What to expect?

Amanda - posted on 04/13/2013

I know this is like 4 yrs ago I just found out that My son who will be 18 Months tomorrow 4-14-13 has CP I found out a couple weeks ago anyways The dr's told me not to panic or worry or anything but she hasn't even talked about Surgery or Botox or whatever that is...My son has been going to Physical Therapy since he was 6 Months old...He see's AEA for Feeding he goes to Des Moines Iowa to Childrens Blank Hospital to see specialtist...It's stressful cause my son doesn't understand what i'm saying or anything his mind is of a 6-9 month old babies...The dr has always knew that my son had that but never informed me she has always told me he had Torticollis which he had but got better but nothing else...He just started walking but limps his feet goes outward he has trouble chewing foods & swallowing he eats some baby food & soft table foods...He doesn't say any words yet just dadda To everyone with this...How do I get him 2 listen 2 me It's hard he's into everything all he does is dump toys out & throws them than repeats the same thing over & over

Ellen - posted on 04/07/2010

My son was born supposedly 3 days overdue ( I still question that) after being induced. He had 3 hours + of O2 deprivation due to a misdx prolapsed cord.I then had an emergency c-section. He spent everyday of the first 9 months of his life crying, and he was finally dx with seizures at 18 months. They are now gone with the meds. He is now 5 years old and a happy boy, but still cannot sit, or walk or talk, or use his hands functionally. He is possibly going to have to get a g tube soon, but does eat some toddler dinners. He recently had Botox and we tried baclofen without a huge difference. He gets PT and OT and ST twice a week at preschool. being patient is very hard some days, but it does get better, like everybody else said, when you let go of the preset ideas of what "should be". I hope you have had some progress and are seeing things improve! Good luck! Staying in touch with people who are also dealing with it was a HUGE help for me...

Susan - posted on 03/31/2010

My daughter was born with cerebral palsy (along with alot of physical deformities due to arthrogryposis) 26 years ago.
I also worked as an OT for about 15 years. Does your daughter get PT too? Seems like it would be very appropriate for her to get weekly OT & PT.

Corinne - posted on 03/08/2010

I would really push for some PT as well. Your dd is entitled to more services..you need to be her advocate and push for everything she can get...
Also my daughter did not sit well til she was about 18 mths to 2 years. The hardest part was going to the store..she was too floppy to sit in the carriage so I would bring the infant carrier in and put it on the carriage even though she was a little big for it...she was already in a big carseat so I would just bring the infant seat in the car too...I found the solution to that...made by leachco...a wrap strap...it was wonderful..check it out..like $8 but can help in sitting up in a chair or carriage.
http://leachco.stores.yahoo.net/wrapstra...

Kate - posted on 02/22/2010

My son was born at 31 weeks gestation and he was diagnosed with cerebral palsy at 7 months old. The dostors told me that the CP was caused by an infection. He is going to turn two on March 31. He goes to OT(once a week) and PT(once a week) and he also goes to a toddler program for developmentally delayed children twice a week, all day. He loves going to "school" and he is doing so much more since he started school. He does not sit up on his own yet. Since he started at school he has started to crawl and he enjoys walking in a special walker. His older sister, whom was born at 23 weeks (she is now 4) gestation love to see him crawling and she tries to help him with movement too. All things come with time. Love and be loved.

Vicki - posted on 01/14/2010

Hi I'm brand new to the group and also to CP, just found out on monday our little one has CP. she's 13 months old (ex prem of 13 weeks), she had bleeds during labour which has caused her CP. She has had development delay for a few months now and i have been doing baby massage and yoga on her daily along with exercises from Physio. I've found it all has really helped her come along, just hope it continues to. we're also waiting for a special chair (coming 28.01.10) that will help her sit up and hold her head up so she can play without leaning etc.

You've all written some very informative messages, glad to know i'm not on my own with how i feel.

Vicki xx

Robin - posted on 01/07/2010

Hi I have a 12 year old with mild/moderate cp so I am pretty knowledgable on the subject. I you have questions feel free to ask. Every child is different but a lot the steps are the same. physical therapy, botox, surgeries, AFOs, again any questions let me know.

