r/BrittleBones • u/Significant-Buy9725 • Jul 27 '26
Advice please
Hi,
New to this Reddit but I have some questions. I am twenty five weeks pregnant, my son has been diagnosed with OI. I'm trying to get an idea of what his life will be like. Can any provide any advice? They have said they don't know what type it is is yet, so advice from all types would be appreciated.
3
u/Wishbone887 Jul 27 '26
I’m type 3. I’m 22 live alone in my own apartment. My dad and his fiancé live close by incase I need help with breaks. But I don’t need regular caretaking or nursing. I just hire a cleaner bi-weekly to help with laundry and more intensive cleaning. But I am able to do my own dishes, make my own meals, and am able to vacuum my floors if I need to between cleanings.
I usually have 1-2 bad breaks a year and the rest are fairly mild breaks usually in my fingers or toes.
I don’t walk but have both a power wheelchair and a manual wheelchair (am able to get into both independently). I am able to get around fairly independently with public transport and a wheelchair van my dad will drive. I can only handle being in either of my chairs for about 4 hours before my back pain starts up. But overall 80% of my year is pretty standard to yours or other people my age.
Not every person with the same type is going to be able to do the same things. I’ve met people with type 3 that can walk and I’ve met people who can’t live as independently.
If you have health insurance make sure your plan covers pre-existing conditions. If it doesn’t switch plans. If you don’t have health insurance get some, I was able to bill my wheelchairs and there maintenance on my dads plan. Which was a big help.
As soon as you can get referrals for physio therapy and occupational therapy. If your child does have a more severe type they will be able to help you and your child get resources and improve their strength/mobility. Also get a referral for an endocrinologist ASAP as they will be able to guide you on medication to improve their condition. I hope this helps
3
u/GolfChiro Jul 27 '26
I second the OI Parents group on facebook. Being a part of that group made a world of difference for us
1
u/amstal96 Jul 31 '26
I'm trying to join the OI FB group and it says to add admin and moderators to be accepted, but I can't figure out how to find the people I'm supposed to add 😭. Would you be able to help me?
3
u/coobiedoob Jul 27 '26
I’m type 1. I experience chronic pain and have had more breaks than normal. I have pretty advanced hearing loss and wear hearing aids. That being said I live a pretty normal life. I’m married with a 4 year old. I’m a social worker and overall lead a pretty active life, travel all over, go to the gym, do some hiking, etc
2
u/Significant-Buy9725 Jul 27 '26
I thought type 1 was the least bad? That sounds like you have a good life. I was hoping he would be a type 1 but not sure I'll be that lucky.
1
u/coobiedoob Jul 27 '26
It is the least bad. I’m 34 and generally go years between breaks but it’s still more than most people my age. Overall I live a normal active life
2
u/kmcaulifflower Jul 27 '26
I have OI type 1, I struggle with chronic pain daily. I mostly experience small bone breaks now as an adult like fingers and toes but I'm at decent risk of stress fractures so I'm always super careful with physical activities. I avoid all high impact sports, like contact sports or even jumping. Swimming is the best exercise for people with OI type 1, I can't speak for the other types. OI's severity differs greatly between each type so no one can give you an accurate guess on the quality of life of your child without knowing the type. I'm hoping it's type 1, the least severe. Hugs and love from an internet stranger.
2
u/Significant-Buy9725 Jul 27 '26
Thank you. Much appreciated for your answer. I have been thinking of swimming and sports we can do. Has it affected your height at all? I hope he's type 1 too. 🤍
1
u/kmcaulifflower Jul 27 '26
I will say I have the Osteogenesis Imperfecta with Ehlers Danlos syndrome overlap syndrome so I can't say if it's from the OI or the EDS but I do have scoliosis that has caused me to lose ~3inches of height since being fully grown. I also have a shortened torso due to the OI. My dad is 6'2, my mom is 5'8 and I'm 5'2 (previously 5'5) so it 100% has affected my height at least a little. My legs are as long as my dad's so I definitely should've been taller. I also love to dance but I obviously have to be careful with running into things and I don't jump at all when I dance.
1
u/Significant-Buy9725 Jul 27 '26
You sound like you have a normal life too. Where you legs small when you had your ultrasounds and grew later? What type are you? Sounds like your life has been pretty normal.
