Some input please...

[Pamela Kay]

I am still trying to figure things out with my son. I know that corn and possibly wheat are triggers for him and we eliminate almost all corn but I am sure he gets some here and there since it is such a hard one. We also limit his wheat, but honestly I am not quite ready to eliminate it totally. We recently started giving him Trienza and it seems to be helping now that he is past the "withdraw" phase. I am wondering if there is something else going on with him though. He still wakes up with his eyes puffy and he is wetting the bed almost every night now. Previously he had gone a few months without. Now I know that with enzymes bed wetting may come back for a few weeks but this has been going on for over five now. Plus before he did not wet quite as much. It may have been a couple times a week. Does anyone have thoughts on this?

 

Last night I heard him talking in his sleep. Now this was not the first time but it was the first time that I thought maybe this is a symptom of something. Also about six months ago I actually heard him gasp for air and I thought of sleep apnea. Shortly after that I took him to a new doctor and actually only got to talk to the nurse. Anyway I had a really bad experience with that visit and honestly forgot about the incident until now. I wonder if that could be part of the puffy eyes puzzle.

[faith]

Hi Pamela Kay,

I'm kind of in the same boat as you, still trying to figure things out. When you said "past the withdraw phase", what did you mean? Did he have any increase of symptoms? or did he just get through that amount of time without any further symptoms? How long have you been giving the trienza? And when you say he seems to be doing well, do you mean less tics? Any detailed feedback would be appreciated as I want to start implementing this soon. I have the enzymes (peptizide and zyme prine) and tried some back in November, but things were not going too well (don't think it was necessarily because of the enzymes) so I stopped most of his supplements to start over. What other supps do you give?

 

Sorry I can't help too much about your questions, but all I can suggest for the time being is to "night lift" him to the bathroom about two hours after he falls asleep, that works for us, he's dry until morning.

 

Faith

[Pamela Kay]

We started giving him the Trienza shortly after his birthday Feb 6th. He was starting to tic again because he had to many sweets. I think it was really the wheat in them cake cookies etc. I guess it could have been the sugar though. Originally I was going to wait until summer or spring break so when he did have his withdraw symptoms it would not effect school but since he was already going through stuff I thought I would give it a try.

 

When I say withdraw symptoms I just mean his body getting use to not having the negative effect on wheat or corn products. He did tic a bit more but it was not severe and it did not last long. He was a bit grouchy and emotional for the first few weeks and he still is if we do not give him the enzyme. I have given him catchup with HFCS two weekends ago and did not see any effect. He does not tic often at all now. But then again his tics were pretty much controlled with diet.

 

As for other supplements I only give him natures parade vitamins and fish oil. Then I give him epsom salt baths.

 

Now I did want to mention that I started giving my older son enzymes also. The reason for him is because he is a really picky eater. Rarely looks you in the eye and sometimes has a hard time concentrating. He is also pretty small for his age and I guess enzymes are suppose to be good for that too. He never had a tic but developed one so I am going to hold off and start again during spring break with less dosage and see how it goes.

[Caryn]

Pamela,

A good confidant told me a couple months back that she had heard from several families of celiac kids with autism spectrum disorders that the enzymes actually made them more neurologically symptomatic than before the enzymes. I have no personal experience with this. I did buy Trienza and have used it sparingly for eating out. He has had them five times in three weeks. (I have only given them at the start of any meal he has eaten when we go out.) We ate out twice on Easter Sunday and he had very high anxiety that night. He was quite fidgety and quite hyper. That was the only time he had enzymes twice in one day and we ate 'seemingly' gluten and corn free fare. It made me nervous to say the least, but whether it was the holiday in general, eating restaurant grade food as opposed to the organics we eat at home, or the enzymes themselves I don't know.

He is back to himself today and hasn't had questionable food or enzymes since then.

This hasn't dissuaded me from using them again, but I am taking mental notes and will look for a pattern.

I was warned that the enzymes are not a magic pill, and so I will keep my eyes open and fingers crossed.

The good news is that he did NOT have any of his typical gastro or digestive issues (explosive diarrhea or puking) as he had before the enzymes when he ate out.

Caryn

[faith]

Pamela,

your son IS celiac or no? Or you just avoid wheat and corn? And those dietary restrictions seem to manange the tics pretty well you say? We are in a bad phase, mostly due to non-compliance of my son with regard to things he's not supposed to have. And this past week was a double whammy, his birthday was Easter Sunday, and he started celebrating Wednesday all thru to Easter. I was powerless to restrict everything, and we are paying for it, although he was not tic-free before this, but I am seeing way more blinking in conjunction with a couple other things. So with all this, maybe trying the enzymes again might help because I really can't get a handle on these restrictions with him, he begs me all the time.

 

Caryn, the increase in symptoms you are referring to is "just" in regards to "celiacs", correct? I know in the "enzymes for Autism and other neurological symptoms", by Karen DeFelice, she does explain how those with celiac were still not really able to reintroduce gluten, and the explanation was something to the effect of the small intestine registering the peptides as enemies, and the immune system kicks into gear and attempts to deal with it. So I just wanted to clarify that you are talking about those with intolerance to gluten as in "celiac", not eveyone, right?

 

Thanks

Faith

[Caryn]

Faith,

I assumed she meant celiac specifically, as her son is celiac. I will double check that. She said she gave enzymes without gluten, as a 'just in case' security measure for her son (much like I am experimenting with). We are not purposefully ordering foods with gluten when we eat out, mainly because we don't know if our son is only gluten intolerant or if he is undiagnosed celiac. I am assuming he is getting what celiac's consider 'cross contamination'-- minute amounts of gluten from cooking surfaces and utensils handling glutenous foods before his is handled, or undeclared amounts in seasonings or spices.

We can't forget that Tigger is also intolerant to corn and that corn ingestion could be part of the equation too.

He did wet the bed again, too after Sunday. FWIW.

Caryn

The upside is he had a great time and didn't get sick to his stomach afterwards or have bad diarrhea, so that is a success in itself for me, even if the result is 'less than perfect over the long haul as far as anxiety and bed wetting issues, etc.... I will keep an eye on it in time to see if there is a pattern.

I too think sugar has something to do with it for some reason, as does milk in our experience.

[Pamela Kay]

My son is not celiac to my knowledge. I have never had him tested though. He has never had diarrhea problems but can be gassy at times. The main problem with him is he gets very emotional which I suppose could be a sign too. He was allergy tested and he is allergic to corn however. The reason I started reducing his wheat is because he was muscle tested and wheat was found to be a problem. I have no scientific evidence he has a problem but once I did start to reduce his intake his bed wetting mostly stopped. That is why I am wondering about the enzymes because now his bed wetting has been going on for more than the three weeks as in Karen DeFelice's book. Last night he had pizza for dinner because I had a bunco party at my house and DH had to leave with the kids. He had enzymes before hand and I only saw him slightly tic this morning. His emotions were right on track. This is the second time since I started the enzymes that he has pizza and we all know that most pizza has corn and gluten in it. He has been fine emotionally both times.

 

So I guess my main concern right now is the bed wetting and his puffy eyes. I think if I can figure out why he has puffy eyes every morning I will solve a big part of the Keegan mystery!

 

As for my older son he has not been diagnosed with autism or celiac either. I do plan on getting them both tested however.