Guest guest Posted November 16, 2004 Report Share Posted November 16, 2004 Hi Pat, I'm sorry ........ I missed your original posting about your son....I've looked through the archives but can't find it. I'm curious about what's happening with him. About 2 weeks after starting Enbrel I had " poison something or other " . Despite seeing 3 different doctors (primary, Reum and Derm) I never got a firm diagnosis. It was the most incredibly itchy ugly rash I've ever had. It eventually went away but it was probably a month and I still have some scars....wierd. Anyway, I saw " POISON Oak/Ivy " and it caught my eye...... Take Care, > > > Hi everyone and thank you to all who responded. I hope you don't mind > that I am not responding individually, but my fingers are not being > cooperative tonight. I took my son to the dr and he said the rash is > either poison oak or poison ivy. He gave him a steriod shot and > cream. I asked him if it is possible it is psoriasis related and he > just said if it comes back again off and on it could be. I have never > seen poison oak or poison ivy. So for now we will just watch how it > develops. This dr was more concerned about the migraines, which is > good but when the doctor said it would take about a week for his skin > to start to heal you could see the tears in his eyes. Please pray > that it is just poison oak and will clear with the creams. > > Thank you so much for your kind words of support, its not so much > that I blame my self for giving this to him, but we all know how hard > life is without always having to explain " what the sstuff is all over > your skin. " > > Pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2004 Report Share Posted November 16, 2004 Hi Pat, I ended up finding your original posting about your son. I agree with others.....take it one step at a time and regardless of what it ends up being....don't blame yourself. Neither of my parents have PA and, regardless, at one point they expressed feeling bad/guilty. I was shocked. It never occured to me to blame them.....just as I'm sure your son isn't looking at you with suspicion. It sounds like there's a good chance that it's not what you are fearing. Keep us posted. > > > Hi everyone and thank you to all who responded. I hope you don't mind > that I am not responding individually, but my fingers are not being > cooperative tonight. I took my son to the dr and he said the rash is > either poison oak or poison ivy. He gave him a steriod shot and > cream. I asked him if it is possible it is psoriasis related and he > just said if it comes back again off and on it could be. I have never > seen poison oak or poison ivy. So for now we will just watch how it > develops. This dr was more concerned about the migraines, which is > good but when the doctor said it would take about a week for his skin > to start to heal you could see the tears in his eyes. Please pray > that it is just poison oak and will clear with the creams. > > Thank you so much for your kind words of support, its not so much > that I blame my self for giving this to him, but we all know how hard > life is without always having to explain " what the sstuff is all over > your skin. " > > Pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2004 Report Share Posted November 17, 2004 Hi , Thank you for your resonse. I think it probably is just some kind of poison oak that the doctor said, but I just worry because if it is not then it can spread and he is not being treated. I think what bothered me is the doctor didn't seem sure especially after I asked him if it could be psoriasis related. Anyway keep your fingers crossed. I am keeping him home today from school since it is itching terribly and little blisters seem to forming near his eyes. I want to try to make sure he doesn't scratch. Thanks Again Pat > > > Hi Pat, I ended up finding your original posting about your son. I > agree with others.....take it one step at a time and regardless of > what it ends up being....don't blame yourself. Neither of my > parents have PA and, regardless, at one point they expressed feeling > bad/guilty. I was shocked. It never occured to me to blame > them.....just as I'm sure your son isn't looking at you with > suspicion. It sounds like there's a good chance that it's not what > you are fearing. Keep us posted. