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Anyone on Here with Children with Brittle Bones?
Just wondering if there are many in the bump community. I saw one poster, chelsealush, I believe.
DD has Type 1 and it'd be great to connect with other moms of brittle-bone kids.
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Re: Anyone on Here with Children with Brittle Bones?
This is my first time on this board and I can't believe that your post was second from the top! My seven month old daughter has type I as well. How old is your little girl?
Sorry, after my post went through I saw that your daughter is 10 months old. Has she broken anything yet?
Also, my computer is going crazy so if your get this same post six times, I'm sorry!
Yay! Hi!
Yes, she's 10 months and she's broken once - her tibia and it was a hairline fracture. She was in a splint for two weeks.
How about your daughter?
Did hers come about spontaneously or do you or DH have OI?
No breaks so far, which is a miracle as much as she gets her legs stuck in her crib! My husband has it, so she got it from him.
How did you know when dd had the hairline fracture? I've assumed that all of the times I've worried that she has broken something that if I can console her and get her to quit crying and not scream when I push on her, that she is ok.
Does anyone else in your family have it?
My husband also has it and half his family. It was really quite difficult to tell that she had broken, unfortunately. She was starting to pull up (this happened about six weeks ago) and dh was sitting on the floor, holding her hands. She took a step and then her legs kind of buckled and she sat down on one of her legs, funny. She started screaming hysterically - That "I'm in pain!" scream and wouldn't stop for about five minutes.
We thought - Oh, this is it. We get her dressed for the ER and then she sat there, smiling at us. We gently tried to feel her leg and she didn't seem to be in pain. Then, we noticed that anytime we changed her diaper, something about the way we held her legs made her scream. We took her into the doctor two days after it happened and he ordered x-rays. They found nothing. A few days later, we took her back because it was still happening. More x-rays. Nothing. At that point, our pedi referred us to our local Children's Hospital. We took her there and they felt her leg and said, "I think it's her tibia." (Huge relief at this point because we finally have someone telling us that something IS wrong because we knew something was)
They then x-rayed JUST her tibia and found what they thought might have been a very slight hairline fracture - But the big tip-off was that there were spots of bone-regrowth, because at that point it had been 10 days since the break occurred.
I felt so bad for her because it took us so long to figure it out. A big lesson learned - We have approval now, through our hmo, to go directly to childrne's and have met up with an orthopaedic specialist there.
Also, he has scheduled us to come in at 18 months just to have her checked over and evaluated and I guess we'll continue to do that every six months or so after.
I know what you're saying, though - I swear I think that she has broken at least once per day. And my routine is - pick her up, try to distract her, squeeze gently over her limbs.
I am very nervous about the months to come, though. She's now pulling to a stand and will probably start cruising in the next few weeks.
Our ortho specialist told us to expect 3 to 4 breaks per year, once she becomes mobile.
Our DS didn't get it and we are only having two children.
It is so great to talk with someone in the same position!
We have had quite a few of those awkward falls (she loves to stand) and like I mentioned before, legs stuck in the crib, but none of them seemed to bother her five minutes later. Of course, she isn't walking yet so there are thousands more to come.
She loves her jumperoo and I make her wear shoes in it now because the first month she used it she jumped with the top of her feet (toes curled under) for some reason. I know the breaks will happen, and I am probably getting my hopes up, but with all of the small incidents she has already had that have not led to breaks I am hoping that means she is on the mild spectrum of type I.
My husband is the only other person in our family who has OI, and he didn't get diagnosed until 8th grade. However, I think that is mostly because of small town doctors. Once he finally started seeing 'good' doctors, they told his parents that he was going to break whether they locked him in his room or they let him go outside and live his life. So my husband grew up having dirt bikes, go carts, and running cross country. Surprisingly the cc is the only one of those things that he broke bones during! I hope that we will be able to do that for Josie, maybe not to some of those extremes, but that this diagnosis isn't going to rule her life.
I still want to have another baby, but my husband feels incredibly guilty for passing this on to Josie, so I don't know if we will or not. Some of my coworkers have told me I am being selfish for wanting to bring another child into this world knowing the risk, but the way I look at is 1) my husband went to college, got a great job, is married, we own our own home that he maintains... NONE of those things have been impacted by OI! I have never once heard him say, "I can't do that." Not once!2) People with diabetes, high blood pressure, etc don't think twice about having kids... well those things are hereditary too and can be way worse than OI. Josie is going to break her arm and leg every once and a while. That's it. Then again after all that's said, I think, maybe they are right. How incredibly selfish of me to have another baby who will suffer the pain of broken bones. My husband already feels guilty the way it is, how could I make him go through the diagnosis of another baby? How is he going to handle Josie's first break when he already feels bad now? (Of course, now I am crying,) It's just hard for me to imagine my husband not being here because he has a wonderful life despite having OI!
