Guest guest Posted August 4, 2004 Report Share Posted August 4, 2004 Sorry to hear of your frustrations. I really have only one suggestion for you. When Grace is on antibiotics she, too, gets diarrhea. Her GI suggested we use Acidophilus along with the antibiotic. You can get it over the counter and it works great. I guess it restores some of the "good" bacteria in the stomach, making digestion easier. I think for Grace we give her one pill (open the pill mix powder with water) a day, but if you ask the pharmacist they will know what dose to use. Also you need to keep the pill bottle in the fridge after you open it. For us it is a life (and butt rash) saver. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2004 Report Share Posted August 4, 2004 Jennie, So sorry you had such a rough time. I hope the venting helped you to feel better. It usually helps me. I hope Logan starts feeling better soon. Geri-Anne and Wyatt, complex I > HI WELL WE GOT BACK WED OF LAST WEEK FROM LOGANS TRIP TO THE > HOSPITAL. I HAVE NEVER DEALT WITH THESE ANESTHESIOLOGISTS BEFORE AND > I THINK THE MEDICINE THEY GAVE HIM WAS WRONG . HE DID NOT WANT TO > WAKE UP AND WHEN HE DID HE WAS REALLY WET IN THE LUNGS. > IT BOTHERED ME BECAUSE OF HIS STRIDOR AND LARENGO(sp ?) MALACIA HAS > SEEMED TO GET WORSE,BUT THESE DR.S TREATED ME LIKE I WAS STUPID. > THEY HAD NEVER DEALT WITH A CHILD WHO HAS HAD A MITOCHONDRIAL > DISORDER. > HAVE ANY OF YOU HAD TO CALL IN YOUR PED TO HELP OUT IN A > SITUATION SIMILAR TO THIS? > I WAS SOO MAD!!!!! > I FELT THEY DID NOT TAKE LOGAN SERIOUSLY!!! BUT DR.GILMER CAME TO > THE RESCUE AND ADMITTED HIM AND WATCHED HIM CLOSELY FOR AWHILE. > HIS STATS DROPPED AND TOOK AWHILE TO GET BACK UP. BUT HE CAME > THROUGH WITH FLYING COLORS. > WE GOT THE REPORT BACK FRI. WHICH WAS NOT GOOD. LOGAN HAS TUMORS > GROWING IN HIS SINUSES AND IS SHOWING SIGHNS OF SMALL STROKES,AFTER > THE CT I NOTICED HE WAS DROOLING TERRIBLE AND HIS TOUNGUE HAD REALLY > SEMED TO LOSE CONTROL. IT WAS VERY LAZY. WE WILL KNOW MORE WHEN WE > GO TO THE DRS ON THE 17TH. HIS HEMATOLOGIST PUT HIM BACK ON AN > ANTIBIOTIC FOR THE SINUITIS BUT THAT IS JUST A PRECAUTIONARY METHOD. > SOME TIMES I DON'T KNOW IF THESE DR.S ACTUALLY KNOW WHAT THEY ARE > DOING !!!!! I THINK IT IS LILKE THEY PLAY ROULETTE WITH LOGAN OH > LETS SPIN THE WHEEL AND ADD A NEW MED! IF NOT LETS KEEP INCREASING > IT UNTIL LOGAN WANTS TO SLEEP ALL DAY. I DON'T KNOW DO ANY OF YOU > GUYS GET FRUSTRATED WITH DRS? > WELL NOW SINCE HE HAS HAD BACK TO BACK ANTIBIOTICS WE ARE > FIGHTING DEHYDRATION WITH LOGAN BECAUSE IT HAS GIVEN HIM > DIARRHEA,AND HE DOES NOT WANT TO DRINK. > I GUESS I AM JUST RANTING AND RAVING ,AND I AM SORRY . BUT I NEEDED > TO VENT. SOMETIMES I THINK WE, AS PARENTS HAVE TO EDUCATE THESE > DRS!!! HAVE ANY OF YOU FELT THIS WAY? > WELL THANK YOU GUYS SOO MUCH FOR LETTING ME GET THIS OFF MY > CHEST !!!!!! > I APPRECIATE ALL OF YOU SOO MUCH. JENNIE THE