Big Bad Kitty
lolcat
Like Coookie, jumping in to add a welcome. And to steal one of her cookies.
New Here...some backstory
- Thread starter LauraK
- Start date
Marguerite
Active Member
PamelaJ, you wrote, "his defiance is almost more than I can tolerate and with all his treatments for eight years, I wish it was delivering better outcome. We've tried it all, honestly."
If you've tried it all, then you're doing everything you can. No sense in beating yourself up about it. But always keep an open mind in case some new possibility makes itself known.
LauraK, on the Asperger's front, they rarely display ALL the characteristics. difficult child 3 is diagnosed as fully on the autism spectrum, and yet he is very outgoing, has always actively sought the company of others and makes good eye contact. We often think of the Big Three signs of Pervasive Developmental Disorder (PDD) and get them a bit wrong - it's not social avoidance, it's closer to inappropriate social interaction. Add in disordered sensory input and literal way of thinking and interpreting their environment - it seems a possibility worth considering.
I'm still trying to find an appropriate label for easy child 2/difficult child 2 - the doctor says she's not Aspie because she makes good eye contact with him. But my daughter says she prefers to NOT make eye contact with people she doesn't know so well, and after 11 years, she knows the doctor quite well. I was talking to the Speech Language Pathologist (SLP) yesterday, I think she has her own ideas but won't tell me (very fussy about ethics, and we were just talking socially).
Also, on the elimination diet front - I wouldn't consider undertaking this without the supervision of a dietician experienced in working with this, and who also has an associated immunologist/allergist on the team. The elimination diet is not balanced, it is not healthy. You can't live on it without needing a lot of supplements, which bring their own set of problems.
We did the elimination diet through a specially set up allergy clinic. difficult child 3's weight was monitored, as well as the problem symptoms. We had to keep a diary of everything he ate as well as list any possible reactions. And we had to REALLY cut out a lot of food. Some people even call it the "food free diet". It is that bad. But if you suspect food sensitivity or allergy (they are different) then it may be worth trialling this.
It is not a long-term thing, but you need to be on the diet, strictly, for quite a few weeks to make sure any possible allergens/reactive agents have been eliminated from the body. And this includes eliminating a lot of naturally-occurring substances such as salicylates (found in most things with good flavour, such as herbs, spices, honey, most fruit & veg), amines (found in some fruits such as banana, pineapple, etc as well as a lot of meat - and chocolate), glutamates (also found naturally in a number of fruits, vegetables and spices) as well as eliminating artificial additives.
When you think of a healthy diet, you think of living on a farm, growing your own food, picking it and eating it fresh and raw on the spot. This is not possible on an elimination diet - no way. Just about every healthy food you could think of, would be off the permitted list. It really is that strict. And there is no sense even trialling it, if the child is likely to be non-compliant in the smallest amount. Any cheating loses you days to a week or more.
If you are testing for every possible allergen, including gluten, dairy and the chemicals I already mentioned, the diet is limited to lamb, chicken (skin removed), steamed white rice, one particular brand of pears (peeled-but not canned, must be fresh), one brand of lemonade (which is purely sugar and water), peeled potatoes and home-made honeycomb (again, sugar, water and bicarb soda to froth it up). Nothing else allowed. No herbs/spices, no flavouring, no butter or oil - nada. No coffee or tea, although a small amount of weak chamomile tea is permitted. Salt is OK, but as always, not too much.
It's nasty. You need to be monitored. The diet can backfire and trigger sensitivities that weren't there before. You probably need vitamin supplements, but these would need to be checked out by the dietician to make sure they comply with the diet.
And what happens next - when you've been on the diet long enough to be stable, no symptoms, you begin introducing ONE group at a time. let's say you're introducing dairy. You can add milk to your mashed potato. You might be able to have a small amount of ice cream, provided it has no artificial additives and only has a small amount of vanilla flavour. You can pour a little cream over your freshly peeled pear.
If there are no problems from adding the dairy, you could then add another group. The dietician would advise on which to add. But you add just one group at a time, or one item. For example, if you're putting salicylates back into the diet, you would begin with adding more fruit and vegetables which do not also contain amines or glutamates. You might be permitted some oregano for flavouring. If you're challenging artificial colours or preservatives, you can only add one specific chemical at a time.
This is tedious. You need to take time on each level, to make sure there isn't a delayed reaction. You must be stable before you test the next food. This can mean stepping back to a more strict diet again for another week or more.
Very few adults have the patience to do this, let alone kids. The only reason we got good compliance from difficult child 3 was, he is obsessive about following rules. He also is obsessive about reading, and he memorised the lists and scrutinised food labels. Even then, he made mistakes.
When we tested difficult child 1, we found that he reacted to orange juice (and oranges) and caffeine. Nothing else. And the elimination diet only helped a small amount. medications helped far more, and mostly over-rode any reaction from caffeine; completely masked any reaction from oranges. Now he's older, caffeine has less effect and he can drink cola again (in moderation).
