Guest guest Posted October 7, 2003 Report Share Posted October 7, 2003 , I believe the 49 pounds, 50 inches is Jon's exact size at age 8 (last year). Pattie > For those of you who know , the saga goes on.... This is a > long email.... > > We flew in from LA Thursday night, and I stupidly didn't set an > alarm clock for the next morning. Her gastric emptying test was at > 9am, but I figured, I am going to bed at 10pm east coast time -- > noise from the streets is bound to wake me up early! Knocking on > the hotel door awoke me -- housekeeper -- and the clock said > 8:38am. Needless to say we flew out the door, and arrived at the > test at 8:55am, albeit with wet hair for me!!! > > Gastric emptying test was so easy! And it was whole milk!!! Our > Dr. H visit was scheduled for 1pm. For the first time EVER, we were > in her office by 1:30pm and out by 3pm. Incredible!!! > > Well, Jodi, you were right. 's gastric emptying results were > not normal, but not as bad as many RSS kids like Max. Normal is 30 > minutes for the food to begin emptying. was at 193 > minutes. I asked Dr. H -- why is able to eat 1800 calories+ > a day, and all day long. She said that the reason eats all > day long is the learned response for slow gastric emptying. > is incapable of eating 3 large meals, so her body has learned to eat > smaller amounts all day long. > > However, Dr. H is not willing to do a pyloroplasty at this time due > to 's past surgical complications ( J. -- I thought of > you and the sepsis discussion we had!). Also, is quite > constipated, and Dr. H wants to take care of this first, and then > redo the gastric emptying test in January. > > So, now is on Periactin and Prevacid in the morning, and has > Miralax mixed with her OJ. Hopefully this will help get " her > started. " The other thing is that she showed clear signs of " severe > reflux " during the emptying test. As usual, Dr. H doesn't hesitate > to pull out all the stops. While we are in the exam room, she is > calling Dr. Spiglund on the phone for a consult on how to handle > . Truly incredible, the dedication this doctor takes. > > She also spent about 20 minutes at various times showing how > to do division and multiplication ( is 7.....) and just plain > old talking to her, as a normal person. I am learning to keep my > mouth shut and let Dr. H and talk about her care. > > I will tell all of that have older kids that Dr. H's prescription > for NiteBite bars has been a miracle. These are time-released > glucose/cornstarch bars for nighttime. had complained 6 > months ago that she didn't want bedtime milk/cornstarch because she > wanted to learn not to pee during the night. Dr. H talked one on > one with , and they agreed that L would eat a NiteBite each > night. These bars have been even more effective of controlling L's > blood sugar levels than cornstarch alone. The negative is that each > bar costs $1.24. > > So.... Dr. H has asked me to work in my kitchen and try to make my > own duplicate bar. She doesn't know what a terrible cook I am, so I > am going to turn this over to my mother-in-law for a project. If we > can get a reasonable bar, I will let you know. > > But for anyone who wants to try the NiteBites, the chocolate is the > best. And you have to order them in boxes of 6 bars from your > pharmacist (no prescription necessary). > > Good news, bad news. Good news is that 's height has > continued to " climb " up the growth chart, even now at her 3 year > mark on GH. She is now above the 55%'tile mark, growing about 3/4 > of an inch in the last 3 months. > > Bad news is that she didn't gain any weight whatsoever. Although > her actual weight shows on the 20%'tile, this is false positive, > because " this girl doesn't have an ounce of body fat on her entire > body. " She said that she is very worried, and that she is at great > risk for re-hospitalization if she gets ill. She wants us to start > giving her glucose tablets at every quarter break during soccer and > every hour during dance, etc. (She did encourage us to keep her > involved in her athletic activities.) > > So...... enough of a long story. I used to think that life would > get easier as my RSS child got older. And I guess in terms of > actual stress, it does. Getting enough calories in when they are so > tiny is so stressful. But I am learning that as more and more RSS > kids are studied, and we learn more and more, that there is also > more and more for us " older " parents to learn as well. > > Salem (, age 7 yrs 9 months, 49lbs, 50.5 " , GH, > Periactin, Prevacid, Zantac) Quote Link to comment Share on other sites More sharing options...
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