticity in arms. He is a little over 10 months old, can only sit up when put in that position, but he's getting stronger at it, falls over less and sometimes catches himself. does the commando creep thing, but not crawling. early intervention came and he's been diagnosed officially as cp (had a neuro eval too) and found to be advanced vocally and socially, or at least at appropriate stages with that. He was a preemie born at 32.5 weeks and is long and thin. He didn't need a respirator or oxygen and spent 3 weeks in the NICU getting stronger and learning to suck. My two older kids got chubby by their one year bday, but he's a long way off from chubby. First OT to evaluate him said he probably burns alot with all his movement. great, thanks. :

anyway ... with a child so young, who appears to meet milestones, but you have to adjust for the preemie thing, how do you know what's "normal" and what to expect. I go from the extreme of thinking everything is fine and he'll be fine by age two and these people are just overly concerned or expecting too much or my husband is doing his "worry thing" -- then I think, what if he does need braces to walk, and what if we have to revamp the house, and what if he needs a special school, what if his delays are verbal too and we can't tell cause he's not talking yet. The whole eval process is unnerving because you never know what they can't do until they don't do it ... and you wait for the next shoe to drop all the time.

I am trying to find a local support group, but am kind of stuck as to how to do that. anyone have any links for cp kids?? I want to take him to gymboree and get out of the house more, but he's not that mobile yet and I don't like sitting there comparing him to other babies. I already have a little Mommy and me, and the other kids are a bit older and its pretty comfortable.
This is my first SAHM experience too, so everything seems magnified. With the other two (who are 9 and 14) I worked and they seemed to reach milestones without much effort, both walked by 13 months, I didn't even pay attention to when they were able to sit up, so it never occured to me that this little boy was late, even for a preemie.

I have to go tuck in the elders while our baby continues to babble and stay up later than they do, and that's another thing, he doesn't sleep well. OT said he might be waking himself up with muscle jerks. The other two slept through the night by 8 weeks, and I hate comparing him, but you just do, YKWIM? Plus I sleep in his room so he doesn't wake everyone else up ... which is a problem because I snore, so who is keeping who up, right?

okay - enough said.

any thoughts?
any similar experiences?
any cp parents?


thanks a million!!!
michellemom is offline  
#2 of 11 Old 03-27-2007, 10:30 PM
Banned
 
fluffypenguin's Avatar
 
Join Date: Mar 2007
Posts: 347
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
This sounds a lot like my daughter. She has the CP diagnosis from a neuro because she had a stroke at birth, but to be honest you cannot tell by looking at her.

Stop fretting about the future and focus on NOW. All you have is right now. Tommorow is not guaranteed for ANYONE. Just because he has CP does NOT mean he will be intellectually delayed. For all you know, he could be quite gifted.

Braces (called AFOs) are NOT the end of the world. They help the kids to walk streighter and help to prevent problems down the road (IE intoeing).

Gymboree: YES! Take him! He will love it! Let the staff know he is a little bit delayed, but you do not have to go into details. But ask if he can be put into a group that fits where he is developmentally. They will be cool about it all AND it will be fun for you both.

What tests has your neurologist done? Have they done any scans (MRI or CT)? Have they done an EEG? Have they done genetic testing?

The weight thing is very true for CP kids. Infact, they have their own growth charts for kids with CP because of the extra calories.

Also, I hate to scare you. How sure are you that the muscle jerks you are talking about are not seizure activity? Does the neurologist know about these?
fluffypenguin is offline  
#3 of 11 Old 03-27-2007, 11:31 PM
 
sunflowers's Avatar
 
Join Date: Sep 2006
Posts: 2,140
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by michellemom View Post
DS has been recently dx with mild cp - high tone in legs and spasticity in arms. He is a little over 10 months old, can only sit up when put in that position, but he's getting stronger at it, falls over less and sometimes catches himself. does the commando creep thing, but not crawling.

First OT to evaluate him said he probably burns alot with all his movement. great, thanks. :

anyway ... with a child so young, who appears to meet milestones, but you have to adjust for the preemie thing, how do you know what's "normal" and what to expect. I go from the extreme of thinking everything is fine and he'll be fine by age two and these people are just overly concerned or expecting too much or my husband is doing his "worry thing" -- then I think, what if he does need braces to walk, and what if we have to revamp the house, and what if he needs a special school, what if his delays are verbal too and we can't tell cause he's not talking yet. The whole eval process is unnerving because you never know what they can't do until they don't do it ... and you wait for the next shoe to drop all the time.

