Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 Hi all MJ, so, like pseudo A., c.pestis is a water pest, huh? Thanks for the additional info...rofl! , Thanks for keeping us updated re: little Ansley, our prayers are with that family!! And also thanks for your prayers re: our little friend's death. (ok, young, but I will always think of in terms of 3 and little....the thing is, she had cancer way back then, so I always thought of her as frail, though she was nothing of the sort in her teenage years, full of life and potential!) Yeah, the Ped's in rehab--for being a " junkie " as he puts it!! Anyway, he had a brain tumor years ago and got addicted to pain meds due to the spinal surgery he had--anyway, he has yrs of sobriety, but relapsed about 2 weeks ago so went into rehab program. Yes, his little girl is sick they are trying to wait on the biopsy results to see if she needs chemo or a transplant. Gee, with that kind ofstress, I guess it figures he would relapse (his dad also had a stroke recently) Anyway, Mo knows the whole story, he's been a great ped. but for personal reasons, I'm going to have trouble trusting him now, we def. will still be friends, but wondering if we need a new ped..... Kathy, If you mean by sooner the decrease in labor time, I am not sure--the last 4 were c-sections due to baby health reasons (jacob's heart dropped, 's stopped, then planned c's after that because they did a quickie vertical incision to get out fast...) But if you mean did they come sooner and sooner, pretty much so--Miranda was a 37 week baby, 38 then 34 then Mallory 36 then ph 34 and just barely 34. , Tobi is the inhaled version of tobra (the iv drug) and it is heralded by many as the miracle drug of CF at least for now.... anyway, it is to target pseudo primarily, but our kids were put on it for maltophilia and pseudo both. the protocal is to take it 28 days on and 28 days off to prevent resistence. Basically, it is 2 extra breathing treatments on the 28 days on... I should take this opportunity, though, to point out that tobi has not been shown to have any effect whatsoever on c.pestis...Also, you mentioned that has lots of gunk--is he on pulmozyme to thin the mucus??? that has been a wonderful help with both of mine , thanks for the thoughts re: . I am still looking forward to when you have to visit Mommy/Daddy and you can say hello to me in Knoxville....it was fun meeting Mo (lots of fun) here in Canada. Kay, you are such a resource! How nice that you pulled that breath holding info out of your hat!! Mandy, Bless your heart, what a scary episode with little Seth. The only thing I would say here is NOT REALLY CF RELATED but happens with rare heart conditions like long QT syndrome, where kids and young adults during strenuous activity (hey, a fit counts as that!!) pass out, turn blue, etc. This is a potentially life threatening condition, so it might be worth mentioning to your ped what happened. Also, there is apparantly some link to long qt syndrome and using propulsid (meaning there may be a link between the propulsid infant/child deaths and long QT syndrome. Anyway, I SWEAR, I AM NOT TRYING TO SCARE ANYONE, but I just wanted to mention this important syndrome, as these kids usually seem very normal until they pass out on the football field, etc... , (JOsh's mom) I am glad to see you decided to join the list! MO, you just had to be todays winner, huh? hehehehehe, that was a good one, had ron right up there with LiPUma's lab, huh? hehe, next thing you know, we will have a real research grant to research c.pestis from the CFF..... Oops, its almost 12:45 am and I just now saw 's suggestion that we chat again tonite at 11....oh well, thats almost too early for me while on vacation anyway, believe it or not....vacation ending countdown begins....we leave for home Wed. am and be home by thursday night! Then, depending on what happens with Dot and Steve, I may go to land to spend time with them AFTER I GET THROUGH THIS MONTHS WORTH OF LAUNDRY No way I can go off and leave ron with all the kids (cept ph, of course...) AND all the dirty laundry! take care everyone, and can I add amandakty to the list of prayers/thoughts (whichever you do.....), she is starting to physically do better, but remembering that she is still very very end stage CF and currently is depressed, needs all the help we can give! Thanks group, love you guys! Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 1999 Report Share Posted August 17, 1999 Jenni, I spoke to both the ped and the pulm and they botha agree for now that it was just a fit.Seth is quite ill tonight.He is drinking juice right now, but he woke up this morning with 100.8 temp.At 7 pm it was 102.0, and at 9:45pm it was 102.9, and at 11:15pm it was at 103.3I'll check it again in a while.I've done the tylonal/motrin swap, and he's been swimming, and I gave him a cool bath.He just shivered and cried at that one.On top of everything else, I was in the potty just now, and someone rng my doorbell.By the time I got there, nobody was there,and Kent is at the station tonight.Freak me out!!!!!!!!!!!!!!!!!!! I don't know yet what I'll do about Seth, we'll see. Mandy Re: Misc. replies >From: Ron88Jen@... > >Hi all >MJ, >so, like pseudo A., c.pestis is a water pest, huh? Thanks for the additional >info...rofl! >, >Thanks for keeping us updated re: little Ansley, our prayers are with that >family!! And also thanks for your prayers re: our little friend's death. >(ok, young, but I will always think of in terms of 3 and little....the >thing is, she had cancer way back then, so I always thought of her as frail, >though she was nothing of the sort in her teenage years, full of life and >potential!) Yeah, the Ped's in rehab--for being a " junkie " as he puts it!! >Anyway, he had a brain tumor years ago and got addicted to pain meds due to >the spinal surgery he had--anyway, he has yrs of sobriety, but relapsed about >2 weeks ago so went into rehab program. Yes, his little girl is sick they >are trying to wait on the biopsy results to see if she needs chemo or a >transplant. Gee, with that kind ofstress, I guess it figures he would >relapse (his dad also had a stroke recently) Anyway, Mo knows the whole >story, he's been a great ped. but for personal reasons, I'm going to have >trouble trusting him now, we def. will still be friends, but wondering if we >need a new ped..... >Kathy, >If you mean by sooner the decrease in labor time, I am not sure--the last 4 >were c-sections due to baby health reasons (jacob's heart dropped, 's >stopped, then planned c's after that because they did a quickie vertical >incision to get out fast...) But if you mean did they come sooner and >sooner, pretty much so--Miranda was a 37 week baby, 38 then 34 >then Mallory 36 then ph 34 and just barely 34. >, >Tobi is the inhaled version of tobra (the iv drug) and it is heralded by many >as the miracle drug of CF at least for now.... anyway, it is to target >pseudo primarily, but our kids were put on it for maltophilia and pseudo >both. the protocal is to take it 28 days on and 28 days off to prevent >resistence. Basically, it is 2 extra breathing treatments on the 28 days >on... I should take this opportunity, though, to point out that tobi has not >been shown to have any effect whatsoever on c.pestis...Also, you mentioned >that has lots of gunk--is he on pulmozyme to thin the mucus??? that >has been a wonderful help with both of mine >, >thanks for the thoughts re: . I am still looking forward to when you >have to visit Mommy/Daddy and you can say hello to me in Knoxville....it was >fun meeting Mo (lots of fun) here in Canada. > >Kay, you are such a resource! How nice that you pulled that breath holding >info out of your hat!! > >Mandy, >Bless your heart, what a scary episode with little Seth. The only thing I >would say here is NOT REALLY CF RELATED but happens with rare heart >conditions like long QT syndrome, where kids and young adults during >strenuous activity (hey, a fit counts as that!!) pass out, turn blue, etc. >This is a potentially life threatening condition, so it might be worth >mentioning to your ped what happened. Also, there is apparantly some link to >long qt syndrome and using propulsid (meaning there may be a link between the >propulsid infant/child deaths and long QT syndrome. Anyway, I SWEAR, I AM >NOT TRYING TO SCARE ANYONE, but I just wanted to mention this important >syndrome, as these kids usually seem very normal until they pass out on the >football field, etc... >, (JOsh's mom) >I am glad to see you decided to join the list! >MO, >you just had to be todays winner, huh? >hehehehehe, that was a good one, had ron right up there with LiPUma's lab, >huh? hehe, next thing you know, we will have a real research grant to >research c.pestis from the CFF..... > >Oops, its almost 12:45 am and I just now saw 's suggestion that we chat >again tonite at 11....oh well, thats almost too early for me while on >vacation anyway, believe it or not....vacation ending countdown begins....we >leave for home Wed. am and be home by thursday night! Then, depending on >what happens with Dot and Steve, I may go to land to spend time with them >AFTER I GET THROUGH THIS MONTHS WORTH OF LAUNDRY No way I can go off and >leave ron with all the kids (cept ph, of course...) AND all the dirty >laundry! >take care everyone, and can I add amandakty to the list of prayers/thoughts >(whichever you do.....), she is starting to physically do better, but >remembering that she is still very very end stage CF and currently is >depressed, needs all the help we can give! Thanks group, love you guys! >Jen > >--------------------------- Quote Link to comment Share on other sites More sharing options...
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