Guest guest Posted June 6, 2007 Report Share Posted June 6, 2007 Hi everyone: We took Hannah to the ped today. He spent almost 30 minutes with us. He spent lots of time looking at her knees and we spent lots of time talking about various possibilities. Unfortunately he said she is going to be at a very hard age for this. Meaning she's changing hormonally and growing like crazy (finally), both of which add stress to joints anyway, so someone who already has issues could see an increase in intensity. However, he said given her history that does not mean any way we should stop pursuing a diagnosis. As far as her knees go, her left is far worse than her right. He said her hypermobility is much worse than it was even 6 months ago. She also had too much movement when he maneuvered her knee from side to side. That puts her a huge risk for injury. He put in her a knee supporter. It has no metal in it, it is to support her knee during any activity. She pretty much is to wear it unless she's watching t.v or sleeping. He also wants to put her on 250mg of glucosamine daily. He also said she should take the adult dose of ibuprofen (400mg) as needed until we see the pain doctor in 3 weeks. I asked about a bone density test, but he said he was not comfortable ordering that. He would like me to discuss that with Dr. Weisman when we see him. He also mentioned that if she continues hurting this badly, he might consider a low dose of long-term pred to give her. He said the hard part with her is her growth. He's concerned that it will impede her growth now that she's growing. We will revisit that issue when we see in August again, unless Dr. Weisman thinks it would be a good idea. Thanks for all your thoughts, prayers and advice. Beth & Hannah, 10, unspecified arthritis; asthma; gerd; migraines Sending prayers & happy thoughts, Beth :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2007 Report Share Posted June 6, 2007 Beth, I agree with Helen. Pred is hard and the side effects are something else. There is a 7 day boost Pred and this has helped alot. My Sister has taken it everytime she swells. has as well. Long term has it's own issues. The Connective Tissue Disease is one to also check on. RobbinSee what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2007 Report Share Posted June 6, 2007 --Beth, it sounds like you have a wonderful ped. Thank goodness for that! Im glad he took the time to listen and talk over options. -An increase in hypermobility is a worry, you know dislocations are common with EDS. Is he concerned about this?? Have you thought of seeing a geneticist and investigating CTD more?? I hope hannah gets some relief from the meds. I would avoid pred if at all possible, especailly long term. Perhaps a short burst for a few days would help her though this rough patch. Anything to stay away from long term. It really can be a nightmare to get off of it and it does so much harm. hugs Helen and (9,systemic) In , Beth Yohnk <yohnkmom@...> wrote: > > Hi everyone: > We took Hannah to the ped today. He spent almost 30 minutes with us. He spent lots of time looking at her knees and we spent lots of time talking about various possibilities. Unfortunately he said she is going to be at a very hard age for this. Meaning she's changing hormonally and growing like crazy (finally), both of which add stress to joints anyway, so someone who already has issues could see an increase in intensity. However, he said given her history that does not mean any way we should stop pursuing a diagnosis. > > As far as her knees go, her left is far worse than her right. He said her hypermobility is much worse than it was even 6 months ago. She also had too much movement when he maneuvered her knee from side to side. That puts her a huge risk for injury. He put in her a knee supporter. It has no metal in it, it is to support her knee during any activity. She pretty much is to wear it unless she's watching t.v or sleeping. He also wants to put her on 250mg of glucosamine daily. He also said she should take the adult dose of ibuprofen (400mg) as needed until we see the pain doctor in 3 weeks. > > I asked about a bone density test, but he said he was not comfortable ordering that. He would like me to discuss that with Dr. Weisman when we see him. He also mentioned that if she continues hurting this badly, he might consider a low dose of long-term pred to give her. He said the hard part with her is her growth. He's concerned that it will impede her growth now that she's growing. We will revisit that issue when we see in August again, unless Dr. Weisman thinks it would be a good idea. > > Thanks for all your thoughts, prayers and advice. > > Beth & Hannah, 10, unspecified arthritis; asthma; gerd; migraines > > Sending prayers & happy thoughts, > Beth :-) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2007 Report Share Posted June 6, 2007 Hi Helen: Yes he was very concerned which why he has her wearing the stabilizer every day, all day. He also told her in no uncertain terms that she is to stay off any all trampolines. Our neighbor has one and she loves to go on it. She was not happy about that, but realizes the danger. I am going to ask Dr. Weisman about EDS & CTD. I'm luck in that I do not need referrals with our insurance and may pursue the geneticist with or without his blessing. She has me very concerned. We went to a waterpark this afternoon with her Girl Scout Troop. She was great in the water. But now that we are home she can barely walk. Three weeks a long way off.....sigh.... I also do NOT wish to do pred longterm. However, with the pain she's in that may our last resort. Beth Sending prayers & happy thoughts, Beth :-) Re: back from the ped --Beth,it sounds like you have a wonderful ped. Thank goodness for that! Im glad he took the time to listen and talk over options.