Guest guest Posted March 18, 1999 Report Share Posted March 18, 1999 Anne, Hi, Just getting home from being away for a week. Situations are different but I do want to share what happened to Bart when he was 4 and post hospitalization. Ok Bart never had a feeding tube -but we came very to close at that time. Anyway to say this briefly, he vomited and could not eat for 8 weeks. He went from a 4T to a 2T in those 8 weeks. I believe he was on his deathbed. Now I will remind you we cannot prove he has mitochondria, just a theory. But the hyperalimentation and lipid fats did the trick and he could eat. MRI and gastroenterologist and barium swallow study came out OK. BUT....what was saving his life was messing up his liver enzyme levels. So he had to be taken off the IV. At that time I had been taking him to a chiropractor for 2 years/once a week. He did something non painful called BEST. Basically he touched a pressure point in the temple or neck and another in the area he wanted to heal and held it until the pulse matched each other. Well, after hospitalization for 2 weeks and the prior 8 weeks of vomiting and not being able to eat, I took Bart to the Chiropractor. Bart's stomach was so extended(due to malnutrition) and he could not pass his urine and BM's. This Dr. did this BEST on his liver and I swear afterwards I would never go back to this quack as Bart was doubled over in pain and crying in the parking lot. It was all I could do to get home. But guess what! To my surprise, the next 3 days he dumped and bm'ed and poo pooed like crazy and that dissention was completely gone. Weird, but true! I do know Bart regresses with viruses or bacterial infections. Actually, maybe his autism became apparent after anesthesia when he had tubes put in his ears. Believe he couldn't hear or now I think his hearing was so hypersensitive he learned how to turn his hearing off. Then again, I've read that people with autism need to use only one sensory outlet at one time. Don't mean to look like an advocate for a chiropractor as I have not taken him in several years. But this Dr. I also give credit for helpilng to get Bart to sleep through the night. Hope Zach is doing better. Kathy that he learned how to hh ---------- > > To: mito <mitoonelist> > Cc: ca list <mitochondrialonelist> > Subject: HELP please > Date: Friday, March 12, 1999 11:26 PM > > > > Hi everyone, > Please bear with this as it is long but I need to hear some other > experiences if you are able to share. > > Some of you are aware that our 6 yr. old son, Zachary, had surgery 11 days > ago. It was a GI surgery called a nissen fundoplication and in this case a > redo of the original one. the surgery was about 8 hours. Our > anesthesiologist was wonderful and very cautious in choosing what to use > and closely watched his lactic acid and serum bicarbonate and glucose > levels every hour throughout the surgery. He fortunately also placed an > arterial line for more precise monitoring of acid-base balance. Zach stayed > relatively stable throughout and the surgery itself was technically very > successful. Afterwards he did need to be transfused and he also went into > metabolic acidosis about 30- 60 min after being extubated. he was treated > immediately, thanks to the careful watch of the anesthesia team, with > sodium bicarbonate IV and admitted to Ped. ICU where he remained stable > with bicarbonate and close watching. > > In the first days following surgery he did well. Basically he continued to > improve aside from one night he did seem to have either seizures or > seizure like episodes most likely due to the fact his tegretol was not able > to be given as he could not take meds through the GI tract. The neuro > started him on valium every 6 hours and within 12 hours the episodes > stopped. > > On the 4th day he was started on G tube feeds of 10 cc of pedialyte per > hour. Almost immediately he could not tolerate it . basically his stomach > would not empty it out and it accumulated. Feeds were stopped and then > restarted at 5 cc per hour - same result. Feeds were then stopped > completely. > > On that day he also became utterly exhausted. he could not sit up and at > time could not lift his head. He slept 22 hours a day and this lasted a > few days until he was started on D10 IV fluids rather than D5. Still weak > and having lost 3.5 pounds in just 6 days he was started on TPN and lipids > early this week. Thank God our surgeon had placed a central line during > the original surgery for his own reasons, (wanting an IV he could count on > and to use for frequent labs). His exhaustion then improved . > > Right now he looks wonderful and he acts wonderful. he has no pain at all > and is walking short distances. he goes to hospital based school each > morning and has therapy each afternoon so his activity is good. He is off > all narcotics and has been since about 4 days post op. BUT his stomach is > worse than even a few days ago. Not only will it not empty but he > constantly is draining out bile and secretions. His bowel sounds fluctuate > from hypo to absent. They put him back on all IV meds except tegretol and > CoQ10 as these do not come IV and hours after giving them he drains them > right out. Currently he is still no feeds for obvious reasons. > > No one seems to know what to think or say or do. He is on high dose IV > meds for motility with no effect. he has already had the operation that > opens the stomach into the intestines, (pyloroplasty) which makes this even > more puzzling and frustrating. He has been diagnosed with pseudo > obstruction since he was 18 months old but it was always a milder case and > he did well with 50% G tube drip feeds at night and 50% oral feeds by day > as well as GI