Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 Been ages since my last post.... its been too hectic here to have time for anything never mind getting near a computer. has been told she needs a jaw replacement, we found out on Tuesday and we go to meet the orthodontic team in 2 weeks time. She will need teeth moved around and will also get a 3d scan. The actual surgery will take about 18 months possibly as there is alot of preparations to be done.... I never knew her face was that bad, we did thnk that a jaw reset was needed, but this is obviously alot worse news than we thought. The xrays show total jaw joint erosion.... its just basically a mass of solid bone. She went for a 3d xray and it showed the extent of the damage. The Maxillo facial team were nice but they didnt sugar coat their words so left feeling very upset, knowing she needs major surgery and its not going to be nice... s been refusing all of her meds for about 5-6 weeks now, we are back at the doctors surgery 2x a week so the nurses can give her injections, its a screaming battle tho. The poor nurse was close to tears and i was n tears and was screaming.... She had been managing her injections on her own for months and i dont know what is happening, she has been referred for councelling to see if they can find out what the issues are. She is still attending hydrotherapy every week and thats going well. there is talk of changing her enbrel to Humira as shes not dealing well with 2 injections a week but may do better on one a fortnight. Any ideas or advice??? and ERA and PsA West of Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 sounds like she's feeling rather bitter and angry about stuff.... understandably.... a lot of us kids/teens go through it.... amazingly having the disease a long time doesnt necessarily make it easier to cope with over time when stuff gets in your head about it one way or another.... ussualy it's more of a control issue.. or more like feeling like you have NO control and it's just not fair... I mean sure we all know it's not fair but in reality, these isses just build up and get taken out internally and/or externally.... one of the first things that gets attacked is compliance.... well " fine, i can decide if im going to take this or not take this... so there... " .... I do hope she gets a good therapist who has experience with working with those with chronic illness. It DOES make a big difference to have someone like that. I was so fortunate once to have a therapist with JAS and that was absolutely awesome for me... anyways, best of fortune.... I thought I might have to face Jaw surgery before... my Maxillionfacial surgeon and orthodontist recommeded it but in the end, I didnt go with it however with me, i was able to see that my situation was manageable without such intense intervention. That is a REALLY difficult journey and I'm sorry she has to go through it and that you all do but hopefully things will get better once it's all over. It's a long recovery but hopefully her knowing the truth,. while harsh will help her to process it over time and deal with it happening... Issadora On Sat, Oct 25, 2008 at 2:21 AM, <quacksmum@...> wrote: > Been ages since my last post.... its been too hectic here to have time > for anything never mind getting near a computer. > > has been told she needs a jaw replacement, we found out on > Tuesday and we go to meet the orthodontic team in 2 weeks time. She > will need teeth moved around and will also get a 3d scan. The actual > surgery will take about 18 months possibly as there is alot of > preparations to be done.... > > I never knew her face was that bad, we did thnk that a jaw reset was > needed, but this is obviously alot worse news than we thought. The > xrays show total jaw joint erosion.... its just basically a mass of > solid bone. She went for a 3d xray and it showed the extent of the > damage. The Maxillo facial team were nice but they didnt sugar coat > their words so left feeling very upset, knowing she needs major > surgery and its not going to be nice... > > s been refusing all of her meds for about 5-6 weeks now, we are > back at the doctors surgery 2x a week so the nurses can give her > injections, its a screaming battle tho. The poor nurse was close to > tears and i was n tears and was screaming.... > > She had been managing her injections on her own for months and i dont > know what is happening, she has been referred for councelling to see if > they can find out what the issues are. > > She is still attending hydrotherapy every week and thats going well. > there is talk of changing her enbrel to Humira as shes not dealing well > with 2 injections a week but may do better on one a fortnight. > > Any ideas or advice??? > > and ERA and PsA > West of Scotland > > > -- " Life- Like the flutter of wings... feel your hollow wings rushing... " (AFI- Silver and Cold). my Flight in life is a metamorphosis of growth and this flutter of wings is within me awaiting to find a space to find it's flow... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 Hi , I am so sorry that you and are going through this right now. I cannot imagine the pain that she feels at this point, I am sure she is quite scared at the same time which does not help. Sometimes just the anticipation of what is up ahead is enough in itself to make a child miserable. When Maggie was six she had surgery and was put to sleep by our oral surgeon to fix her teeth. Because she also has Osteogenesis Imperfecta, her teeth came in without the enamel on them which protects them, so most of her teeth were capped. She was put to sleep for this surgery. Because her bones are so brittle, they opened her mouth too wide and cracked her jaw bone. (ouch) They then had to go back in and repair the mess they made and in the end Maggie not only spent Christmas in the hospital, she could only eat strained foods for almost 8 weeks while her jaw healed. Having had hundreds of broken bones, this was by far one of the most painful. I am sure knows this is not going to be pleasent and cannot see past the surgery to get to the happy ending right now. I feel so bad for her.(and you!!) You guys have 18months to worry about this, that is a very long time. Sometimes the unknown is 100 X's worse than the known!! We will be praying for you guys, it isn't easy being I am sure!! But it also isn't easy to be her mom either!! Sending Hugs from Iowa......praying that things will calm down for both of you very soon!! Diane and Maggie From: <quacksmum@...