Doing the elimination diet properly is nasty. I wouldn't push it too hard, frankly.
An alternative - try to cut out one particular group. For example, if you suspect dairy is a problem, it's fairly easy to eliminate it. However, be aware that dairy substitutes usually use soy, which is also a fairly common allergen.
Trying to eliminate gluten - VERY difficult. I have a friend recently diagnosed with coeliac disease; she can tolerate absolutely no gluten. The levels she can tolerate are often way below the levels notifiable on food labels. She has had to get expert advice from a dietician who is familiar with commercial products on the market, to advise her what to avoid. She is also discovering for herself, the hard way. Someone gave her a soft caramel, which she thought surely couldn't contain any gluten. It did. One caramel had her doubled up in agony for hours. She can't have soy sauce because wheat is used at some stage in the manufacture. This eliminates most restaurant meals.
So while I would support anyone wanting to try elimination diet, I strongly urge you to do it properly with qualified support and supervision. Otherwise you're probably not doing it properly and are wasting your time and torturing yourself with absolutely no possible gain.
difficult child 3 is already skinny, he lost a lot of weight on this diet. If we hadn't been doing this through a known allergy clinic, we would have been reported to the welfare authorities for starving our child.
Oh, and school lunches - another huge problem. So easy for your kid's diet to get sabotaged at school, quite innocently.
Marg
If you've tried it all, then you're doing everything you can. No sense in beating yourself up about it. But always keep an open mind in case some new possibility makes itself known.
LauraK, on the Asperger's front, they rarely display ALL the characteristics. difficult child 3 is diagnosed as fully on the autism spectrum, and yet he is very outgoing, has always actively sought the company of others and makes good eye contact. We often think of the Big Three signs of Pervasive Developmental Disorder (PDD) and get them a bit wrong - it's not social avoidance, it's closer to inappropriate social interaction. Add in disordered sensory input and literal way of thinking and interpreting their environment - it seems a possibility worth considering.
I'm still trying to find an appropriate label for easy child 2/difficult child 2 - the doctor says she's not Aspie because she makes good eye contact with him. But my daughter says she prefers to NOT make eye contact with people she doesn't know so well, and after 11 years, she knows the doctor quite well. I was talking to the Speech Language Pathologist (SLP) yesterday, I think she has her own ideas but won't tell me (very fussy about ethics, and we were just talking socially).
Also, on the elimination diet front - I wouldn't consider undertaking this without the supervision of a dietician experienced in working with this, and who also has an associated immunologist/allergist on the team. The elimination diet is not balanced, it is not healthy. You can't live on it without needing a lot of supplements, which bring their own set of problems.
We did the elimination diet through a specially set up allergy clinic. difficult child 3's weight was monitored, as well as the problem symptoms. We had to keep a diary of everything he ate as well as list any possible reactions. And we had to REALLY cut out a lot of food. Some people even call it the "food free diet". It is that bad. But if you suspect food sensitivity or allergy (they are different) then it may be worth trialling this.
It is not a long-term thing, but you need to be on the diet, strictly, for quite a few weeks to make sure any possible allergens/reactive agents have been eliminated from the body. And this includes eliminating a lot of naturally-occurring substances such as salicylates (found in most things with good flavour, such as herbs, spices, honey, most fruit & veg), amines (found in some fruits such as banana, pineapple, etc as well as a lot of meat - and chocolate), glutamates (also found naturally in a number of fruits, vegetables and spices) as well as eliminating artificial additives.
When you think of a healthy diet, you think of living on a farm, growing your own food, picking it and eating it fresh and raw on the spot. This is not possible on an elimination diet - no way. Just about every healthy food you could think of, would be off the permitted list. It really is that strict. And there is no sense even trialling it, if the child is likely to be non-compliant in the smallest amount. Any cheating loses you days to a week or more.
If you are testing for every possible allergen, including gluten, dairy and the chemicals I already mentioned, the diet is limited to lamb, chicken (skin removed), steamed white rice, one particular brand of pears (peeled-but not canned, must be fresh), one brand of lemonade (which is purely sugar and water), peeled potatoes and home-made honeycomb (again, sugar, water and bicarb soda to froth it up). Nothing else allowed. No herbs/spices, no flavouring, no butter or oil - nada. No coffee or tea, although a small amount of weak chamomile tea is permitted. Salt is OK, but as always, not too much.
It's nasty. You need to be monitored. The diet can backfire and trigger sensitivities that weren't there before. You probably need vitamin supplements, but these would need to be checked out by the dietician to make sure they comply with the diet.
And what happens next - when you've been on the diet long enough to be stable, no symptoms, you begin introducing ONE group at a time. let's say you're introducing dairy. You can add milk to your mashed potato. You might be able to have a small amount of ice cream, provided it has no artificial additives and only has a small amount of vanilla flavour. You can pour a little cream over your freshly peeled pear.
