Well I'm getting closer to a happier ending on this one. I found a local pharmacy (Medicine Shop in Beavercreek) that will compound the medication and I can pick it up. That alone should save me a bundle in shipping costs. My order had not been processed so I was able to cancel with the other compounding pharmacy.
So if you find yourself needing to find dye free prescription medication here are a few tips:
1. Ask your doctor ahead of time to prescribe a dye free medication. That step could save a lot of hassle right there. I thought I had that one covered, but it seems big pharmaceuticals change their additives.
2. If your regular pharmacy does not have a dye free option, you can search online for a compounding pharmacy in your area. You can also ask your doctor for suggestions on compounding pharmacies.
3. If you can't find a local compounding pharmacy, you can contact Lee Silsby Compounding pharmacy in Cleavland, OH.
4. Or you can decide to suffer whatever ill effects dyes have on your child and get the medication with red #40. If it was only a 10 day antibiotic on non-school days, I might have gone with this option. Then again, how much is it worth to have a sane, stable, well controlled child? I decided it was worth the extra 70 dollars to not have a crazy wild child for 30 days.
Thursday, May 28, 2009
Tuesday, May 26, 2009
quest for dye free meds
It should have been simple. My son's doctor wants him to switch to a different antifungal medication. A generic prescription should be either 4 or 10 dollars at my pharmacy. There's only one problem. Every dose of the medication has red# 40 in it, name brand as well as generic. The doctor had thought it was a white tablet when she prescribed it.
The suspension liquid is dye free, but it has lots of sugar, which my son is supposed to avoid in order to fight his intestinal yeast overgrowth. So two doses of sugary syrup every day doesn't seem like a good plan. The liquid also has sodium benzoate, which always seems to wire him too.
So, after a failed trip to the pharmacy, the one where I thought I'd be able to drop of the prescription for white pills and be on my way in 15 minutes, three calls to other pharmacies, I'm going to pay big again for a specially compounded medication. I found out that Medicine Shop compounds medication, but the pharmacist didn't call back so I went ahead and faxed the prescription to Lee Silsby again. At least I'll save about $25-30 by getting a 2 month supply all at once. That's only after I pay out 200 for what should have only cost 20. If this keeps up I may need to post ads on my blog.
Someday, there will be a better way. I just wish that "someday" was a little closer to now. This battle gets old. I need to start writing to politicians again.
The suspension liquid is dye free, but it has lots of sugar, which my son is supposed to avoid in order to fight his intestinal yeast overgrowth. So two doses of sugary syrup every day doesn't seem like a good plan. The liquid also has sodium benzoate, which always seems to wire him too.
So, after a failed trip to the pharmacy, the one where I thought I'd be able to drop of the prescription for white pills and be on my way in 15 minutes, three calls to other pharmacies, I'm going to pay big again for a specially compounded medication. I found out that Medicine Shop compounds medication, but the pharmacist didn't call back so I went ahead and faxed the prescription to Lee Silsby again. At least I'll save about $25-30 by getting a 2 month supply all at once. That's only after I pay out 200 for what should have only cost 20. If this keeps up I may need to post ads on my blog.
Someday, there will be a better way. I just wish that "someday" was a little closer to now. This battle gets old. I need to start writing to politicians again.
Saturday, May 23, 2009
update on allergies and other stuff
It's been a nice weekend so far. What a relief to have a a few days off from baseball, swim lessons, etc. We spent the entire day together as a family. Yard work, slip-n-slide, some quiet time, and a surprise party for our neighbor, made for an all around good day.
We passed on the cake at the birthday party. It had a beautiful golf course on it with red frosting piped around all the edges. I could see how the bits of red had streaked down through the cake when it rubbed off the knife. Simply scooping the frosting off would not have prevented 3 days of melt downs, so we came home and had some cake that I had at home. I've learned from too many mistakes in the past where minimal amounts of dye lasted on and on and on.
As for the allergy issue, I'll give a brief summary since I had a few questions about it. My son has always had problems with milk. We switched him to soy at age 2. He tested negative for allergies at that point. What we didn't realize is that the chronic ear infections and corresponding long term antibiotics left damage in his intestines in the form of a chronic yeast infection. We speculate this is why he is so much more sensitive to various foods than my other two children.
About a year ago I started searching for information online to figure out what was going on. The regular pediatrician sent us for another food allergy blood test in which everything came back negative. But he still had chronic rashes, bowel problems, memory problems, etc. Pediatrician suggested an elimination diet and referral to allergist. Allergists I contacted only did the same test as the one already done, or prick him a zillion times.
I decided to try an elimination diet and looked for more naturally focused MD to oversee his care. Last summer we took him off wheat, milk and soy waiting a week or two in between each food that we eliminated. I had seen a lot about "leaky gut" and intestinal permeability. Ithought that might be my son's problem. He was much better going into fall, but still reactive to some things, and getting milder rashes. We gradually stopped being vigilant about soy, but kept him off milk and wheat. We tried going back on wheat over Halloween and Christmas. Both times his academic work suffered, behavior got worse, rashes and bowel problems returned. What we missed was that the crackers, bread, and sweets that had wheat all had soy ingredients too.