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2005 Report Share Posted January 4, 2005 Hi Caitlyn, Thanks for the update. The HCG response seems really encouraging. I suppose the change in doctors will add a little complication at first, but the endo did you a big favor admitting he was out of his league. You've already heard my pitch for the Mayo Clinic. Their mix of top endocrinology and pediatric departments seems great. Medical treatment for children & adolescents is a little tricky, and docs shouldn't treat them like they were merely small adults. You're a helluva mom. Best wishes, Bruce A major problem > > Not much to say right now except that after my son's HCG injections, > all of his hormone levels went up significantly (I posted these in an > earlier post). My endo's latest advise? He wants to refer my son to > someone else because he feels this is out of his level of expertise > at this point (He has been consulting with doctors from Madison, WI > with test results, etc...). He is checking on who he can refer us to > and whether our insurance will pay or not. We will either have to go > to Madison, WI or Rochester, MN. Both long drives but we will go > where we have to if it will benifit our son. Once we have more info., > I will let you know. > Thanx, > > Caitlyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2005 Report Share Posted January 15, 2005 Hi, I have some good news and some bad news. The doctor you need is Dr. R. Don Gambrell, the bad news is he is in Augusta GA. He has a web site and you need to read up on him on GOOGLE as he is world renound. Treats couples with fertility problems, children with growth problems and men with andorpause He answers questions and will perhaps be able to help on getting a specialist closer to wherever you are. http://www.members.aol.com/gambr999/ ernestnolan > > Not much to say right now except that after my son's HCG injections, > all of his hormone levels went up significantly (I posted these in an > earlier post). My endo's latest advise? He wants to refer my son to > someone else because he feels this is out of his level of expertise > at this point (He has been consulting with doctors from Madison, WI > with test results, etc...). He is checking on who he can refer us to > and whether our insurance will pay or not. We will either have to go > to Madison, WI or Rochester, MN. Both long drives but we will go > where we have to if it will benifit our son. Once we have more info., > I will let you know. > Thanx, > > Caitlyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2005 Report Share Posted December 16, 2005 - That's great! It's always nice to hear the positive stories. Very encouraging. Thanks for the update. In a message dated 12/16/2005 4:04:12 PM Eastern Standard Time, grizz140@... writes: Only a few months ago I was feeling very desperate and hopeless. We had been trying for so long to get his ocd better and it just kept getting worse. It feels so very good to have things getting better. I just thought that since I've posted so much about our struggles that I should let you all know that things have gotten much better. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2005 Report Share Posted December 17, 2005 It's nice to hear about successes too - it gives me hope! > > Hi everyone. I just thought I'd post an update. My son (whose > doctor gave up on him a few months ago) is doing much better. He > saw a new doctor in Nov. who is alot more aggressive with meds. We > now have him on 20mg of prozac and 125mg of anafranil. His > obsessions and compulsions have reduced alot. He still has anxiety > attacks here and there especially when he gets bored, but he's much > happier. I guess he has good days and bad ones. He still can't > handle very much homework but he's doing really well on tests even > though he doesn't do all the work. His doctor wants him to go up to > 150mgs of anafranil so I guess it may still get even better yet. I > hope so anyway. We've been going slow with the increases because of > side effects. He gets a tremor and bad heart burn but it seems to > lessen after about 3 or 4 weeks. Unfortunaltly, he broke his arm 3 > days ago when he was play wrestling at school. It was his right arm > so that makes school work kind of tough. Even though it's his arm > instead of ocd requring the " special treatment " , he still doesn't > want to be treated any different. So, he does as much as he can with > his left hand. It's probably the last thing he needed right now but > he's handling in alright. > > Only a few months ago I was feeling very desperate and hopeless. We > had been trying for so long to get his ocd better and it just kept > getting worse. It feels so very good to have things getting > better. I just thought that since I've posted so much about our > struggles that I should let you all know that things have gotten > much better. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2005 Report Share Posted December 17, 2005 , That's wonderful news!!! I hope things continue to get better. My son just got his cast off recently and it was a huge relief. I'm sure your son will feel even better once his arm is healed. Tess He really appreciates not having to wear it. --- rockydazzler1 <grizz140@...