and after one week...

[FMmom]

After a week on Sucraid, Kaelin's weight went from 53.7 to 55.4 -- almost 2 pounds in one week. Kinda extraordinary...

Initially, she reported feeling calmer but that seems to have receded somewhat. The kid is just amazingly hungry all the time and I never expected to have to feed her so much. I'm woefully unprepared with snacks, so she remains hungry and behaves accordingly (and in my defense, I thought that a snack of two bowls of clam chowder and a large glass of half milk/half cream would more than fill her up!) So I'm mixed on her behavioral changes -- but over the weekend before her appetite kicked up, she was indeed delightful. Even after eating ice cream.

The pain hasn't gone away yet. Sigh. Double sigh. We have another week of medication so we'll see how that goes. I'm hoping she can gain a bit more. We see gastro doc next Friday, so I can't wait to see his reaction to Kaelin gaining four pounds in two weeks (if we can repeat the positives from this week...)

[Charlie Arnold]

I wonder whether also the response depends on which type of CSID she may have with this trial. From my understanding some need enzymes to help starch digestion too as sucrase only does sucrose.

If she has improved eating and gained weight maybe it is worth pushing for step 2 on this as it is a positive change. The pain could be her system is readjusting or again you are only dealing with part of the problem. have you followed the CSID starter diet with her?

Someone posted this to help me on CSID site when I first posted on there so may be worth looking up. You would have much better access to buying enzymes online than me as they are not available in England. I just wonder if just trying sucraid without full dietary advise and considering other missing enzymes is just too random.
Hi Charli(?) Check out these sites as I think they will help you a lot and then please write back with any questions. There are other here who suffer from both CSID and fructose intolerance so they will hopefully see your post. (If not, repost with with FODMAPs in your subject line?)
www.sucraid.net/
www.csidinfo.com/
www.enzymestuff.com/
kirkmanlabs.com/CategoryKirkman/137/Enzymes/
On the Kirkman site, the enzymes that seem to help most of us are the ones with Isogest. One or two of them come in chewable form. I use the Maximum Spectrum one with the greatest results and I get the Carb digest as an extra (plus it's a little cheaper). The folks at Kirkman's were helpful enough to put a note on my account (an others) that we'd get a 25% discount of ordering 6 bottles. I usually get 4 of the Max spectrum and two of the Carb Digest. Also if you sign up for their email newsletter, you will get coupon codes and sometimes they have stuff on sale for 50% off. They also have other vitamins and supplements like the melatonin you mentioned. On last thing I would strongly suggest to you is aloe juice. It seemed to make the greatest difference for my son. He had all the same problems you mentioned (cognitive, etc...) and I really believe the aloe juice (recommended by my holistic health practitioner) cleaned and detoxified his little gut. I buy the one with the green label and it all seems so expensive but I figure I was spending just as much on doctor visits. Another problem was that my son had chronic ear infections and generally seemed more susceptible to illness than the rest of us. Not any more! Here it is: aloeforce.com/products

Not sure on fructose content of aloe juice so wouldn't try it just yet until looked up but it is commonly suggested for digestive system health.

[FMmom]

Kaelin has been taking prescription enzymes for the last four years. She has Pancreatic Insufficiency (fat malabsorption) and Creon has the proper balance of enzymes that she needs. Kids starting on the enzymes generally gain 5, 10, maybe 15 pounds within weeks of starting on enzymes but that has never happened for Kaelin. The tests have been repeated several times (we've done THREE 72-hour fecal fat tests... Ugh!!!!!!!!) and it always shows the same thing. And that is why the gastro doc is so confused. She must be malabsorbing something else, but it's been hard to figure out exactly what and how to combat that.

I didn't put Kaelin on the CSID starter diet for a couple of reasons, namely I didn't know about it... Oops! And argh! -- the plan says no dairy while Sucraid says to add the meds to milk. I'm in a perpetual state of confusion on what foods are okay for Kaelin and which are off limits -- and I just keep mixing up the plans.

Honestly, even if I had known about the starter plan, I wouldn't have used it. If she ever gets diagnosed with CSID, I will do it. But for right now, I wanted to feed her basically the same diet we've been using -- I felt that if I changed too many variables, I wouldn't know what worked. Did Kaelin gain weight due to the extreme diet or did Sucraid make a difference?

