Tuesday, December 30, 2008

Rebecca Again

I thought I’d just do a follow up on Rebecca. After I last wrote we had our follow-up visit with the hollistic allergist. I explained that she was not any better, if anything she is worse, even though we had adjusted her diet to what he had told us last time. I must admit he lifted himself a bit in my books by his answer. Since she is not any better it is his opinion that her problems are not food related. Since part of his treatment is iridology he spent some time reviewing what he sees by looking in her eyes.

Iridologists look at a persons eyes and from what they see they believe they an tell you more about the condition of a persons body. They use a iris chart to determine what the eye is telling them. Although the majority of my research says that iridology is not very reliable or accurate, I suppose it doesn't hurt to listen and see what they have to say (especially if it's covered in the cost anyways) ... who knows it could give leads to a correct idea.

While we were there he showed me her eye and what he believes her eyes are saying. I had a chance to look also and compare her eye to the charts he had. I wrote down the name of the conditions her eye says she has in order to further look it up ... but for the life of me I can't find the info back ... grrrr. According to what he saw in her eye he claims that her problems are anxiety related. He says that her colon is as tight and tense as can be and it shows it is this way due to stress or anxiety. So ... he could be right, he could be guessing ... just like we are right now ... guess we'll have to wait and see what time tells us.

We also found out a few weeks ago that Rebecca has a parasite. I do not know the name of the parasite, I will have to ask next time I’m in. Our pediatrician said that it’s not a serious parasite and often they would not bother treating it if there were no symptoms, but since Rebecca has symptoms of something it is worth treating.

Treating this has snowballed a few other issues. Since Rebecca has Fructose Malabsorption we have the check her medications first to see if they are FM friendly. The doctor ended up putting her on a pill form because of the ingredients of the liquid form. So three times a day we had to crush this pill and give it to Rebecca. Well to say that this stuff tastes disgusting would be putting it extremely mild. We tried several different ways of feeding it to her before we settled on the theory “a spoonful of sugar helps the medicine go down”. Of course with her we shouldn’t be using excessive sugar so it’s really a mixture of stevia, aspartame and a bit of sugar. Although this was working it was causing some severe anxiety. It didn’t take us long to realize that she was not doing well. She would not eat much, she always had stomach pain, she dreaded taking her medication, although she did so very faithfully and would remind us if we forgot.

Since Rebecca had to take the medication three times a day we taught her how to take it herself so that she could bring it with to school. Come Monday morning though it became obvious this wasn’t going to work and once again we are very thankful for living so close to the school. I promised her we would come and help her at lunch time. She was only at school about an hour when we got a call to pick her up as she wasn’t doing so well. Upon coming home she was fine though and so we were sure that she was so anxious about taking the medication. I called to have it switched to a liquid form … I much rather give her some extra fructose then deal with such an uptight basketcase. Changing the medication brought on a totally new child again. She began eating again, was happy, and no more tummy aches. Another sign to us that we are dealing with an anxiety/stress/emotional problem.

With the holidays and all the good eating we decided to give Rebecca a holiday from her strict diet as we still are leaning towards the fact that her Fructose Malabsorption is not a very severe version. We have enjoyed two weeks of a pretty easy going kid with only a couple short-term tummy issues. We have kept her off the major fructose problem foods and try to not go to extreme on the sugar intake (okay, a few except there as well) and we’re all enjoying the less restrictive diet. There past two weeks have confirmed our belief that FM is not really Rebecca's problem. If it were the problem she would have been severally ill from all that she has intaken during the past weeks.

So now we do the waiting game again. We have tried to minimize all attention regarding her tummy with hopes we will hear less if she is not gaining extra affection. This has not been successful, but at least we have the comfort that we know she is not just complaining for special attention or privileges. (This does not mean we do not give her any sympathy or love, but it does mean she does not get to stay up late, sleep in the lazy boy, watch video, etc). We have seen improvement since the parasite medication so time will tell whether this was playing a factor or whether she’s just going through a less emotional/anxious time. There is also the fact that we are during holiday season now, so she is not in school and we do not know how much school stresses her. She does not appear stressed and loves school, so we've never thought it any issue, but she may not realize herself that she gets over anxious or stressed ... still playing guessing games here. Given the success of the past week with her diet change it supports our theory that FM is not her major problem as she should have had immediate bad effects if it truly were.

Although it hasn’t been fun we have thanked Rebecca several times for being diagnosed with FM (as well as being so good at following her diet and trying each new change that's come up) … if Rebecca had not been we would never have figured out what was bothering Matthew!!

Rebecca wanted to make lunch the other day. We had a snacky lunch of Triscuits with toppings. She was quite proud that she could do it almost all by herself and requested I take pictures of her ... I'm assuming with the intent she wanted it to go on the blog just like Marietta.

So here she is prepping the triscuits ... and with the finished product.

Salsa Triscuits -top triscuits with salsa and cheddar cheese

Pizza Triscuits -top triscuits with pizza sauce, piece of pepperoni, mozzerella cheese and a sprinkle of basil

Microwave or place in oven until cheese has melted. Enjoy!!


amymom24 said...

