HealthBoards

HealthBoards (http://www.healthboards.com/boards/)
-   Cerebral Palsy (http://www.healthboards.com/boards/cerebral-palsy/)
-   -   Need to learn about CP (http://www.healthboards.com/boards/cerebral-palsy/885705-need-learn-about-cp.html)

New Foster Mom 01-15-2012 08:00 PM

Need to learn about CP
 
Hi Everyone, I am a new foster mom and my foster baby may have CP. Doctor's have not made the diagnoses yet but he is receiving early intervention services, including PT, several days a week. I am hoping to get 1st hand advice on how to help my new little boy! He is 16 months old and can not sit without support, he has interludes of stiffness in his legs and arms, but at other times he seems quite relaxed. He concentrates so hard when trying to reach for things. He is mostly unsuccessful at retrieving objects because his hands are usually fisted and open at the wrong times to grab at things. But, he is very aware and smart. He can tract things, he knows faces and names and can look at the toy that you name. He just seems trapped in a body that isn't working very well. He can get bored and frustrated because he is unable to do the things he would like to but is generally very happy. My heart is just aching for my little guy. What can I do to help him? How can I help him to communicate? To sit up? His PT does some stretching with him, but I don't feel it's doing enough. I keep massaging his hands open and trying to help him to grasp things. He is very small for his age, just turned 18 lbs. Can anyone suggest appropriate toys for him or equipment. I have a jumperoo and a bumbo chair. He can hold his head up for short periods of time but then he slumps over, usually to the right side. Any advice or suggestions would be so helpful.
Thanks a bunch!!

Leaciesmum 01-18-2012 08:36 PM

Re: Need to learn about CP
 
Hi there, I'm not sure what country you're in (I'm in Australia) but if you don't think you are getting enough PT through early intervention you can always get some private sessions as well. Our early intervention only gave us PT one fortnight and OT the next, they also offered speech therapy, hydrotherapy and play groups.

There are toys you can get if he is very fisted and has trouble opening his hands to get 'cause and effect'... they are call 'switch adapted toys', you can look them up on the internet.

You proably wont get a formal diagnosis for him until he is about 2 because there are many disorders that can mimic cerebral palsy. Has your little guy had MRI's and bloods done? Although 9% of children with cerebral palsy can have a normal MRI... my daughter was one of these.

Do you find with his tone that he is stiffest when he is unstable and more floppy when he is relaxed and feeling secure? That is how my daughter is, our OT described it as dynamic tone.

There is also Botox injections that can help with spasticity. My daughters first lot were in her hands and wrists and worked amazingly to help open them up. She is 5 now and she can do so much, she's even learning to write her name... she just does things differently.

You will probably find your little guy will benefit from the use of AFO's (ankle, foot orthosis), they help stretch the hamstring and calve, keep the foot in a good position and help them to weight bear better.

I'm glad you have a Bumbo... mine was invaluable, we used it right up until she was 5, we took it everywhere and even used it on a regular chair at the dinner table.

There is so much for you to learn and if you're like me you are going to feel bogged down by input overload, but before long you will know so much and be a wonderful advocate for your boy.

There is also a rating scale that you can check his progress on... it's called a GMFCS (look on the net)... it will give you an idea of what level his motor skills are at.
Even though my daughter is GMFCS level 4 (which basically means she'll never walk unaided) she can talk the leg off a chair, she can crawl (bunny hop), she is a social butterfly and is about to go into mainstream school.

Oh and one of the best bits of advice one OT gave me many years ago... 'don't treat her like she's different, she doesn't know she's different, just treat her like one of the kids'... and I do, she still gets chores, gets time-out if she's naughty and gets reward charts for goals.

