TravelingChris Posted March 18, 2009 Share Posted March 18, 2009 Hi all, I have written about this before. My primary concern is my youngest who has osteoporosis for unknown reasons. She also has hyperlaxity to some degree. Her older sister has hyperlaxity and is developing mitral valve relapse. We saw a pediatric endocrinologist yesterday who recommended that the youngest take a multivitamin with 400 iu of vitamin d and took some more bloodwork and told us to seek out a geneticist. I am not sure how much I trust her, though, because she didn't ask very many questions and didn't seem all that concerned about my youngest having severe osteoporosis according to the bone scan. Now if she wasn't certain about the validity of the bone scan, I would think she would order another one done the way it should be done (acording to her). She is thinking her vit d levels are low and is checking some other things like parathyroid levels. In the meantime, she thinks I should take both girls to a geneticist. Now my questions is how to do this. I have had the older girl checked for OI when she was a baby (she had blue sclera) and they ruled it out due to non-history of my husband or me. (Now I have read that some OI people don't get all that many fractures and I have had nine or 10 in my life, so far). Then last summer, we took girl #2 to a genetecist and she ruled out ehlers-danos syndrome though she never observed girl#1 who has even more laxity. Fine, I am not looking to have these girls labeled but rather helped. The endocrinologist yesterday mentioned genetic problems like Marfans but none of us are very tall and the girls are fully on the average size in height. Nor do anyone of us look like basketball players or Abraham Lincoln. SInce I now live in the DC area, I could go to the NIH, to John Hopkins, to a special center that deals with OI, to a specialist in Ehlers Danos, to a regualr geneticist who thinks that my dd weak bones and other dd jaw, shoulder, hand problems are minor compared to the severe genetic problems they normally see, etc, etc. I have tons of doctor choices and after the dud of an endocrinologist (it turns out that she is a diabetic specialist and probably doesn't know that much about bones) I am perplexed. ANy helpful suggestions out there? Quote Link to comment Share on other sites More sharing options...
vettechmomof2 Posted March 18, 2009 Share Posted March 18, 2009 Well, endocrinoglists specialize in the endocrine system so the tests that she recommend are in line with that. Who referred you to her? Do you have another doc who has any idea of what is going on? What about a rheumatologist? A speciality hospital might be the way to go to try and find out what is occurring. Good luck and best wishes. Quote Link to comment Share on other sites More sharing options...
bettyandbob Posted March 18, 2009 Share Posted March 18, 2009 my ds was seen in the pediatric endocrinology at Georgetown. It turned out he didn't have a problem that needed more follow up. We were there a few hours one day. We saw a couple of MDs and Nurse Practitioner/PhD. Spent most of the time with the Nurse Practitioner/PhD. They were thorough and really good at addressing all my questions. Hopefully, someone who sees the specialists you need regularly will respond. I have more opinions on Neurologists and gastroenterologists, but you don't need those. We like the care we've gotten at the Children's hospital outpatient center in Fairfax (neurology and developmental pediatrics) and we go to University of MD/Baltimore for gastroenterology. Quote Link to comment Share on other sites More sharing options...
JudoMom Posted March 18, 2009 Share Posted March 18, 2009 What about an orthopedist? Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted March 18, 2009 Share Posted March 18, 2009 I don't know what kind of Dr. to go to but I do have to say that I'm surprised that they haven't done a blood test to determine her vitamin D level. Then there would be no more guessing on how if she needs more and how much. Also - usually vitamin D needs to be balanced with calcium intake. Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted March 18, 2009 Author Share Posted March 18, 2009 Yes, sh has had vitamin d levels testing. In June she was high on Vitamin d levels and then she was on the low side in January or February. That can't be the sole cause of her problems since one of her two atraumatic fractures was in August 2008 right after her high Vit d level test and when she was living in Florida and swimming outside every day, usually without sunscreen. Quote Link to comment Share on other sites More sharing options...
Michelle in AL Posted March 18, 2009 Share Posted March 18, 2009 Hi Christina, has she been tested for renal rickets? With this her calcium levels could be normal. It would show up as low phosphorus. Did they do a phosphorus level? If not, a nephrologist or an endocrinologist (which you've already seen could help). Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted March 18, 2009 Author Share Posted March 18, 2009 Yes, her phosphorus levels were normal. The only things different with her are that her second vitamin d levels are low, her creatinine level is slightly low, her IGA level is high and her creatinine/BUN level was off but only as an 11 year old and not as a 12 year old. Quote Link to comment Share on other sites More sharing options...