> Subject: what a week! Date: Saturday, October 25, 2008, 9:21 AM Been ages since my last post.... its been too hectic here to have time for anything never mind getting near a computer. has been told she needs a jaw replacement, we found out on Tuesday and we go to meet the orthodontic team in 2 weeks time. She will need teeth moved around and will also get a 3d scan. The actual surgery will take about 18 months possibly as there is alot of preparations to be done.... I never knew her face was that bad, we did thnk that a jaw reset was needed, but this is obviously alot worse news than we thought. The xrays show total jaw joint erosion.... its just basically a mass of solid bone. She went for a 3d xray and it showed the extent of the damage. The Maxillo facial team were nice but they didnt sugar coat their words so left feeling very upset, knowing she needs major surgery and its not going to be nice... s been refusing all of her meds for about 5-6 weeks now, we are back at the doctors surgery 2x a week so the nurses can give her injections, its a screaming battle tho. The poor nurse was close to tears and i was n tears and was screaming... . She had been managing her injections on her own for months and i dont know what is happening, she has been referred for councelling to see if they can find out what the issues are. She is still attending hydrotherapy every week and thats going well. there is talk of changing her enbrel to Humira as shes not dealing well with 2 injections a week but may do better on one a fortnight. Any ideas or advice??? and ERA and PsA West of Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 , Sorry to hear things are not going well. I feel for you I really do. I pray that things will go smoothly for you. right now 18 months sounds so far off but it will get here quicker then you would like. I pray that Kati will be able not think about it so much. I also pray that she will soon be able to take her med again without so much anxiety.? It just does not make sense but then what about this disease does make sense. Just know that our prayers are with you. Veri & Jaye 14 what a week! Been ages since my last post.... its been too hectic here to have time for anything never mind getting near a computer. has been told she needs a jaw replacement, we found out on Tuesday and we go to meet the orthodontic team in 2 weeks time. She will need teeth moved around and will also get a 3d scan. The actual surgery will take about 18 months possibly as there is alot of preparations to be done.... I never knew her face was that bad, we did thnk that a jaw reset was needed, but this is obviously alot worse news than we thought. The xrays show total jaw joint erosion.... its just basically a mass of solid bone. She went for a 3d xray and it showed the extent of the damage. The Maxillo facial team were nice but they didnt sugar coat their words so left feeling very upset, knowing she needs major surgery and its not going to be nice... s been refusing all of her meds for about 5-6 weeks now, we are back at the doctors surgery 2x a week so the nurses can give her injections, its a screaming battle tho. The poor nurse was close to tears and i was n tears and was screaming.... She had been managing her injections on her own for months and i dont know what is happening, she has been referred for councelling to see if they can find out what the issues are. She is still attending hydrotherapy every week and thats going well. there is talk of changing her enbrel to Humira as shes not dealing well with 2 injections a week but may do better on one a fortnight. Any ideas or advice??? and ERA and PsA West of Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2008 Report Share Posted October 27, 2008 - You have had a rough time of things and my heart goes out to you for that. I think that it is somewhat common for kids to start to have that reaction to their meds. Our ped rheumy takes that very seriously and had us try different things to avoid getting Grant to the point he got to. I can't remember what the doctor called it. Grant went about 5 months with no trouble giving himself the injection. He gradually got worse to the point of us sitting on him to give him the injection and then throwing up immediately following it. Our choice was to either get him into a psychologist or we could try the oral MTx. Luckily for us, the oral mtx is working and I continue to pray that it does. It doesn't seem right to have to see a psychologist because of the medications you are taking for your disease. Where does the cycle end??? I hope & pray the things start getting better soon! & Grant (11, PsA/Uveitis) > > , > > Sorry to hear things are not going well. I feel for you I really do. I pray that things will go smoothly for you. right now 18 months sounds so far off but it will get here quicker then you would like. I pray that Kati will be able not think about it so much. I also pray that she will soon be able to take her med again without so much anxiety.? It just does not make sense but then what about this disease does make sense. Just know that our prayers are with you. > > Veri & Jaye 14 > > > what a week! > > > > > > > Been ages since my last post.... its been too hectic here to have time > for anything never mind getting near a computer. > > has been told she needs a jaw replacement, we found out on > Tuesday and we go to meet the orthodontic team in 2 weeks time. She > will need teeth moved around and will also get a 3d scan. The actual > surgery will take about 18 months possibly as there is alot of > preparations to be done.... > > I never knew her face was that bad, we did thnk that a jaw reset was > needed, but this is obviously alot worse news than we thought. The > xrays show total jaw joint erosion.... its just basically a mass of > solid bone. She went for a 3d xray and it showed the extent of the > damage. The Maxillo facial team were nice but they didnt sugar coat > their words so left feeling very upset, knowing she needs major > surgery and its not going to be nice... > > s been refusing all of her meds for about 5-6 weeks now, we are > back at the doctors surgery 2x a week so the nurses can give her > injections, its a screaming battle tho. The poor nurse was close to > tears and i was n tears and was screaming.... > > She had been managing her injections on her own for months and i dont > know what is happening, she has been referred for councelling to see if > they can find out what the issues are. > > She is still attending hydrotherapy every week and thats going well. > there is talk of changing her enbrel to Humira as shes not dealing well > with 2 injections a week but may do better on one a fortnight. > > Any ideas or advice??? > > and ERA and PsA > West of Scotland > > > > > > > Quote Link to comment Share on other sites More sharing options...
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