Feel free to chat any time :)

New Foster Mom 01-19-2012 04:50 PM

Re: Need to learn about CP
 
Thank you so much for your advice! I will look online for those toys. My little one sounds very much like your daughter. He definately is more relaxed when feeling secure. He is very tight in the mornings and more relaxed in the evenings. I just took him for his 16 month check up and I was devastated. The doctor told me he is at a 3 mo. old level and that I should re-think my expectations for him. Said that I should have very low expectations for him. Needless to say, it was like all the air was sucked out of the room. I do have high expectations for him. I know he isn't my own child, but while I have him, I am going to have high expectations for him. My hope for him is that he will be happy and be able to communicate and be mobile in some way, just like your little girl. It is so encouraging to hear how well she is doing. I am so happy for your family. Thank you for the encouragement and helpful advise. Very encouraged tonight. :)

Leaciesmum 01-21-2012 10:08 PM

Re: Need to learn about CP
 
Honestly many of the kids I know who were given a grave prognosis turned out to be so much better than expected. I know one little boy who's parents were told he'd never walk or talk and he is both walking AND talking, it may not be the same as every other child but he is a prime example that only time will tell what they are capable of.

There are kids out there that have quite marked brain damage and have very little symptoms, then there are kids like mine that have no or minimal damage and have significant issues.

In the beginning we were told that Aleacia only had very mild CP, that best case senario she'd walk with a limp, worst case senario she's use a walker. Sadly it turned out much worse than that but even now if she's sitting in a chair (no wheelchair in sight) you wouldn't know she's got CP, even doctors who don't know her think she's only got it mild until they see her try to move. We were so blessed that she has no vocal or swallowing issues... this gives her the ability to tell us when she's in pain or uncomfortable or to make us laugh (she has a wicked sense of humour).

Aleacia still can't roll over in bed, bunny hop crawls, last year (age 4) she learnt to use her tone to cruise around the lounge and even get herself up onto the lounge. Last year she also started to use a Dash walker (like a Kay walker), she can go very short distances but I know that will improve.

I've yet to put one of her in her Hart walker, they are a mechanical miracle.

So please don't listen to the doctors, they don't know... give your little guy time and lots of love and therapy and prove them wrong. You will soon be crying with pride at each little accomplishment he makes, just like I do.

New Foster Mom 01-23-2012 06:01 PM

Re: Need to learn about CP
 
When did she start to talk and did she receive speech therapy? My baby is very weak in his trunk. He is gaining more and more strength and control in his neck though. He sometimes will stiffin his whole body and at other times he slumps over. He is very often tight fisted, but sometimes his hands are open. He grabs for things but often he closes his fist before reaching the item. He is very smart and learns new things quickly, but he isn't able to talk at all. He does do a lot of cooing and babbling though.

Did Leacie have any trunk or fist issues and if so, at what age did she learn to sit up and use her hands to manipulate things?

Your experience is so valuable. Thank you for taking the time out to chat.

Leaciesmum 01-24-2012 09:04 PM

Re: Need to learn about CP
 
Leacie has low tone in her trunk... she could only sit when propped or in her bumbo until she was about 3... even now she is very unstable when sitting and can easilly be knocked over. She was almost 5 before she could get herself into a sitting position, but even now that depends on how tired she is or what position she's starting from.

She was average age with her talking, she could say a couple of words at age 1 and short sentences by age 2. We had her assessed by a speechy but she didn't need any therapy.

She doesn't have a drooling problem but she does have issues with too much food in her mouth and has a strong gag reflex, but otherwise orally she's really good.

As for the fisting, that was one of the first things that started to ring alarms for me, when she was little her hands were always fisted, she'd pick things up between two fists. Her thumbs were also very adducted. The botox helped that beautifully.

She can open her hands and reach out really well when she is relaxed and secure but when she's not secure her arms wont stretch out at all and her hands fist up. I still have to remind her to use open hands to hold cups and things.

Also when she bunny hop crawls (she was about 3'ish when she started doing that) she can't use open hands, she uses closed hands (up on her knuckles) which is causing them to become deformed. We have resting splints for her hands that she wears at night to try to help couteract this.