-An increase in hypermobility is a worry, you know dislocations are common with EDS. Is he concerned about this??Have you thought of seeing a geneticist and investigating CTD more??I hope hannah gets some relief from the meds. I would avoid pred if at all possible, especailly long term. Perhaps a short burst for a few days would help her though this rough patch. Anything to stay away from long term. It really can be a nightmare to get off of it and it does so much harm.hugs Helen and (9,systemic)In @group s.com, Beth Yohnk <yohnkmom@.. .> wrote:>> Hi everyone:> We took Hannah to the ped today. He spent almost 30 minutes with us. He spent lots of time looking at her knees and we spent lots of time talking about various possibilities. Unfortunately he said she is going to be at a very hard age for this. Meaning she's changing hormonally and growing like crazy (finally), both of which add stress to joints anyway, so someone who already has issues could see an increase in intensity. However, he said given her history that does not mean any way we should stop pursuing a diagnosis.> > As far as her knees go, her left is far worse than her right. He said her hypermobility is much worse than it was even 6 months ago. She also had too much movement when he maneuvered her knee from side to side. That puts her a huge risk for injury. He put in her a knee supporter. It has no metal in it, it is to support her knee during any activity. She pretty much is to wear it unless she's watching t.v or sleeping. He also wants to put her on 250mg of glucosamine daily. He also said she should take the adult dose of ibuprofen (400mg) as needed until we see the pain doctor in 3 weeks.> > I asked about a bone density test, but he said he was not comfortable ordering that. He would like me to discuss that with Dr. Weisman when we see him. He also mentioned that if she continues hurting this badly, he might consider a low dose of long-term pred to give her. He said the hard part with her is her growth. He's concerned that it will impede her growth now that she's growing. We will revisit that issue when we see in August again, unless Dr. Weisman thinks it would be a good idea.> > Thanks for all your thoughts, prayers and advice. > > Beth & Hannah, 10, unspecified arthritis; asthma; gerd; migraines> > Sending prayers & happy thoughts,> Beth :-)> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2007 Report Share Posted June 7, 2007 Hi Beth, Is Dr. W. your mom's rheumy? The bone density test appears like a good one to order. How is Hannah coping with the brace? I would think that it would be hot for her to wear it all the time. Is school about done? Maybe a slower schedule will help her some. (aundrea 11 systemic jra/gerd) > > Hi everyone: > We took Hannah to the ped today. He spent almost 30 minutes with us. He spent lots of time looking at her knees and we spent lots of time talking about various possibilities. Unfortunately he said she is going to be at a very hard age for this. Meaning she's changing hormonally and growing like crazy (finally), both of which add stress to joints anyway, so someone who already has issues could see an increase in intensity. However, he said given her history that does not mean any way we should stop pursuing a diagnosis. > > As far as her knees go, her left is far worse than her right. He said her hypermobility is much worse than it was even 6 months ago. She also had too much movement when he maneuvered her knee from side to side. That puts her a huge risk for injury. He put in her a knee supporter. It has no metal in it, it is to support her knee during any activity. She pretty much is to wear it unless she's watching t.v or sleeping. He also wants to put her on 250mg of glucosamine daily. He also said she should take the adult dose of ibuprofen (400mg) as needed until we see the pain doctor in 3 weeks. > > I asked about a bone density test, but he said he was not comfortable ordering that. He would like me to discuss that with Dr. Weisman when we see him. He also mentioned that if she continues hurting this badly, he might consider a low dose of long-term pred to give her. He said the hard part with her is her growth. He's concerned that it will impede her growth now that she's growing. We will revisit that issue when we see in August again, unless Dr. Weisman thinks it would be a good idea. > > Thanks for all your thoughts, prayers and advice. > > Beth & Hannah, 10, unspecified arthritis; asthma; gerd; migraines > > Sending prayers & happy thoughts, > Beth :-) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2007 Report Share Posted June 7, 2007 Hi : Dr.W is Hannah's pain management doctor. He is the one who has suggested EDS which why I want to revisit with him and pursue further testing. I believe he will send us to a genetics specialist which there are several at our Children's Hospital. I agree that bone density would be good and will ask him to order that. The kids are done with school next Friday. I think she'll do ok with the brace, however, it extremely hot (90's) and humid here today and they are predicting really wicked storms later today, so we'll see. She is aware she needs it to protect herself. The good news too is she does not have rehearsal again until June 16. I just want to get her into the pool. Hopefully this weekend. We had leak in our filter so our chemical levels got all screwed up. Any new developments on the adoption front? Do you get to spend any time with the kids? Beth & Hannah, 10, unspecified arthritis; asthma; gerd; migraines Sending prayers & happy thoughts, Beth :-) Re: back from the ped Hi Beth,Is Dr. W. your mom's rheumy? The bone density test appears like a good one to order. How is Hannah coping with the brace? I would think that it would be hot for her to wear it all the time.Is school about done? Maybe a slower schedule will help her some. (aundrea 11 systemic jra/gerd)>> Hi everyone:> We took Hannah to the ped today. He spent almost 30 minutes with us. He spent lots of time looking at her knees and we spent lots of time talking about various possibilities. Unfortunately he said she is going to be at a very hard age for this. Meaning she's changing hormonally and growing like crazy (finally), both of which add stress to joints anyway, so someone who already has issues could see an increase in intensity. However, he said given her history that does not mean any way we should stop pursuing a diagnosis.