> wrote: > Hi everyone. I just thought I'd post an update. My > son (whose > doctor gave up on him a few months ago) is doing > much better. He > saw a new doctor in Nov. who is alot more aggressive > with meds. We > now have him on 20mg of prozac and 125mg of > anafranil. His > obsessions and compulsions have reduced alot. He > still has anxiety > attacks here and there especially when he gets > bored, but he's much > happier. I guess he has good days and bad ones. He > still can't > handle very much homework but he's doing really well > on tests even > though he doesn't do all the work. His doctor wants > him to go up to > 150mgs of anafranil so I guess it may still get even > better yet. I > hope so anyway. We've been going slow with the > increases because of > side effects. He gets a tremor and bad heart burn > but it seems to > lessen after about 3 or 4 weeks. Unfortunaltly, he > broke his arm 3 > days ago when he was play wrestling at school. It > was his right arm > so that makes school work kind of tough. Even though > it's his arm > instead of ocd requring the " special treatment " , he > still doesn't > want to be treated any different. So, he does as > much as he can with > his left hand. It's probably the last thing he > needed right now but > he's handling in alright. > > Only a few months ago I was feeling very desperate > and hopeless. We > had been trying for so long to get his ocd better > and it just kept > getting worse. It feels so very good to have things > getting > better. I just thought that since I've posted so > much about our > struggles that I should let you all know that things > have gotten > much better. > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2005 Report Share Posted December 17, 2005 , That's wonderful news!!! I hope things continue to get better. My son just got his cast off recently and it was a huge relief. I'm sure your son will feel even better once his arm is healed. Tess He really appreciates not having to wear it. --- rockydazzler1 <grizz140@...> wrote: > Hi everyone. I just thought I'd post an update. My > son (whose > doctor gave up on him a few months ago) is doing > much better. He > saw a new doctor in Nov. who is alot more aggressive > with meds. We > now have him on 20mg of prozac and 125mg of > anafranil. His > obsessions and compulsions have reduced alot. He > still has anxiety > attacks here and there especially when he gets > bored, but he's much > happier. I guess he has good days and bad ones. He > still can't > handle very much homework but he's doing really well > on tests even > though he doesn't do all the work. His doctor wants > him to go up to > 150mgs of anafranil so I guess it may still get even > better yet. I > hope so anyway. We've been going slow with the > increases because of > side effects. He gets a tremor and bad heart burn > but it seems to > lessen after about 3 or 4 weeks. Unfortunaltly, he > broke his arm 3 > days ago when he was play wrestling at school. It > was his right arm > so that makes school work kind of tough. Even though > it's his arm > instead of ocd requring the " special treatment " , he > still doesn't > want to be treated any different. So, he does as > much as he can with > his left hand. It's probably the last thing he > needed right now but > he's handling in alright. > > Only a few months ago I was feeling very desperate > and hopeless. We > had been trying for so long to get his ocd better > and it just kept > getting worse. It feels so very good to have things > getting > better. I just thought that since I've posted so > much about our > struggles that I should let you all know that things > have gotten > much better. > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2005 Report Share Posted December 18, 2005 Hi , thanks for the update. I'm so glad he's doing better, and more progress will be made as time goes along!! And I bet HE is feeling better about all this OCD stuff too, as things get easier on those " good days. " What's the old saying - " you haven't failed until you give up trying " - something like that. And he seems very much to be one who doesn't give up, broken arm and all! Keep us updated! > > Hi everyone. I just thought I'd post an update. My son (whose > doctor gave up on him a few months ago) is doing much better. He > saw a new doctor in Nov. who is alot more aggressive with meds. We > now have him on 20mg of prozac and 125mg of anafranil. His > obsessions and compulsions have reduced alot. He still has anxiety Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2006 Report Share Posted June 29, 2006 Hi Everyone, My son had a huge panic attack today. It was his first one. I didn't think you could have them this young, but I guess with ocd it sometimes goes hand in hand. When I think back, I think had her first one at 5. He kept asking, " Am I going to die? " and saying his mouth, head and back felt weird but didn't know what was wrong with him. He kept saying he was going to throw up. He was hysterical. I felt so helpless!!!!!! My daughters p-doc saw him and said it sounds like ocd. He wants me to chart everything until July 12th, and than he'll see him again and how he's doing, than we can make a decision about whether or not he needs meds. He mentioned that when a child with ocd gets a high fever, like my son did, it sometimes makes the ocd so much