Osteogenesis Imperfecta Support Group
Osteogenesis imperfecta is a group of genetic bone disorders. It is one of the brittle bone diseases. People with OI either have less collagen than normal or the quality is poorer than normal. As collagen is an important protein in bone structure this impairment causes those with the condition to have weak or fragile bones.
Not really sure where to start. My baby is 3 months old and is being tested for OI. He was born 6 weeks premature. We have to possibly find this out the hard way. Two weeks ago I noticed he wasn't moving his arm right, I called the doctor right away, they said bring him in. Doctor said he didn't think anything was wrong but sent us for an x-ray to be safe. X-rays showed healing fractures of the long bones of both his arms and legs. We were flabbergasted. To make matters worse the hospital accused us of abuse. Children and youth services came to the hospital, we told them everything about how we called the doctor and ect. They said that our son looked healthy. Mind you that our son has never had a bruise or mark on him what so ever, except from IV's he had received at birth. He was hospitalized after birth for two weeks. Being that he is premature he has seen the doctor several times since birth, the doctor even said himself no bruises or marks all visits routine. We took him to childrens hospital the next day, I had enough of our local hospital and their accusations. Childrens did all the normal tests, cat scan, full body x-rays, blood work, ect. They also did an eye test, which he has the blue around his eyes, which is a sign of OI.
Skip to last Tuesday. Baby had to stay with my cousin which is their "safety plan". They then came the morning we were supposed to meet with the case worker to see if he could come home or have to stay there. Well, they rather took him and threw him in foster care!!! I'm hysterical at this point, and totally helpless. They gave us a 72 hour hearing which was to decide where he will go. Stay in foster or with family. Our lawyer (who is our very good friend) went in and came back out about 15 minutes later and said, they're going to drop the charges IF we agree to take parenting classes (SLAP in the face) and my husband would have to have his mental health evaluated (all because he was upset over this). Baby couldn't return to my cousin but could go with my lawyer and his wife. We agreed it would only be a few weeks max, and would be up to our friends when he could come home. We get through the weekend and my friend calls them to see what the "plan" was. Suddenly they're singing a different tune. NOW they want the test results before we can have him back. THIS was not what we agreed upon. I don't understand how they can lie like this and change what they want because they can. If my child has this disease he needs to have it treated as soon as possible and we can't even start that because we have them all over us. I'm utterly devastated, how can I ask God to have my child be sick? But it's the only way to prove to these people that we didn't hurt our child. Last year we lost out daughter at birth, I know the pain to lose a child. This is the same feeling I'm having right now. I cannot handle this, my children are my reason for breathing, we worked so hard to bring them into this world. I battled placenta previa (placenta lays on the cervix) with his pregnancy, so it was very hard doing bed rest and taking care of our 7 year old.
I started on this website to try and get information on anything about this. I have researched a lot of things and came across something called Temporary brittle bone disease. I'll attach the link, it's the EXACT same case. Help me please any information is needed.
The link:
http://archive.newsmax.com/archives/articles/2005/10/5/125542.shtml
Skip to last Tuesday. Baby had to stay with my cousin which is their "safety plan". They then came the morning we were supposed to meet with the case worker to see if he could come home or have to stay there. Well, they rather took him and threw him in foster care!!! I'm hysterical at this point, and totally helpless. They gave us a 72 hour hearing which was to decide where he will go. Stay in foster or with family. Our lawyer (who is our very good friend) went in and came back out about 15 minutes later and said, they're going to drop the charges IF we agree to take parenting classes (SLAP in the face) and my husband would have to have his mental health evaluated (all because he was upset over this). Baby couldn't return to my cousin but could go with my lawyer and his wife. We agreed it would only be a few weeks max, and would be up to our friends when he could come home. We get through the weekend and my friend calls them to see what the "plan" was. Suddenly they're singing a different tune. NOW they want the test results before we can have him back. THIS was not what we agreed upon. I don't understand how they can lie like this and change what they want because they can. If my child has this disease he needs to have it treated as soon as possible and we can't even start that because we have them all over us. I'm utterly devastated, how can I ask God to have my child be sick? But it's the only way to prove to these people that we didn't hurt our child. Last year we lost out daughter at birth, I know the pain to lose a child. This is the same feeling I'm having right now. I cannot handle this, my children are my reason for breathing, we worked so hard to bring them into this world. I battled placenta previa (placenta lays on the cervix) with his pregnancy, so it was very hard doing bed rest and taking care of our 7 year old.
I started on this website to try and get information on anything about this. I have researched a lot of things and came across something called Temporary brittle bone disease. I'll attach the link, it's the EXACT same case. Help me please any information is needed.
The link:
http://archive.newsmax.com/archives/articles/2005/10/5/125542.shtml
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
HOWEVER please understand that the folks at child services are not cruel inhumane people, they are people who have seen things you and I can NEVER even imagine. There are people in THIS Country (USA) that use their children as sex slaves, so they don't have to work. I know I cant imagine it either, but I knw its true.
My sister is a case worker in Dade County Fl. The cases and rescues she has performed far outweigh a few mistakes made along the way.
Im sure you are AMAZING parents, most parents of kids w/ OI that I have met are far and above EXCEPTONAL, but its an educational process.
For some reason, in FL OI is much more wodely recognized than in other ares. The Military has a good recognition record as well (I was a Navy kid).
Have your kids tested and then spread the word, become the local advocate in your area. Your children should have pretty normal lives, best of all most OI kids are WAY above normal in IQ testing. But unless you are belessed by Drs like I have been, Drs who WANT to learn, YOU will need to become the teachers. This is a low risk disease, we don't have a marathon, heck until a few years ago we didn't even have a T-shirt!
Have your kids tested and learn and teach everything you can. God has blessed you with some amazing kids and very shorty this wll all be just a distant memory
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