So far we have only seen her pediatrician on the regular 2,4,6 month schedule. He will only manage the 'normal' kid stuff. We got diagnosed through Riley Children's Hospital (we live in Indiana); they have a Bone Dysplasia Clinic there that she will go to for all of OI stuff. Her first appt is in January. The geneticist told us that there are new treatments out now that they didn't have when my husband was a kid and that he could benefit from them now. So I don't know what all this appt will involve, but looking forward to it.
I'll respond more completely at naptime but yes, my husband has had some hearing loss, but it's been gradual and not very much. He's 37 (a bit older than I am). How old is your husband? DH's mother lost her hearing, except for about 8% in one ear, when she hit puberty. DH has two other siblings (of a total of 5 children) with OI and one of them has hearing loss (She lost it all, overnight, at puberty) and the other has just slightly diminished hearing loss.
I don't have any experience or knowledge of the procedure... can you explain it to me?
Honestly, the hearing loss is way more of a concern for me than the breaking of bones. But again, technology is improving all of the time.
My mother in law and sister in law had cochlear implants - Sister in Law's worked great but Mother in Law's didn't take.
Everyone in DH's family who has OI is a successful, really intelligent, productive person. I don't think OI is a reason to limit your amount of children. I think that a new mindset needs to be developed... OI just happens. I think perhaps my DH has an easier time with it because half his family (cousins, nieces, nephews, etc) have OI so it's just not a big deal.
Okay, I went on a bit more than I had intended but I'll still post more at nap.
A bit more...
In DH's family, the severity ranges greatly. They are all Type 1 but some of them have only broken 2 or 3 times (not counting fingers and toes... they said "those don't count" LOL). DH has broken, like, 30 times. He doesn't participate in sports. One of his cousin's (who has oi) has a daughter with oi who is 5. She was breaking ALL the time so they have started on her some kind of treatment. They are giving her "phosomax" (spelling?) which is given to older people with osteoperosis. I guess they give it in rounds so that she's not constantly on it. It appears to be working well for her.
DD has had lots of incidents where I thought she would have broken and didn't. I'm hoping that hers isn't all that severe but there's no way of knowing yet. In a couple of months, when she starts walking, will be the true test.
Our kids are really close together (51 weeks...) but we were both mentally okay with the fact that one of them might end up with OI. I had some guilt after DD was born but I think that was more my hormones wreaking havoc than anything. It was pretty fleeting.
One thing you could consider if DH isn't thrilled with the idea of having another child with OI is giving it some good spacing in between kids. Waiting until Josie is 3 or 4 before having another one so that you can really explain to her to be careful and she'll be able to "get that."
We just kind of wing it with ours. I'm actually going to be swapping some car seats around this weekend because DS has started grabbing DD's feet while they're in the back. I've got them both rear-facing and she's in the middle, he's on the driver's side. I think I'm going to separate them but it's a hard call. I'd really prefer her being in the middle, in case we get into a crash.
Like you said... OI is not a big deal. It sucks and it's less than ideal but it's not debilitating. DH has a great career, has been there 14 years, he's providing for his family. And, from what I've seen, people with OI are so, so intelligent.
It made me laugh when you wrote "fingers and toes don't count", my husband says the same thing!
DH just turned 30 and his hearing pretty much went away over night as well, just about a year ago. From my understanding the stapedotomy procedure is where they go through the ear canal and use a CO2 laser to vaporize the stapes bone and then replace it with a prostesis. It is considered an 'overnight outpatient suregery', which basically means we stay in the hospital 23 hours or less for insurance purposes. Our doctor is one of the three surgeons who were taught by the doctor who invented the procedure. He has been a speaker at the OI conference a couple of times talking about OI hearing loss and this procedure. So we feel very blessed that we were lucky enough to be referred to him. He said that the majority of OI hearing loss is because a fixed stapes (it doesn't vibrate anymore), DH has a CT scan next month to determine if his is fixed or if there is just an air gap between the two bones. The doctor said either way he should be able to fix it, he just wants to know which one he will be dealing with before he gets in there.
We have had a couple of conversations about having more children, the last one he said we should wait until Josie is a little older and see how bad she is before we have anymore. I can handle that.