worse. He also had strep throat about a month ago. Well, just wanted to let everyone know hugs Judy mom to Brittany-11-NT -going into 6th gr-high honor student -Brittany's twin-3-29-95--4-7-95 -9-bp,ocd,adhd,odd,pdd-nos,75mg trazadone 75mg zoloft going into reg 5th gr class-504plan iel 4-ocd, speech problem-going into kindergarten-speech therapy, no meds yet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2006 Report Share Posted June 29, 2006 Hi Judy, sorry he went thru a panic attack! Had to be scary for him. Does the doctor suspect PANDAS OCD? If it is PANDAS, there's a possibility the OC behaviors will just go away after a few weeks on their own. Doesn't always happen of course, we have PANDAS parents here. > > > > Hi Everyone, > My son had a huge panic attack today. It was his first one. I didn't think you could have them this young, but I guess with ocd it sometimes goes hand in hand. When I think back, I think had her first one at 5. He kept asking, " Am I going to die? " and saying his mouth, head and back felt weird but didn't know what was wrong with him. He kept saying he was going to throw up. He was hysterical. I felt so helpless!!!!!! > My daughters p-doc saw him and said it sounds like ocd. He wants me to chart everything until July 12th, and than he'll see him again and how he's doing, than we can make a decision about whether or not he needs meds. He mentioned that when a child with ocd gets a high fever, like my son did, it sometimes makes the ocd so much worse. He also had strep throat about a month ago. > Well, just wanted to let everyone know > hugs > > > Judy > mom to Brittany-11-NT -going into 6th gr-high honor student > -Brittany's twin-3-29-95--4-7-95 > -9-bp,ocd,adhd,odd,pdd-nos,75mg trazadone 75mg zoloft going into reg 5th gr class-504plan > iel 4-ocd, speech problem-going into kindergarten-speech therapy, no meds yet > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2006 Report Share Posted November 18, 2006 > > hi! > > we finally know what my son's liver disease is, he is positive in aih. > he undergoes biopsy and based on the report, he got acute hepatitis > w/mild steatosis. his doc put him on prednisolone (is that the same > w/predisone w/c most of everyone on this group is taking as med?) > he will start his medication tomorrow, his doc advice us that he > rather stop going to school for the meantime. i felt really frustrated > and at the same time feels sorry for my son. he's just 5 yrs old, and > we know that he likes school very much. but we want him to be cured so > i guess no choice for us. > can anyone on this group shares me some advice on how to deal w/this > illness? and idea also on what an aih patient will experience while > taking this kind of med. i know my son cant share much of what his > feeling right now, because his still too young to really explain to us > what he feels. so pls anyone help us. tnks in advance. > btw heres a portion that i dont understand in the report > MICROSCOPIC : > l. Periportal +/- Bridging necrosis > piecemeal necrosis - moderate grade 3 > ll. Intralobular Degeneration and focal necrosis > Ballooning Degeneration - moderate grade 3 > lll. Portal Inflammation - mild grade 1 > lV. Fibrosis - bridging fibrosis grade 3 > > flor > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2006 Report Share Posted December 4, 2006 In a message dated 12/4/2006 1:00:48 P.M. Eastern Standard Time, hippygal@... writes: The last few days have been bliss what a wonderful early Christmas present (even if it only lasts a short time) . Jaxx All good news! I hope it lasts longer than you anticipate. Too bad about the age restriction on the program - was there anything else they could suggest? LT Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2006 Report Share Posted December 4, 2006 Awesome news coming from you as well!! That's great!! and I'm with you... another member here reminded me to take it while it's here ..enjoy it and as she puts it .. " Ride the wave!! " I take each day as it comes ..one a time and stay positive!! Our children are very special and work so hard!! (as do we LOL) An early Christmas present indeed!! ps. Another (HOT) day!! Gardening??!! Geesh I'm jealous .. it is FREEZING here!! LOL Enjoy your day and gardening. Bobbi (NJ) " Each of us represents a star in the sky; sometimes we shine with the rest, sometimes we twinkle alone, and sometimes ... when we least expect it ... we fall and make someone's dreams come true. " --------------------------------- Everyone is raving about the all-new beta. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2006 Report Share Posted December 4, 2006 That is wonderful news, hope it lasts forever. We can always hope, right ? Kim M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2006 Report Share Posted December 4, 2006 so glad to hear!! enjoy (and enjoy that hot weather too - I'm frostbitten - it was a nice late winter but here it is! eileen Quoting Jaxx Brown <hippygal@...