Do you use any signing with your little guy? I know all our therapists use signing cues even with the verbal kids... a few of the kids at hydrotherapy used signing (well begining to use it) it made things so much easier for their parents to know what they wanted.

New Foster Mom 01-25-2012 06:38 PM

Re: Need to learn about CP
 
Wow, it's so wonderful that she didn't have any problems talking. I'm afraid my baby is going to have a very hard time communicating. He can mimic some sounds that I make, but he has not been able to say anything that resembles words. I do sign some words to him like "more", but I'm afraid he won't be able to do these signs because he doesn't have the control he needs in his hands. But, I keep doing it because someday he might be able to overcome that.

His PT is going to have him evaluated educationally so that we may be able to get some help with some of those issues. Right now I just try to read his facial expressions and body language to know how he is feeling and what he wants. We seem to be getting along pretty well in that area but I just pray that someday he will be able to speak or sign.

I am so encouraged by all the things that Leacey is able to do. Is she attending school now? If so, how has that been going for her?

Oh, by the way, I live in New York, USA :)

kc802 01-26-2012 06:20 AM

Re: Need to learn about CP
 
[QUOTE=New Foster Mom;4911589]Hi Everyone, I am a new foster mom and my foster baby may have CP. Doctor's have not made the diagnoses yet but he is receiving early intervention services, including PT, several days a week. I am hoping to get 1st hand advice on how to help my new little boy! He is 16 months old and can not sit without support, he has interludes of stiffness in his legs and arms, but at other times he seems quite relaxed. He concentrates so hard when trying to reach for things. He is mostly unsuccessful at retrieving objects because his hands are usually fisted and open at the wrong times to grab at things. But, he is very aware and smart. He can tract things, he knows faces and names and can look at the toy that you name. He just seems trapped in a body that isn't working very well. He can get bored and frustrated because he is unable to do the things he would like to but is generally very happy. My heart is just aching for my little guy. What can I do to help him? How can I help him to communicate? To sit up? His PT does some stretching with him, but I don't feel it's doing enough. I keep massaging his hands open and trying to help him to grasp things. He is very small for his age, just turned 18 lbs. Can anyone suggest appropriate toys for him or equipment. I have a jumperoo and a bumbo chair. He can hold his head up for short periods of time but then he slumps over, usually to the right side. Any advice or suggestions would be so helpful.
Thanks a bunch!![/QUOTE]

Hi there. My boyfriends daughter has cerebral palsy so hopefully I can be of some help in telling you things we have done/do for her! Your little boy reminds me a lot of my boyfriends daughter (Sarah). She is 6 now. She too experiences a lot of stiffness (especially in her arms). When she was a baby her hands were often in fists, but as she's gotten older they aren't anymore. Arm stretches seem to have helped her a lot. We find we are still having to play with baby toys as they are easier to use and even the littlest movement from her can get them to work properly so she loves that. She has had botox which helped with the stiffness, also her drooling. We also found that the therapy from the hospital wasn't really that much of a benefit so she went to a 5 week intensive Conductive Education therapy camp which works WONDERS for some kids! It is rather expensive (about $8,000), but the one we went to had your accommodations paid for. Going to things like this on a steady basis would definitely help any child, but having the money to do so is another thing. In regards to communicating, Sarah is very smart so she finds her own ways to let us know what she needs. The family has also taught her a variety of different things for communicating (blowing kisses, telling someone with sounds when she wants something) and even though she can't talk we've found ways to teach her her colors and numbers as well. You just need to be creative in how you teach things, and make everything fun. As for being small for his age, in my experience this seems common as Sarah is 6 and only about 33 pounds. There are many different aids you can get to help as well, although they're all very expensive. We recently bought an Ipad & an adaptive tricycle which are both great for kids with disabilities. You can also get things like standers & I've even seen ones that puts the children in the position for crawling. The ponywalker is great as well. We also found that time in the water helped to get her legs moving & now she "walks" (moves legs in walking motion) while being supported. These kids are really amazing and it amazes you what they can learn and how happy they are despite everything! Sarah has really come a long way. It just takes patience and time to teach them things.