I've been using the csidinfo.com list of foods, trying to stick to items that are either safe or okay with Sucraid, but as I mentioned before, sometimes I mix up the list and discover later that I served something that I shouldn't. Interestingly, Kaelin doesn't touch those foods. I'm not sure exactly how she knows what to reject, but she always manages to push away an item that is on one list or another. I made something that used a little flour to thicken the cream sauce and she told me that the sauce hurt her stomach -- she eats cream sauce on other foods, but her stomach detected that this version was bad. She did not see me, nor did I tell her about adding flour.

Here's what I've learned so far:
1. Kaelin is part Bloodhound. I was supposed to make chocolate covered pretzels for a community fair, which I intended to do while Kaelin was in school. But I ended up taking number one daughter to a doctor and never got to it. I didn't want a bag of chocolate around, so after Kaelin went to bed I gave some of the chocolate to KT and hid the rest. Kaelin found it the next morning within a couple of hours of being awake. I don't know why she was looking, I don't know how she discovered it -- but I do know she ate it. All.
2. The bad-food freak out that Kaelin always experienced no longer lasts a few hours. Last week she ate the protein bar she had hidden and it was two solid days of madness. Same with the chocolate.
3. She no longer drops a pound or more when she indulges in these foods -- her weigh went down slightly, but not the free fall we've seen in the past.
4. Her stomach seems to hurt much more when she eats sugar.
5. She hasn't asked for pasta or other starchy foods and the few times she's been served it, she hasn't eaten it (except for a baked potato -- but maybe because she drenched it in a cup of sour cream!) so she can detect what doesn't work for her and adjust her diet accordingly.

The thing I don't know is what role Sucraid has played. Is the weight increase due to the Sucraid or because she's not eating all pasta, et al? (I, at a minimum, will be able to prove to gastro doc that going off the diet absolutely backfires) Is she hungrier due to the Sucraid or is it because she's pooping more?

We'll be running out of Sucraid by the end of the week, so the next step is to keep exactly the same diet and see if Kaelin looses, maintains, or increases her weight without Sucraid. And that should give us just enough info to see if we need to do more testing or just go back to the FM diet and be more patient than we had been in the past...

[Charlie Arnold]

Well yes, a good answer will certainly be if you can stick to the same diet but no sucraid then any changes should give you some sort of answer.

Re the milk, can you get lactofree milk there. One type of CSID cannot tolerate lactose either and certainly Meg has been better noticeably both times I have tried her on the lactofree even though she has tested negative for lactose intolerance. The main difference I noticed was that she woke up brighter and keener in the mornings, making me wonder if it meant she was sleeping more soundly at night. I know some on the low FODMAP diet have to avoid the milk sugars too.

Just found website, can't remember if it was you or someone else has used it Lactaid. www.lactaid.com/products-home#Products

Interesting on the flour, Meg always picks off and leaves pastry whenever she has anything like a pie or a sausage roll. But she likes her pasta and bread.

I suppose the only solution is to keep experimenting.

[FMmom]

Oh! Things I learned...
6.) Kaelin is NOT burping, passing gas, or tasting vomit while drinking milk despite no longer using Lactaid.

We've tried the Lactaid milk before, but it didn't work for Kaelin. The Lactaid milk is regular milk that has the enzyme added -- Kaelin's pediatrician said she probably needs more enzyme than the Lactaid milk provides so we switched to caplet form. Typically she takes three caplets with a cup of milk.

She didn't take any of the Lactaid caplets at school and she left them on the table at breakfast. And yet, despite drinking a full glass of milk (with the Sucraid drops) Kaelin has had no problems with it! I don't understand that, but hey, it's one less pill to take... I know that there is a group of CSID that has problems with dairy -- I don't know how Sucraid enters into that. And I have no idea why Kaelin can drink milk without incident while taking Sucraid.

[Charlie Arnold]

I think these sugar absorption problems should be thought of in terms of the scales of justice. There is a very fine balance that they can cope with, go a mg over their safe balance and things don't work. So it may be with Kaelin that taking out the sucrose means she can cope with the lactose. Or she may be able to cope with some in which case the lactaid milk may now work better.

And also as Lucky has suggested, now they are that bit older their livers can cope better and also their intestines can maybe absorb better.

Meanwhile we just have to continue this constant rebalancing of their safe levels each day.

[Matexpife]

Como Tomar Kamagra Buy Cialis Generic Cialis Tadalafil 40 Mg <a href=http://abuycialisb.com>Cialis</a> Cialis Erbe Naturale