> > As far as her knees go, her left is far worse than her right. He said her hypermobility is much worse than it was even 6 months ago. She also had too much movement when he maneuvered her knee from side to side. That puts her a huge risk for injury. He put in her a knee supporter. It has no metal in it, it is to support her knee during any activity. She pretty much is to wear it unless she's watching t.v or sleeping. He also wants to put her on 250mg of glucosamine daily. He also said she should take the adult dose of ibuprofen (400mg) as needed until we see the pain doctor in 3 weeks.> > I asked about a bone density test, but he said he was not comfortable ordering that. He would like me to discuss that with Dr. Weisman when we see him. He also mentioned that if she continues hurting this badly, he might consider a low dose of long-term pred to give her. He said the hard part with her is her growth. He's concerned that it will impede her growth now that she's growing. We will revisit that issue when we see in August again, unless Dr. Weisman thinks it would be a good idea.> > Thanks for all your thoughts, prayers and advice. > > Beth & Hannah, 10, unspecified arthritis; asthma; gerd; migraines> > Sending prayers & happy thoughts,> Beth :-)> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2007 Report Share Posted June 7, 2007 - good luck to you and your amazing family!!! Adoption is an amazing thing and I applaud anyone that considers it. I come from a family where 5 of the 8 kids are adopted (I was the first adopted, although I am in the middle age wise). My family even adopted two special needs children. My younger brother is legally blind and my older sister was 9 when we adopted her and came with A LOT of emotional baggage... I know if this is meant to be it will. Either way you are doing an awesome thing!!! Alia and Caroline, age 5, poly and uveitisSee what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2007 Report Share Posted June 7, 2007 Beth, I finally got in touch with the case worker. I had been leaving messages for over 3 weeks and she never returned my calls. She told me that several other families have come forward and want to adopt all three children. She said that they would order home studies and then determine the best family for the kids. I did ask her about the child that is in the crisis nursery whom we were going to start visits with. She said they were having a meeting about him later this week. She was suppose to fax me a home study consent form for us to sign, but that was a couple of days ago and we still haven't received it. So, at this point we are just in prayer for these children. I don't want to be " forcing " anything. I really only want whats best with them. If God felt that our family was the right place then we were good with that, if my purpose was just to shine a light on this situation and get things moving, perhaps even for another family then I am ok with that also. If we get the homestudy info we will pursue it. We aren't going to chase the caseworker anymore. Our prayer is that if God is still wanting us to be their parents, then someone will make a move in contacting us. Its been kind of crazy journey, but truthfully I have been completely at peace about the whole thing. I hope Hannah has a nice weekend floating around the pool! :-) (Aundrea 11 systemic jra/gerd) > > > > Hi everyone: > > We took Hannah to the ped today. He spent almost 30 minutes with > us. He spent lots of time looking at her knees and we spent lots of > time talking about various possibilities. Unfortunately he said she > is going to be at a very hard age for this. Meaning she's changing > hormonally and growing like crazy (finally), both of which add stress > to joints anyway, so someone who already has issues could see an > increase in intensity. However, he said given her history that does > not mean any way we should stop pursuing a diagnosis. > > > > As far as her knees go, her left is far worse than her right. He > said her hypermobility is much worse than it was even 6 months ago. > She also had too much movement when he maneuvered her knee from side > to side. That puts her a huge risk for injury. He put in her a knee > supporter. It has no metal in it, it is to support her knee during > any activity. She pretty much is to wear it unless she's watching > t.v or sleeping. He also wants to put her on 250mg of glucosamine > daily. He also said she should take the adult dose of ibuprofen > (400mg) as needed until we see the pain doctor in 3 weeks. > > > > I asked about a bone density test, but he said he was not > comfortable ordering that. He would like me to discuss that with > Dr. Weisman when we see him. He also mentioned that if she continues > hurting this badly, he might consider a low dose of long-term pred to > give her. He said the hard part with her is her growth. He's > concerned that it will impede her growth now that she's growing. We > will revisit that issue when we see in August again, unless Dr. > Weisman thinks it would be a good idea. > > > > Thanks for all your thoughts, prayers and advice. > > > > Beth & Hannah, 10, unspecified arthritis; asthma; gerd; migraines > > > > Sending prayers & happy thoughts, > > Beth :-) > > > Quote Link to comment Share on other sites More sharing options...
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