I'm signing off for today and tomorrow. We are heading out to Halifax today and have to stay over night so we will be there for appointments for Shae at the Children's Hospital at 6:30am :roll:. I'm not a morning person so am not thrilled about that.

Anyway, hold down the fort while I'm gone and I will check in when we get home later on tomorrow.

Good luck with your appointment. We'll miss you!

6:30 a.m.??? Are they totally insane :?: Anyway, how did your appointment go?

Sigh, don't ask. I have no time to get into anything now, I just wanted to drop in quickly to update and let you all know why I still haven't been around (if anyone cares that is.. :lol: :lol: )

Shae has not come out of the sedation at all, she's barely spoken three words since Monday and hasn't even been able to stand on her own, never mind walk or play. She's been puking waaaaaay too much, hasn't slept and hasn't moved under her own power since b/f she went under. I am getting very worried, we've been at our family doctors office twice and I'm giving it one more night b/f I start calling the ped and GI and anyone else I can think of to do something.

Anyway, I'll stop back when I can to catch up on posts and update on Shae's progress. I hope everyone else is doing better than us right now!

Yes Janette, they are insane :lol:.

You and Shae are in my thoughts and prayers, Roni. About the early (insane!) appointment...We finally got Evan's MRI date today. It'll be at the end of September at 8:15 a.m. and is 1 1/2 hours away. Evan is allowed clear fluids until 4 hours before (gee! That's until 4:15 a.m. :roll: ) and is supposed to take his regular meds on time with clear fluid. :roll: I don't think they've ever met a 2-year-old refluxer, not to mention that no child that age can swallow their pills with water. They also expect us to collect x-rays, upper GIs, ultrasounds, etc. from the two hospitals that have done them and to bring them along that day. More run-arounds for tired parents...

Anyway, I hope Shae is doing better soon!!!

(( HUGS ))

Thanks Janette! Don't you hate it when they make us do all their work for them :evil:.

Shae is finally starting to come around, and the vomiting has gone down thankfully. She is nothing more than skin and bones at this point though...she was weighed on Monday b/f the procedures and she was only 23lbs :shock: , that's down two pounds from last year. Although the last time she was weighed there she had clothes on and a bowel full of food, so that could account for the two pounds. Best case scenerio though, she hasn't gained anything since last August and at almost four is the size of most kids at 1-1.5 years :cry: . And of course, that was Monday, before she spent the week on little or no food trying to get her out of this almost coma like state and none-stop puke fest she's been on. Sigh. Oh well, we start the dreaded search for a more beefed up formula for her, one that she can tolerate that is.

Anyway, sorry I've been a little absent...I'll try to be around more now that she is doing a little better.

It's okay. No appology necessary, Roni. Remember...we truly understand! I hope that Shae continues to improve and that you find a new formula that works for her, and soon. Please continue to keep us posted.

Thanks Janette! I will.

HI Roni

Can you mix any kind of powder glucose polymers with her formula? I don't have much experience with feeding tubes so I wasn't sure. I know before Trent started Pediasure, he was on Polycose (Moducal). It was a powder that I would just dissolve in his formula to add callories. That way, I could add as many or as little as I wanted until I found the right combination for him. You've probably already tried this, but that was just the only thing I could think of. I really feel for you and your darling Shae. I know the how hard it is when you're doing all you can and they just will not gain weight. Luckily Trent has been able to tolerate the Pediasure, but I have known kids who could not. Good Luck!

Amy

Hi Roni, I've been thinking of you and praying that Shae gets better soon with her weight. Did her docs ever suggest a fundo to help with her vomiting? Also, I wanted to tell you about Benecalorie. Its a "medical food" with lots of calories - 330 per 1.5 oz serving! You can mix it into almost anything and its such a small serving that maybe it could work for Shae in her formula. I mix it in to Adam's applesauce and he gains nicely when he gets one a day. I order it online from Walgreens. It comes in a case of 24 little cups with the 1.5 oz in each cup. Its white and the consistency is kind of like cornstarch and water and it has no taste. If you contact the company that makes it they will send you a free sample so you wouldnt have to waste money giving it a try - (its like US $35 for a case of 24 servings). You can find the company at www.novartis.com. It has mostly "good" fats and protein and has calcium too so its a good supplement if she can tolerate it - even if she could tolerate half of the 1.5 oz in a day, that would be 115 extra calories in just .75 oz. I have a friend in texas with a vomiting refluxer and he was able to tolerate it and gained 3 pounds since December, more weight than he had gained in the past 18 months!

