Guest guest Posted March 7, 2005 Report Share Posted March 7, 2005 Hi everyone, me again, I have a weird question for you. When my kids get a fever, any fever, I can smell rubbing alcohol on their breath, not their body. The higher the fever the stronger the smell, and it is unmisstakably rubbing alcohol. I have not used alcohol on them since they had umbiblical cords, never given them alcohol baths, don't give them medicines with alcohol. I have never had this with me, but my sister also smells of rubbing alcohol on her breath when shes running a fever since she was a child, and she says she can taste it too. This may be nothing, maybe something, any ideas welcome. I told our pediatrician, hes investigating it, so I thought I would ask the experts. Thanks, Lois > [Original Message] > > To: <Mito > > Date: 3/6/2005 12:25:37 AM > Subject: Re: Leighann's crashing > > > I am sorry to hear she isn't doing well. What are you seeing? I > understand the helpless feeling. It can be so frustrating to not be able to > do anything to stop the crash (other than allowing them to rest plenty, > provide lots of fluids, supplements, and etc.). Hopefully it will be a > short one and she will be feeling better soon. > > See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see > a photo look into what Mito looks like > Darla: mommy to > Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, > hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting, > bladder issues, wheelchair for distances, eye issues, autistic behaviors, > gastric emptying issues... > Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD, > dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive > phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy, > hypertonicity, migraines, possible seizures, dumping syndrome, iron > deficiency, ... > Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), & > Marquis (3), Joey & (12 months) (some with Mito symptoms) > > > Re: fresh muscle biopsies > > > > > > > > > > > > We waited more than a year to get into Cleveland clininc to see Cohen. > > > We > > > then were sent to Parikh, a fellow. It was not pretty. He said he would > > do the > > > biopsy and then didn't. He said things like is in the 50th > > percentile for > > > height for a five year old. She was 6 1/2. He said he did testing he did > > not do. > > > He sent paperwork to docs we had not seen in years---against my express > > > wishes. He never opened the films of MRIs and CTs even though he asked > > > for them. > > > > > > Atlanta is close to you. Schoffner is at Children's Health Care of > > Atlanta. They > > > don't take medicaid. They also require written preapproval by insurance > > and > > > copays paid in advance. It would probably be quicker to get a biopsy in > > > Atlanta. It takes about four months to get the report back. > > > > > > If you try Cleveland Clinic, you might be better off finding a great > > > mito > > doc who > > > will ask Cohen to order specific testing done (ex. Whiteman at > > Mayo). > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Please contact mito-owner with any problems or > > > questions. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2005 Report Share Posted March 7, 2005 I would think that there is something going on that you at least want to be aware of. Has your metabolic doctor ever suggested any testing on the kids while they had a fever? You could then take them someplace local to get the testing done. We have had lab orders given to us in the past to use when the kids were symptomatic. There are a lot of things that could be out of whack causing the smell. Ketoacidosis has a sweet fruity smell, but that is serious enough that you would have known long ago if that were the problem (associated with type 1 diabetes). Rod > > > Hi everyone, me again, > > I have a weird question for you. When my kids get a fever, any fever, I > can smell rubbing alcohol on their breath, not their body. The higher the > fever the stronger the smell, and it is unmisstakably rubbing alcohol. > I have not used alcohol on them since they had umbiblical cords, never > given them alcohol baths, don't give them medicines with alcohol. > I have never had this with me, but my sister also smells of rubbing alcohol > on her breath when shes running a fever since she was a child, and she says > she can taste it too. This may be nothing, maybe something, any ideas > welcome. > I told our pediatrician, hes investigating it, so I thought I would ask the > experts. > Thanks, > Lois > > > > > > > > [Original Message] > > From: Darla Klein <honeybear50317@m...