If there are no problems from adding the dairy, you could then add another group. The dietician would advise on which to add. But you add just one group at a time, or one item. For example, if you're putting salicylates back into the diet, you would begin with adding more fruit and vegetables which do not also contain amines or glutamates. You might be permitted some oregano for flavouring. If you're challenging artificial colours or preservatives, you can only add one specific chemical at a time.
This is tedious. You need to take time on each level, to make sure there isn't a delayed reaction. You must be stable before you test the next food. This can mean stepping back to a more strict diet again for another week or more.
Very few adults have the patience to do this, let alone kids. The only reason we got good compliance from difficult child 3 was, he is obsessive about following rules. He also is obsessive about reading, and he memorised the lists and scrutinised food labels. Even then, he made mistakes.
When we tested difficult child 1, we found that he reacted to orange juice (and oranges) and caffeine. Nothing else. And the elimination diet only helped a small amount. medications helped far more, and mostly over-rode any reaction from caffeine; completely masked any reaction from oranges. Now he's older, caffeine has less effect and he can drink cola again (in moderation).
Doing the elimination diet properly is nasty. I wouldn't push it too hard, frankly.
An alternative - try to cut out one particular group. For example, if you suspect dairy is a problem, it's fairly easy to eliminate it. However, be aware that dairy substitutes usually use soy, which is also a fairly common allergen.
Trying to eliminate gluten - VERY difficult. I have a friend recently diagnosed with coeliac disease; she can tolerate absolutely no gluten. The levels she can tolerate are often way below the levels notifiable on food labels. She has had to get expert advice from a dietician who is familiar with commercial products on the market, to advise her what to avoid. She is also discovering for herself, the hard way. Someone gave her a soft caramel, which she thought surely couldn't contain any gluten. It did. One caramel had her doubled up in agony for hours. She can't have soy sauce because wheat is used at some stage in the manufacture. This eliminates most restaurant meals.
So while I would support anyone wanting to try elimination diet, I strongly urge you to do it properly with qualified support and supervision. Otherwise you're probably not doing it properly and are wasting your time and torturing yourself with absolutely no possible gain.
difficult child 3 is already skinny, he lost a lot of weight on this diet. If we hadn't been doing this through a known allergy clinic, we would have been reported to the welfare authorities for starving our child.
Oh, and school lunches - another huge problem. So easy for your kid's diet to get sabotaged at school, quite innocently.
Marg
Marg,
Thanks so much for the detailed info!
I am thinking that, if I do any kind of elimination, it will be one thing at a time. I know there are hidden ingredients in everything and we do mostly eat whole foods, but I know it won't be easy to do!
Do you think it is more worthwhile to just have food allergy testing done?
Laura
Thanks so much for the detailed info!
I am thinking that, if I do any kind of elimination, it will be one thing at a time. I know there are hidden ingredients in everything and we do mostly eat whole foods, but I know it won't be easy to do!
Do you think it is more worthwhile to just have food allergy testing done?
Laura
If you think you can be strict about trying to eliminate foods, I would skip the testing.
I did do testing for gluten and milk at first. We tested positive so I was very strict about it and saw results. Without that testing, I didn't take it as seriously. The results were what convinced me that the test was valid.
There are many opinions by the experts that this kind of testing is invalid so you can easily dismiss the results if you want to. You can save money by just trying it on your own.
Since then, I have had one daughter tested for soy, eggs, and yeast. She was negative on all but she and I are convinced she is soy-intolerant. Her soy test was almost positive. Again, the diet results are what we are going by, not the test results.
I also recently had the big food allergy panel done. This did not even show her gluten problem because it is a different methodology. This came back with many food intolerances, mostly slight intolerances. I view this as a starting point for foods to eliminate and test, but not as the definitive answer.
So, while I've spent a lot of money on food allergy tests, I don't necessariy recommend it unless you think you need a place to start. The top 8 allergens are wheat, milk, soy, peanuts, tree nuts, fish, shellfish, and eggs. I would try gluten and not just wheat. Just MHO.
I did do testing for gluten and milk at first. We tested positive so I was very strict about it and saw results. Without that testing, I didn't take it as seriously. The results were what convinced me that the test was valid.
There are many opinions by the experts that this kind of testing is invalid so you can easily dismiss the results if you want to. You can save money by just trying it on your own.
Since then, I have had one daughter tested for soy, eggs, and yeast. She was negative on all but she and I are convinced she is soy-intolerant. Her soy test was almost positive. Again, the diet results are what we are going by, not the test results.
I also recently had the big food allergy panel done. This did not even show her gluten problem because it is a different methodology. This came back with many food intolerances, mostly slight intolerances. I view this as a starting point for foods to eliminate and test, but not as the definitive answer.
So, while I've spent a lot of money on food allergy tests, I don't necessariy recommend it unless you think you need a place to start. The top 8 allergens are wheat, milk, soy, peanuts, tree nuts, fish, shellfish, and eggs. I would try gluten and not just wheat. Just MHO.