PROUD MOM OF LOGAN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2004 Report Share Posted August 4, 2004 It sounds like you have been having a bad week! Did the anesthesiologists used an inhaled form of anesthesia? Asenath, as well as others on the list, have had problems waking up from them. We now only use the IV forms when sedation is needed. She does much better with the IV forms. Does Logan have polyps or actual tumors in his sinuses? My oldest Luke has had polyps and the usual treatment is steroids to reduce them along with some antibiotics. As far as teaching the docs, we see that frequently back home. Mito is so rare, and yet I think many cases are missed due to the lack of knowledge of doctors. I have had symptoms since I was a kid (muscle aches, migraines, exercise fatigue, etc.) and then even after I was 20 and really went down hill with stroke episodes, the docs could only guess it might be MS. They never mentioned Mito until my 4 year old was suspected. And then even, it took coming to Mayo to be suspected. The two major hospitals in Iowa never even thought of it! I hope Logan starts feeling better now that he is home. Darla: mommy to: Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy,SID, dev. delays, asthma Zipporrah (7 mon.) Mito, strokes, SID, G-tube, asthma, trach issues, disautonomy, hypo & hypertonicity, migraines > >Reply-To: Mito >To: Mito >Subject: LOGANS CT SCAN >Date: Wed, 04 Aug 2004 05:19:24 -0000 > >HI WELL WE GOT BACK WED OF LAST WEEK FROM LOGANS TRIP TO THE >HOSPITAL. I HAVE NEVER DEALT WITH THESE ANESTHESIOLOGISTS BEFORE AND >I THINK THE MEDICINE THEY GAVE HIM WAS WRONG . HE DID NOT WANT TO >WAKE UP AND WHEN HE DID HE WAS REALLY WET IN THE LUNGS. >IT BOTHERED ME BECAUSE OF HIS STRIDOR AND LARENGO(sp ?) MALACIA HAS >SEEMED TO GET WORSE,BUT THESE DR.S TREATED ME LIKE I WAS STUPID. >THEY HAD NEVER DEALT WITH A CHILD WHO HAS HAD A MITOCHONDRIAL >DISORDER. > HAVE ANY OF YOU HAD TO CALL IN YOUR PED TO HELP OUT IN A >SITUATION SIMILAR TO THIS? > I WAS SOO MAD!!!!! >I FELT THEY DID NOT TAKE LOGAN SERIOUSLY!!! BUT DR.GILMER CAME TO >THE RESCUE AND ADMITTED HIM AND WATCHED HIM CLOSELY FOR AWHILE. >HIS STATS DROPPED AND TOOK AWHILE TO GET BACK UP. BUT HE CAME >THROUGH WITH FLYING COLORS. > WE GOT THE REPORT BACK FRI. WHICH WAS NOT GOOD. LOGAN HAS TUMORS >GROWING IN HIS SINUSES AND IS SHOWING SIGHNS OF SMALL STROKES,AFTER >THE CT I NOTICED HE WAS DROOLING TERRIBLE AND HIS TOUNGUE HAD REALLY >SEMED TO LOSE CONTROL. IT WAS VERY LAZY. WE WILL KNOW MORE WHEN WE >GO TO THE DRS ON THE 17TH. HIS HEMATOLOGIST PUT HIM BACK ON AN >ANTIBIOTIC FOR THE SINUITIS BUT THAT IS JUST A PRECAUTIONARY METHOD. > SOME TIMES I DON'T KNOW IF THESE DR.S ACTUALLY KNOW WHAT THEY ARE >DOING !!!!! I THINK IT IS LILKE THEY PLAY ROULETTE WITH LOGAN OH >LETS SPIN THE WHEEL AND ADD A NEW MED! IF NOT LETS KEEP INCREASING >IT UNTIL LOGAN WANTS TO SLEEP ALL DAY. I DON'T KNOW DO ANY OF