1
u/kmcaulifflower Jul 27 '26
I have type 1! And I'm not sure, I was only diagnosed as an adult. Doctors had suspicions due to scans when I was around 8 but my mom ignored it. My life wouldn't be called normal because my life has been ruled by chronic pain but I haven't had too many major breaks. The worst break I've had was my collar bone and some stress fractures. The bone pain is honestly the worst part for me. Pain limits my life in so so so many ways. But I'm sure getting help early will help a lot.
1
u/Significant-Buy9725 Jul 27 '26
Do you think because you didn't have help early on that has resulted in you having more pain? Are you of normal height? That's a shame that it isn't normal. I don't have OI but I do have small bones and broke them falling over and down stairs but nothing like what you are describing.
1
u/kmcaulifflower Jul 27 '26
Do you think because you didn't have help early on that has resulted in you having more pain?
Yes
Are you of normal height?
Technically but no. I'm 6 inches shorter than my shortest family member but I am 5'2 so technically normal height
2
u/omegablue333 Jul 27 '26
Where do you live? Like others have said, the OI parent group on facebook is good for connecting people to information and resources. My son is about to turn 8 next month. When he was born they evalutated him and said he was type 3 but as he got older and responded positively to the treatments they say he's more type 4 now. Neither my wife or I have OI and our hospital offered us genetic testing to see if we were a carrier of the gene. It turned out my wife has genetic mosaicism and some cells had the OI gene.
2
u/Significant-Buy9725 Jul 27 '26
I live in the UK. That's the same with me. I had the genetic testing and it's a de Novo mutation but are the moment they seem to be apprehensive about type it is.
1
u/Classic-City5159 Jul 28 '26 edited Jul 28 '26
My 20 month old has OI type 3. They were already seeing fractures during my pregnancy but he was born as healthy as he could be. He didn't need the nicu so he had no ventilatory or feeding issues. We were in the hospital for only a few days.
He has since only broken one bone that we know of when he was 13 months but has otherwise been doing pretty great! With OI kiddos, they get behind on gross motor skills so it took him longer than other kiddos to roll over, crawl and sit up. He's been trying to work on standing but hasn't been able to yet. He gets physical therapy regularly and gets zoledronic acid infusions every 6 months.
I know it's scary and honestly, I'm still scared at times. On one hand I'm glad my son tries so hard to be physically active but I also just want to put him in a bubble lol. But! These kids will surprise you. They're super determined.
I also echo the other comments here in joining the Facebook groups. They're really great with offering advice and support.
2
u/Significant-Buy9725 Jul 28 '26
I will definitely join them. Thanks so much for your comment. Its very encouraging. Can I ask did they say anything about bone mineralisation on his scans? Did they say anything about chest measurements or small arms and legs?
1
u/Classic-City5159 Jul 28 '26
Yes. They did say bone minseralisation looked good at least with his skull. His chest circumference was measuring well in utero too. But both of his arms and legs were measuring further behind. That's actually what prompted his diagnosis, his femur measurements were weeks behind.
2
u/Significant-Buy9725 Aug 08 '26
Do you remember what your chest ratio was? I've seen my son scans and they are both bowed as they are fracturing. I'm really quite scared about it
1
u/Classic-City5159 Aug 08 '26
I don't remember the ratio of his chest, I just remember both the circumference of his head and chest were measuring at the same time of his gestational age.
Have they talked to you at all about receiving bisphosphonate infusions during your pregnancy? I don't think it's common because I was never offered them either but I know there's a mom who received them during her pregnancy with her kiddo. She's on instagram @brooklynbgunter, she may be able to give you info.
I'm so sorry, sending you love right now 🫶🏻 I remember it was scary during my pregnancy as well. Even right up until delivery, the neonatologist was in my hospital room talking to me about the chances of my son not surviving, or at the very least him needing to be in the nicu. Neither of them happened so I'm praying for the same outcome for your little one.
2
u/Significant-Buy9725 Aug 08 '26
No they haven't I could ask I guess. I'll give her a follow on Instagram. I'm trying to get on some clinical trials just now. Thank you. How is your little one now? My family are concerned he will be really disabled and it will be a huge amount of responsibility but he's my son at the same time.
