Osteogenesis Imperfecta (brittle bones disease)

amother

Fri, Apr 29 2011, 3:16 pm

Are any of you a mother of a child with OI? My toddler is 2 and a half and was diagnosed at 5 months when he sustained a femur fracture. Since it is a genetic mutation (nobody in our family has it) there are not too many people with this. Thats why finding a newtork of support is really difficult for me. If you are a mom of such a child, what are your daily struggles like? How do you send to school? Whos your pediatric orthopedist? Sorry, but I'm posting anonymously since nobody knows about this except my family.

pobody's nerfect

Fri, Apr 29 2011, 4:18 pm

what a shock when I opened imamother and saw this thread!

I don't have any helpful information, really. but I did have a sister, a"h, who had the most severe type of OI. doctors said she wouldn't survive the pregnancy, but she lived a year and a half. I don't remember much, but I've always been very interested in the disease.
I hope you and your family find the support you need, along with the best medical care for your son.

obagys

Fri, Apr 29 2011, 4:25 pm

I don't have much to add either, but famous author Jodi Picoult wrote a book called Handle With Care. It is completely fiction, but deals with a child who has a severe form of OI. She does extensive research for all of her novels and there may be a listing of websites and resources documented in it - worth taking a look.
I hope you are able to find your son the best medical care possible, hatzlacha.

Mommy3.5

Fri, Apr 29 2011, 4:48 pm

losingweight wrote:

Dr. Tepler in flatbush has experience with OI. Maybe he can give your number to another parent that he knows is dealing with the same issue.

doctors are not allowed to give out numbers of patient or share that kind of information.

OP I hope you can find the support you need.

Happy18

Fri, Apr 29 2011, 4:56 pm

I suggest you do not read the Jodi Picoult book!!!!!! The story is fiction and while the author may have done research on the topic if your child has IO I would strongly recommend against reading the book.
The ending is tragic.

pobody's nerfect

Fri, Apr 29 2011, 4:58 pm

I agree with Happy18. do NOT read Handle with Care. It is very intense, has a terrible ending, and anyhow is about a girl with the most severe form (what my sister had) which is not, from what you've written, what your son has.

mominlkwd

Fri, Apr 29 2011, 4:58 pm

Mommy3.5 wrote:

losingweight wrote:

Dr. Tepler in flatbush has experience with OI. Maybe he can give your number to another parent that he knows is dealing with the same issue.

doctors are not allowed to give out numbers of patient or share that kind of information.

OP I hope you can find the support you need.

It's possible the dr. will ask another parent if they would be willing to give our their information or have them contact her directly. I don't think that's wrong - although I could be mistaken.

I don't have any advice but I also hope you get the support you need and Hug

(a bit of imamother support to tide you over)

MaBelleVie

Fri, Apr 29 2011, 5:02 pm

I assume your child would be eligible for a state-funded medical para when he's in school. Does anyone have experience with the process of getting one?

Eta: I once worked in a public school. One of the kindergarten children had a certain disease, and he was given a medical para to make sure he was safe at all times. His disease did not involve as many risks as oi, which I why I assume oi would be covered as well.

Chana Miriam S

Fri, Apr 29 2011, 5:18 pm

Happy18 wrote:

I thought the ending was stupid. And pretty much the same as My sister's keeper. House rules was also idiotic.

To the original poster, I wish you hatzlacha raba and also much chizuk. No doubt your child will continue to be a source of joy, even with the challenges.

Barbara

Fri, Apr 29 2011, 5:19 pm

Mommy3.5 wrote:

losingweight wrote:

Dr. Tepler in flatbush has experience with OI. Maybe he can give your number to another parent that he knows is dealing with the same issue.

doctors are not allowed to give out numbers of patient or share that kind of information.

OP I hope you can find the support you need.

But nothing would stop a doctor from contacting a patient and asking if s/he would be willing to contact the OP. The doctor may or may not feel comfortable doing so. The doctor may also be aware of advocacy or other support groups.

Here's the OI Foundation's Site:

http://www.oif.org/site/PageServer

Which apparently has a social networking component that may allow OP to connect with other parents.

OP, wishing you and your child strength and love, ans praying for a breakthrough.

amother

Fri, Apr 29 2011, 6:06 pm

OP here. I have been to the OI foundation site....and NO, I would not ready Jodi's book. My son is diagnosed with Type 1 (there are four types with 1 being the "least" and four being deathly)So my son will definitely have a regular life except for all the fractures he endures (he's had a number of them already) But because its so rare...the kind of worries I will have when sending him off in September is a rare kind of worry...will he trip and fracture...will a kid push him down... He can't play at a playground setting....I am looking into a PARA...and he is currently receiving PT....And if you'd see him..you'd never know at all.....

obagys

Fri, Apr 29 2011, 6:10 pm

I should clarify - I was not suggesting that the OP read Picoult's book, I was suggesting that she flip to the part that has all the resources she used for her research, which I thought she provided IIRC (maybe not). I thought maybe there the OP could find something helpful (a link, a website, whatever).

Isramom8

Sat, Apr 30 2011, 5:09 pm

Picoult's book also discusses kids with Type 1, and could be a wealth of direct and indirect pertinent info about daily life. The OP could possibly glean what is helpful, and skip over what would apply only to a child affected more severely. There may be some overlap of affecting issues.

My friend who has CP had kids in her special-needs school with OI. She says their lives were normal, only once in a while an ambulance was called for a fracture. All in a day's education.

themom

Sat, Apr 30 2011, 11:55 pm

My friend has it, she got it from her father. He had a mild case and she and 2 of her siblings have mild cases. One brother has it worse and limps badly. She lived a very normal childhood other than dislocating her knee every once in a while. She is married with 5 kids. Pregnancy is hard on her, she fell with the last one and broke her leg but she managed to pull through. She takes a nap every afternoon and lives a fully functional life as a working mom of 5 kids.

happyone

Sun, May 01 2011, 1:23 am

Chai lifeline has some children getting services through them with OI, and can link you to those families. Call 212-465-1300 or PM for a direct number to someone who can help you.

Bella:D

Sun, May 01 2011, 1:49 am

I had a camper at sleep away camp last summer who had OI, he probably had the mildest form because his parents let him go to sleep away camp in the first place he was 9 I think
We were warned that he had a disorder that made his bones brittle but he was basically allowed to do just about everything the other kids were doing.
He lives a pretty normal life so G-d willing so will your son!

amother

Sun, May 01 2011, 1:58 am

I have a 4 year old dd with a chronic illness (not OI) and after finding no formal resources for this specific condition within the frum community, I asked our pediatrician (who is frum) if he knew of any other family dealing with it and he put us in touch with another family. He actually called the parent while I was there and asked if it was okay if he gave me their number.

I also agree with the above poster about calling Chai Lifeline. We were actually initially approached by them (a friend of ours works for them) and they have been a really wonderful source of help (mostly with information, but offering a lot more).

Otherwise, I found online forums for discussions about the illness and I've used that to post questions and issue that we've had to face, and I found a lot of the information and advice to be very helpful. I did a search for the illness plus discussion forums and found quite a few, some more active than others. You sometimes get some weird people on those sites, but no worse than imamother Wink

Hatzlacha.