Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 I do that very same thing. Drink down 2 big glasses first thing in the morning. We finally got a water softener system cause we were paying so much for water!! Now if I don't drink enough, my body tells me about it. I think the 2 worst things about drinking nearly nothing but water is there is no taste...and you ALWAYS gotta pee!! Maybe all that water helps keep you from rejecting too. Flushing the system with water is the best way to keep it working so I really don't think there can be a thing as too much water. I would be interested in hearing what your dr thinks about over hydrating and the Hematocrit/hemoglobin levels. Mine never seems too concerned, although they aren't REAL high...just a little elevated. LeighAnn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2003 Report Share Posted September 29, 2003 Good Luck at your app't. on the 7th. I took Metho in pill form and was very ill from it. I now take a 20mg shot a week (injection) and have no nausea...well, at least nothing like when on pills. As far as the Enbrel...lots of us take it and it seems to help some. I haven't had very good luck with it but I know other's have. The fact that you are having so much trouble with your arm/shoulder is not good. Maybe you could just try the Enbrel for a few months? I do not know about Imuran but am sure someone here will have information on it. I had extensive coverage of " P " and when I went on the shots it really cleared a lot of it....again...Good Luck! (Va.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2009 Report Share Posted December 6, 2009 My daughter wears a medical alert bracelet. I had it custom made, since her medical needs that COULD potentially require emergency care are too many to list on a standard MA bracelet! Anyway, hers says, " Down syndrome, Achalasia, access to liquids, overheat risk ( has Anhidrosis, so she does not sweat AT ALL, and can overheat without activity.) Sometimes it's pointless to put the NAMES of whatever she has down, because nobody knows what they are anyway. ~Leah~ On Dec 6, 2009, at 3:21 PM, Bourm wrote: > Hi Tonia, > > Oohhh, how I feel your pain. I have been staying away for awhile > because I can't take any more bad news in my life. But, today I > decided to check in and saw your post. Just what I didn't want to > see. I pray that is having a better day. Hang on and know we > are all sending you strength. > Tia has also been having spasms much more than in the past. Nothing > as bad as . I assume it is from the grief we are dealing with. > My dad has been gone 3 months now and we are still coming to terms > with the reality. Tia read a poem at his service and was so poised. > > Other than the spasms here and there everything else is good. I had > a run in with the bus garage. I had contacted the bus garage and > explained she had a health plan and they said it would be no problem > for her to eat or drink on the bus when needed. Well, the driver > wouldn't let her have water when she felt a spasm. According to my > son, the driver was mean to Tia. Tia even showed her medic alert > necklace and she still wouldn't let her drink water. Mannnnn, was I > furious. I called the garage and said I wanted to know what I had to > do to make sure this never happened again. I did my homework and > advocated for Tia and somehow the driver never got the message. How > many kids wear medical alert necklaces?? > Anyways, hang in there and I hope feels better. Take care, > > > > ________________________________ > > From: Tonia <tcooper1973@...> > achalasia > Sent: Sun, December 6, 2009 5:54:45 AM > Subject: JAMES BEEN 3 days in HOSPITAL and still having > SPASMS that wont go away!!!!! > > Hi All- and I have been in hospital for 3 days now because of > the esophageal spasms.They just keep getting more and more severe > and are coming almost daily. This bout started Monday night and > continued through Wed morning.His local GI called in Hydrocodone > with no relief. We went to ER Thursday night and they had to admit > him.He was given about every pain med you could think of and finally > got a IV pump for morphine.That took the edge off it did not take it > away. > He got released late last night on a " pain management " plan for the > next 2 weeks. He was sent home with oxycontine,ativan, > xantac,hydrocodo ne and elavil!!!!! > OMG!!!!!!!! > > The local DRs here called Cleveland to talk with DR Rice whom did > not return the call the entire day or evening.I was asked by > hospital Dr to call and see if they would return the call to me.The > Drs were baffled they had not called as they told them of the > emergency. Finally that night Dr shay the gastro DR from CC called > and said Dr Rice had him take care of this and they reccomended he > just get more botox and another dialtion and nothing else could be > done at this point as he is too young.It did not work in July why do > it again.It only caused more spasms!!! > > just cant go on like this any longer.He cant do this till hes > 20 or 3o yrs old. He has missed a week of school just this week and > probaly 8-10 days already the school year for the bad spasm pain. > > We are going to go get another opinion from Dr Luketich in > Pittsburg. I know several of you all here have used him and would > like any feed back you can give me. I am calling him first thing in > the morning to try and get a appointment. I know has