Claire - posted on 12/20/2009

Our son has slight cp and he coouldn't sit unaided but the physios or ots lent us a corner seat which looks like a triangle with lap belts and a stump in the middle that their legs go either side of which helps to strengthen their backs and keeps the pelvis straight it comes with a table so you can feed and they can play with toys without them having to concentrate on sitting for too long and getting tired. He was about 18months old when he was diagnosed and it was the paediatrician who gave us the diagnosis after everyone told us he would grow out of it. i had to look it up on the internet what cerebral palsy meant it is either an accident during pregnancy or during birth as our son had the cord round his neck 3 times and had to have full resus and spent a week on scbu.thanks claire

Tammy-Lee - posted on 12/01/2009

Quoting Jennifer:

To say that CP is caused from lack of oxygen before, during or after birth is completely misleading. Lack of oxygen can be a cause but it is not the only cause of CP!!!!!

My daughter has CP which was caused by an inutero stroke. We found out 5 days before she was born.

Marikris I just noticed that you posted back in February. .... has your daughter made any progress? There are lots of things we've done with our daughter (mild CP) including botox, phenol injections, hippotherapy, OT, PT. Definitely talk to your Pedi as they are the best resource

My daughter also has CP which was caused from an in utero stroke, but that was caused from a blood clot that got into her brain and cut off her oxygen supply and caused her to have a Left Middle Cerebral Artery Stroke, which is therefore a lack of oxygen. 

Jennifer - posted on 12/01/2009

To say that CP is caused from lack of oxygen before, during or after birth is completely misleading. Lack of oxygen can be a cause but it is not the only cause of CP!!!!!

My daughter has CP which was caused by an inutero stroke. We found out 5 days before she was born.

Marikris I just noticed that you posted back in February. .... has your daughter made any progress? There are lots of things we've done with our daughter (mild CP) including botox, phenol injections, hippotherapy, OT, PT. Definitely talk to your Pedi as they are the best resource

Bobbi - posted on 11/29/2009

CP is caused from lack of oxygen before during or after birth. As long as you keep her limbs from getting stiff through streching exercises and mabye do some muscle strengthing exercises for her torso it will help her progress. Ur OT should be able to show you some of these exercises for your daughter. good luck

Casey - posted on 08/11/2009

Hi. My duaghter is four and has CP. A few weeks ago we went to a developmental pediatrician who started her on Baclofen. I was very cautious about starting medicine but it is actually starting to help. Range of motion exercises are important. You may also think about water therapy. My daughter loves to be in the pool. If she has problems with tightening in her calves and ankles you may want to ask for an evaluation for AFOs, they're braces that can help. The biggest thing you can do is let her know you love her and help her achieve all that she is able to. Don't set deadlines for progress, it just leads to more frustration. Just keep helping her do the things she loves and be sure to let her enjoy life and be a little girl too.

Heather - posted on 05/26/2009

Interesting because I have a very similar story. My daughter was born at 39 weeks, c-section after fetal distress, vacuum, forceps, the works. She was diagnosed at 9 months as well. She actually receives ST, OT and PT twice a week. She is 25 months now and she is making progess walking with an assistive device (walker) which she has gotten pretty good at. She has been in therapy since she was 6 months old. It is so frustrating not to know what to expect but you will learn not to listen to the "normal" predictions and realize that all you can do is everything you can to help your child reach her potential. Each milestone will be like a small miracle.

Marikris - posted on 02/13/2009

She's going to start PT soon, she just got in. The OT that sees her comes to the house they just didn't have a PT for my area. Do you have any tips on things to do with her? I do all i know to do like sitting her up and trying to make her stay on her tummy. I had a c-section and she was stuck and they had to use forceps and the vacuum on her. They said it wasn't caused from that so who knows. Thanks for the post!

Michelle - posted on 02/13/2009

I know how hard this is when you do not know what will come next.  It was especially hard for me because my best friend gave birth to her daughter 3 days before me.  My son didn't sit up until he was 14 months old.  Each child will vary.  Do they not have her in PT.  Physical Therapy will truly help her learn how to sit and help stretch her muscles.  That is something to consider.  Have you contacted your local Infant and Children to have them see if she can receive therapy at home.  Instead of you traveling somewhere they will come to your home and do it there until she turns 3.  Another thing she can sense if you are upset, frustrated and this might make it a little bit harder on her.  Remember that we were given very special gifts, because we are strong mothers.  Keep working with her every day and allow extra time.  My son didn't walk until he was 4 and once he did, it was like he has never stopped

Did you have any complications with your pregnancy or delivery? 

HUGS!