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Post by elaine on Jul 20, 2016 1:08:29 GMT
I spent 8 hours at NIH with my younger son today. And while I am thankful we live close enough to go to NIH, I am literally sick to my stomach over the lack of appropriate care we have been getting for his osteogenesis Imperfecta through military medicine. Literally sick.
We will now embark on a new medical journey between NIH and Children's Hospital in DC to help him. We start intravenous bisphosphonates (the drugs they use for post-menopausal osteoporosis) as soon as we get back from my next eye surgery in Michigan (end of July).
I hate that we are starting intravenous drugs for him, but the hope is that it will stop the repeated spinal fractures and resulting scoliosis he is suffering from.
And the military docs have been telling me complete bullshit for the past few years. Another thing that is making me sick to my stomach. I should never have believed them.
No need to comment - I just needed to get it out there. I'm so freaking sick of having to fight multiple doctors over multiple years to get competent care for my son. And then when I find a doctor who knows what she is doing with this disease and she wants to know why X, Y, and Z haven't already been done with ds.
I want to cry.
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Post by freecharlie on Jul 20, 2016 1:10:11 GMT
It sounds like finally he will be getting good care I hope it continues.
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Post by mom on Jul 20, 2016 1:14:31 GMT
I am sorry. I hope you are on the right track now!
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Post by Linda on Jul 20, 2016 1:14:49 GMT
prayers
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Post by originalvanillabean on Jul 20, 2016 1:15:14 GMT
(((hugs))) to you and glad to hear you have found a better doctor.
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psiluvu
Pearl Clutcher
Posts: 3,217
Location: Canada's Capital
Jun 25, 2014 22:52:26 GMT
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Post by psiluvu on Jul 20, 2016 1:17:12 GMT
Hugs to you. Sounds like quite the ordeal
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Peal
Pearl Clutcher
Posts: 2,524
Jun 25, 2014 22:45:40 GMT
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Post by Peal on Jul 20, 2016 1:24:10 GMT
I'm so sorry. It's been my experience that the military offers fantastic medical care, as long as there is nothing wrong with you. As soon as you show up with symptoms that can't be treated with an Rx of vitamin M, they just shuffle you along through the system on a never ending hamster wheel that goes nowhere.
Hopefully now you will be seeing some progress.
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Post by Merge on Jul 20, 2016 1:40:39 GMT
I'm so sorry you're dealing with this. You and your son will be in my thoughts.
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Post by gmcwife1 on Jul 20, 2016 1:40:53 GMT
I'm sorry Elaine I truly hope this new path will help him. I'm also sorry for the failure of our military medical system. I've seen it and heard it before
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~Lauren~
Pearl Clutcher
Posts: 3,876
Jun 26, 2014 3:33:18 GMT
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Post by ~Lauren~ on Jul 20, 2016 1:42:16 GMT
I'm glad he's finally getting appropriate care. Hope things improve soon.
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Post by Delta Dawn on Jul 20, 2016 1:46:01 GMT
My mom used to get aclasta infusions every year. Is that the same thing as your son will be getting or a similar kind of drug? I hope it works for him. Poor little man.
Elaine, you are grace under fire. You are strong and I mean tough as nails. You have significant struggles with your own issues (eye surgeries which sound scary) and then two boys with autism. You really can take on anything. I admire you a lot.
I hope you can get good care for your son. He deserves the very best. I hope it is soon, too!
Many hugs.
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Post by femalebusiness on Jul 20, 2016 1:51:15 GMT
So sorry. It must be exhausting. Sending positive thoughts your way. Wish I could relieve some of your load.
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Post by scrapmaven on Jul 20, 2016 1:55:54 GMT
Elaine, feel free to cry as long and as hard as you want. I just want to sit w/you, offer you a tissue and put an arm around your shoulder.
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Post by annabella on Jul 20, 2016 2:12:41 GMT
Sorry!
