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Help why do they think Im the cause?
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<blockquote data-quote="Marguerite" data-source="post: 240197" data-attributes="member: 1991"><p>With the food stuff - you're talking about the possibility that food sensitivity could be aggravating his condition (whatever it is). It is too complex to do it hit-and-miss because in general, the problem is due to one or more of the various naturally-occurring chemicals in food. For example, a lot of foods which are noted for strong flavours contain salicylates (related to aspirin). Herbs, Vegemite, honey and most fruit & vegetables.</p><p>Other natural chemicals include glutamates (also in Vegemite, I think; and in soy sauce); amines (in chocolate, bananas, tomatoes). There are more.</p><p></p><p>We dealt with RPAH in Sydney, the top bloke there is Rob Loblay. Not only good at this, but reputable and reliable. His work on this has been going on for decades, he's been published on this a fair bit. But in recent years a group connected to him have been working on food sensitivity in kids especially kids somewhere on the autism spectrum. We were told that about 30&#37; of these kids had problems that improved when certain foods were avoided. To test each child for which foods, the child has to go on an Elimination Diet, a very bland, very restricted diet that eliminates all suspect food groups. By the time we saw them, difficult child 3 had been on a milk-free, yeast-free diet for some weeks with no improvement. The symptom we were trying to sort out was nausea and vomiting (which later on was identified as due to acute severe anxiety). </p><p>So when we saw them, they said we could speed up the diet by no longer fussing about keeping his diet milk-free and yeast free. That made it easier.</p><p></p><p>But a full elimination diet - it's only potato (no skin), pears (no skin), lemonade made with sugar and water only, chicken with no skin (small quantity) and lamb (small quantity). difficult child 3 had to be on this for six weeks, I think it was. Not fun. And yes, he lost weight. It is not something to do without careful medical supervision. With the RPAH Allergy Clinic, they had some capsules for us to try (single-blinded) once difficult child 3 had been on the diet long enough for his symptoms to subside. But because he was back and forth to school during this process, we never got his symptoms under control so we never got to the capsule stage. What was supposed to happen - difficult child 3 taking the capsules carefully, one at a time with three days in between (or longer, if he had a reaction) was to help identify which group of foods was the problem. Once we got the group, we could then go in and identify which foods in that group were the problem. It seemed cumbersome, but it was a more reliable and actually faster method.</p><p></p><p>If you want to check it out, talk to your GP about it and get the doctor to look up RPAH Allergy Clinic and the doctors there. They may be able to help long-distance or maybe point you to someone more in your area who is connected to them. And because this was through a hospital clinic, it was bulk-billed.</p><p>End result for us - diet is not an issue for difficult child 3, as long as he avoids caffeine. A small amount in chocolate and decaf coffee is OK but cola is a no-no. And now we know this for sure.</p><p></p><p>One important thing about Rob Loblay and his team - in no way are they 'alternative'. In fact, a lot of the alternative medicine community hate his guts because he is a stickler for the rules being followed and really hates to see unscrupulous practitioners ripping off patients. I met him personally, discussed this and other issues with him a number of times. So possibly mentioning his name could make a GP at least a bit more receptive to considering this. </p><p>Otherwise, I'd leave it for now other than to test single foods as you have done. Another option for you to try on your own is to eliminate artificial food colourings and preservatives. Some preservatives are natural (ie salt, sugar). Or you could test milk, but don't take something out of the diet and substitute with a new something else, because if he's reacting to both (ie to dairy, and soy) then taking out one and substituting the other will give you a confused result.</p><p></p><p>If you're going to do this, take notes. We had to keep a diary for difficult child 3. It was mandatory - we'd have been dropped from the trial if we'd not complied.</p><p></p><p>As for the shrink - don't sweat too much. Nobody can put your son on medication if you don't want it. And while they're trying to find out what is wrong, they shouldn't medicate. There are other ways to help someone deal with anxiety - difficult child 3 had CBT (Cognitive Behaviour Therapy - it's all teaching him to think in a more positive, useful way) from a psychologist (covered by Medicare under a Health Care Plan). difficult child 3 has just started seeing a child psychiatrist who specialises in autism. I wish we'd seen this guy sooner, he's opening doors for us. He suggested a change in medication, but it's looking like it won't be possible because the first step was to switch difficult child 3 to Strattera, and that was a disaster for us. Three days, and we knew it was a mistake.</p><p></p><p>HOwever, with medications - we made the controversial decision to allow ADHD medications for difficult child 3 which he began at age 3. I doubt very much that this will be suggested for your son at this stage - his anxiety would be a concern. However, I wo't second-guess because you never know. Besides, I'm certain that if difficult child 3 was taken off his stimulants, his anxiety would get worse because his ability to cope would plummet.</p><p></p><p>I would suggest following up on leads suggested, and wait until you're faced with a decision before you let it worry you too much. In other words, cross that bridge when you come to it. You may never have to worry about it.</p><p></p><p>difficult child 1's first GOOD specialist was a child psychiatrist. He was a nut job himself, but he really understood difficult child 1 and was very helpful. We only moved on because he was getting a bit TOO wacko, plus we needed someone to see easy child 2/difficult child 2 and difficult child 3, and this bloke couldn't take on any more patients.</p><p></p><p>You sound like you've already done a lot of observation and testing yourself, which is all very useful. You need to become a scientist with it all, learn scientific principles and apply them. Have faith in yourself, in your ability to observe and to be a valid recorder of your children and their quirks. Never forget that as their mother, you are a vital link in the health care team for your children.