> > > To: <Mito > > > Date: 3/6/2005 12:25:37 AM > > Subject: Re: Leighann's crashing > > > > > > I am sorry to hear she isn't doing well. What are you seeing? I > > understand the helpless feeling. It can be so frustrating to not be able > to > > do anything to stop the crash (other than allowing them to rest plenty, > > provide lots of fluids, supplements, and etc.). Hopefully it will be a > > short one and she will be feeling better soon. > > > > See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to > see > > a photo look into what Mito looks like > > Darla: mommy to > > Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G- tube, > > hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting, > > bladder issues, wheelchair for distances, eye issues, autistic behaviors, > > gastric emptying issues... > > Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, > GERD, > > dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive > > phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy, > > hypertonicity, migraines, possible seizures, dumping syndrome, iron > > deficiency, ... > > Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), & > > Marquis (3), Joey & (12 months) (some with Mito symptoms) > > > > > > Re: fresh muscle biopsies > > > > > > > > > > > > > > > > We waited more than a year to get into Cleveland clininc to see > Cohen. > > > > We > > > > then were sent to Parikh, a fellow. It was not pretty. He said he > would > > > do the > > > > biopsy and then didn't. He said things like is in the 50th > > > percentile for > > > > height for a five year old. She was 6 1/2. He said he did testing he > did > > > not do. > > > > He sent paperwork to docs we had not seen in years---against my > express > > > > wishes. He never opened the films of MRIs and CTs even though he > asked > > > > for them. > > > > > > > > Atlanta is close to you. Schoffner is at Children's Health Care of > > > Atlanta. They > > > > don't take medicaid. They also require written preapproval by > insurance > > > and > > > > copays paid in advance. It would probably be quicker to get a biopsy > in > > > > Atlanta. It takes about four months to get the report back. > > > > > > > > If you try Cleveland Clinic, you might be better off finding a great > > > > mito > > > doc who > > > > will ask Cohen to order specific testing done (ex. Whiteman at > > > Mayo). > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Please contact mito-owner with any problems or > > > > questions. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2005 Report Share Posted March 7, 2005 Wow, I have to say reading this post that I would love to send this to every Doctor who said we were crazy... It's called ketosis. My daughter lives in ketosis when she has a fever. Her breath, sweat, hair, urine smells bad. We say it smells like nail polish remover...it's all the same. We were told that it's dehydration at work. They spill ketones and by the time it's in their urine it's usually in their blood. We panic everytime she smells and quickly give her gatorade with a few tablespoons of sugar-(I am only telling you what WE do-by no means should you follow anyones advice without contacting your Doctor). If she starts to vomit then it's a trip to the ER. She has cyclic vomiting triggered by dehydration/ketones. That smell was all we had to go by for the longest time- they would see the fever/ear infection-treat the infection and ignore the kentones-which made her illnesses last much longer than the average kid. Does any of this make sense to you? It's alot of info-I know but I had to respond to your post. , Mom to (10) MITO/GERD/CVS lois saunders wrote: Hi everyone, me again, I have a weird question for you. When my kids get a fever, any fever, I can smell rubbing alcohol on their breath, not their body. The higher the fever the stronger the smell, and it is unmisstakably rubbing alcohol. I have not used alcohol on them since they had umbiblical cords, never given them alcohol baths, don't give them medicines with alcohol. I have never had this with me, but my sister also smells of rubbing alcohol on her breath when shes running a fever since she was a child, and she says she can taste it too. This may be nothing, maybe something, any ideas welcome. I told our pediatrician, hes investigating it, so I thought I would ask the experts. Thanks, Lois > [Original Message] > > To: <Mito > > Date: 3/6/2005 12:25:37 AM > Subject: Re: Leighann's crashing > > > I am sorry to hear she isn't doing well. What are you seeing? I > understand the helpless feeling. It can be so frustrating to not be able to > do anything to stop the crash (other than allowing them to rest plenty, > provide lots of fluids, supplements, and etc.). Hopefully it will be a > short one and she will be feeling better soon. > > See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see > a photo look into what Mito looks like > Darla: mommy to > Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, > hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting, > bladder issues, wheelchair for distances, eye issues, autistic