meds. But now he appears to have moved into a new stage of > pseudo obstruction more similar to our 22 month old. And no one can say if > it is permanent or temporary although as each day goes by it just seems no > one knows what to say. > > My theory is that surgery , while not causing this per se, was a huge > stress on him and caused his Mito disease to progress. The reason I think > this is because this is exactly what happened with Sam each time he has had > surgery - he gets worse and never recovers what he lost. And even Zach has > shown this to be true in the past with any surgery that lasts longer than > an hour. > > Our doctors want to know if this is seen in other children - please tell me > if it is something you have noticed. Have your children been under > anesthesia for more than an hour and come out worse than they were before? > We don't know what to do. The GI wants us to start thinking about J tube > feeds, the surgeon is hoping things will still turn around. Are our > children the only ones who regress and do not recover their losses with > anesthesia ???? > > If you respond please also copy to me at juhlmann@... so my husband > can pick it out since we are on digest now. I am home tonight but will be > back at the hospital early am so Lou will be the one checking email. > Thanks for any experiences you may be able to share. > > Anne, mom to: > Brittany, 12 > Zachary, 6, Complex I and IV OxPhos defect, G tube > Abby, 5 > , 22 months, presumed complex ! and IV , G tube, J tube, CVL for > TPN/Lipids > > > ------------------------------------------------------------------------ > Start a new hobby. Meet a new friend. > http://www.onelist.com > Onelist: The leading provider of free email list services > ------------------------------------------------------------------------ > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 1999 Report Share Posted April 17, 1999 Kathy, I'm wading thru my email from way back and I can testify to the chiropractic and naturopathic help just like you. S. HELP please >> Date: Friday, March 12, 1999 11:26 PM >> >> >> >> Hi everyone, >> Please bear with this as it is long but I need to hear some other >> experiences if you are able to share. >> >> Some of you are aware that our 6 yr. old son, Zachary, had surgery 11 >days >> ago. It was a GI surgery called a nissen fundoplication and in this case >a >> redo of the original one. the surgery was about 8 hours. Our >> anesthesiologist was wonderful and very cautious in choosing what to use >> and closely watched his lactic acid and serum bicarbonate and glucose >> levels every hour throughout the surgery. He fortunately also placed an >> arterial line for more precise monitoring of acid-base balance. Zach >stayed >> relatively stable throughout and the surgery itself was technically very >> successful. Afterwards he did need to be transfused and he also went >into >> metabolic acidosis about 30- 60 min after being extubated. he was >treated >> immediately, thanks to the careful watch of the anesthesia team, with >> sodium bicarbonate IV and admitted to Ped. ICU where he remained stable >> with bicarbonate and close watching. >> >> In the first days following surgery he did well. Basically he continued >to >> improve aside from one night he did seem to have either seizures or >> seizure like episodes most likely due to the fact his tegretol was not >able >> to be given as he could not take meds through the GI tract. The neuro >> started him on valium every 6 hours and within 12 hours the episodes >> stopped. >> >> On the 4th day he was started on G tube feeds of 10 cc of pedialyte per >> hour. Almost immediately he could not tolerate it . basically his >stomach >> would not empty it out and it accumulated. Feeds were stopped and then >> restarted at 5 cc per hour - same result. Feeds were then stopped >> completely. >> >> On that day he also became utterly exhausted. he could not sit up and at >> time could not lift his head. He slept 22 hours a day and this lasted a >> few days until he was started on D10 IV fluids rather than D5. Still >weak >> and having lost 3.5 pounds in just 6 days he was started on TPN and >lipids >> early this week. Thank God our surgeon had placed a central line during >> the original surgery for his own reasons, (wanting an IV he could count >on >> and to use for frequent labs). His exhaustion then improved . >> >> Right now he looks wonderful and he acts wonderful. he has no pain at >all >> and is walking short distances. he goes to hospital based school each >> morning and has therapy each afternoon so his activity is good. He is >off >> all narcotics and has been since about 4 days post op. BUT his stomach >is >> worse than even a few days ago. Not only will it not empty but he >> constantly is draining out bile and secretions. His bowel sounds >fluctuate >> from hypo to absent. They put him back on all IV meds except tegretol >and >> CoQ10 as these do not come IV and hours after giving them he drains them >> right out. Currently he is still no feeds for obvious reasons. >> >> No one seems to know what to think or say or do. He is on high dose IV >> meds for motility with no effect. he has already had the operation that >> opens the stomach into the intestines, (pyloroplasty) which makes this >even >> more puzzling and frustrating. He has been diagnosed with pseudo >> obstruction since he was 18 months old but it was always a milder case >and >> he did well with 50% G tube drip feeds at night and 50% oral feeds by day >> as well as GI meds. But now he appears to have moved into a new stage of >> pseudo obstruction more similar to our 22 month old. And no one can say >if >> it is permanent or temporary although as each day goes