What a long strange trip it's been...
Mar 14, 2013 16:16:32 GMT
Post by FMmom on Mar 14, 2013 16:16:32 GMT
Hi everyone! It's been a couple of months since I last posted -- partially because I can't start any new threads from my ProBoard iPad app, but mostly because it's just been a tough few months...
The week before Christmas, we saw Kaelin's gastro doc and she hadn't gained an ounce, but did grow by a half inch so her dismal BMI was even worse. Dr W called Kaelin's pediatrician and they decided that Kaelin should come off both her ADHD medication and the FM diet. At. The. Same. Time. Shoot me.
It did not go well. Since it was the holidays, everywhere we went there were cookies and cakes and candy. Kaelin ate it all. Her stomach was killing her, so she had an awful nasty streak to her. She said hateful things, she got angry over nothing, she'd burst into tears if we ever tried to reprimand her and then say in the most hateful voice she could muster: "oh sure, now you hate me. Fine. I hate you." And don't even get me started on how active she was...
From reading about adults with FM, I know that behavioral issues from eating sugar will disappear at some point. But not by age 11. Wow. The ADHD and the sugar mix -- I wanted to run away from home. I was actively recruiting Kaelin to run away (just kidding!) My husband and other daughter were repeatedly asking just how long we needed to do this experiment. Until the doctors tell me to stop... Sis asked if SHE could write a note to the pediatrician: Dear Dr S, Can we please put Kaelin back on her medication and her diet? If we don't, I will kill her and my parents would like her to live. Signed, Sis
Once school started back up, Kaelin had even more difficulty. She talked incessantly; every time a kid got out of their seat, Kaelin popped up as well to pester the kid about what s/he was doing; she failed all of her tests; she could not complete any homework... Disaster. Just complete disaster.
Kaelin takes her allergy shots in the same building as Dr S, so we happened to run into her one afternoon. She watched Kaelin doing handstands in the middle of the waiting room, run from toy to toy and heard her talk at 140 decibels. Clearly things were different without the meds.
I told Dr S that I know food plays a huge part in Kaelin's activity level and her misbehavior, but we've strayed from the diet before without all of this. (Kaelin was tested for ADHD long before she was diagnosed with FM, so I think that the doctors and I always had a lingering suspicion that maybe she wasn't actually ADHD.) So either the meds mask a lot of the food issues or she's truly ADHD - or both. Dr S contacted all of Kaelin's teachers and had long talks with them; she talked to Kaelin's pharma-psychologist and then to Dr W. They agreed that Kaelin needed the medication to function and it's unfair to deny it to her any longer.
On the plus side, Kaelin did gain three pounds. She even gained an additional pound the week after starting back on medication. Despite being on meds, she was still hungry all the time. And her stomach still hurt a ton. I'd take her out for ice cream or cupcakes and she was so excited, but she just couldn't eat it. She'd take a few bites, stop, then try again -- but just couldn't ever finish any of it.
The other thing Dr W wanted was for us to meet with a social worker from the hospital at our next appointment. He totally believes that Kaelin has pain all the time, but he thinks that it may be due to her underlying anxiety. The social worker was going to help pull together resources to help Kaelin with that piece.
We had that appointment on Tuesday. Dr W met with us for over an hour and he talked to Kaelin about the pain and she couldn't say anything more than it hurts all the time. I told him that I truly understand what he's saying about the anxiety -- but only to a point. If anxiety is what's causing the pain, wouldn't her stomach pain be significantly better in the summer? Wouldn't it be noticeably worse on the days that she has to present her group project, or even the days leading up to that presentation? I never see any of that. Just everyday, the same consistent level of pain.
The day before the appointment, I asked Kaelin some questions about the pain because I know she won't speak up at the doctor's office despite her obvious crush on Dr W. I asked her what causes her pains? She named some different foods, then kind of concluded that food in general hurts. I asked if standing in front of the class for her book project makes her stomach hurt and her answer surprised me. She said "Oh yeah! That makes it hurt a LOT. Just not a food-hurt. I have school pain and food pain and need-to-poop pain and hungry pain." So she can distinguish one from another. Dr W was impressed by that.