What type of car seat do you have? DD is still in her graco 25, but I have a feeling after winter she will be too big for it. I ordered a bunch of information packets from the OI Foundations website and they recommended the Britax brand (of course this information isn't anywhere on their website, which I had every word of before Josie was born and would have bought this brand for her first car seat as well).
Is there a correlation between OI and intelligence? I just thought my DH was really smart! Haha I haven?t read anything about above average intelligence. That?s interesting.
Are there any issues in your family between siblings who have OI and those who don't? DH is the youngest of 3 and there has never been an issue between them, to my knowledge, but it is something I've thought about. Will the child who has OI have resentment towards the one who doesn't or the child who doesn't have OI will be jealous of all of the attention the child with OI gets.
How frightening about your husband's hearing! I really can't imagine. What have you heard about your DD's hearing? We were told to have DD's hearing checked at 5 if I don't notice any problems before then but that problems usually start around puberty or early 20's. It sounds like the surgery will help your DH, though - wonderful!
Supposedly those with OI generally have a higher IQ. Some people seem to speculate it's because their physical abilities can sometimes be somewhat limited so their minds are more active. Two other random things I've heard can be 'side effects' - Excessive sweating and constipation. I'll have to check out the website you mentioned and order some pamphlets. The ones given to me from our ortho didn't seem to be all that informative.
We went with Britax for the kids. I got this one on clearance for $79 https://www.target.com/s?searchTerm=britax+roundabout+50&category=0%7CAll%7Cmatchallany%7Call+categories
(in store). If you like the pattern, keep your eye peeled because it goes down to $100 frequently on Target's website.
We plan to keep her (well, and DS) rear-facing until she maxes out the weight and then I'm pretty sure we'll pick up a Britax Marathon which accommodates up to 70 lbs.
Had I not gotten the seat on such a good deal, I'd probably have just gotten a Marathon to start out with, though. Looks like they run in the low 200's.
No issues between the siblings with OI and those without. I'm sure they all felt inconvenienced, at times, as kids but everyone gets along very well and DH has never said they had any problems. They are a really, really happy group of people and it's very reassuring for me to see that when I start to worry about DD.
I started reading some excerpts (on Amazon) from a book called, "Handle With Care," about a girl with OI and how it effects her family, etc., and what I read seemed really negative. It was pretty off-putting.
When our first born was four weeks old, DH fell down the stairs (We now live in a one-story) and broke his knee in two places and tore his acl. It was a tough time and his family really came through for us. They brought over the "family wheelchair" and brought us meals, etc.
Some things for the future that we've talked about. I plan to go into the kid's classrooms at the beginning of the school year, explaining the disease to the teacher and also to the students. DH's siblings, who have children with OI, did this and they said it really helped. We'll also plan to make special arrangements with P.E. and make sure she's not engaging in anything that would be a bad idea... soccer, etc.
I know it sounds bad because I wouldn't wish this on either of my children but I do feel that it's 'better' that DD has it rather than DS. Boys can be so rough.
Also, I hope that DD is... different than DS. He has always been such a dare devil... started climbing on everything as soon as he could walk. He's very coordinated, fortunately but I'd be happy if DD was a bit more calm.
DH hearing wasn't really a big deal to him. He actually thought his ear was clogged because he had been sick, but when it didn't get better he saw an ENT. No infection or build up, just conductive hearing loss. The ENT is who referred us to our surgeon, but it took us a year to actually make the appt. 2011 was a little stressful. We got pregnant, sold our house, moved into an apt, built a house, and both started new jobs!
DH and DD are both sweaters! I had worried about what I was going to do for winter with DD, but long sleeves and blanket and she is on fire!
I read Handle with Care, it was ok. I normally love Jody Picoult, but I was really disappointed with this book. The little girl has OI type III.
All of the pamphlets on the OI Foundations websites are free; you just have to order them. (I ordered ALL of them! Even the ones for medical professionals. haha) Our pediatrician said that the parents of children with rare diseases become the experts of their child's care, so I thought the more I read the better! I thought they were very informative.
I was really nervous about the dental aspect of OI. Thankfully DD doesn't have it (my opinion, she didn't have teeth at her last appt so no one has officially told me). My husband has really weak teeth, but after reading through the pamphlets I think that he just got that from his dad and it isn't the DI.
The one book I did buy for from OIF is called "Emily's First Day". It was written for type I parents to take to school and read to the class. In the back it has a lot of information for the teacher/school as well.