Our niece (age 9) is dealing with the same sort of symptoms as Rebecca right now, and she is Kathleen's sister (our brother-in-law's daughter who passed away from a degenerative brain disease). We also think it is anxiety related, but she is undergoing all kinds of tests at Sick Kids for it, as it has been going on since April. In Kevin's schooling, he has learned that stress/anxiety sometimes waits to manifest itself until months after the stress has left their life.

So, you may be on to something with Rebecca here... that she is still dealing with everything that happened with James, as well as losing him. Is is so mysterious/amazing how our bodies work, isn't it?

Alison said...

I came across Rebecca's story when researching fructose/fructans. I'm curious as to why Rebecca can each Triscuits when the main ingredient is whole wheat. Can you explain?


Alison said...

Just wanted to pass along this article on FM that I found useful with regard to fructose, fructans, and raffinose:

Steph said...

Hi Alison

Thank you for the article you passed along, I am familiar with it.

I agree, triscuits would not be a good idea for someone who has FM. Normally Rebecca does not eat these. As well she normally does not have tomatoes or onions, so the sauces on both these are not FM friendly either.

The reason Rebecca is eating these is because this picture was taken during the Christmas holidays, and during the holidays we gave her a "holiday" from her FM diet in order to see how she would do. As I mentioned in that post she did relatively well and was not any worse off by eating fructose. This giving us the impression that she is not severely fructose intolerant and that something else is bothering her.

On her normal diet Rebecca only eats white bread. Normally this is homemade so that I can minimize the sugar that goes into it, as well I often subsitute some rye flour. If it's store bought white bread then she has to have a specific brand as most have fructose added. We rotate this with rice cakes so that she doesn't have too much wheat in a day, aiming to have no more then one wheat serving per day.

There is much controversey on the fructan issue. Some doctors believe that it is almost like there are two versions of FM, those who can tolerate fructans and those who cannot. In Rebecca's case she has gone on a wheat free diet and been no better while on it, so we allow her wheat in moderation. I think the key is to remember that FM is an intolerance. It is not an allergy meaning one has to eliminate all of the substance, but it means the body cannot process or tolerate a specific food ... for some the intolerance is stronger then others, for some the intolerance is very mild. When it comes to fructans wheat is the only fructan that we allow Rebecca as it just makes life simplier (there is no point in making life more difficult if it's not helping in any way). She does not eat onions, beans, asparagus, etc.

So for anyone who has FM I would not recommend Triscuits or whole wheat grains unless they are stabalized and know there tolerance level well.

Hope this explains :)

Brood Herder said...

Hi, if you're still checking this blog, I was curious, if you have the name of your Holistic Allergist, I'm in ON, and I'm at the end of my rope with my Twins FructMal, and it's taking us FOREVER to get in with the GI clinic


Steph said...

Brood Herder

I can give you the name of the place that we visited but I will be honest that I do not recommend it and if you read on the internet you will find a lot of information that does not support BIE. (e.g. http://www.skepticnorth.com/2012/09/a-tale-of-alphaghetti-credentials-“registered-holistic-allergists”-and-“bioenergetic-intolerance-elimination”/ ) and even show that the place we went to is behind some of the issues here.

We went to a place in Oakville called Natural Health Technologies you can find them at www.inht.ca. I did not believe what they told me then and since then we have visited another place in Hamilton that does BIE with our daughter Marietta. We thought that maybe we had overlooked something with Rebecca's treatment at the time since she is our child that reacts the least to fructose compared to the rest of us that have FM. Maybe it did actually do something? We were at the end of our rope with Marietta and decided to give it another try after someone said it worked for them.

Our 2nd try made us just as skeptic ... actually now I'm not skeptic I simply don't believe it works. Yet I can't explain why it does for some so I won't go there. Any questions you ask these people they cannot really answer or they give some illogical answer that is full of medical holes.

The place we went to in Hamilton you can find info at http://www.talktovicky.com/sensitivities. Super nice lady but really was not able to answer any of the questions we had and things did not add up.

I think we all go through a stage where we want to believe there is cure and we're willing to put our money into it. But realistically we have a diagnosed issue that doesn't have a cure at this time and we have to learn to live with it.

I sympathize with you waiting to see the GI but at the same time I suggest you do not put much hope in the GI being of any assistance. Have you already received a diagnosis of FM? Or are you hoping the GI doc can order the test for this? In our experience with the GI doc we didn't get anywhere and I ended up educating the dietician. Now that was some years ago and I hope that they have developed further in their information in the last 5 years, but the reoccurring theme from all those who see a GI doc is that unless the doc specializes in FM (and until know I don't think there is one in Ontario that does) they really only make things more confusing.

You are best off doing your own research and connecting with the support group. https://groups.yahoo.com/neo/groups/fructose_malabsorption/info. There are also some support groups on Facebook if you are no there

Hope some of this information is helpful and that you are able to find some relieve for your twins