However, with that new bit of information, he's thinking of going ahead with some testing. He may want to redo the Hydrogen Breath Test, maybe do another colonoscopy since it's been a few years since the last one... The other thing he's been considering is putting her in the hospital and removing all solid food and test different formulas to see if there is anything that doesn't hurt or make her crazy. And if he can find one, giving her a feeding tube. Ohmigod. I do not want to go down that path. He doesn't either, however, taking her off of the ADHD med has proved that she can gain weight, so pumping her full of formula overnight could do the trick. It backfired last time because we didn't know that she couldn't have inulin, so filling her up with it overnight increased her pain, thus decreasing her appetite. And since Kaelin didn't know that her stomach shouldn't feel that way, she never knew to mention that she had pain. It just felt "normal" to her.
Dr W talked to Kaelin's pharma-psychologist and she asked him to give Kaelin a little time to work with a therapist and take some anti-anxiety medication. She starts therapy tomorrow. We've seen a little improvement on a very low dose of the new medication -- Kaelin is walking through the halls of school by herself instead of always getting someone to accompany her. That's actually a HUGE step. But the doctor wants to increase the dose a bit to see if we get better results. One side effect is increased appetite, but we haven't seen that yet. Sigh.
Dr W is supposed to call next week to discuss how we proceed. I'm fine with the new medication (although I HATE the idea of meds!!!!) and therapy -- but I just don't think it's the answer. Yesterday I made sesame beef over rice. Kaelin again mentioned how much her stomach hurt and she can't eat it. She blamed the white rice because she knows that meat doesn't hurt. I asked her to finish the beef then and she ate another piece or two, then said her stomach just hurts too much. You know, it's not the white rice at all -- the sauce is soy sauce, sugar, mirin and a little cornstarch. It's the beef that is causing pain. Kaelin doesn't know the ingredients in the recipe, so she's not complaining because she psychosomatically feels something. Oh, I'm eating sugar, I should feel pain -- ouch, there it is... I serve this same beef in various recipes that don't use sugar and she always eats it without difficulty. Her stomach knows the difference.
I don't want to do another endoscopy and I certainly don't want to a feeding tube -- but I think I'm going to ask for one more test. The one thing that I give her all day long, without fail, is dairy. I add cream to her eggs and I cook everything in butter. I agreed to get her some cereal -- Rice Chex (4 grams of sugar per serving) and whenever she eats it, she burps like you wouldn't believe. Yesterday I just put some in a bag for a snack and she ate the whole thing without any burping or gas whatsoever. When we got home, she had cereal and milk and was burping up a storm again. I've been saying for two years that I think milk is a problem, but since so many things contain milk products, it's so hard to isolate it from sugar or soy or flour or any number of things we KNOW she shouldn't eat.
The other thing I mentioned to Dr W was that Kaelin hasn't been on a strict FM diet since the first month after diagnosis. I was extremely strict in the first six weeks -- it took a little while to figure out that several things on the "okay" list were not okay for her, but basically we were very thorough for a good six weeks. She gained four pounds. And after three or four weeks of this, she came down on morning and said "my stomach doesn't hurt. At all. There's no pain!"
Then our heater threw soot all over the house and we had to live in a hotel for four weeks and there was no way to feed her appropriately. She lost two pounds and I panicked about her weight. We never went back to that strict of a diet -- I greatly increased the amount of cream and butter I served her, adding it to everything. I allowed her to have some white flour because it was easier to give her snacks when we'd go somewhere. Now, there are times that I've gone back to a strict diet, but she still had pain so I decided that as long as the pain was there no matter what, I might as well increase the calories. And white flour and some sugar crept back in. But what if milk and butter has been the culprit all along? What if the reason that the strict diet didn't work is because of lactose? I really need to know the answer to that...
