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Like Maggie, you too are one of my inspirations! So thank you! CarolynPeggy Cordero <pegster@...> wrote: Fabulous post Carolyn!>> This is part of a note i sent to susan, but I wanted to share with the new guys!> Carolyn> > Did you find a specialist? I am surprised with a kid that they would wait that long. He doesn't have any margin of loss. I got Cameron a journal and made him write and entry every time he tried to eat,, what he was eating, how many bites, did most go down or come back up. > I want to tell you about the art of swallowing.. It is a very complex function. It amazes me that someone could believe that God is not real.. Pardon me if i offend you> The act of

swallowing begins at the moment a persons brain says, I am hungry. The next step occurs when our olfactory senses pick up a smell. if that smell registers that it is food. (onions one of the strongest) It will make our mouth begin to water. At that instance, the whole swallowing experience begins. At the base of the throat area, mucous begins to form in anticipation of "catching" the food, like a spider web. > When food enters the mouth and we chew it up, saliva is introduced in the food to moisten it to the proper wetness and it is ground up. As we swallow, the mucous acts like a spider web and surrounds the food [bolus] to accompany it down. The muscles at the top half of the esophagus squeeze much like (my favorite analogy) milking a cow. you squeeze from the top down to the bottom. Picture squeezing your pointer finger with your thumb, next the index, ring and pinky fingers. This is the action of the top half of the esophagus. As

the bolus is pushed down the pipe it connects to the next type of muscle. This one works the same as a snake. it has long muscles, squeezing longitudinally, down the Lower half. The Lower Esophageal Sphintcter opens and closes here in anticipation of food dropping in. At the same time that all this is happenng acid is being dumped into the stomach in preparation for digestion. Unfortunately, that Lower Esophagus doesn't open like it is supposed to.The> nerve from the brain has shorted somewhere along the line and didnt send the message to the LES.. there has been alot of preparation for a non event to this point. Pretty hard on the body. In the beginning, the weight of the food sometimes forces the LES to open. > The foam that appears, is a short circuit, too. The over- production of the mucous that is supposed to coat your food. It is like your loveable dog, with drool hanging everywhere. > > One of the things that

Cameron got help with here was to empty the Esophagus before bed... he would purge to make sure he was empty always before laying down. > Another thing that was helpful was .. I cannot remember who told us.. Apologies to you!> This is a little gross be aware...> Cameron discovered to eat ....Any meal... he could take about 5 bites to full. That would leave him enough room to go to into the bathroom, filll a cup with cool water and then he would swallow about 5 times, but never the same, some of the food combo and water would be forced through by the weight and he would then bring the excess back up (gag himself) them start the cycle again, back to the table... > We never had a problem with dehydration, but nutrition was different. I let him eat anything with high calories in it.. no matter what! He conditioned himself to go as long as he needed with out food or water. Sometimes he would drink a few oz. of water, and just

let it sit. Especially if we were walking, to see if it would dribble through. If not, he didnt wait just get rid of it, so it would be sitting there like a sack of marbles in his E.> > , one of the things they forget is the sensation of the food going right into the stomach. Stand yourself at the sink, take a long drink of COLD water think about the sensation of it hitting the bottom of your stomach. Feel it going down. They can't tell.> > While were in UCSF Chldrens Hospital, during his recovery period, we had multitudes of residents, interns, fellows, and doctors coming through. When the day came that Cameron was to have his first sip of water and some ice chips, the room was full. We all waited for that moment, for the report that he could feel it go all the way down, to the stomach.. What a moment. > Children are so precious.. Life is so fragile.. Find the best and take him there. Don't wait! >

Cameron was 234 and 5'9" at the onset. he was 154 lbs after surgery. today he is 160 and 5'10". He had a margin he could lose. I dont think you have that. > We almost lost Cameron.. first to the weight loss and second to the complications in surgery. > Childrens Hospitals do Endoscopies and the manometries alot on kids with gerd, reflux, atresia, etc. It takes less than 15minutes start to finish for an endoscopy and about 20 minutes for a manometry.. They are out for the endo and awake and sitting for the manometry. We had great experinces with both.> > I will try to find the article on the longer myotomy, I think of Sally and Stefan, perhaps that is what he needs..> > It was by Dr. Patti, our surgeon. Please email every Chief of Surgery in all the Childrens hospitals, and ask the questions.. Do you have experience with Achalasia, how many kids have you had? how many myotomies have you done??? Call Cindi's Doc

and ask him if he has done any kids and what Peds did he work with ... > Or check at Baltimore.. > These folks all have assistants that do the insurance work.. The doc and his assistant know when dealing with rare disorders that only they can really deal with the insurance companies, well. Remember about staying with him, rooming in, being with him all the time. I know I havent even dented your questions yet, but keep asking .> Carolyn> mom of Cameron.. .making cupcakes to go to SF tomorrow!> > > > > > > Wooleeacre Productions > Custom Screenprinting > on a small scale!> > > > > > > > ---------------------------------> > Use Photomail to share photos without annoying attachments.>