New Foster Mom 01-27-2012 03:10 PM

Re: Need to learn about CP
 
Thanks for your feedback. Sarah sounds like she is doing so well.

My little one is also playing with baby toys. He can use his fist to push or pull things, but that's about all. He can't pick anything up yet. He can move his legs and feet in a walking motion when you stand him up and move him forward, supporting his trunk. I hope this is a good sign even though he can not walk, sit or stand right now. His legs seem to move pretty freely, unlike his arms, which are stiff probably 70% of the time. I think that botox may work very well for his hands but I'm not sure he will be able to get it because he has not been officially diagnosed yet. I need to check on that.

What are some of Sarah's favorite toys. I am always looking for anything I can find for some independent fun. He is always is so proud of himself when he can move an object and make something happen all by himself! :)

Thanks again for your response!

kc802 01-28-2012 07:21 PM

Re: Need to learn about CP
 
She's doing really well :) unfortunately she suffers from seizures as well and we've had some very rough times with respect to that, but she hasn't had a "bad" one in over a year, thank God!

Your child sounds so much like Sarah. What you said about the walking is exactly what she does. Actually just last week she had to get surgery on her hip because one of them was pushed out too far which was hindering her balance and learning to walk.. She's in a body cast now :(. Hoping this surgery helps :)

I think it's a great sign that he's able to do these things so young (19 months I think you said?) At that age Sarah wasn't doing that so there's only room for improvement. With regards to not being able to sit, Sarah can't either but we sit her cross legged and put one of her arms stretched out on each side of her leg to help her balance & stay upright.. She'll stay there for certain amounts of time, especially when being entertained by someone else or a toy. Not sure if your son's arms will enable him to do this or not, but figured I'd give you a suggestion!

With regards to toys, there's nothing really fancy that she likes besides her ipad. Other then that she loves playing anything that involves throwing a ball.. (baseball, basketball, bowling, etc..).. She's really fond of her remote control car since she can help push the buttons. Also she has stackable "scoops" to help her learn her colors, but she LOVES for someone to stack them up and she'll reach her hand out and tip them over. We find she loves anything she can make topple over since she does it on her own, I also think she thinks it makes us mad hahaha. She also had blocks to learn shapes and we'd put them up to the hole for the particular shape and she'd be able to push them in herself. It really is the sweetest seeing them be so proud for doing things on their own.

New Foster Mom 01-29-2012 06:04 PM

Re: Need to learn about CP
 
The stacking scoops sound great. Where did you get them? My little one has a seizure disorder as well. He is on a daily medication for it as well as Gerd. He is 16 months old. He likes his jumperoo and he can go backwards in his walker as long as he has sneakers on. Haha!

Oh my goodness, I hope Sarah is doing well after that surgery. I hope she has a speedy recovery!

I do sit him down with his knees outward and his feet touching. Then I lean his arms over his knees so he can balance. He usually tips over but we keep working on it.

Thanks for your suggestions, I really appreciate it.

kc802 01-30-2012 12:07 PM

Re: Need to learn about CP
 
We got them from the store kid craft. They have a website where you can order online.. Not sure if the game is there or not. Its actual name is "Sky High Scoops".

Sarah is on medications, as well. She's doing great. She's acting herself, just as if nothing ever happened! It's amazing how resilient children can be.

Yes Sarah used to tip to one side almost immediately as well. We find if we get her concentrating on a toy (even if we have to play with it ourselves) it really helps her stay sitting up in midline position for quite a while!

Your welcome! It's nice to communicate with someone who has similar experiences!