So that's been my winter season... Factor in some rather difficult situations with my eldest daughter and my husband's constant travel (he just left for another month, then he'll be in and out, mostly out, for the following month) this has not been a fun time. Sigh. That's where we stand: too thin, too much pain, too anxious and no answers. Ugh.
The week before Christmas, we saw Kaelin's gastro doc and she hadn't gained an ounce, but did grow by a half inch so her dismal BMI was even worse. Dr W called Kaelin's pediatrician and they decided that Kaelin should come off both her ADHD medication and the FM diet. At. The. Same. Time. Shoot me.
It did not go well. Since it was the holidays, everywhere we went there were cookies and cakes and candy. Kaelin ate it all. Her stomach was killing her, so she had an awful nasty streak to her. She said hateful things, she got angry over nothing, she'd burst into tears if we ever tried to reprimand her and then say in the most hateful voice she could muster: "oh sure, now you hate me. Fine. I hate you." And don't even get me started on how active she was...
From reading about adults with FM, I know that behavioral issues from eating sugar will disappear at some point. But not by age 11. Wow. The ADHD and the sugar mix -- I wanted to run away from home. I was actively recruiting Kaelin to run away (just kidding!) My husband and other daughter were repeatedly asking just how long we needed to do this experiment. Until the doctors tell me to stop... Sis asked if SHE could write a note to the pediatrician: Dear Dr S, Can we please put Kaelin back on her medication and her diet? If we don't, I will kill her and my parents would like her to live. Signed, Sis
Once school started back up, Kaelin had even more difficulty. She talked incessantly; every time a kid got out of their seat, Kaelin popped up as well to pester the kid about what s/he was doing; she failed all of her tests; she could not complete any homework... Disaster. Just complete disaster.
Kaelin takes her allergy shots in the same building as Dr S, so we happened to run into her one afternoon. She watched Kaelin doing handstands in the middle of the waiting room, run from toy to toy and heard her talk at 140 decibels. Clearly things were different without the meds.
I told Dr S that I know food plays a huge part in Kaelin's activity level and her misbehavior, but we've strayed from the diet before without all of this. (Kaelin was tested for ADHD long before she was diagnosed with FM, so I think that the doctors and I always had a lingering suspicion that maybe she wasn't actually ADHD.) So either the meds mask a lot of the food issues or she's truly ADHD - or both. Dr S contacted all of Kaelin's teachers and had long talks with them; she talked to Kaelin's pharma-psychologist and then to Dr W. They agreed that Kaelin needed the medication to function and it's unfair to deny it to her any longer.
On the plus side, Kaelin did gain three pounds. She even gained an additional pound the week after starting back on medication. Despite being on meds, she was still hungry all the time. And her stomach still hurt a ton. I'd take her out for ice cream or cupcakes and she was so excited, but she just couldn't eat it. She'd take a few bites, stop, then try again -- but just couldn't ever finish any of it.
The other thing Dr W wanted was for us to meet with a social worker from the hospital at our next appointment. He totally believes that Kaelin has pain all the time, but he thinks that it may be due to her underlying anxiety. The social worker was going to help pull together resources to help Kaelin with that piece.
We had that appointment on Tuesday. Dr W met with us for over an hour and he talked to Kaelin about the pain and she couldn't say anything more than it hurts all the time. I told him that I truly understand what he's saying about the anxiety -- but only to a point. If anxiety is what's causing the pain, wouldn't her stomach pain be significantly better in the summer? Wouldn't it be noticeably worse on the days that she has to present her group project, or even the days leading up to that presentation? I never see any of that. Just everyday, the same consistent level of pain.
The day before the appointment, I asked Kaelin some questions about the pain because I know she won't speak up at the doctor's office despite her obvious crush on Dr W. I asked her what causes her pains? She named some different foods, then kind of concluded that food in general hurts. I asked if standing in front of the class for her book project makes her stomach hurt and her answer surprised me. She said "Oh yeah! That makes it hurt a LOT. Just not a food-hurt. I have school pain and food pain and need-to-poop pain and hungry pain." So she can distinguish one from another. Dr W was impressed by that.