>: > As some of you know they were talking about being admitted > into the Child Mental health Unit, well that has been put on hold > because they don't take in under 13 year olds..... Gees I wish they > could have told me that from the start there is no place for > children under 13 here he is only 11, I wouldn't have been sitting > there worrying so much LOL. (Well they do take under 13's but only > 1 intake a year approx.) > > Anyway his Ritalin was not working quite right, so the Pdoc tweaked > it a bit last Frdiay and since then he is so much more clamer and > relaxed which in turn seems to have helped his OCD no end, ok it > could be coincidence with a wanning period but I am making the most > of it, he even managed to dry 6 dishes the other day and didnt get > full of germs LOL. He even got the washing in and touched my and his > sisters clothes and didn't get germs... he has not done this stuff > in I don't know how long, also his Tics have decreased as well, > yesterday I don't think I noticed 1 tic. > > The last few days have been bliss what a wonderful early Christmas > present (even if it only lasts a short time) . > > Anyway thanks for a wonderful group, going to be another hot day > here today so might see if he will do some gardening with me while > we are on a roll :) > > Cheers Jaxx (New Zealand) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2006 Report Share Posted December 4, 2006 Hey we got one good day - tics are back and so is the OCD Oh well we enjoyed the one day :) Cheers Jaxx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2006 Report Share Posted December 4, 2006 boy talk about savour the moment !!!- short but wonderful I'm sure - hang in eileen uoting Jaxx Brown <hippygal@...>: > Hey we got one good day - tics are back and so is the OCD Oh well we > enjoyed the one day :) > > Cheers Jaxx > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2006 Report Share Posted December 7, 2006 That sounds wonderful and I bet you are happy for every waning .... I can't imagine having that kind of weather in December..... sabine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2008 Report Share Posted September 19, 2008 Well the PT from early intervention was out to see my son today. He has both torticollis and plagio. Basically she just did more stretches and is having me continue with them several times a day. They will be checking on him weekly. Her opinion was that his plagio wasn't that bad and to wait it out for now, see how it improves as the tort improves. She pretty much agreed with me that helmeting may be good to look into if it gets worse by the time my son is 6 months old, he's 31/2 months now..so that's what I'm going to do..just wait it out for now and try to reposition as much as possible. I'm curious what you all think about his plagio. I posted a couple of pictures from the back of his head, it's under Connor S. Thanks! Kate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2008 Report Share Posted September 19, 2008 I don't want to overstep my bounds but if you have the opportunity to band at 4 months old your kid will come out with a perfect head, a chance I would say that 99.9% of this community missed. A lot of Doctors, neurosurgeons, Physical Therapist, plastic Surgeon tell us to wait. Banding is kinda scary and new and big unknown to the majority of the medical community. And I bet you have have done more research about banding than the person who is advising you has. They are in niche professions and sometimes are so specialized that there is no real need to research outside of their little world. People say wait it out because it is a security blanket for the situation it makes everyone feel good. I only say this with such urgency because of the time stamp you put on your message. Your son is 3 1/2 months old. Please understand I am saying this with complete and total respect to your family: If you band now you will get perfect results if you wait and have to do it anyway you won't.Sincerely,Mom to Elijah DOC Band grad 8/11/08From: Kate <rtkate@...>Subject: Update on my sonPlagiocephaly Date: Friday, September 19, 2008, 8:25 AM Well the PT from early intervention was out to see my son today. He has both torticollis and plagio. Basically she just did more stretches and is having me continue with them several times a day. They will be checking on him weekly. Her opinion was that his plagio wasn't that bad and to wait it out for now, see how it improves as the tort improves. She pretty much agreed with me that helmeting may be good to look into if it gets worse by the time my son is 6 months old, he's 31/2 months now..so that's what I'm going to do..just wait it out for now and try to reposition as much as possible. I'm curious what you all think about his plagio. I posted a couple of pictures from the back of his head, it's under Connor S. Thanks! Kate Quote Link to comment Share on other sites More sharing options...
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