I am trying to find a local support group, but am kind of stuck as to how to do that. anyone have any links for cp kids?? I want to take him to gymboree and get out of the house more, but he's not that mobile yet and I don't like sitting there comparing him to other babies. I already have a little Mommy and me, and the other kids are a bit older and its pretty comfortable.
This is my first SAHM experience too, so everything seems magnified. With the other two (who are 9 and 14) I worked and they seemed to reach milestones without much effort, both walked by 13 months, I didn't even pay attention to when they were able to sit up, so it never occured to me that this little boy was late, even for a preemie.


any thoughts?
any similar experiences?
any cp parents?


thanks a million!!!

I can really relate to much of your post. My dd was a 27weeker and I have felt alternately, fine about her weight, her progress, when she hits her milestones, ect adn then I have periods where I'm panicking about what her future really holds. That she's way too small (17.5lbs/27.5"), she's far too clumsy, she has aversions, and has had a seizure last fall.

She is followed by a developmental ped every 6mos and at her 9mo adj visit she ordered an MRI because she suspected CP for many of the reasons you decribed. The MRI- and another to follow it- showed several brain abnormalities which are non treatable. It's a wait and see for us, too. I was scared by her regular ped who said dd would never sit up on her own, never walk, never feed herself, never talk, and be severely mentally impaired.

DD had other plans. very shortly after her prognosis was made, she began to sit up, crawl, pull to stand, feed herself, and make sounds! I felt so much better but then began the wait for her next milestone. Where would she stop progressing- you know? So I can so relate

As far as finding a local group, when EI came out, they told me about monthly meetings that the families involved in EI can attend and 'network'. EI is not solely a therapy program. They can facilitate families with finding support (through family counseling and parent support groups) as well as helping families apply for government and private funding (like WIC, SSI, ect). Maybe call your case manager and ask if any of those family services are available to you.

I don't have dd in Gymboree but I do have her enrolled in Music Together (aka Music in Me). She really has grown since we started and it's not physically demanding. She can participate or not at her leisure adn she definately enjoys the singing and movement. I've been told Gymboree is a more structured class which can require the child to follow the class. It may just be that way in my area. Both Music Together and Gymboree have sample classes you can try before enrolling. Se what's a good fit. One other idea is Little Gym. It's physical but less structured/more free so that might be something to try, too.
sunflowers is offline  
#4 of 11 Old 03-27-2007, 11:34 PM
 
sbgrace's Avatar
 
Join Date: Sep 2004
Posts: 9,213
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I don't have any experience with CP but plenty with facing an unknown future. It's really hard when your told your child is special needs...facing that. But I think not knowing what the future holds and the scope of it is much worse. Really, like the pp said, no parent has a sure future with their kiddo and things can happen at any time but special needs parents have to face that head on. As he gets older you might consider melatonin for sleep..I've read studies on its use in young kids with CP in researching its use with autism. I don't suppose you swaddle or that he would tolerate that at this age but it might help if he did--we used miracle blankets for much of the first year and it was suggested by OT's that I could have swaddled my son into his second year probably but I didn't know that at the time. My best advice for both you and your husband is make sure the appropriate testing is happening and appropriate therapies but over-all just focus on the now. You can waste a lot of time and joy worryng about the future and it doesn't help it. A lot of my fears came true but I still shouldn't have spent time on them when my son was younger because I couldn't do anything about it anyway...it was wasted time.

Rachelle, mommy to 8 year old boys! 

My Blog-free homeschooling finds and my lesson plans and link to the new User Agreement

sbgrace is offline  
#5 of 11 Old 03-28-2007, 07:18 AM
 
aris99's Avatar
 
Join Date: Oct 2005
Posts: 988
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Hi,

My dd was born at 26 weeks. She was diagnosed w/hypertonia and later after she was evaluated by EI her pt told me that she thought my dd would be a spastic quadriplegic. She had 2 MRI's, EEG and was being followed by a neurologist. The MRI's and EEG showed no abnormalities but time was passing and my dd was not sitting unassisted, crawling or anything along those lines. After being seen by a second neurologist we were told that IF she walked it would not be before she reached 2 yrs BUT this neurologist refused to give us any cp type diagnosis until she was at least a yr old.

