Guest guest Posted March 24, 2012 Report Share Posted March 24, 2012 Hi, Everyone....Gareth is now on Levaquin for bronchitis. How in the world can you go from pneumonia to bronchitis when you've been on antibiotics for the past month?!?!? Geeeeeesssshhhhh !!! We got called yesterday to come and pick him up from SKILLS because he was *angry and throwing things*. That's the first time they have EVER seen him that way and were caught off guard. I said *welcome to my world.* I hope the Levaquin works and he doesn't end up back in the hospital. Take care, Everyone.Margaret Mom to Gareth, 23 y/o, DS/ASD/OCD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2012 Report Share Posted March 24, 2012 "How in the world can you go from pneumonia to bronchitis when you've been on antibiotics for the past month?!?!?"Maybe viral instead of bacterial so the antibiotics wouldn't prevent it. In any case I hope Gareth gets to feeling better soon. HugsSent from my iPod Hi, Everyone....Gareth is now on Levaquin for bronchitis. How in the world can you go from pneumonia to bronchitis when you've been on antibiotics for the past month?!?!? Geeeeeesssshhhhh !!! We got called yesterday to come and pick him up from SKILLS because he was *angry and throwing things*. That's the first time they have EVER seen him that way and were caught off guard. I said *welcome to my world.* I hope the Levaquin works and he doesn't end up back in the hospital. Take care, Everyone.Margaret Mom to Gareth, 23 y/o, DS/ASD/OCD = Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2012 Report Share Posted March 24, 2012 OMG, Margaret! When will you guys catch a break! Keep us posted!{{{{{{{{HUGS}}}}}}}}}} Liz Hi, Everyone....Gareth is now on Levaquin for bronchitis. How in the world can you go from pneumonia to bronchitis when you've been on antibiotics for the past month?!?!? Geeeeeesssshhhhh !!! We got called yesterday to come and pick him up from SKILLS because he was *angry and throwing things*. That's the first time they have EVER seen him that way and were caught off guard. I said *welcome to my world.* I hope the Levaquin works and he doesn't end up back in the hospital. Take care, Everyone.Margaret Mom to Gareth, 23 y/o, DS/ASD/OCD -- Liz DeSantis " The person who follows the crowd will usually get no further than the crowd. The one who walks alone is likely to find himself in places no one has ever been before. " " Creativity in living is not without its attendant difficulties, for peculiarity breeds contempt. And the unfortunate thing about being ahead of your time is that when people finally realize you were right, they'll say it was obvious all along. " ---Temple Grandin " Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength. " - Reeves " Knowing trees, I understand the meaning of patience. Knowing grass, I can understand persistence. " - Hal Borland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2012 Report Share Posted March 25, 2012 Margaret I'm so sorry! There really is no let up!You asked me about the craniosacral therapy and I don't know if you got round to looking it up on internet. I looked in Pubmed, and there are plenty of references to 'craniosacral massage' - didn't actually read the articles.Basically it is an offshoot of osteopathy but works through gentle pressure. The therapist feels where there are blockages in the energy flow and works to get things moving. It sounds like quack explained like that, but I know it works for a lot of things. Whether it will help the immune system or not I can't say. A friend of mine who is a therapist did a course with Kern and Professor Porges and came back from London very excited that it might help Matteo. I took him at fortnightly intervals for about 6 months, but gave up as it was a very stressful period for us and I needed to slow things down for myself. However, I'm thinking about starting up again as I know he loved going. I looked for Kern on google and found the following if you want to check it out. http://www.craniosacraltherapy.org/Whatis.htm I really hope Gareth starts to improve with these latest antibiotics. Da: Liz DeSantis A: Inviato: Domenica 25 Marzo 2012 3:17 Oggetto: Re: Gareth update OMG, Margaret! When will you guys catch a break! Keep us posted!{{{{{{{{HUGS}}}}}}}}}} Liz Hi, Everyone....Gareth is now on Levaquin for bronchitis. How in the world can you go from pneumonia to bronchitis when you've been on antibiotics for the past month?!?!? Geeeeeesssshhhhh !!! We got called yesterday to come and pick him up from SKILLS because he was *angry and throwing things*. That's the first time they have EVER seen him that way and were caught off guard. I said *welcome to my world.* I hope the Levaquin works and he doesn't end up back in the hospital. Take care, Everyone.Margaret Mom to Gareth, 23 y/o, DS/ASD/OCD -- Liz DeSantis"The person who follows the crowd will usually get no further than the crowd. The one who walks alone is likely to find himself in places no one has ever been before." "Creativity in living is not without its attendant difficulties, for peculiarity breeds contempt. And the unfortunate thing about being ahead of your time is that when people finally realize you were right, they'll say it was obvious all along."