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Post by elaine on Jul 20, 2016 2:22:46 GMT
Elaine, please feel free to pea mail me. You should be seeing L. T. (initials) at National Childrens. She is the only one in this area I would trust at all with dgd who has OI. Like at. all. Also, if you are seeing someone at NIH whose initials are J M, I would really advise caution. as in extreme caution. We need to deal with military care and approval as well, and I may have mentioned my strong feelings about using the team at Omaha Childrens even if it means we need to pay ourselves. We have traveled to there from wherever we are in country and when we were living out of the country as well. Too many horror stories to not make it worth it *to us*. The Shriner's in Montreal are above reproach as well. There is a medical convention this weekend where free medical consultations are given. I do not know if they are all reserved at this point. Seriously, pea mail if you'd like. Otherwise, I try to stay out of other people's business. Really, all intelligent people try to provide the best care they can for their kids, so I have no business second guessing you/them. The other's wouldn't listen to anyone else anyway. Yes, Dr. T will be one of our docs, although she wasn't very helpful a few years ago before additional spinal fractures. For now, our primary doc will be a pediatric endo who hops between NIH and Children's. Much of what the FIVE docs who were in the room with us today completely contradicted what the Walter Reed ped endo and ped orthoped told us two months ago. And the Walter Reed Ped Endo told me I was just being a difficult mother, and should step back. He has PCS'd; lucky for him, or I would show up and as a wife of an O-6 rip him a new one. I trust, now that we will be starting on the IV infusions, along with an Orthoped that specializes in OI, AND an physiatrist, that will start to get some of his spinal issues under control. The Walter Reed pediatrician and ped endo said his X-rays showed profound scoliosis, but when we saw the Walter Reed Orthoped he said "there is no scoliosis, I don't know why you are here. See you in a year." All the docs at NIH today said "profound scoliosis." We needed to do something six months ago. Sigh. Walter Reed has no OI patients beside our son, at least Children's has 40. The most recent ped endo at Walter Reed wrote all over his notes that my son has OI type I, not understanding that there is a huge difference between type I and the type IV that he does have. I'm spitting nails over this, but there is absolutely no recourse when it is military medicine. No being able to successfully sue for malpractice. We have to take whatever shit they try to pedal unless we through a HUGE stink.
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Post by elaine on Jul 20, 2016 2:23:48 GMT
Thank you, each and every one of you for your kind words. I'm so tired and so angry.
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basketdiva
Pearl Clutcher
Posts: 3,619
Jun 26, 2014 11:45:09 GMT
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Post by basketdiva on Jul 20, 2016 2:52:18 GMT
I'm sorry you are going through all of this. I know you are upset with military doctors but as evidenced nonetopleased's story about her husband non-military doctors make incorrect diagnosis too.
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Deleted
Posts: 0
May 20, 2024 21:48:47 GMT
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Post by Deleted on Jul 20, 2016 2:59:47 GMT
That really sucks, elaine. I'm so sorry you've had to deal with incompetence all this time. But here's hoping the new hospital and docs will get it right, and your son can get the treatment he needs.
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GiantsFan
Prolific Pea
Posts: 8,295
Site Supporter
Jun 27, 2014 14:44:56 GMT
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Post by GiantsFan on Jul 20, 2016 3:01:35 GMT
I'm so sorry Elaine. I hope he can now get the care he needs and is on the road to better health.
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Post by elaine on Jul 20, 2016 3:01:37 GMT
I'm sorry you are going through all of this. I know you are upset with military doctors but as evidenced nonetopleased's story about her husband non-military doctors make incorrect diagnosis too. Yes, her situation is awful, or rather her husband's. I feel for her. My son's "illness" is the result of a genetic defect - like Down Syndrome - with a clear genetic defect that he has been tested for and has. So, really, there is NO excuse for "misdiagnosis" in his case. There is no grey area. There are, however, only 50,000 people TOTAL in the USA with this disorder, and no other kids in the military system in our area. The 40 kids at Children's come from 8 surrounding states. The military docs actually told me that they didn't really want to refer me out to Children's because they wanted to use him as a training case. Yeah, um, no. If you don't know firsthand the particular hell of military medicine, thank your lucky stars.