In Sept my dd began to wriggle forwards, w/in 2 weeks she was commando crawling. She started pulling to stand by 10 mos (very awkwardly...still hypertonic). Yesterday she WALKED across a football field alone!! She is 15 mos old. She can still be quite stiff at times ESP. when someone is trying to make her do something that she is opposed to but she has largely overcome whatever was holding her back early on.

I think the best thing you can do is to find a good pt and ot and close your ears to diagnoses until your son is 2 yrs. It's not being in denial it's just that your son is so young and he was a preemie and he still has a LOT of time to catch up. AND by the way for what it's worth, sitting and pulling into sitting position was one of the last skills my dd mastered because she has a weak trunk...tummy time and having her crawl as long as she could (not rushing her into standing or walking) probably helped the most as far as sitting goes.

hang in there!

mum to 3, 8 yo dd: 6yo ds and 4yo dd
aris99 is offline  
#6 of 11 Old 03-28-2007, 06:16 PM
 
cchrissyy's Avatar
 
Join Date: Apr 2003
Location: Berkeley CA
Posts: 2,192
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
"I am trying to find a local support group, but am kind of stuck as to how to do that. anyone have any links for cp kids?

my local groups are
1) One certain yahoo group has been amazing. Some not as much. If you're lucky, there may already be a "Pennsylvania CP babies group" for all I know
2) a special needs swim/gym program at the Y where parents have support group while SN kids get 1:1 lessons and little kids get free babysitting
3) an unofficial special ed PTA type group.
etc.

Berkeley mom of 3 and President of Tender Cargo Baby Gear
and The Nurture Center Store and Resource Center 3399 Mt Diablo Bl Lafayette CA 888-998-BABY
cchrissyy is offline  
#7 of 11 Old 03-30-2007, 11:05 PM - Thread Starter
 
michellemom's Avatar
 
Join Date: Mar 2007
Location: Philadelphia
Posts: 9
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
thanks everyone for your replies. They really help!

I had scheduled an MRI and then canceled it because we knew that no matter what the results it wouldn't change the treatment. When he is older and may be able to lie still without sedation we may do it then. I am pretty sure he had an MRI, and definitely an ultrasound when in the NICU.

The OT who eval'ed him didn't note seizure activity, and dh asked specifically, because we'd request an EEG if there were any indication. I watch him closely though. He loves to look up at the ceiling and roll his head back and forth. makes this lovely bald spot on the back of his head.

I didn't swaddle him for long because 1- he came home in June and it got hot and 2 - he squirmed out of the blankets. Now that he rolls it's really hard to keep him covered. Thank goodness Spring is around the corner. I am always checking to cover him up.

Most of the doc's said you can't "really" dx till 1 yr and then that preemies usually "catch up" by 2 years - yet they throw the CP dx around anyway. It's good to hear about other kids who kept progressing despite what was predicted. I have a friend on another board with a daughter with DS. She is a month older than my son and she's crawling and feeding herself and all sorts of stuff. She keeps proving all their predictions wrong, and its is so great. I know there are issues there that I can't imagine, but watching other babies succeed like that - it gives you hope and a warm fuzzy, Ya know?

We attend a Mommy and Me on Thursdays now. Its a small group - really small - but he loves it - and he loves music and tries to "sing" along and bounces. : I have to look into the local gymboree and see how much activity there is. thanks for the advice on asking the PT about local support groups too. waiting to hear back and schedule our first visit.

I look at him and honestly, I don't think I would have noticed anything except slow milestones if no one had said anything. We thought he got all tense and bouncy because he was excited. then you notice little things like he can pick up food with the pincers grip and feed himself and then his arms stiffens up and he wings it across the tray, flinging cheerios all over the floor - which the dog loves, and sometimes he drops food for the dog on purpose so he can watch her under his feet.