behaviors, > gastric emptying issues... > Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD, > dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive > phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy, > hypertonicity, migraines, possible seizures, dumping syndrome, iron > deficiency, ... > Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), & > Marquis (3), Joey & (12 months) (some with Mito symptoms) > > > Re: fresh muscle biopsies > > > > > > > > > > > > We waited more than a year to get into Cleveland clininc to see Cohen. > > > We > > > then were sent to Parikh, a fellow. It was not pretty. He said he would > > do the > > > biopsy and then didn't. He said things like is in the 50th > > percentile for > > > height for a five year old. She was 6 1/2. He said he did testing he did > > not do. > > > He sent paperwork to docs we had not seen in years---against my express > > > wishes. He never opened the films of MRIs and CTs even though he asked > > > for them. > > > > > > Atlanta is close to you. Schoffner is at Children's Health Care of > > Atlanta. They > > > don't take medicaid. They also require written preapproval by insurance > > and > > > copays paid in advance. It would probably be quicker to get a biopsy in > > > Atlanta. It takes about four months to get the report back. > > > > > > If you try Cleveland Clinic, you might be better off finding a great > > > mito > > doc who > > > will ask Cohen to order specific testing done (ex. Whiteman at > > Mayo). > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Please contact mito-owner with any problems or > > > questions. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2005 Report Share Posted March 7, 2005 , Glad I could help you to realize you're not crazy, really! I've met those doctors, they make me want to walk right back into their office with results a good doctor got from believing us and testing. With my 2 girls it's just their breath, but Leighann doesn't sweat, and Kendall has been our healthy one. She sweats enough for both of them. This makes sense, I got 2 posts from 2 moms suggesting this, which was great, this sounds more logical. This makes sense with Leighann, definately, her system is weaker, and any time she gets sick she stays sick for a lot longer than anyone else. Kendall on the other hand gets sick and just fights it right off, but like I said, shes been healthy. If she is affected by mito, it is very, very, mild. Both girls get the smell and my sister does, but my sister also has the tremors like us. Anyway, this is what I was hoping to find. Now I can give their doctor a direction. He tries so hard and is learning as much as he can, its just nice if we can make it a little easier on him. By the way, if you don't mind me asking, what is GERD and cyclic vomiting? I saw GERD in one of her reports in the hospital, but I only saw it that once, no one ever told me what that was. Thanks for responding, I'm so glad you guys did. This is kind of like a warning sign. Thanks again, Lois Re: fresh muscle biopsies> > >> > >> > >> > > We waited more than a year to get into Cleveland clininc to seeCohen. > > > We> > > then were sent to Parikh, a fellow. It was not pretty. He said hewould> > do the> > > biopsy and then didn't. He said things like is in the 50th> > percentile for> > > height for a five year old. She was 6 1/2. He said he did testing hedid> > not do.> > > He sent paperwork to docs we had not seen in years---against myexpress> > > wishes. He never opened the films of MRIs and CTs even though heasked> > > for them.> > >> > > Atlanta is close to you. Schoffner is at Children's Health Care of> > Atlanta. They> > > don't take medicaid. They also require written preapproval byinsurance> > and> > > copays paid in advance. It would probably be quicker to get a biopsyin> > > Atlanta. It takes about four months to get the report back.> > >> > > If you try Cleveland Clinic, you might be better off finding a great > > > mito> > doc who> > > will ask Cohen to order specific testing done (ex. Whiteman at> > Mayo).> > >> > > > > >> > >> > >> > >> > >> > >> > >> > >> > > Please contact mito-owner with any problems or > > > questions.> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2005 Report Share Posted March 8, 2005 I couldn't believe it when I saw this posting- I always thought I was crazy for thinking my daughter's breath smelled when she was getting sick. I could never pin point the smell- but it made me sick. I asked the pediatrician to smell her breath once, she basically laughed. It is so nice to have this chat so even the weirdest of things can be explored. - Cincinnati > > > Hi everyone, me again, > > I have a weird question for you. When my kids get a fever, any fever, I > can smell rubbing alcohol on their breath, not their body. The higher the > fever the stronger the smell, and it is unmisstakably rubbing alcohol. > I have not used alcohol on them since they had umbiblical cords, never > given them alcohol baths, don't give them medicines with alcohol. > I have never had this with me, but my sister also smells of rubbing alcohol > on her breath when shes running a fever since she was a child, and she says > she can taste it too. This may be nothing, maybe something, any ideas > welcome. > I told our pediatrician, hes investigating it, so I thought I would ask the > experts. > Thanks, > Lois > > > > > > > > [Original Message] > > From: Darla Klein <honeybear50317@m...