---Temple Grandin "Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength." - Reeves"Knowing trees, I understand the meaning of patience. Knowing grass, I can understand persistence." - Hal Borland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2012 Report Share Posted March 25, 2012 Hi Margaret,I feel so badly for Gareth. It does have to get better. CharlyneSubject: Gareth updateTo: Date: Saturday, March 24, 2012, 3:55 PM Hi, Everyone....Gareth is now on Levaquin for bronchitis. How in the world can you go from pneumonia to bronchitis when you've been on antibiotics for the past month?!?!? Geeeeeesssshhhhh !!! We got called yesterday to come and pick him up from SKILLS because he was *angry and throwing things*. That's the first time they have EVER seen him that way and were caught off guard. I said *welcome to my world.* I hope the Levaquin works and he doesn't end up back in the hospital. Take care, Everyone.Margaret Mom to Gareth, 23 y/o, DS/ASD/OCD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2012 Report Share Posted March 25, 2012 >>>> I said *welcome to my world.* <<<<<ha ha I like that...and hope the levaquin works for himAnnie Hi, Everyone....Gareth is now on Levaquin for bronchitis. How in the world can you go from pneumonia to bronchitis when you've been on antibiotics for the past month?!?!? Geeeeeesssshhhhh !!! We got called yesterday to come and pick him up from SKILLS because he was *angry and throwing things*. That's the first time they have EVER seen him that way and were caught off guard. I said *welcome to my world.* I hope the Levaquin works and he doesn't end up back in the hospital. Take care, Everyone.Margaret Mom to Gareth, 23 y/o, DS/ASD/OCD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2012 Report Share Posted March 25, 2012 Margaret, Hope that Gareth gets better soon. Sounds like he is probably getting tired of being sick. I will be praying that your world gets a lot more peaceful, quickly! Stauffer Subject: RE: Gareth updateTo: Date: Monday, March 26, 2012, 1:39 AM >>>> I said *welcome to my world.* <<<<< ha ha I like that... and hope the levaquin works for him Annie Hi, Everyone....Gareth is now on Levaquin for bronchitis. How in the world can you go from pneumonia to bronchitis when you've been on antibiotics for the past month?!?!? Geeeeeesssshhhhh !!! We got called yesterday to come and pick him up from SKILLS because he was *angry and throwing things*. That's the first time they have EVER seen him that way and were caught off guard. I said *welcome to my world.* I hope the Levaquin works and he doesn't end up back in the hospital. Take care, Everyone.Margaret Mom to Gareth, 23 y/o, DS/ASD/OCD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2012 Report Share Posted March 26, 2012 What she said!!!! Omg. Hope he's feeling much better soon!And stays that way!Sent from my iPhone OMG, Margaret! When will you guys catch a break! Keep us posted!{{{{{{{{HUGS}}}}}}}}}} Liz Hi, Everyone....Gareth is now on Levaquin for bronchitis. How in the world can you go from pneumonia to bronchitis when you've been on antibiotics for the past month?!?!? Geeeeeesssshhhhh !!! We got called yesterday to come and pick him up from SKILLS because he was *angry and throwing things*. That's the first time they have EVER seen him that way and were caught off guard. I said *welcome to my world.* I hope the Levaquin works and he doesn't end up back in the hospital. Take care, Everyone.Margaret Mom to Gareth, 23 y/o, DS/ASD/OCD -- Liz DeSantis"The person who follows the crowd will usually get no further than the crowd. The one who walks alone is likely to find himself in places no one has ever been before." "Creativity in living is not without its attendant difficulties, for peculiarity breeds contempt. And the unfortunate thing about being ahead of your time is that when people finally realize you were right, they'll say it was obvious all along."---Temple Grandin "Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength." - Reeves"Knowing trees, I understand the meaning of patience. Knowing grass, I can understand persistence." - Hal Borland = Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2012 Report Share Posted March 26, 2012 Prayerssssss ------------------------------ >Hi, Everyone....Gareth is now on Levaquin for bronchitis. How in the >world can you go from pneumonia to bronchitis when you've been on antibiotics >for the past month?!?!? Geeeeeesssshhhhh !!! We got called yesterday to >come and pick him up from SKILLS because he was *angry and throwing things*. > That's the first time they have EVER seen him that way and were caught >off guard. I said *welcome to my world.