</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 240197, member: 1991"] With the food stuff - you're talking about the possibility that food sensitivity could be aggravating his condition (whatever it is). It is too complex to do it hit-and-miss because in general, the problem is due to one or more of the various naturally-occurring chemicals in food. For example, a lot of foods which are noted for strong flavours contain salicylates (related to aspirin). Herbs, Vegemite, honey and most fruit & vegetables. Other natural chemicals include glutamates (also in Vegemite, I think; and in soy sauce); amines (in chocolate, bananas, tomatoes). There are more. We dealt with RPAH in Sydney, the top bloke there is Rob Loblay. Not only good at this, but reputable and reliable. His work on this has been going on for decades, he's been published on this a fair bit. But in recent years a group connected to him have been working on food sensitivity in kids especially kids somewhere on the autism spectrum. We were told that about 30% of these kids had problems that improved when certain foods were avoided. To test each child for which foods, the child has to go on an Elimination Diet, a very bland, very restricted diet that eliminates all suspect food groups. By the time we saw them, difficult child 3 had been on a milk-free, yeast-free diet for some weeks with no improvement. The symptom we were trying to sort out was nausea and vomiting (which later on was identified as due to acute severe anxiety). So when we saw them, they said we could speed up the diet by no longer fussing about keeping his diet milk-free and yeast free. That made it easier. But a full elimination diet - it's only potato (no skin), pears (no skin), lemonade made with sugar and water only, chicken with no skin (small quantity) and lamb (small quantity). difficult child 3 had to be on this for six weeks, I think it was. Not fun. And yes, he lost weight. It is not something to do without careful medical supervision. With the RPAH Allergy Clinic, they had some capsules for us to try (single-blinded) once difficult child 3 had been on the diet long enough for his symptoms to subside. But because he was back and forth to school during this process, we never got his symptoms under control so we never got to the capsule stage. What was supposed to happen - difficult child 3 taking the capsules carefully, one at a time with three days in between (or longer, if he had a reaction) was to help identify which group of foods was the problem. Once we got the group, we could then go in and identify which foods in that group were the problem. It seemed cumbersome, but it was a more reliable and actually faster method. If you want to check it out, talk to your GP about it and get the doctor to look up RPAH Allergy Clinic and the doctors there. They may be able to help long-distance or maybe point you to someone more in your area who is connected to them. And because this was through a hospital clinic, it was bulk-billed. End result for us - diet is not an issue for difficult child 3, as long as he avoids caffeine. A small amount in chocolate and decaf coffee is OK but cola is a no-no. And now we know this for sure. One important thing about Rob Loblay and his team - in no way are they 'alternative'. In fact, a lot of the alternative medicine community hate his guts because he is a stickler for the rules being followed and really hates to see unscrupulous practitioners ripping off patients. I met him personally, discussed this and other issues with him a number of times. So possibly mentioning his name could make a GP at least a bit more receptive to considering this. Otherwise, I'd leave it for now other than to test single foods as you have done. Another option for you to try on your own is to eliminate artificial food colourings and preservatives. Some preservatives are natural (ie salt, sugar). Or you could test milk, but don't take something out of the diet and substitute with a new something else, because if he's reacting to both (ie to dairy, and soy) then taking out one and substituting the other will give you a confused result. If you're going to do this, take notes. We had to keep a diary for difficult child 3. It was mandatory - we'd have been dropped from the trial if we'd not complied. As for the shrink - don't sweat too much. Nobody can put your son on medication if you don't want it. And while they're trying to find out what is wrong, they shouldn't medicate. There are other ways to help someone deal with anxiety - difficult child 3 had CBT (Cognitive Behaviour Therapy - it's all teaching him to think in a more positive, useful way) from a psychologist (covered by Medicare under a Health Care Plan). difficult child 3 has just started seeing a child psychiatrist who specialises in autism. I wish we'd seen this guy sooner, he's opening doors for us. He suggested a change in medication, but it's looking like it won't be possible because the first step was to switch difficult child 3 to Strattera, and that was a disaster for us. Three days, and we knew it was a mistake. HOwever, with medications - we made the controversial decision to allow ADHD medications for difficult child 3 which he began at age 3. I doubt very much that this will be suggested for your son at this stage - his anxiety would be a concern. However, I wo't second-guess because you never know. Besides, I'm certain that if difficult child 3 was taken off his stimulants, his anxiety would get worse because his ability to cope would plummet. I would suggest following up on leads suggested, and wait until you're faced with a decision before you let it worry you too much. In other words, cross that bridge when you come to it. You may never have to worry about it. difficult child 1's first GOOD specialist was a child psychiatrist. He was a nut job himself, but he really understood difficult child 1 and was very helpful. We only moved on because he was getting a bit TOO wacko, plus we needed someone to see easy child 2/difficult child 2 and difficult child 3, and this bloke couldn't take on any more patients. You sound like you've already done a lot of observation and testing yourself, which is all very useful. You need to become a scientist with it all, learn scientific principles and apply them. Have faith in yourself, in your ability to observe and to be a valid recorder of your children and their quirks. Never forget that as their mother, you are a vital link in the health care team for your children. Marg [/QUOTE]
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