Laura Corin Posted March 18, 2009 Share Posted March 18, 2009 Do you have a trusted generalist who could help you navigate this? It sounds as if you need some expert help with direction. Best wishes Laura Quote Link to comment Share on other sites More sharing options...
kalanamak Posted March 18, 2009 Share Posted March 18, 2009 Hi all, I have tons of doctor choices and after the dud of an endocrinologist (it turns out that she is a diabetic specialist and probably doesn't know that much about bones) I am perplexed. ANy helpful suggestions out there? Usually osteoporosis in children is addressed by an endocrinologist. Endocrinology (pardon me if there are any reading) is NOT the most complicated field and the training they get should suffice to know what tests to order and whom to refer to. Most endos are "diabetic specialists" because the disease dominates the scene. Orthopods are surgeons and I would not go that way. A rheumatologist who is used to working with kids would probably be fine as a child with osteoporosis often complain of pain and might well end up at a rheumatologist. If there are no lab abnormalities pointing to a cause (like parathyroid problems, etc) and no meds she is on to cause them, I'd go to the geneticist. I'd go to a "university hospital". They are often busy and crowded, but that's what I'd do. If the geneticist turns up the problem, they will also know who is "good" for treating it in your area. Have you googled "osteoporosis in children"? Read up a bit, and you might have a better idea of the kinds of things to bring up. Like your 9 fractures. That is a lot. HTH Quote Link to comment Share on other sites More sharing options...
Remudamom Posted March 19, 2009 Share Posted March 19, 2009 Rheumatologist? Quote Link to comment Share on other sites More sharing options...
FlockOfSillies Posted March 19, 2009 Share Posted March 19, 2009 I think they went to Johns Hopkins. I'm not 100% sure, but they were extremely pleased, wherever it was. Quote Link to comment Share on other sites More sharing options...
Alice Posted March 19, 2009 Share Posted March 19, 2009 I would go back to another endocrinologist first and also consider the geneticist. I'll PM you some names. Quote Link to comment Share on other sites More sharing options...
phathui5 Posted March 19, 2009 Share Posted March 19, 2009 I would take them to a naturopath. My mother in law has fibromyalgia and her doctors weren't able to help her and her naturopath put her on a diet for it that basically has it in remission. Quote Link to comment Share on other sites More sharing options...
TraceyS/FL Posted March 19, 2009 Share Posted March 19, 2009 OUr ped geneticist was a referral thru the Ped Endocrinologist as a result of his testings. I'd be apt to find a Childrens Hospital type of setting where it's one stop shopping and the team of docs are used to working together. Sounds like you need a variety working together at this point. Quote Link to comment Share on other sites More sharing options...
katemary63 Posted March 19, 2009 Share Posted March 19, 2009 OUr ped geneticist was a referral thru the Ped Endocrinologist as a result of his testings. I'd be apt to find a Childrens Hospital type of setting where it's one stop shopping and the team of docs are used to working together. Sounds like you need a variety working together at this point. :iagree: Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted March 19, 2009 Author Share Posted March 19, 2009 Well, we were at Children's Hospital and I thought that we would get coordinated care. She suggested the geneticist and when I asked for a recommendation, she didn't refer to the one at her hospital or any other one. She said go to your PCM. Now we don't have a PCM per se. We do have a pediatrician and he referred us to endocrinologist and gave us a list of three. One didn't take our insurance, and the second one was Children's NMC. That is the one we made an appointment with and then later, I ccontacted the National Osteoporosis Foundation who referred me to another doctor at Children's who is a specialist on osteoporosis in children. Since our appointment with the endocrinologist was in less than a week when I got the recommendation, we went with seeing the first endocrinonologist thinking if she didn't have an answer, she would send us to her collegea at the hospital who is the specialist and runs a bone clinic. No such luck. Now my insurance (Tricare North) has some of the worse referral lists like docotrs who are hospitalists and only see children that are inpatient, doctors who don't see kids this age or no longer take our insurance or have wrong phone numbers, etc, etc. My dh doesn't understand that for each new doctor I get for anyone I spend at least an hour or two searching. Since my girls and I all need many specialists, this takes so much time. I think I will try a geneticist at Georgetown Hospital or maybe John Hopkins. I don't mind the travel as long as I get someone who asks relevant questions and takes the time. Usggesting Marfans to medium sized people is not my idea of a good suggestion. Quote Link to comment Share on other sites More sharing options...
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