Thursday, February 08, 2007

Sucrose Malabsorption, Face Rash

[Edited to make the correction that it's sucrose, not glucose, that is the suspected problem. Sucrose, like lactose and maltose, is a double sugar which requires a particular enzyme to break it apart into its elements (in the case of sucrose, that would be α-glucose and fructose).]

9:38AM

The GI specialist called this morning. Apparently she had told me Baby E's stool test was negative when we talked a few weeks ago (when I had the flu) but I hadn't registered that bit of information, being sick.

I told her that since we had reintroduced sugars and gotten a new batch of reflux medicine, Baby E had been having symptoms again. However, I thought she was having separate reactions to each.

When I described Baby E's stools and intestinal symptoms to her, she said that it sounds like Baby E has a problem with sucrose. We're going to do another stool sample now that she's eating sugar again, and then will most likely have to take her off sugars again.

The possibility of a sucrose intolerance or congenital sucrase-isomaltase deficiency makes a lot of sense given Baby E's history and symptoms. If she does have it, though, I'm thinking it's most likely a milder form, involving an enzyme deficiency, rather than a more serious condition that involves a complete lack of the enzyme necessary to break down glucose.

###########

I haven't read up on any of this much yet, so am not sure if there is a difference between the two other than the degree of enzyme deficiency. I think there may be a continuum or range of severity. I'll have to do quite a bit of reading about it if it turns out to be an issue with Baby E.

I certainly hope it's just a matter of making sure she doesn't get too much sucrose (avoiding sugar, honey, high-sugar fruits, overload of starches) rather than a complete avoidance of all sucrose (avoiding all sugars of any type as well as all fruits, some vegetables, almost all starches).

Either way, it wouldn't be an easy thing to deal with, and it's unlikely that she would ever grow out of it. It's a rather overwhelming possibility--at least with food allergies, she has some chance of growing out of it. It is possible, though, that if it was the milder form of glucose intolerance she could be able to tolerate more carbohydrates as she got older.

The GI specialist strongly recommended that we try to keep Baby E on the reflux medicine if at all possible, since she will probably get much worse again within a week or two of stopping the omeprazole. There really aren't a whole lot of other options for treating her reflux.

Baby E has been so much better since Tuesday early evening, when I took her back off sugar and the reflux meds. This morning I gave her a dose of the medicine.

I documented the trial carefully.

The picture at the top of this post was taken just as we were beginning breakfast, 9:38 AM.

Here she is just before being given reflux medicine, 10:25AM:

10:25AM


10 minutes after medicine, 10:38 AM:
10:38AM


Approx. 35 minutes after medicine, 11:00AM.

The rash was just barely worse, and a bit more scaly. I decided that she wasn't having enough of a reaction to show up well on a photo, and stopped paying such close attention for a while.

11:00AM

I let the kids watch a video while I did some chores. I checked on the kids frequently, but didn't look closely at Baby E's face until some time later.

By 11:50AM she was very fussy and started saying "ow" repeatedly and throwing tantrums. I had quite a struggle with her to change her diaper, which turned out to include diarrhea.

At that point she was having quite a flare-up:

11:51AM

11:51AM


The rash was starting to fade slightly by around 12:30PM:

12:34PM

12:35PM


By 1:20PM, it was fading quickly, though still slightly redder than it had been in the morning. She was feeling quite a bit better by this point.
1:18PM

1:18PM#2

Tonight, we'll give her the medicine a couple of hours before bedtime. This time I won't assume she's not having a major reaction so soon. I think I may have missed getting photos of the worst part of the rash this morning.

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11 Comments:

Blogger Liz Miller said...

Wow. That's pretty conclusive on the reflux medicine.

So...silly question. Could the glucose reaction explain some of the corn reaction? Or is it totally separate? And is the enzyme glycogen? We just did enzymes in bio lab this week.

6:08 PM  
Blogger purple_kangaroo said...

Liz, it's not a silly question at all. But I don't know the answer at this point. Definitely some of the symptoms we've been attributing to allergies could be sucrose-related.

The enzyme is sucrase, or both sucrase and isomaltase can be missing.