Our best friend's 11 month old little boy has started climbing out of his crimb and falling onto the floor! I didn't know that was even possible! I'm terrified! Hoping you are right about only the boys being dare devils!
Sorry forgot, DD passed her newborn hearing screening and that is all we have had her tested for. As of now, I don't think we will do anything extra for her hearing unless we notice a problem.
Oh, I'm sure it's not only the boys who are dare-devils! All I can say is to be super proactive about lowering the crib. DS, with as much climbing as he has done, has never attempted to climb out of his crib.
They do have these available.... https://www.amazon.com/Tots-Mind-Cozy-Crib-White/dp/B00014PLAY/ref=sr_1_1?ie=UTF8&qid=1324070697&sr=8-1
if needed but I can't imagine actually using one. It looks like some kind of bizarre torture device.
I'll tell you one thing to be prepared for, which I wasn't - When you have a baby with a broken limb, it's pretty much like having a sign on your back that says "I'm a child abuser," because during the two weeks DD had her splint on, I got the WORST looks from random people while we were out and about. Fortunately most medical professionals are aware of the disease and the blue sclera is a dead-giveaway. Does your DD have it? Most of Dh's family does but one or two (with oi) do not.
DH has some teeth that look a bit transparent in spots but doesn't have any major dental issues.
DD's teeth look fine to me but I haven't had her pedi look at them yet. He did tell me that if DI were a concern, the teeth would look pretty mangled from the get-go.
Another question I have for you. You mentioned co-workers, so is DD in daycare?
If so, did you have any trouble finding a place/person who was willing to accept her, being that she might be considered a 'liability'? Do you find that they were accommodating?
We plan for me to stay home until the kids are in school but you never know what could happen and I am wondering how things will go when she begins attending pre-school.
I love the cage!! That is too funny! Good to know there is an option if it comes down to it!
My DH parents were accused of child abuse before DH got his diagnosis. Thankfully it was quickly resolved without a lot of drama. I had DD's genticist write a letter confirming her diagnosis to try to avoid the alligations and there is a copy: in my diaper bag, my car, DH car, MIL and FIL's cars, my parents cars, and at her pediatrician's office!
Both DH and DD have the blue sclera. We had to wait 3 months for an appt with her geneticist and then the 8 weeks while the lab work was out to confirm the OI, everyday I looked at her eyes and prayed 'please be white, please be white!'. Obviously, they never turned white.
DH also has some translucent spots, but from what I've seen on google images and read from OIF, it's pretty obvious if they have it. The good news is it is worse in their baby teeth, so if your DD's baby teeth are pretty and white than she is good to go and she won't have it with her adult teeth either!
Unfortunately I went back to work when DD was only 7 weeks old (remember when I said we built a new house... working stinks, but I do have my dream home, so I guess it's ok!) The good thing is I am a nurse and work weekend option nights, which means that I work 7p to 7a every Saturday and Sunday night. So my DH watches DD while I'm at work and no day care for us! It has been WONDERFUL!!! I get to be home with Josie all through the week, but still get the 2nd income.
The thought of daycare is terrifying. Our back up plan was I would work full time (3 days a week, 7p to 7a) and we would have a nanny at the house. That way I'm still there, just asleep upstairs. But thankfully, the weekend option has really worked out for us.
I haven't even thought about preschools not wanting to accept her because of liability issues... new worry, thanks! haha
Ok, well DD just woke up, so I'll be back after bedtime!
Daycare terrifies me, too - for both kids, though. That's awesome that you are able to work your schedule like that AND have the dream-home!
I was talking with DH tonight about the surgery your DH is going to be having - He said one of his nephews had it and it worked beautifully. Apparently MIL also had it and it didn't "take" - But neither did her cochlear. She can read lips, AMAZINGLY, though and has about 8% hearing in one of her ears which is just enough to get along well.
Good to know about the teeth! We took DS to the dentist for the first time at around 20 months but I plan to take DD shortly after her first birthday, just to be on the safe-side.
My LO does not have brittle bones, but I just wanted to say my thoughts are with you all! My DS had numerous delays and medical issues, so I know we all have our struggles:) But what you are dealing with is very tough and scary so I just wanted to say I admire your strength and that both of you LO's are precious!!!
Good luck with everything !!!
My LO does not have brittle bones, but I just wanted to say my thoughts are with you all! My DS had numerous delays and medical issues, so I know we all have our struggles:) But what you are dealing with is very tough and scary so I just wanted to say I admire your strength and that both of your LO's are precious!!!
Good luck with everything !!!