sucraid

[jennifer]

Does anyone have any experience with sucraid? Our gi would like us to try it but we are nervous.

[colormist]

If you are dealing with CSID, I would think it's an excellent idea.

However, since it's oral and it has a "pleasant sweet taste" I don't think it'll get past the nose of many HFIers.

In reading this: (http://www.sucraid.net/about-csid), I'm concerned. Unless this enzyme makes fructose bypass the liver entirely for processing, I'm not sure how it would benefit someone with HFI (and would probably exacerbate the situation). People with CSID cannot absorb fructose through the small intestine so it can be used. (From what I understand) HFIers absorb it just fine, but we can't use it.

I would be a bit wary. Do you have confirmed dx of HFI?

[charlie]

Hi Jennifer,
pop over to my proboard, we are just discussing CSId on there and I have posted a link to a good yahoo group on it. That is obviously what they are thinking of if they are suggesting sucraid. They may be able to point you in the right direction. I have been mulling it over trying it for Meg as even on a very low fructose diet she still has problems so maybe has a problem like CSID instead / as well. From what I can see it doesn't have anything wrong in it for HFI and if your child doesn't dislike sweet tastes then it will be fine. And short term may answer some questions. My biggest problem is trying to source it in the UK so maybe have to wait till we see the consultant next.

One of the biggest misdiagnosis in CSID cases is fructose intolerance so maybe we are on the wrong track. It's not so much the fructose is the problem but the sucrose but most fruits and veg have sucrose in them so it can't get broken down into glucose + fructose components therefore doesn't get absorbed throught the villi just because the particles are too large.

[jennifer]

We are not confirmed HFI yet. However, we have finally gotten a genetic dr. to order the test and it will be covered by insurance!!! At least we have won that battle! However, I think the gi doc feels that although she may not be completely lacking enzymes to digest sucrose maybe she is low enought to produce these symptoms. And I think he wants to try it almost to use as a diagnostic if it helps. We are nervous because the paperwork on it states that the first few doses should be given near a medical facility because of hypersensitive reactions. Also, I was looking at the info in csid and am not sure if it fits or not. It seems to have similar symptoms to HFI and some that are not the same, I think we are in the grey area.

[charlie]

Hey, Jennifer

welcome to the Grey Area Club!!!!!!!!!!

[lucky]

Ahhh.... the "Grey Area" club.... I know it well. It's where science meets medical "limbo" in children like ours. And it's where serious -but confusing- fructose issues lead to many necessary tests for other consideration or elimination.

Because of this, we are a very compassionate group. And a very knowledgeable group. Welcome...

[jennifer]

LOL! Yes the grey area a very frustrating place to be! Looks like we continue on and try to figure it all out on our own! At least in a month we will be closer to answers on HFI with the genetic testing, and then I guess we will have to go from there. Funny, on the topic of sucraid, the genetics doctor we saw had never even heard of it! If nothing else, this whole situation forces patience.

[ukbill]

Personally I would wait for the HFI results.

If HFI is posativly not the case then perhaps try it.. with al the required medical help..

If you give it to your child and HFI is present.. then you could be doing a lot of damage!

For HFI adults the LD50 is around 150 to 200g Fructose. (LD50 is Live / Dead ie the amount you can eat before you have a 50% chance of dieing)

So if you say and average adult is 95 kg and a child is maybe 30KG then 50g or 10 spoonfuls of Sucrose (table sugar) or 5 teaspoons of Fructose could be leathal.

THe LD50 is only recorded if you are alive 24 hours or so after ingestion.. it has no reflection on living with damaged organs (Liver/ Kidneys.. ect..) caused by the posioning.

A Glass of Coke will contain 30g of Sugar.. most of which comes from HFCS so mostly will be Fructose.

I do not know the sugar content of "sucraid" but bet it will be high.

Take care!

[jennifer]

My understanding of sucraid it that it is only an enzyme that helps with sucrose digestion. I do not think it would contain sugar. I think the doctor said that if sucraid helped her, there may be a genetic test to see if she is missing the enzyme to digest sucrose. I assume he was thinking csid in a more mild form since she does not seem to tolerate any corn products either.

I do agree that we should wait to get the HFI results first before trying anything though. I am just so happy that we finally found a doctor to run the test. Blood has been drawn and it is on its way to Baylor, and will even be covered by insurance!

[charlie]

Yes, don't panic Jennifer, it is an enzyme replacement for sucrase (the naturally occuring enzyme that splits sucrose into glucose and fructose) and as far as I can see from my research has no sugar content. Yes, one of the warnings is to first try it near A & E facilities (which makes it a little alarming) but I think that is maybe because the body may have an allergic reaction to the enzyme itself as it doesn't naturally produce it if they have CSID.

The trouble with the enzyme test is that if they haven't got the mutations detected already then you are in the grey area still that they may or may not have it so sucraid may be the next step, it certainly is something I'm considering asking them to try Meg on.

[jennifer]

Thanks Charlie. I guess we will wait for HFI results and then if we dont have answers there we will consider trying sucraid. Let me know how it goes if you try it.