YOU >GUYS GET FRUSTRATED WITH DRS? > WELL NOW SINCE HE HAS HAD BACK TO BACK ANTIBIOTICS WE ARE >FIGHTING DEHYDRATION WITH LOGAN BECAUSE IT HAS GIVEN HIM >DIARRHEA,AND HE DOES NOT WANT TO DRINK. > I GUESS I AM JUST RANTING AND RAVING ,AND I AM SORRY . BUT I NEEDED >TO VENT. SOMETIMES I THINK WE, AS PARENTS HAVE TO EDUCATE THESE >DRS!!! HAVE ANY OF YOU FELT THIS WAY? >WELL THANK YOU GUYS SOO MUCH FOR LETTING ME GET THIS OFF MY >CHEST !!!!!! >I APPRECIATE ALL OF YOU SOO MUCH. JENNIE THE PROUD MOM OF LOGAN > > > > >Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2004 Report Share Posted August 4, 2004 Caden had polyps too (which are-i think classified as small tumors or something like that).. They went away with steroid treatment. Krystena LOGANS CT SCAN>Date: Wed, 04 Aug 2004 05:19:24 -0000>>HI WELL WE GOT BACK WED OF LAST WEEK FROM LOGANS TRIP TO THE>HOSPITAL. I HAVE NEVER DEALT WITH THESE ANESTHESIOLOGISTS BEFORE AND>I THINK THE MEDICINE THEY GAVE HIM WAS WRONG . HE DID NOT WANT TO>WAKE UP AND WHEN HE DID HE WAS REALLY WET IN THE LUNGS.>IT BOTHERED ME BECAUSE OF HIS STRIDOR AND LARENGO(sp ?) MALACIA HAS>SEEMED TO GET WORSE,BUT THESE DR.S TREATED ME LIKE I WAS STUPID.>THEY HAD NEVER DEALT WITH A CHILD WHO HAS HAD A MITOCHONDRIAL>DISORDER.> HAVE ANY OF YOU HAD TO CALL IN YOUR PED TO HELP OUT IN A>SITUATION SIMILAR TO THIS?> I WAS SOO MAD!!!!!>I FELT THEY DID NOT TAKE LOGAN SERIOUSLY!!! BUT DR.GILMER CAME TO>THE RESCUE AND ADMITTED HIM AND WATCHED HIM CLOSELY FOR AWHILE.>HIS STATS DROPPED AND TOOK AWHILE TO GET BACK UP. BUT HE CAME>THROUGH WITH FLYING COLORS.> WE GOT THE REPORT BACK FRI. WHICH WAS NOT GOOD. LOGAN HAS TUMORS>GROWING IN HIS SINUSES AND IS SHOWING SIGHNS OF SMALL STROKES,AFTER>THE CT I NOTICED HE WAS DROOLING TERRIBLE AND HIS TOUNGUE HAD REALLY>SEMED TO LOSE CONTROL. IT WAS VERY LAZY. WE WILL KNOW MORE WHEN WE>GO TO THE DRS ON THE 17TH. HIS HEMATOLOGIST PUT HIM BACK ON AN>ANTIBIOTIC FOR THE SINUITIS BUT THAT IS JUST A PRECAUTIONARY METHOD.> SOME TIMES I DON'T KNOW IF THESE DR.S ACTUALLY KNOW WHAT THEY ARE>DOING !!!!! I THINK IT IS LILKE THEY PLAY ROULETTE WITH LOGAN OH>LETS SPIN THE WHEEL AND ADD A NEW MED! IF NOT LETS KEEP INCREASING>IT UNTIL LOGAN WANTS TO SLEEP ALL DAY. I DON'T KNOW DO ANY OF YOU>GUYS GET FRUSTRATED WITH DRS?> WELL NOW SINCE HE HAS HAD BACK TO BACK ANTIBIOTICS WE ARE>FIGHTING DEHYDRATION WITH LOGAN BECAUSE IT HAS GIVEN HIM>DIARRHEA,AND HE DOES NOT WANT TO DRINK.> I GUESS I AM JUST RANTING AND RAVING ,AND I AM SORRY . BUT I NEEDED>TO VENT. SOMETIMES I THINK WE, AS PARENTS HAVE TO EDUCATE THESE>DRS!!! HAVE ANY OF YOU FELT THIS WAY?>WELL THANK YOU GUYS SOO MUCH FOR LETTING ME GET THIS OFF MY>CHEST !!!!!!>I APPRECIATE ALL OF YOU SOO MUCH. JENNIE THE PROUD MOM OF LOGAN>>>>>Please contact mito-owner with any problems or questions.> Quote Link to comment Share on other sites More sharing options...
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