However, with that new bit of information, he's thinking of going ahead with some testing. He may want to redo the Hydrogen Breath Test, maybe do another colonoscopy since it's been a few years since the last one... The other thing he's been considering is putting her in the hospital and removing all solid food and test different formulas to see if there is anything that doesn't hurt or make her crazy. And if he can find one, giving her a feeding tube. Ohmigod. I do not want to go down that path. He doesn't either, however, taking her off of the ADHD med has proved that she can gain weight, so pumping her full of formula overnight could do the trick. It backfired last time because we didn't know that she couldn't have inulin, so filling her up with it overnight increased her pain, thus decreasing her appetite. And since Kaelin didn't know that her stomach shouldn't feel that way, she never knew to mention that she had pain. It just felt "normal" to her.
Dr W talked to Kaelin's pharma-psychologist and she asked him to give Kaelin a little time to work with a therapist and take some anti-anxiety medication. She starts therapy tomorrow. We've seen a little improvement on a very low dose of the new medication -- Kaelin is walking through the halls of school by herself instead of always getting someone to accompany her. That's actually a HUGE step. But the doctor wants to increase the dose a bit to see if we get better results. One side effect is increased appetite, but we haven't seen that yet. Sigh.
Dr W is supposed to call next week to discuss how we proceed. I'm fine with the new medication (although I HATE the idea of meds!!!!) and therapy -- but I just don't think it's the answer. Yesterday I made sesame beef over rice. Kaelin again mentioned how much her stomach hurt and she can't eat it. She blamed the white rice because she knows that meat doesn't hurt. I asked her to finish the beef then and she ate another piece or two, then said her stomach just hurts too much. You know, it's not the white rice at all -- the sauce is soy sauce, sugar, mirin and a little cornstarch. It's the beef that is causing pain. Kaelin doesn't know the ingredients in the recipe, so she's not complaining because she psychosomatically feels something. Oh, I'm eating sugar, I should feel pain -- ouch, there it is... I serve this same beef in various recipes that don't use sugar and she always eats it without difficulty. Her stomach knows the difference.
I don't want to do another endoscopy and I certainly don't want to a feeding tube -- but I think I'm going to ask for one more test. The one thing that I give her all day long, without fail, is dairy. I add cream to her eggs and I cook everything in butter. I agreed to get her some cereal -- Rice Chex (4 grams of sugar per serving) and whenever she eats it, she burps like you wouldn't believe. Yesterday I just put some in a bag for a snack and she ate the whole thing without any burping or gas whatsoever. When we got home, she had cereal and milk and was burping up a storm again. I've been saying for two years that I think milk is a problem, but since so many things contain milk products, it's so hard to isolate it from sugar or soy or flour or any number of things we KNOW she shouldn't eat.
The other thing I mentioned to Dr W was that Kaelin hasn't been on a strict FM diet since the first month after diagnosis. I was extremely strict in the first six weeks -- it took a little while to figure out that several things on the "okay" list were not okay for her, but basically we were very thorough for a good six weeks. She gained four pounds. And after three or four weeks of this, she came down on morning and said "my stomach doesn't hurt. At all. There's no pain!"
Then our heater threw soot all over the house and we had to live in a hotel for four weeks and there was no way to feed her appropriately. She lost two pounds and I panicked about her weight. We never went back to that strict of a diet -- I greatly increased the amount of cream and butter I served her, adding it to everything. I allowed her to have some white flour because it was easier to give her snacks when we'd go somewhere. Now, there are times that I've gone back to a strict diet, but she still had pain so I decided that as long as the pain was there no matter what, I might as well increase the calories. And white flour and some sugar crept back in. But what if milk and butter has been the culprit all along? What if the reason that the strict diet didn't work is because of lactose? I really need to know the answer to that...
So that's been my winter season... Factor in some rather difficult situations with my eldest daughter and my husband's constant travel (he just left for another month, then he'll be in and out, mostly out, for the following month) this has not been a fun time. Sigh. That's where we stand: too thin, too much pain, too anxious and no answers. Ugh.
