A.H. asks from Harrison Township, MI on August 20, 2009
Our 17 Week Old Baby Girl Has Been Diagnosed with MILD Cerebral Palsy (CP).
I am still in shock at this point. My husband and I adopted a baby girl who was 10 week early. She was born at 30 weeks and weighed 2 lbs 11 oz. At the time she was born, she needed a ventilator for a very short period of time and was in the NCIU for about 9 weeks. Every since I can remember, the DR. said that she has a tightness in her left hip. As of yesterday, the tightness in her left hip has now been clinically diagnosed at CP (Cerebral Palsy). We are meeting with a neurologist on Monday and I was just wondering if there is anyone else out there that could offer some support. I am really having a hard time with this! :-(
So What Happened?™
I met with a Ped Nurologist and she said that at this point our daughter does NOT have CP. :-) I thank everyone who wrote in and was there for the support! I have found a new source of support here on Momasource! :-) THANK YOU and God Bless you all!
Featured Answers
G.L. answers from Grand Rapids on August 22, 2009
I have a very close friend with mild CP, we've been close for 18 years and she's in her mid thirties, married with two children. Her's mostly affects her balance and some of her fine motor control although she does walk with a pronounced limp and has issues with her hips (especially when pregnant). She might be able to give you a longer list of issues but it really doesn't come up in conversation.
Point being - She's fine.
More Answers
M.C. answers from Saginaw on August 21, 2009
A., Please check on line to learn about an amazing method of movement therapy called ABM (The Anat Baniel Method) Her work with children has been developing over the past 30 years and she has trained people from all over the country. I'm not sure where you are but in Michigan there are practitioners. I have seen first hand how these miracle workers can take a situation like you describe and turn it around with no pain and minimal time/lessons. In Bay City there is a practitioner named Suellen Bartel who has a website...Revitalize Yourself...please check that out as well. I don't have my addresses in front of me right now but if you want more info you can reach me at ____@____.com and I can get more info to you. My neighbor's 6 month old was favoring his left side, not rolling on it...they said it was a hip problem and they would send him to physical therapy. One ABM lesson and his hip was fine, the doctor saw him a few days later and was in shock...didn't refer for anything. Worth a try!
B.C. answers from Detroit on August 21, 2009
A.-If it's mild just do what they recommend to keep her hip range as normal as possible. I do PT and have treated many CP kids and adults. The more you treat them normally and keep them loose where they are tight they do well. If it's mild you'll do fine too. Don't worry just follow the guidelines and enjoy her.
BeckyC
S.S. answers from Lansing on August 21, 2009
I have absolutely no experience with this. All I can say is that I will pray for your family. Good luck.
G.L. answers from Grand Rapids on August 22, 2009
I have a very close friend with mild CP, we've been close for 18 years and she's in her mid thirties, married with two children. Her's mostly affects her balance and some of her fine motor control although she does walk with a pronounced limp and has issues with her hips (especially when pregnant). She might be able to give you a longer list of issues but it really doesn't come up in conversation.
Point being - She's fine.
K.V. answers from Grand Rapids on August 21, 2009
Of course you're having a hard time with this. That is soooo normal. No parent wants to hear that their child has a diagnosis. Give it time to sink in. I have a child with multiple impairments so I know.
Make sure you start early intervention whether it's private or you go with Early On through the state of Michigan. The earlier you work with OT/PT the better.
There is a little girl in my son's therapeudic horseback riding lessons that has mild CP. Her mom says you only notice when you spend an extended period of time with her. She is doing great!
The shock will subside. Give it time to sink in. If you're angry about this, be angry. If you're sad about this, be sad. It's ok.
M.F. answers from Detroit on August 21, 2009
Can't offer any life experience, however my thoughts and prayers are with you and your family. Have some faith and God will help you through this.
D.G. answers from Detroit on August 20, 2009
My heart goes out to you. My son was born at 26.5 weeks and spent 10 wks in the NICU, had the vent, etc. and also has mild CP. He is now almost 2 years old and amazing! We do work hard with him with the PT and OT but that is mostly to keep him on track. If it is any consolation to you he is talking, walking, and a total sweetheart. Be careful reading the internet - people do not post happy stories on the internet and there isn't a lot out there on mild CP. Please feel free to contact me and I will forward you my phone number if you want to talk or need any advice on the insurances and services available to you and your sweetheart. By the way - I also had a 2 year old when I brought my little one home - you are busy! You and your family are in my prayers.
R.L. answers from Grand Rapids on August 21, 2009
I am so sorry. I have 2 daughters with Mitochondrial disease, one who has it more involved than the other. When you first get a diagnosis it can be heart-breaking and scary and so many emotions at once. Let yourself cry as much as you need and then pick yourself up and brush yourself off and get ready to take one day at a time.
I would look for the cerebral palsy foundation http://www.cerebralpalsysource.com/Resources/foundation_c... you will get alot of answers there. Also, I suggest looking for a support group with other mothers like http://www.cerebralpalsysource.com/Resources/foundation_c.... If you need insurance help Children's Special Health Care from the state of MI will cover any out of pocket expenses. I rarely rave about services in West Michigan, but I have been very happy with Mary Free Bed's outpatient therapy services, they can help with a wide range of issues. I say all this to let you know that help is out there for you.
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