Only time will tell, and I know we're doing what we can. As far as testing goes - what are the risks involved and should I go and do them anyway. The older neuro said she didn't want to do a metabolic panel yet - she wanted the MRI - doesn't think the issues are blood related. I had a CVS and it showed no genetic abnormalities ... am I missing something there? dh is against invasive testing that isn't really necessary.

all in all, today was a good day.

thanks again!
have a great weekend everyone!
michellemom is offline  
#8 of 11 Old 03-30-2007, 11:39 PM
 
nausicaamom's Avatar
 
Join Date: Feb 2006
Location: babymooning
Posts: 1,766
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I don't have any experience with CP (my son has ASD), but I do live in Philly if you are looking for some support.
nausicaamom is offline  
#9 of 11 Old 03-31-2007, 10:24 PM - Thread Starter
 
michellemom's Avatar
 
Join Date: Mar 2007
Location: Philadelphia
Posts: 9
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Jenn - thanks for the support! perused your links (briefly) very interesting. I am a crafter too, although I hesitate to label myself anything. I was in advertising for over 10 years and I still feel like it was all guesswork.
I recently taught myself to knit again - recent as in a couple weeks ago. So far I've dropped at least two dozen stitches.
I am in the NW burbs near King of Prussia. worked downtown for years!
feel free to email me.
thanks again!
michellemom is offline  
#10 of 11 Old 04-01-2007, 05:32 PM
 
FancyD's Avatar
 
Join Date: Apr 2005
Posts: 2,714
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Hi there, my son has mild to moderate cp (left hemi). If you want to pm me, feel free...
DS has always had a hard time sleeping, and since he's only 2 and pretty much non-verbal, it was hard to figure out why. Turns out, he needs more stim to fall asleep-wave machine, music box, door open, hall light on. Also, cramps could be an issue. DS seems to be in pain fairly often. You might want to try massages before bed and see if that helps.

I could never go to playgroups, it was too hard on me. Selfish, maybe, but I had a flippin' breakdown when I went. It's been a long process to accept where my son is at. We don't even know how extensive his disabilities are at this point, and it has become more obvious that he is delayed, to others. You know, like why do I let my 2 year old scream like that? Why do I always pick him up?

I can 'yeah, that' to nearly your whole post.

FancyD is offline  
#11 of 11 Old 04-03-2007, 01:36 PM - Thread Starter
 
michellemom's Avatar
 
Join Date: Mar 2007
Location: Philadelphia
Posts: 9
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
FancyD:

Thanks for your reply. It's great to hear how other mom's cope. I bought a sound machine too, although it's not the most reliable. It's a Conair and sometimes the sound goes away and you have to bang and jiggle it. It works well though, especially to cover up my snoring. I also have two mobiles, one which has the lights that shine and move on the ceiling. Most times the music helps him go to sleep, but I have to keep restarting it until he's really out. And he's very sensitive to outside noises, like the older kids stomping by his door. I don't know if he's in pain, though dh has expressed concern about the possibility.

So far at our Mommy & Me he is too little to notice the delays, and it's such a small group that I feel comfortable there, for the moment. I do not know how I will feel as he gets older and the toddlers around him are taking off in all directions.

Last night at dinner at my in-laws my nephew (who is 11) was asking about Avi walking or crawling or something, to which my son answers no, he's not, so my nephew starts talking about how he walked at 10 months and set some kind of record, and even though I know he doesn't know that Avi is behind for a reason it still kind of stung, YKWIM? I can't blame him for trying to chat about baby stuff, but I can see where this will go as time passes.

I'll have to PM you later when he's napping. right now he's trying to type with me.
michellemom is offline  
Reply

Quick Reply
Message:
Drag and Drop File Upload
Drag files here to attach!
Upload Progress: 0
Options

Register Now

In order to be able to post messages on the Mothering Forums forums, you must first register.
Please enter your desired user name, your email address and other required details in the form below.
User Name:
If you do not want to register, fill this field only and the name will be used as user name for your post.
Password
Please enter a password for your user account. Note that passwords are case-sensitive.
Password:
Confirm Password:
Email Address
Please enter a valid email address for yourself.
Email Address:

Log-in

Human Verification

In order to verify that you are a human and not a spam bot, please enter the answer into the following box below based on the instructions contained in the graphic.



User Tag List

Thread Tools
Show Printable Version Show Printable Version
Email this Page Email this Page


Forum Jump: 

Posting Rules  
You may post new threads
You may post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off