Hope this helps, fingers crossed for you!

Phyllis
ps...if you want to try it and theres a problem because you're in canada, let me know. I can get it for you and send it on.

Thanks ladies for the suggestions!

We did do Polycose and had to stop it after a few months, she just can't handle anything with a lot of calories. The only reason she has been doing as well as she has the past year or so is b/c I stopped giving her the stuff to increase her calories and dropped her cals/oz from 27 to 22, and fed her for a longer period of time.

There will be no fundo for Shae. First of all, I am dead set against it from everything I have read and heard. I do not think that the problems kids have and the chance of complete failure are worth such an invasive surgery. Especially with how intense her gagging and puking is, she'd pop it in half and hour. Besides which her delayed gatric emptying doesn't make her a good candidate. Her surgeon and GI have also agreed with me, they do not believe it would benefit her either. Although, that's a little disheartening, when the last resort for treatment isn't even an option....then what? You can see why I am so set on awareness and research.

I will look into the Benecal, I think I have actually heard of it before now that I think about it. I tend to think that she would have a horrible reaction to it like everything else but if they offer a free trial sample it might worth trying. Getting it wouldn't be a problem, we are actually going home (Boston, born there with all my family still there) in two weeks for a visit so I could get it then and my mother can always send it to me after that if it did work. Thanks though :D .

I feel for you Roni. Shae is in my prayers. Children should not have to suffer like that just to be able to survive. I'm sure Shae has already been on Reglan or oral Erythromycin. But, those were the main things that used to help Trent with his vomiting. The only problem was he started having some tardive dyskinesia (sp) with the Reglan, and his stomach was extremely sensitive to the oral Erythro (gave him gas). We kept him on the oral erythro for quite a while anyway because it seemed the gas was easier to tolerate than the constant puking. But I eventually took him off. I just hope you can find something soon. It breaks my heart, and I haven't even read the whole book yet. I was going to look for it in the book store here, but it's probably easier and cheaper to get it online, huh?

Amy

Hi again, I hope I didn't offend, Roni (about fundo). I know almost nothing about the surgery except that its supposed to help with vomiting refluxers by reinforcing the LES valve. Since that LES is a muscle (?) you'd think they would be able to come up with something to help strengthen it. Is there any research that you know of going on in that area? Maybe if they developed some kind of stimulator for that specific muscle...? Thats something I would love to see in research. Stimulation works for so many other muscle types of problems so why not the LES.

Thanks Amy! Yes, it is actually easier and cheaper to order direct from the publisher if you decide to order the book. We've gone the route of the prokinetics, didn't work, but thanks for mentioning it.

:lol: , no fear Phyllis, it takes a heck of a lot more than the suggestion of a fundo to offend me :P . Sorry if I sounded a little abrupt with my response on it, I just have strong feelings about it...just like you said, it's something that needs more research. There are new procedures for reflux coming out, or rather they have come out in the past couple years but they are all for adults only and I'm not even really sure about how effective they are either. This is the reason for this site, and my book, I'm convinced that if we could just make enough people aware of how serious this can get that it would be a little easier to raise money for research.

FYI, a portion of the proceeds from the book will be going to PAGER.

Well, the pediasure is a big fat no go....she's back to the way she was all week. Unresponsive, puking and miserable. Sigh.

DID I MENTION HOW MUCH I HATE REFLUX!!

Oh no, Roni! I'm so sorry to hear that! What's the next step?

Janette

P.S. I think we all share your hate of reflux!!!

Bless your heart Roni, and Shae. Well, you can't say you didn't try. I'm so hoping you can find something that works. So what happens if you just give her more of the 20 cal formula (more oz a day) does she puke the same?

Amy

I don't know what the next step is, I suppose we will start to experiment with other similar formulas and see if there is one she can tolerate :roll: . I'm sick over the thought of that, it took us almost a full year to get her settled on Neocate and then another probably six months to get her to a density that worked. If we can't find an intact formula that she can handle, I don't know what will happen.....

Technically we can give her the Neocate for more hours a day but she's already hooked up to the pump for 20 straight hours....doesn't leave too many hours left for extra feeds, plus we were trying to get her off the feeds for longer periods of time to encourage an appetite (and so she can play and have some fun).

I'm going to call the dietician in the am and tell her I am going to try Compleat Pediatric again, she handled that ok for awhile b/f she had her surgery so it might be worth a try again. I will probably wait until after our trip though, I really need to get her back to herself before we go away...and of course during the trip as well.