* I hope the Levaquin works and he >doesn't end up back in the hospital. > >Take care, Everyone. >Margaret >Mom to Gareth, 23 y/o, DS/ASD/OCD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2012 Report Share Posted March 26, 2012 Feel better Gareth! Mom too!! is home with dad she is puking, i think a stomach bug is going around. He has the job of taking care of her and the laundry that follows it Betsy mom to 14 ds/asd > > Hi, Everyone....Gareth is now on Levaquin for bronchitis. How in the > world can you go from pneumonia to bronchitis when you've been on antibiotics > for the past month?!?!? Geeeeeesssshhhhh !!! We got called yesterday to > come and pick him up from SKILLS because he was *angry and throwing things*. > That's the first time they have EVER seen him that way and were caught > off guard. I said *welcome to my world.* I hope the Levaquin works and he > doesn't end up back in the hospital. > > Take care, Everyone. > Margaret > Mom to Gareth, 23 y/o, DS/ASD/OCD > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2012 Report Share Posted March 27, 2012 Oh Margaret.....that poor kid, AND his poor Mom!!! Enough already!!!! Sucks.We have health issues with Maddie too, and I'm pretty devastated. Last November when we met Melmark at the ER, they dx'd her with cellulitis. Melmark didn't trust that and had her seen a few times by their docs and dentist (in case it was an abscess). She had no fever, no loss of appetite, just seemed "off". They did two full rounds of antibiotics anyway, to ensure whatever it was, was being treated. A month later we notice she's got these strange "tics". By Christmas, she had movements so visible that sometimes she looked like she had Parkinson's. I immediately took her off prilosec because that was the only new med she was on. Contacted Dr. Pippin (on New Year's eve day, and she wrote back immediately...she's amazing) and arranged for us to see Dr. Lynch, neuro and head guy at the Trisomy 21 clinic. Movement disorder would sometimes be subtle and other times wild......depending on her sleep and mood. She developed a crazy rash on her face (turns out an immune response to what was going on) that she was obsessed with hitting, so things were just escalating. Dr. Lynch mentions it could a from a too quick wean of abilify but I knew it wasn't weaned quickly....they took over 4 months to wean her. He casually mentioned a strep condition, but we never paid any mind to that....NO ONE NO ONE NO ONE remotely thought of strep, including us. Anyway, bloodwork FINALLY comes back showing high Strep titers, and the poor baby is now left with a condition called Syndenham's chorea and has to be treated long term with antibiotics to keep the tics at bay. Because it involved the development of anti-bodies, it is an immune disorder and lifelong. It's rare....leave it to Maddie! The good news is Dr. Lynch treated the face first with steroids (a one time dose did the trick) and she was finally getting some sleep, then a maintenance dose antibiotic. Sometimes she still has a slight tremor, but it looks to me like it's behavioral now and he expects that to go away (it's very subtle). She is finally back to herself....no bags under her eyes, chipper, giggly and happy. But I'm still so sad for her.Donna Hi, Everyone....Gareth is now on Levaquin for bronchitis. How in the world can you go from pneumonia to bronchitis when you've been on antibiotics for the past month?!?!? Geeeeeesssshhhhh !!! We got called yesterday to come and pick him up from SKILLS because he was *angry and throwing things*. That's the first time they have EVER seen him that way and were caught off guard. I said *welcome to my world.* I hope the Levaquin works and he doesn't end up back in the hospital. Take care, Everyone.Margaret Mom to Gareth, 23 y/o, DS/ASD/OCD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2012 Report Share Posted March 27, 2012 Donna: In your first paragraph I knew where you were going with this. Doctors say that this kind of strep is really rare and I see that you (just as I did when Tony had it) did not mention PANDAS but I think that is what it is. Maybe they explained to you why it wasn't PANDAS. No one used that word with me when Tony had it but I knew enough to request a strep test. When the fast strep test came back negative they said, " see, we told you " . But the slow one came back positive and he had it. He wasn't on antibiotics for very long but he still has tics and I often wonder if I shouldn't have him retested. He was very OCD during this period but seemingly healthy. I applaud medical science for what it can do but remain frustrated by what it cannot do yet. Lori Mom to Isaac 15 and Tony 13 Oh Margaret.....that poor kid, AND his poor Mom!!! Enough already!!!! Sucks. We have health issues with Maddie too, and I'm pretty devastated. Last November when we met Melmark at the ER, they dx'd her with cellulitis. Melmark didn't trust that and had her seen a few times by their docs and dentist (in case it was an abscess). She