> > > To: <Mito > > > Date: 3/6/2005 12:25:37 AM > > Subject: Re: Leighann's crashing > > > > > > I am sorry to hear she isn't doing well. What are you seeing? I > > understand the helpless feeling. It can be so frustrating to not be able > to > > do anything to stop the crash (other than allowing them to rest plenty, > > provide lots of fluids, supplements, and etc.). Hopefully it will be a > > short one and she will be feeling better soon. > > > > See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to > see > > a photo look into what Mito looks like > > Darla: mommy to > > Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, > > hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting, > > bladder issues, wheelchair for distances, eye issues, autistic behaviors, > > gastric emptying issues... > > Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, > GERD, > > dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive > > phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy, > > hypertonicity, migraines, possible seizures, dumping syndrome, iron > > deficiency, ... > > Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), & > > Marquis (3), Joey & (12 months) (some with Mito symptoms) > > > > > > Re: fresh muscle biopsies > > > > > > > > > > > > > > > > We waited more than a year to get into Cleveland clininc to see > Cohen. > > > > We > > > > then were sent to Parikh, a fellow. It was not pretty. He said he > would > > > do the > > > > biopsy and then didn't. He said things like is in the 50th > > > percentile for > > > > height for a five year old. She was 6 1/2. He said he did testing he > did > > > not do. > > > > He sent paperwork to docs we had not seen in years---against my > express > > > > wishes. He never opened the films of MRIs and CTs even though he > asked > > > > for them. > > > > > > > > Atlanta is close to you. Schoffner is at Children's Health Care of > > > Atlanta. They > > > > don't take medicaid. They also require written preapproval by > insurance > > > and > > > > copays paid in advance. It would probably be quicker to get a biopsy > in > > > > Atlanta. It takes about four months to get the report back. > > > > > > > > If you try Cleveland Clinic, you might be better off finding a great > > > > mito > > > doc who > > > > will ask Cohen to order specific testing done (ex. Whiteman at > > > Mayo). > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Please contact mito-owner with any problems or > > > > questions. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2005 Report Share Posted March 8, 2005 Ask the Diabetes Educator Archive Advanced Search 5/3/04 Q: Hello, I have recently begun smelling " rubbing alcohol/nail polish remover " on my breath after exercise. I had bought the ketone strips to test my urine and ALWAYS comes back Negative. Could this be any sign of Diabetes even though my ketone strips are negative? I also have numerous other signs that I believe may be linked to diabetes...strange sensations in my hands and feet (cold, hot, tingle)..dizziness. I am unable to get a good nights sleep (awaken abruptly, for no apparent reason, urinating 2-3 times a night)..headaches. Should I test my glucose level with the finger prick? I have also been dieting for the last 4 months and dropped 43 pounds, could the diet be the cause of my symptoms? I am eating a Healthy (low fat diet) NOT Atkins diet.Thanks. A: I do hope by this time you have made an appointment with your healthcare practitioner to check into these symptoms if not resolved on their own. High protein/rapid weight loss can initiate ketosis (fruity breath with rapid fat breakdown), but you indicate you are not following this program. All these symptoms you mentioned can be related to diabetes. You have lost a fair amount of weight in 4 months, but not unreasonable if maintaining a controlled intake and consistent exercise. Clearly you're losing some water weight. Hypoglycemia may also be a play here. Check your blood sugars 1/2 hour after exercise then 1 hour just to see if there is a difference, particularly if this is your dizziest time. Sometimes a liver cleanse can be a path to better blood sugar balance. If you haven't had nutritional counseling to date, you may want to consider this