used > him but any one else please share feedback if you would please. > I dont know what else we can do, he cant keep dealing with this. I > have even found out he has tried marijuana to help with his pain.He > is to the point of trying to self medicate.... THIS IS > BAD!!!!!!!!! !!!! > > I know he cant stay on these high pain narcotics so what do we do???? > I just pray this other Dr can give us help or find somehting to > help.I just wish they would do the ectomy and get it over with. > > Please any help or support is needed here. > Tonia...losing her mind watching her child go through this > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2009 Report Share Posted December 9, 2009 - Wow doesnt seem like 3 months huh? I know you all miss him dearly! He is looking down on you all daily though : ) I know he was so very proud of his grandbabies : ) Hope things soon get easier to deal with for you all.I cant begin to imagine what yall have gone through. My dad in the past 3 weeks has had 2 strokes and surgery while I have been dealing with all this with .Hopefully he goes home today or tomorrow.Im on over load here! Sorry to hear Tia is having spasms more often too.What is her Dr saying or doing to treat hers? I hear your frustration over the whole bus deal. had a sub one time in school who wouldnt let him have water, He texted me and I said drink it anyway and I will deal with her later.Boyyyyyyy did I! lol I hope the busdriver got repremanded for that big time????? Do you have facebook? Tonia > > Hi Tonia, > > Oohhh, how I feel your pain. I have been staying away for awhile because I can't take any more bad news in my life. But, today I decided to check in and saw your post. Just what I didn't want to see. I pray that is having a better day. Hang on and know we are all sending you strength. > Tia has also been having spasms much more than in the past. Nothing as bad as . I assume it is from the grief we are dealing with. My dad has been gone 3 months now and we are still coming to terms with the reality. Tia read a poem at his service and was so poised. > > Other than the spasms here and there everything else is good. I had a run in with the bus garage. I had contacted the bus garage and explained she had a health plan and they said it would be no problem for her to eat or drink on the bus when needed. Well, the driver wouldn't let her have water when she felt a spasm. According to my son, the driver was mean to Tia. Tia even showed her medic alert necklace and she still wouldn't let her drink water. Mannnnn, was I furious. I called the garage and said I wanted to know what I had to do to make sure this never happened again. I did my homework and advocated for Tia and somehow the driver never got the message. How many kids wear medical alert necklaces?? > Anyways, hang in there and I hope feels better. Take care, > >  > > ________________________________ > > From: Tonia <tcooper1973@...> > achalasia > Sent: Sun, December 6, 2009 5:54:45 AM > Subject: JAMES BEEN 3 days in HOSPITAL and still having SPASMS that wont go away!!!!! > > Hi All- and I have been in hospital for 3 days now because of the esophageal spasms.They just keep getting more and more severe and are coming almost daily. This bout started Monday night and continued through Wed morning.His local GI called in Hydrocodone with no relief. We went to ER Thursday night and they had to admit him.He was given about every pain med you could think of and finally got a IV pump for morphine.That took the edge off it did not take it away. > He got released late last night on a " pain management " plan for the next 2 weeks. He was sent home with oxycontine,ativan, xantac,hydrocodo ne and elavil!!!!! > OMG!!!!!!!! > > The local DRs here called Cleveland to talk with DR Rice whom did not return the call the entire day or evening.I was asked by hospital Dr to call and see if they would return the call to me.The Drs were baffled they had not called as they told them of the emergency. Finally that night Dr shay the gastro DR from CC called and said Dr Rice had him take care of this and they reccomended he just get more botox and another dialtion and nothing else could be done at this point as he is too young.It did not work in July why do it again.It only caused more spasms!!! > > just cant go on like this any longer.He cant do this till hes 20 or 3o yrs old. He has missed a week of school just this week and probaly 8-10 days already the school year for the bad spasm pain. > > We are going to go get another opinion from Dr Luketich in Pittsburg. I know several of you all here have used him and would like any feed back you can give me. I am calling him first thing in the morning to try and get a appointment. I know has used him but any one else please share feedback if you would please. > I dont know what else we can do, he cant keep dealing with this. I have even found out he has tried marijuana to help with his pain.He is to the point of trying to self medicate.... THIS IS BAD!!!!!!!!! !!!! > > I know he cant stay on these high pain narcotics so what do we do???? > I just pray this other Dr can give us help or find somehting to help.I just wish they would do the ectomy and get it over with. > > Please any help or support is needed here. > Tonia...losing her mind watching her child go through this > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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