by it just seems >no >> one knows what to say. >> >> My theory is that surgery , while not causing this per se, was a huge >> stress on him and caused his Mito disease to progress. The reason I >think >> this is because this is exactly what happened with Sam each time he has >had >> surgery - he gets worse and never recovers what he lost. And even Zach >has >> shown this to be true in the past with any surgery that lasts longer than >> an hour. >> >> Our doctors want to know if this is seen in other children - please tell >me >> if it is something you have noticed. Have your children been under >> anesthesia for more than an hour and come out worse than they were >before? >> We don't know what to do. The GI wants us to start thinking about J tube >> feeds, the surgeon is hoping things will still turn around. Are our >> children the only ones who regress and do not recover their losses with >> anesthesia ???? >> >> If you respond please also copy to me at juhlmann@... so my >husband >> can pick it out since we are on digest now. I am home tonight but will >be >> back at the hospital early am so Lou will be the one checking email. >> Thanks for any experiences you may be able to share. >> >> Anne, mom to: >> Brittany, 12 >> Zachary, 6, Complex I and IV OxPhos defect, G tube >> Abby, 5 >> , 22 months, presumed complex ! and IV , G tube, J tube, CVL for >> TPN/Lipids >> >> >> ------------------------------------------------------------------------ >> Start a new hobby. Meet a new friend. >> http://www.onelist.com >> Onelist: The leading provider of free email list services >> ------------------------------------------------------------------------ >> Brought to you by www.imdn.org - an on-line support group for those >affected by mitochondrial disease. > > >------------------------------------------------------------------------ >New hobbies? New curiosities? New enthusiasms? >http://www.onelist.com >Sign up for a new email list today >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2006 Report Share Posted December 31, 2006 You are probably not taking enough HC yet to see benefit from it. you are just at 12.5MG? -- Artistic Grooming- Hurricane WV My Ebay Jewelry Store http://stores.ebay.com/valeriescrystalcreations http://www.stopthethyroidmadness.com/ http://health.groups.yahoo.com/group/NaturalThyroidHormonesADRENALS/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2006 Report Share Posted December 31, 2006 You are probably not taking enough HC yet to see benefit from it. you are just at 12.5MG? -- Artistic Grooming- Hurricane WV My Ebay Jewelry Store http://stores.ebay.com/valeriescrystalcreations http://www.stopthethyroidmadness.com/ http://health.groups.yahoo.com/group/NaturalThyroidHormonesADRENALS/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2006 Report Share Posted December 31, 2006 You are probably not taking enough HC yet to see benefit from it. you are just at 12.5MG? -- Artistic Grooming- Hurricane WV My Ebay Jewelry Store http://stores.ebay.com/valeriescrystalcreations http://www.stopthethyroidmadness.com/ http://health.groups.yahoo.com/group/NaturalThyroidHormonesADRENALS/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2006 Report Share Posted December 31, 2006 >Yes, that's right Valarie. I was just increasing it slowly over the last two weeks. You're probably right. I'm going to increase to 5-5- 2.5-2.5 in thre next two or three days. I going to see my doc tomorrow about my saliva tests. This should be interesting. I am feeling alot better though. So alot of people have to get up to 20 to really notice they're adrenals stabalizing and feeling better? Thanks, Kimmie > You are probably not taking enough HC yet to see benefit from it. you > are just at 12.5MG? > > -- > Artistic Grooming- Hurricane WV > My Ebay Jewelry Store http://stores.ebay.com/valeriescrystalcreations > http://www.stopthethyroidmadness.com/ > http://health.groups.yahoo.com/group/NaturalThyroidHormonesADRENALS/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2006 Report Share Posted December 31, 2006 >Yes, that's right Valarie. I was just increasing it slowly over the last two weeks. You're probably right. I'm going to increase to 5-5- 2.5-2.5 in thre next two or three days. I going to see my doc tomorrow about my saliva tests. This should be interesting. I am feeling alot better though. So alot of people have to get up to 20 to really notice they're adrenals stabalizing and feeling better? Thanks, Kimmie > You are probably not taking enough HC yet to see benefit from it. you > are just at 12.5MG? > > -- > Artistic Grooming- Hurricane WV > My Ebay Jewelry Store http://stores.ebay.com/valeriescrystalcreations > http://www.stopthethyroidmadness.com/ > http://health.groups.yahoo.com/group/NaturalThyroidHormonesADRENALS/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2006 Report Share Posted December 31, 2006 >Yes, that's right Valarie. I was just increasing it slowly over the last two weeks. You're probably right. I'm going to increase to 5-5- 2.5-2.5 in thre next two or three days. I going to see my doc tomorrow about my saliva tests. This should be interesting. I am feeling alot better though. So alot of people have to get up to 20 to really notice they're adrenals stabalizing and feeling better? Thanks, Kimmie > You are probably not taking enough HC yet to see benefit from it. you > are just at 12.5MG? > > -- > Artistic Grooming- Hurricane WV > My Ebay Jewelry Store http://stores.ebay.com/valeriescrystalcreations > http://www.stopthethyroidmadness.com/ > http://health.groups.yahoo.com/group/NaturalThyroidHormonesADRENALS/ > Quote Link to comment Share on other sites More sharing options...
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