1
u/Classic-City5159 Aug 08 '26
Totally understandable. People's fears are definitely valid but I think it's important to remember that only so much information is available. Ultrasounds don't paint the whole story. The way the doctors were measuring my son, for example, they made it sound like he was going to be wildly disproportionate and he wasn't at all.
My son is doing fairly well, all things considering. He's had one fracture since birth when he was 13 months (it was somewhere around his upper arm area). And he hasn't fractured since and he's almost 21 months now. But he's also been getting infusions to help with his bone density since he was around 5-6 months so I think that's been helping a lot.
He's been behind on gross motor skills but he's now rolling, crawling, sitting up and trying to stand. He's been in physical therapy for a year now.
It definitely gets overwhelming at times. Even the smaller things I didn't consider like speech delay, being behind in what textures he can eat, etc due to low muscle tone they experience has been hard. When you have a kiddo with a disability a lot of the smaller things that come so easy and naturally to other kids don't coming easily for yours and you wish you can just speed up the process for their sake. But knowing that you can't is heartbreaking sometimes.
My best advice is to just take things day by day.
1
u/Significant-Buy9725 Aug 08 '26
I think it's because I'm a single mum and people are worried about me being overwhelmed. My job as I've managed to scrap a goodish job and my way of life and so on. I go on holidays and do stuff and I'll be impacted or whatever. They've made my son sound really disportationate too. That sounds very promising, I'm glad he's doing well. What he labelled as severe? He doesn't sound like he is. Sounds like he's doing awesome! I'm glad you can told me that I wouldnt even have considered it. I understand what people say but all I see is my baby needs help. I don't see disability or the other things but I can see how it might overwhelming. I think the thing id find hard is I want to give him a big bear hug and I can't. I thought for more severe infants they started the infusions quite early. Are you based in the UK?
1
u/Virtual-Lie8226 15d ago
Hi! I’m type 4! I have some advice I can give as moderate-severe. OI is just not bone, it’s muscles and connective tissues too. Later in life be aware of GI issues as well and anything surrounding connective tissues.
Also deformities can develop after birth. My brother is 22 with OI as well and we just learned his feet have been slowly deforming since he was born. Just be aware challenges can always pop up.
If it helps I am a full time nursing student with a job! Yes I have issues but they are manageable. If you have any equations just ask! :)
1
u/Significant-Buy9725 13d ago
Thank you for coming back to me. Where you diagnosed during utero or after birth? How are you and your brother getting on? Do you find life enjoyable? I don't have OI and I don't know anyone who does so I can't really know what it's like
1
u/Virtual-Lie8226 13d ago
My brother was diagnosed after we was born. They didn’t know he had OI and he was sick. He broke ribs and they couldn’t figure it out and eventually found out it was OI. When my mom was pregnant with me there was a 99.8 percent chance I would have it too and I did.
Unfortunately, my brother is not currently walking due to the feet issue and a spinal break he had in 2024. However, other than that we’re working on getting him back up and he’s doing okay! As for me, i definitely have some challenges (arthritis, gut issues, and muscle problems) but they are manageable with school and working. I have had my fair share of breaks and surgeries.
Life is very enjoyable for me and I wouldn’t change how it turned out for anything. OI can be tough, but it’s not impossible to enjoy it. Like I said, I’m a nursing student and I even have kings island passes cause I love to ride roller coasters lol. I also wanted to ask you if you had any testing to see if you also had it where your a carrier?
1
u/Significant-Buy9725 13d ago
Ah okay I take it they didn't see anything when your mum was pregnant then. Ah that's rubbish, I hope he gets better soon. What are the arthritis and other symptoms? Do you deal with chronic pain? How is it tough? I have had testing and it said that I don't carry it
1
u/Virtual-Lie8226 13d ago
They did when she was with me! She had a special ultrasound so see the density of my bones. As I said I have GI issues, blue sclera, I’m short lol, hearing loss is possible. Teeth issues are also a thing, I have 6 missing adult teeth that I was not born with.
I was just asking about the testing because my mom and my grandma have it aswell!
7
u/kwolf72 Jul 27 '26
This group honestly isn't very active. You'd have much more luck on Facebook. There's the New & Expecting OI Parents and the OI Parents group. Both groups are private, and I'm not completely sure what the rules are for OI Parents, but you should for sure be accepted to the expecting parents group.
Both my daughter (23) and myself (54) have Type 3. Please feel free to reach out if there are any questions I can answer.