Do you know anything about it? All I know at this point is that lactose and sucrose are both disaccharides or double sugars (as opposed to single sugars like glucose) that require an enzyme to break them apart, and that enzyme can be missing in some people.

12:46 AM  
Blogger Phantom Scribbler said...

I'm relieved to hear that it's sucrose, not glucose, that's suspected.

10:44 AM  
Blogger purple_kangaroo said...

PS, yes I misspoke at first, although the links I posted were for the correct sugar.

I think glucose intolerance presents as diseases like diabetes, hypoglycemia, etc.

11:20 AM  
Blogger my4kids said...

That is interesting that they think it is a sucrose intolerance. We discussed with the GI this week at her appt that Kenzie may have a lactose intolerance may be the cause of some of her problems (so the other one) We are trying her on a lactose free diet this week and then will give it to her this weekend to see if she reacts after being off of it. If we aren't sure then we do the breath hydrogen test which I beleive they do for sucrose also (not sure but they mentioned it in pages you linked) but it seems like a difficult test for a baby. I'm not sure if they ever tested that in the stool tests she has had before though, dr didn't seem to think so. That would be nice if they can figure something out that they can treat though for both kids. I know it could be tough to figure out lactose free around here especially since likes it so much but it would be well worth her feeling better.

4:04 PM  
Blogger Liz Miller said...

According to my biology readings this past week, here's how it works: Each enzyme has a special shape to work on the molecule it's supposed to breakdown - they work like a lock and key. And if for some reason the enzyme is the wrong shape or if it's missing altogether, then it just won't work.

8:07 AM  
Anonymous Anonymous said...

my daughter is 10d I have just been told that she is lactose and sucrose intoleant. I was having hard trouble finding info on this and it is no wonder as I have read an article today that said that a child should not have both. Now I am worried on what is wrong with my poor wee girl.

12:12 AM  
Blogger purple_kangaroo said...

anonymous, it certainly is possible to be intolerant of more than one sugar. You'll want to do some internet searches for the term disaccharide intolerance. Also, check out http://www.csidinfo.com/

I hope you get some answers for your daughter!

1:00 PM  
Blogger debdack said...

oh my god, it is such a relief to know that my baby is not the only one who goes crazy on sugar. my 1 year old is reacting to sucrose and sacchrine in medicines. i am having a lot of trouble finding doctors and dieticians who are fimiliar with sugar issues. her diet is a lot of trial and error at the moment. does any one have a list of veggies to steer clear of?

4:03 AM  
Anonymous Anonymous said...

Dear Moms with sucrose malabsorption problems in your kids:

I have been working with kids for the past few years, showing all the symptoms mentioned in the posts. After a huge amount of research, trial and error supplements and diets, I stumbled across the answer. My 2 kids and most of the kids I work with have 'defective digestive systems'. I see them at the learning stage, where they present with ADD, ADHD, dyslexia, dyspraxia, ASD, ODD, etc. etc.
The problem is in their guts and the sucrose malabsorption is just the tip of the iceberg. I first started with elimination of the 'problem foods' but some kids had nothing left to eat. Then I found 2 books which explained and gave solutions for all these problems. The solution is simple but not easy. You must first heal the gut, the earlier, the better. Within two weeks, the kids were all improving. Within 3 months, most were doing very well. After 6 months the majority quite normal. Autistic kids take a lot longer, about 2 years.
The two books are:
1. GUT AND PSYCHOLOGY SYNDROME by Dr. Natasha Campbell-McBride.
2. BREAKING THE VICIOUS CYCLE by Elaine Gottschall.
I feel sad to see so many parents looking to medications, which only mask the symptoms. Most M.D.'s know nothing about nutrition and usually prescribe meds. for every problem. THE KEY IS IN HEALING THE GUT.
Both books are available online and will change your way of thinking and approaching the problems with your kids.
Good luck.
European Mom

6:45 AM  
Anonymous Anonymous said...

I know this post is old, but my 2 yr old is experiencing the same symptoms. Rash on face, diarrhea, dermagraphia, irritability. This usually happens after she consumes dairy products, but her blood allergy tests were all negative. What did the doctors conclude was causing her symptoms?

9:09 PM  

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