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janeliz
Drama Llama
I'm the Wiz and nobody beats me.
Posts: 5,633
Jun 26, 2014 14:35:07 GMT
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Post by janeliz on Jul 20, 2016 3:26:02 GMT
I'm so sorry. ((Hugs)) and encouragement to you, and I hope things start looking up very soon.
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Post by Lexica on Jul 20, 2016 3:27:08 GMT
Oh, Elaine, I am so very sorry. As mothers, especially mothers of a child with an illness, we do the very best we can do for them. It is frustrating because we ourselves cannot fix them, so we take them to someone who is supposed to know how to handle it in the most cutting edge manner possible, putting our trust in them. It is so aggravating and scary when you find out they didn't have the knowledge, and didn't advise you to find a specialist that did have that knowledge.
I went through this when my son had his cancer diagnosis. The doctor we saw was supposed to know what he was doing. It turns out that the procedures he outlined for him would have likely left me with no son. He had never seen a case of the type of cancer my son had. Did he tell us that and recommend someone else for us to see? No, he did not. I learned to ask how many cases of 'whatever' has a doctor successfully dealt with in a year? How much experience does he have with the way my child is presenting with his diagnosis of whatever? I didn't know back then, but I sure do now.
Thank God my sister, a nurse with a doctor husband, did some investigating on our behalf. This was before there was an internet that we could all hop on. There was a medical resource that she accessed in her husband's office that I would not have had access to. She called all over the country to find doctors that specialized in this area, even some that had retired, and asked how they would proceed with a child that presented as mine did. She sent some of his paperwork all over the country - and even to a doctor in Israel who was an expert in this particular kind of cancer. Every single one of them contradicted what my son's doctor was doing.
We met with our doctor and had a stack of paperwork that proved that what he was recommending would have likely allowed the cancer to spread to where it would be untreatable. He just sat there. My sister asked him if this was HIS son, what would he do. Again, he just sat there. He hung his head, but didn't talk. My son was scheduled for a treatment the following day and I cancelled it. My sister got us in at the Mayo Clinic in Minnesota within a week's time. Even though we lived in California, we had the Mayo orchestrate my son's care from there on out. The doctor we saw there was treating quite a number of these cases. We would fly or drive back, we would send blood samples packed in dry ice from home so that it was run in the same Mayo Clinic lab every time. That was important to his doctor. He wanted a lab he trusted.
If they wanted something done that we could have done at home, we did so. If not, they had us come back to Minnesota. We remained with Mayo for about 7 years until my son was no longer showing any active cancer. I had been so in shock when I was told it was cancer that I was pretty much numb and useless. If I had been the woman I am now at that point in time back then, I don't know what I would have done to that doctor, but it would have been uncomfortable for him, whatever it was. Some doctors have such an ego that they are willing to basically experiment on a patient rather than admit that they are not experienced in that particular thing. And his office had the nerve to call me a year later and ask how my son was doing! Like they really cared? I though that was very strange.
Sorry for venting on your vent thread. Reading about your boy brought back some of the feelings I had and I just got so riled up again. I understand your anger more that I can say. Thank goodness you found someone who knows how to treat your son and he will be on a better regime from here on out.
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Post by crazy4scraps on Jul 20, 2016 3:29:14 GMT
So sorry you're having to deal with all of that Elaine! Hopefully now you'll get some of the answers you need. Hugs!