had no fever, no loss of appetite, just seemed " off " . They did two full rounds of antibiotics anyway, to ensure whatever it was, was being treated. A month later we notice she's got these strange " tics " . By Christmas, she had movements so visible that sometimes she looked like she had Parkinson's. I immediately took her off prilosec because that was the only new med she was on. Contacted Dr. Pippin (on New Year's eve day, and she wrote back immediately...she's amazing) and arranged for us to see Dr. Lynch, neuro and head guy at the Trisomy 21 clinic. Movement disorder would sometimes be subtle and other times wild......depending on her sleep and mood. She developed a crazy rash on her face (turns out an immune response to what was going on) that she was obsessed with hitting, so things were just escalating. Dr. Lynch mentions it could a from a too quick wean of abilify but I knew it wasn't weaned quickly....they took over 4 months to wean her. He casually mentioned a strep condition, but we never paid any mind to that....NO ONE NO ONE NO ONE remotely thought of strep, including us. Anyway, bloodwork FINALLY comes back showing high Strep titers, and the poor baby is now left with a condition called Syndenham's chorea and has to be treated long term with antibiotics to keep the tics at bay. Because it involved the development of anti-bodies, it is an immune disorder and lifelong. It's rare....leave it to Maddie! The good news is Dr. Lynch treated the face first with steroids (a one time dose did the trick) and she was finally getting some sleep, then a maintenance dose antibiotic. Sometimes she still has a slight tremor, but it looks to me like it's behavioral now and he expects that to go away (it's very subtle). She is finally back to herself....no bags under her eyes, chipper, giggly and happy. But I'm still so sad for her. Donna Hi, Everyone....Gareth is now on Levaquin for bronchitis. How in the world can you go from pneumonia to bronchitis when you've been on antibiotics for the past month?!?!? Geeeeeesssshhhhh !!! We got called yesterday to come and pick him up from SKILLS because he was *angry and throwing things*. That's the first time they have EVER seen him that way and were caught off guard. I said *welcome to my world.* I hope the Levaquin works and he doesn't end up back in the hospital. Take care, Everyone.Margaret Mom to Gareth, 23 y/o, DS/ASD/OCD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2012 Report Share Posted March 27, 2012 Hey Lori, Yes, I came across PANDAS immediately and mentioned that to Dr. Lynch also. While Maddie already has OCD, other than obsessing with the face rash, she didn't have the other symptoms. And once we got rid of the face rash, that went away. From what I read, treatment for PANDAS is the same thing Maddie already receives. She's on prozac for the OCD and also gets specialized behavioral therapy and is now on antibiotics. So maybe it's the PANDAS, but we wouldn't do anything different. I have read that some people have done blood transfusions, but that is pretty extreme and not something I am comfortable with at this time. Maddie will stay on the antibiotic for at least a year, with blood tests every 3 months. If bloodwork indicates the need, she'll stay on meds longer. Lori, I don't know that having strep titers necessarily means he would test positive for strep. Maybe you can look into that, and do a titer test on Tony.It's scary, isn't it?????Hugs,Donna Donna: In your first paragraph I knew where you were going with this. Doctors say that this kind of strep is really rare and I see that you (just as I did when Tony had it) did not mention PANDAS but I think that is what it is. Maybe they explained to you why it wasn't PANDAS. No one used that word with me when Tony had it but I knew enough to request a strep test. When the fast strep test came back negative they said, "see, we told you". But the slow one came back positive and he had it. He wasn't on antibiotics for very long but he still has tics and I often wonder if I shouldn't have him retested. He was very OCD during this period but seemingly healthy. I applaud medical science for what it can do but remain frustrated by what it cannot do yet. Lori Mom to Isaac 15 and Tony 13 Oh Margaret.....that poor kid, AND his poor Mom!!! Enough already!!!! Sucks. We have health issues with Maddie too, and I'm pretty devastated. Last November when we met Melmark at the ER, they dx'd her with cellulitis. Melmark didn't trust that and had her seen a few times by their docs and dentist (in case it was an abscess). She had no fever, no loss of appetite, just seemed "off". They did two full rounds of antibiotics anyway, to ensure whatever it was, was being treated. A month later we notice she's got these strange "tics". By Christmas, she had movements so visible that sometimes she looked like she had Parkinson's. I immediately took her off prilosec because that was the only new med she was on. Contacted Dr. Pippin (on New Year's eve day, and she wrote back immediately...she's amazing) and arranged for us to see Dr. Lynch, neuro and head guy at the Trisomy 21 clinic. Movement disorder would sometimes be subtle and other times wild......depending on her sleep and mood. She developed a crazy rash on her face (turns out an immune response to what was going on) that she was obsessed with hitting, so things were just escalating. Dr. Lynch mentions it could a from a too quick wean of abilify but I knew it wasn't weaned quickly....they took over 4 months to wean her. He casually mentioned a strep condition, but we never paid any mind to that....NO ONE NO ONE NO ONE remotely thought of strep, including us. Anyway, bloodwork FINALLY comes back showing high Strep titers, and the poor baby is now left with a condition called Syndenham's chorea and has to be treated long term with antibiotics to keep the tics at bay. Because it involved the development of anti-bodies, it is an immune disorder and lifelong. It's rare....leave it to Maddie! The good news is Dr. Lynch treated the face first with steroids (a one time dose did the trick) and she was finally getting some sleep, then a maintenance dose antibiotic. Sometimes she still has a slight tremor, but it looks to me like it's behavioral now and he expects that to go away (it's very subtle). She is finally back to herself....no bags under her eyes, chipper, giggly and happy. But I'm still so sad for her. Donna Hi, Everyone....Gareth is now on Levaquin for bronchitis. How in the world can you go from pneumonia to bronchitis when you've been on antibiotics for the past month?!?!? Geeeeeesssshhhhh !!! We got called yesterday to come and pick him up from SKILLS because he was *angry and throwing things*. That's the first time they have EVER seen him that way and were caught off guard. I said *welcome to my world.* I hope the Levaquin works and he doesn't end up back in the hospital. Take care, Everyone.Margaret Mom to Gareth, 23 y/o, DS/ASD/OCD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2012 Report Share Posted March 27, 2012 I'm just catchig up with this...I'm speechless...My heart, my love and my prayers are with ALL of you! HUGS! Oh Margaret.....that poor kid, AND his poor Mom!!! Enough already!!!! Sucks. We have health issues with Maddie too, and I'm pretty devastated. Last November when we met Melmark at the ER, they dx'd her with cellulitis. Melmark didn't trust that and had her seen a few times by their docs and dentist (in case it was an abscess). She had no fever, no loss of appetite, just seemed " off " . They did two full rounds of antibiotics anyway, to ensure whatever it was, was being treated. A month later we notice she's got these strange " tics " . By Christmas, she had movements so visible that sometimes she looked like she had Parkinson's. I immediately took her off prilosec because that was the only new med she was on. Contacted Dr. Pippin (on New Year's eve day, and she wrote back immediately...she's amazing) and arranged for us to see Dr. Lynch, neuro and head guy at the Trisomy 21 clinic. Movement disorder would sometimes be subtle and other times wild......depending on her sleep and mood. She developed a crazy rash on her face (turns out an immune response to what was going on) that she was obsessed with hitting, so things were just escalating. Dr. Lynch mentions it could a from a too quick wean of abilify but I knew it wasn't weaned quickly....they took over 4 months to wean her. He casually mentioned a strep condition, but we never paid any mind to that....NO ONE NO ONE NO ONE remotely thought of strep, including us. Anyway, bloodwork FINALLY comes back showing high Strep titers, and the poor baby is now left with a condition called Syndenham's chorea and has to be treated long term with antibiotics to keep the tics at bay. Because it involved the development of anti-bodies, it is an immune disorder and lifelong. It's rare....leave it to Maddie! The good news is Dr. Lynch treated the face first with steroids (a one time dose did the trick) and she was finally getting some sleep, then a maintenance dose antibiotic. Sometimes she still has a slight tremor, but it looks to me like it's behavioral now and he expects that to go away (it's very subtle). She is finally back to herself....no bags under her eyes, chipper, giggly and happy. But I'm still so sad for her. Donna Hi, Everyone....Gareth is now on Levaquin for bronchitis. How in the world can you go from pneumonia to bronchitis when you've been on antibiotics for the past month?!?!? Geeeeeesssshhhhh !!! We got called yesterday to come and pick him up from SKILLS because he was *angry and throwing things*. That's the first time they have EVER seen him that way and were caught off guard. I said *welcome to my world.* I hope the Levaquin works and he doesn't end up back in the hospital. Take care, Everyone.Margaret Mom to Gareth, 23 y/o, DS/ASD/OCD Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.