New Foster Mom 02-01-2012 05:36 PM

Re: Need to learn about CP
 
[QUOTE=kc802;4919740]We got them from the store kid craft. They have a website where you can order online.. Not sure if the game is there or not. Its actual name is "Sky High Scoops".

Sarah is on medications, as well. She's doing great. She's acting herself, just as if nothing ever happened! It's amazing how resilient children can be.

Yes Sarah used to tip to one side almost immediately as well. We find if we get her concentrating on a toy (even if we have to play with it ourselves) it really helps her stay sitting up in midline position for quite a while!

Your welcome! It's nice to communicate with someone who has similar experiences![/QUOTE]

I am so happy Sarah is doing so well. Now that her hips are doing what they are suppose to, maybe it will help her to stand.

Thanks for the toy website, I will check it out. I did find a couple of toys he really seems to like. One is from Walmart and has a joystick that moves a monkey in silly movements and it has a wheel to turn and buttons to push. It's a zoo theme. Also, I found a spinning toy at our thrift shop. It has a tube in the middle that is really, really easy to push down and it makes the spinning wheel goes really fast. It doesn't play any music, just makes a cool sound that I think he really likes. You can add balls to the spinning wheel for extra fun!

Even though he has some toys that he can play with on his own a little bit, he still can't entertain himself for very long at all. He gets bored very easily and really just wants to interact with people. He needs to go from one place to another pretty frequently or he'll get fussy. It's got to be so hard not to be able to tell someone what you need or want. We just have to read his body language.

Thanks again for the website and I hope that Sarah continues to do well.

kc802 02-02-2012 07:42 PM

Re: Need to learn about CP
 
She's doing great :) Unfortunately now she's sick with an ear infection. That causes a lot of worry since she's prone to seizures whenever she has an infection. Seems to always be something!

It's great you've found toys that he can play with himself. As in getting bored easily, Sarah's the same way. To this day she won't watch tv for longer than 2 minutes, or play by herself. She's happy as can be as long as someone is playing with her and catering to her whims when she wants to switch toys every 5 minutes, haha.

I find that even though Sarah can't talk she communicates what she wants very well. She makes noises (kind of like an 'uh' sound) and you can even tell by the tone of her voice whether she means yes or no. She also will turn her head away if you get something she doesn't want. We've also taught her to touch which book she wants for example when given a choice between a couple things.

Does your little boy have AFO's? We find it helped Sarah's standing a lot. She would wear them while standing in the corner and would stand up straight for quite some time! Unfortunately as her hips got worse we weren't able to keep doing it.

New Foster Mom 02-03-2012 07:01 PM

Re: Need to learn about CP
 
[QUOTE=kc802;4921682]She's doing great :) Unfortunately now she's sick with an ear infection. That causes a lot of worry since she's prone to seizures whenever she has an infection. Seems to always be something!

It's great you've found toys that he can play with himself. As in getting bored easily, Sarah's the same way. To this day she won't watch tv for longer than 2 minutes, or play by herself. She's happy as can be as long as someone is playing with her and catering to her whims when she wants to switch toys every 5 minutes, haha.

I find that even though Sarah can't talk she communicates what she wants very well. She makes noises (kind of like an 'uh' sound) and you can even tell by the tone of her voice whether she means yes or no. She also will turn her head away if you get something she doesn't want. We've also taught her to touch which book she wants for example when given a choice between a couple things.

Does your little boy have AFO's? We find it helped Sarah's standing a lot. She would wear them while standing in the corner and would stand up straight for quite some time! Unfortunately as her hips got worse we weren't able to keep doing it.[/QUOTE]


What exactly are AFO's ? So far, no one has mentioned anything about them.

I've noticed when my guy doesn't want anymore of something he also turns his head away. Right now he is sick with a respiratory virus, so he only wants to be held. Hoping to make more progress with his hands when he gets better.


All times are GMT -7. The time now is 05:46 PM.