now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2005 Report Share Posted March 8, 2005 Thank you for the response. I have complained about this for years and NO one would listen to me. Wyatt sleeps with a stuffed animal and it even smells of it from his sweat and saliva. I have brought the stuffed animal with me to appointments and one doctor even had the nerve to tell me that I didn't wash his sheets enough. That that was the problem. I know now that whenever it is really strong, we will end up in the hospital. It is my warning sign. On a side note, I was told by my ped to give Wyatt gatorade instead of pedialyte when we can't keep anything in him. Again thanks for the info. I am not crazy and a terrible housekeeper!! Geri-Anne and Wyatt, Complex I -- In Mito , Gianino <jasper@n...> wrote: > Wow, > I have to say reading this post that I would love to send this to every > Doctor who said we were crazy... > It's called ketosis. My daughter lives in ketosis when she has a fever. > Her breath, sweat, hair, urine smells > bad. We say it smells like nail polish remover...it's all the same. We > were told that it's dehydration at work. > They spill ketones and by the time it's in their urine it's usually in > their blood. We panic everytime she smells > and quickly give her gatorade with a few tablespoons of sugar-(I am only > telling you what WE do-by no means > should you follow anyones advice without contacting your Doctor). If > she starts to vomit then it's a trip to the ER. > She has cyclic vomiting triggered by dehydration/ketones. That smell > was all we had to go by for the longest time- > they would see the fever/ear infection-treat the infection and ignore > the kentones-which made her illnesses last > much longer than the average kid. Does any of this make sense to you? > It's alot of info-I know but I had to > respond to your post. > , Mom to (10) MITO/GERD/CVS > > lois saunders wrote: > > > > > > > Hi everyone, me again, > > > > I have a weird question for you. When my kids get a fever, any fever, I > > can smell rubbing alcohol on their breath, not their body. The higher the > > fever the stronger the smell, and it is unmisstakably rubbing alcohol. > > I have not used alcohol on them since they had umbiblical cords, never > > given them alcohol baths, don't give them medicines with alcohol. > > I have never had this with me, but my sister also smells of rubbing > > alcohol > > on her breath when shes running a fever since she was a child, and she > > says > > she can taste it too. This may be nothing, maybe something, any ideas > > welcome. > > I told our pediatrician, hes investigating it, so I thought I would > > ask the > > experts. > > Thanks, > > Lois > > > > > > > > > > > > > > > [Original Message] > > > From: Darla Klein <honeybear50317@m...> > > > To: <Mito > > > > Date: 3/6/2005 12:25:37 AM > > > Subject: Re: Leighann's crashing > > > > > > > > > I am sorry to hear she isn't doing well. What are you seeing? I > > > understand the helpless feeling. It can be so frustrating to not be > > able > > to > > > do anything to stop the crash (other than allowing them to rest plenty, > > > provide lots of fluids, supplements, and etc.). Hopefully it will be a > > > short one and she will be feeling better soon. > > > > > > See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to > > see > > > a photo look into what Mito looks like > > > Darla: mommy to > > > Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, > > > hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting, > > > bladder issues, wheelchair for distances, eye issues, autistic > > behaviors, > > > gastric emptying issues... > > > Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, > > GERD, > > > dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive > > > phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy, > > > hypertonicity, migraines, possible seizures, dumping syndrome, iron > > > deficiency, ... > > > Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia > > (4), & > > > Marquis (3), Joey & (12 months) (some with Mito symptoms) > > > > > > > > > Re: fresh muscle biopsies > > > > > > > > > > > > > > > > > > > > We waited more than a year to get into Cleveland clininc to see > > Cohen. > > > > > We > > > > > then were sent to Parikh, a fellow. It was not pretty. He said he > > would > > > > do the > > > > > biopsy and then didn't. He said things like is in the 50th > > > > percentile for > > > > > height for a five year old. She was 6 1/2. He said he did testing he > > did > > > > not do. > > > > > He sent paperwork to docs we had not seen in years---against my > > express > > > > > wishes. He never opened the films of MRIs and CTs even though he > > asked > > > > > for them. > > > > > > > > > > Atlanta is close to you. Schoffner is at Children's Health Care of > > > > Atlanta. They > > > > > don't take medicaid. They also require written preapproval by > > insurance > > > > and > > > > > copays paid in advance. It would probably be quicker to get a biopsy > > in > > > > > Atlanta. It takes about four months to get the report back. > > > > > > > > > > If you try Cleveland Clinic, you might be better off finding a > > great > > > > > mito > > > > doc who > > > > > will ask Cohen to order specific testing done (ex. Whiteman at > > > > Mayo). > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Please contact mito-owner with any problems or > > > > > questions. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2005 Report Share Posted March 10, 2005 Lois, My daughter, Madison starts the Ketogenic diet next week at Cinti. Children's. I'll definitely be keeping an eye out for the smell as she goes into ketosis and will keep you updated. VERY interesting. > > > > > > > > > Hi everyone, me again, > > > > > > I have a weird question for you. When my kids get a fever, any > > fever, I > > > can smell rubbing alcohol on their breath, not their body. The > > higher the > > > fever the stronger the smell, and it is unmisstakably rubbing > > alcohol. > > > I have not used alcohol on them since they had umbiblical cords, > > never > > > given them alcohol baths, don't give them medicines with alcohol. > > > I have never had this with me, but my sister also smells of > > rubbing alcohol > > > on her breath when shes running a fever since she was a child, and > > she says > > > she can taste it too. This may be nothing, maybe something, any > > ideas > > > welcome. > > > I told our pediatrician, hes investigating it, so I thought I > > would ask the > > > experts. > > > Thanks, > > > Lois > > > > > > > > > > > > > > > > > > > > > > [Original Message] > > > > From: Darla Klein <honeybear50317@m...> > > > > To: <Mito > > > > > Date: 3/6/2005 12:25:37 AM > > > > Subject: Re: Leighann's crashing > > > > > > > > > > > > I am sorry to hear she isn't doing well. What are you > > seeing? I > > > > understand the helpless feeling. It can be so frustrating to > > not be able > > > to > > > > do anything to stop the crash (other than allowing them to rest > > plenty, > > > > provide lots of fluids, supplements, and etc.). Hopefully it > > will be a > > > > short one and she will be feeling better soon. > > > > > > > > See www.caringbridge.org/ia/mitomomof9 and > > www.heartbeatsformito.org to > > > see > > > > a photo look into what Mito looks like > > > > Darla: mommy to > > > > Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, > > G-tube, > > > > hypotonicity, disautonomy, SID, global delays, asthma, cyclic > > vomiting, > > > > bladder issues, wheelchair for distances, eye issues, autistic > > behaviors, > > > > gastric emptying issues... > > > > Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., > > SID, > > > GERD, > > > > dysphasia, 100% G-tube fed, speech delays, extreme fatigue, > > excessive > > > > phlegm, asthma, trach issues, aberrant subclavian artery, > > disautonomy, > > > > hypertonicity, migraines, possible seizures, dumping syndrome, > > iron > > > > deficiency, ... > > > > Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), > > Kezia (4), & > > > > Marquis (3), Joey & (12 months) (some with Mito > > symptoms) > > > > > > > > > > > > Re: fresh muscle biopsies > > > > > > > > > > > > > > > > > > > > > > > > We waited more than a year to get into Cleveland clininc to > > see > > > Cohen. > > > > > > We > > > > > > then were sent to Parikh, a fellow. It was not pretty. He > > said he > > > would > > > > > do the > > > > > > biopsy and then didn't. He said things like is in the > > 50th > > > > > percentile for > > > > > > height for a five year old. She was 6 1/2. He said he did > > testing he > > > did > > > > > not do. > > > > > > He sent paperwork to docs we had not seen in years--- against > > my > > > express > > > > > > wishes. He never opened the films of MRIs and CTs even > > though he > > > asked > > > > > > for them. > > > > > > > > > > > > Atlanta is close to you. Schoffner is at Children's Health > > Care of > > > > > Atlanta. They > > > > > > don't take medicaid. They also require written preapproval by > > > insurance > > > > > and > > > > > > copays paid in advance. It would probably be quicker to get > > a biopsy > > > in > > > > > > Atlanta. It takes about four months to get the report back. > > > > > > > > > > > > If you try Cleveland Clinic, you might be better off finding > > a great > > > > > > mito > > > > > doc who > > > > > > will ask Cohen to order specific testing done (ex. > > Whiteman at > > > > > Mayo). > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Please contact mito-owner with any problems > > or > > > > > > questions. > > > > > > Quote Link to comment Share on other sites More sharing options...
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