Tonia and

[Guest guest]

Dear Tonia, Remember weeks ago when I suggested that perhaps it was wrapped to tight or could possibly have slipped? Regarding this I want to make a few points with you.. 1. He is a child... I would NEVER let my child make a potentially life threating decision about his own life. He doesn't have the knowledge, maturity or wisdom to do that. My kid loves his Ped. but he isn't a specialist and he isnt qualified. Some Doctor's have the "God Syndrome" and yes it is real. I certainly would NOT let the plumber fix my electrical problem just because I liked him, even though he is in construction! 2. Your first consideration and obligation as a parent is to protect him and keep him safe. 3. He is entitled to have the BEST CARE and Surgeon that money can buy! Unequivocably! I would never sacrifice the health of one of my children for the unexperienced, or the newbie,

or anything.. because ...God Forbid something might go wrong... And then it did!!!!!!!!! 4.. It was said to me right before Cameron's surgery to get it in writing that Dr. Patti would be the ONLY one to perform his myotomy and fundo.not some resident or intern..Dr. Patti gave me his word! He said it right to my face and that is the way it was!!! 5. I would never hire someone that I liked over qualifications when it came to detail. If you had a $50,000 stained glass window and your son threw a baseball, and broke a pane in it, would you hire the glass guy down the street who says he is qualified to fix it just because you like him? Or would you hire the ZERO personality that is the premier artist for stained glass? ~I hope you are getting the point~ 6. This is really important!!! Read this carefully ... I wrote this before.... A Specialist for achalasia CANNOT just work on your

child! He is an adult doctor... So there are lots of things to consider here. The specialist has a huge team that accompanies him during a surgery of this magnitude. You have to ask them if they have a pediatric chief of surgery and staff they can team with ... 7. Kids are different than adults, your son is still a child, not done growing yet, and he will be going through all kinds of normal hormonal changes. 8. Consider asking if he will grow out of this fundo?? 9. Dialations are done by specialists who know what to do... Perforations are not RARE .... but a very real possibility. He is a child, he has a LONG WAY to go in his lifetime, He deserves the best 10 Consider the wisdom of this board, they have been through LIFETIMES of experience. 11. Find some one who can advocate for you.... who is not scared of asking even the

toughest questions... Like what is my childs anticipated life expectancy with this??? BE armed for truth... it will set you free.... Ignorance is bondage! Wish and wanting only the best for you and your whole family.. I have cried many tears, right at this keyboard, and if it wasnt for some of these people showing me the way, Cameron may not be here today. Maggie, the Sandy {i}s, , Joan, Notan, Cindi, Peggy, Gosh too many to name!!! they all helped me get the courage to go to the best of the best! I have been there! I am a now a med student on every list in every journal... I have been there. Carolyn ... mom to Cameron .... 9 months post myotofundo'd waaa hoo! toniasdogsandi <toniasdogsandi@...> wrote: Heres

what I found out-They done the barrium swallow and it took FOREVER for the liquid to go down.So we then met with the DRs-who said that the swallow study showed that either scar tissue has formed near the end or it could possibly be too tight.They want to do a balloon dialation, look around and measure the opening first and then if needed to open up the area.This is the reason he is having trouble still.The Dr also said that the spasms could be coming from food that is stuck in the E during the night.He said once its dialated he should be extremely better with the swallowing and the spasms should subside drasticaly cause food should not be getting stuck in there as often.My son wants to have his DR do this procedure and my husband too.I did contact the cleavland clinic and they would not even talk with me on the phone! The nurse on call said they could not talk about procedures etc over the phone but I could come

in for a consult.Its like 8 hours from here-hello a conversation and a lil info first would be great. I told her I didnt want advice just wanted to ask about the Drs and see if they do ballon dialtions after a heller and stuff like that and it was a no go.She then said for a small fee that I could go online and ask my question there.Yeah for like $400 bucks.ITs a shame cause I have heard there are great Drs there that do 2 procedures a week on A patients.I did call a second time and was told the same. Go figure..I am concerned greatly in 1 way going back to this DR but in another Im ok.Its like well maybe it is scar tisue or maybe it is just a lil too tight and that couldnt be helped, ugh Just very confused still....I have a few weeks yet to try to research and see what I can find out.They would like to see him on the 14th to do it if hes still having trouble.My son is totaly ok with this and wants to get it done by his

DR.As far as the spasms they did give him nitroglycerin only for the worst case spasms where nothing at all helps and they dont go away.Take a half under the tongue.Last night he had one but the water helped this one.They said it may or may not work.Did warn him that side effect is head aches.I havent yet researched thats tonight agenda.Well any in put would be great! I do wanna say I apologize if I got over sensitive to some post.This has just been very hard and I havent got much support from people around me.I feel there are days I just can crumble.I do appreciate all the advice here and dont want no one to feel like they cant say whats on there mind to me.I know you all care and I can see its like one big family here.Just please bare with me -I so needed the laugh today reading about these t shirts!!! I have not laughed like that for a while.It felt good-Thanks

Links<*> To visit your group on the web, go to:achalasia/<*>