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Post by elaine on Jul 20, 2016 3:32:36 GMT
Oh, Elaine, I am so very sorry. As mothers, especially mothers of a child with an illness, we do the very best we can do for them. It is frustrating because we ourselves cannot fix them, so we take them to someone who is supposed to know how to handle it in the most cutting edge manner possible, putting our trust in them. It is so aggravating and scary when you find out they didn't have the knowledge, and didn't advise you to find a specialist that did have that knowledge. I went through this when my son had his cancer diagnosis. The doctor we saw was supposed to know what he was doing. It turns out that the procedures he outlined for him would have likely left me with no son. He had never seen a case of the type of cancer my son had. Did he tell us that and recommend someone else for us to see? No, he did not. I learned to ask how many cases of 'whatever' has a doctor successfully dealt with in a year? How much experience does he have with the way my child is presenting with his diagnosis of whatever? I didn't know back then, but I sure do now. Thank God my sister, a nurse with a doctor husband, did some investigating on our behalf. This was before there was an internet that we could all hop on. There was a medical resource that she accessed in her husband's office that I would not have had access to. She called all over the country to find doctors that specialized in this area, even some that had retired, and asked how they would proceed with a child that presented as mine did. She sent some of his paperwork all over the country - and even to a doctor in Israel who was an expert in this particular kind of cancer. Every single one of them contradicted what my son's doctor was doing. We met with our doctor and had a stack of paperwork that proved that what he was recommending would have likely allowed the cancer to spread to where it would be untreatable. He just sat there. My sister asked him if this was HIS son, what would he do. Again, he just sat there. He hung his head, but didn't talk. My son was scheduled for a treatment the following day and I cancelled it. My sister got us in at the Mayo Clinic in Minnesota within a week's time. Even though we lived in California, we had the Mayo orchestrate my son's care from there on out. The doctor we saw there was treating quite a number of these cases. We would fly or drive back, we would send blood samples packed in dry ice from home so that it was run in the same Mayo Clinic lab every time. That was important to his doctor. He wanted a lab he trusted. If they wanted something done that we could have done at home, we did so. If not, they had us come back to Minnesota. We remained with Mayo for about 7 years until my son was no longer showing any active cancer. I had been so in shock when I was told it was cancer that I was pretty much numb and useless. If I had been the woman I am now at that point in time back then, I don't know what I would have done to that doctor, but it would have been uncomfortable for him, whatever it was. Some doctors have such an ego that they are willing to basically experiment on a patient rather than admit that they are not experienced in that particular thing. And his office had the nerve to call me a year later and ask how my son was doing! Like they really cared? I though that was very strange. Sorry for venting on your vent thread. Reading about your boy brought back some of the feelings I had and I just got so riled up again. I understand your anger more that I can say. Thank goodness you found someone who knows how to treat your son and he will be on a better regime from here on out. (((Hugs))) I understand. My DH is making me go to bed now, but thanks!
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Post by monklady123 on Jul 20, 2016 10:24:28 GMT
I'm sorry to hear all that. Hopefully now that you're with doctors who know about this condition (disease? I'm sorry to say I don't know anything about it but I plan to google to educate myself) your son will make good progress. I have heard stories like yours about the military medical system and it's very sad.
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tuesdaysgone
Pearl Clutcher
Posts: 4,832
Jun 26, 2014 18:26:03 GMT
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Post by tuesdaysgone on Jul 20, 2016 10:29:28 GMT
I'm so sorry both you and your son are going thru this. It's a shame that in a modern age and a major metro area, with every resource available, you are not getting the treatment he needs in a timely way.
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Peamac
Pearl Clutcher
Refupea # 418
Posts: 4,218
Jun 26, 2014 0:09:18 GMT
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Post by Peamac on Jul 20, 2016 12:21:55 GMT
I'm sorry- I've heard that it can be hard to find the right care in the military medical circles!
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Post by gailoh on Jul 20, 2016 12:25:06 GMT
Hope all goes well for him and you....hugs
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Post by mikklynn on Jul 20, 2016 12:33:44 GMT
I want to cry for you! How frustrating.
I'm not surprised you are exhausted. Caregiving is hard work. I hope you find a few minutes to treat yourself to coffee with a friend or something just for you.
Hugs.
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scrappert
Prolific Pea
RefuPea #2956
Posts: 7,792
Location: Milwaukee, WI area
Jul 11, 2014 21:20:09 GMT
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Post by scrappert on Jul 20, 2016 12:40:33 GMT
Ugh, it sucks being the mom sometimes. HUGS to you elaine. It sounds promising right now.
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