I finally found a more homeopathic doctor who works with Great Plains Laboratory on biomedical testing. We did the full deal: stool, urine, hair sample, blood work, and organic acid tests as well as an Igg food allergy panel which tests for about 90 foods rather than a dozen on the standard Ige panel. We now have a more complete picture of what foods he can't have (milk, soy, watermelon). We are also treating him for yeast infection in the intestines which means no sugar or sugar-like products for a long time (months to years). Lots of basic foods are completely off the menu (ketchup, prepared spaghetti sauce, etc.) because of sugar.
Cooking without sugar, milk, wheat and soy has been rough, but we've mostly adjusted. I can use Xylitol and Stevia as sweeteners. I make tomato sauces from scratch. I also make my own popsicles and other treats. I use a lot of rice based products. I found one cookie sweetened with fruit juice at the health food store. We're starting some new supplements next week, so we'll see how it goes. We may be able to try adding wheat back in as some point. It is exhausting and stressful at times (as if avoiding just the food dyes isn't hard enough by itself!) but we are hoping to someday see the light in a healthier child.
Whenever I start to get bummed out about all the food hassles, I remind myself that I almost lost my son 2 years ago to a near drowning, and that the good fortune of still having him here to hug every day is worth any amount of food headaches that pop up. I guess it's all about gratitude. Focusing on what I do have is a whole lot better than thinking about what we can't eat.
We passed on the cake at the birthday party. It had a beautiful golf course on it with red frosting piped around all the edges. I could see how the bits of red had streaked down through the cake when it rubbed off the knife. Simply scooping the frosting off would not have prevented 3 days of melt downs, so we came home and had some cake that I had at home. I've learned from too many mistakes in the past where minimal amounts of dye lasted on and on and on.
As for the allergy issue, I'll give a brief summary since I had a few questions about it. My son has always had problems with milk. We switched him to soy at age 2. He tested negative for allergies at that point. What we didn't realize is that the chronic ear infections and corresponding long term antibiotics left damage in his intestines in the form of a chronic yeast infection. We speculate this is why he is so much more sensitive to various foods than my other two children.
About a year ago I started searching for information online to figure out what was going on. The regular pediatrician sent us for another food allergy blood test in which everything came back negative. But he still had chronic rashes, bowel problems, memory problems, etc. Pediatrician suggested an elimination diet and referral to allergist. Allergists I contacted only did the same test as the one already done, or prick him a zillion times.
I decided to try an elimination diet and looked for more naturally focused MD to oversee his care. Last summer we took him off wheat, milk and soy waiting a week or two in between each food that we eliminated. I had seen a lot about "leaky gut" and intestinal permeability. Ithought that might be my son's problem. He was much better going into fall, but still reactive to some things, and getting milder rashes. We gradually stopped being vigilant about soy, but kept him off milk and wheat. We tried going back on wheat over Halloween and Christmas. Both times his academic work suffered, behavior got worse, rashes and bowel problems returned. What we missed was that the crackers, bread, and sweets that had wheat all had soy ingredients too.
I finally found a more homeopathic doctor who works with Great Plains Laboratory on biomedical testing. We did the full deal: stool, urine, hair sample, blood work, and organic acid tests as well as an Igg food allergy panel which tests for about 90 foods rather than a dozen on the standard Ige panel. We now have a more complete picture of what foods he can't have (milk, soy, watermelon). We are also treating him for yeast infection in the intestines which means no sugar or sugar-like products for a long time (months to years). Lots of basic foods are completely off the menu (ketchup, prepared spaghetti sauce, etc.) because of sugar.
Cooking without sugar, milk, wheat and soy has been rough, but we've mostly adjusted. I can use Xylitol and Stevia as sweeteners. I make tomato sauces from scratch. I also make my own popsicles and other treats. I use a lot of rice based products. I found one cookie sweetened with fruit juice at the health food store. We're starting some new supplements next week, so we'll see how it goes. We may be able to try adding wheat back in as some point. It is exhausting and stressful at times (as if avoiding just the food dyes isn't hard enough by itself!) but we are hoping to someday see the light in a healthier child.
Whenever I start to get bummed out about all the food hassles, I remind myself that I almost lost my son 2 years ago to a near drowning, and that the good fortune of still having him here to hug every day is worth any amount of food headaches that pop up. I guess it's all about gratitude. Focusing on what I do have is a whole lot better than thinking about what we can't eat.
Wednesday, May 20, 2009
same old story
I'm wondering if the food dyes have slipped in for various reasons. Hmm, maybe it was the 5 times my 3 year old woke me up last night (a child who normally sleeps through the night every night) or the spitting, hitting, kicking and constant whining all day. All the classic signs are there, including a conversation about having chocolate cake at preschool. I'm temped to go back through old posts and check how many of the "3 year old high on dye" posts were the day after being at preschool. Praying for patience again!
Sometimes I wish I could go back to food just being food and not having to know every ingredient of everything we eat. I also finally have conclusive food allergy results back on my son. It appears that milk and soy are major problems, but not so much the wheat as we had expected. Unfortunately, watermelon and lemons are also moderate on the allergy scale, so there go a few more fun foods. So I'm in the process of re-evaluating everything on the menu. So besides my family taking up a second residence in the dug-out at the Little League field, I'm spending a lot of time just figuring out how to cook without any form of soy. I'll probably be back to posting more regularly when I come up for air in mid-June.
Sometimes I wish I could go back to food just being food and not having to know every ingredient of everything we eat. I also finally have conclusive food allergy results back on my son. It appears that milk and soy are major problems, but not so much the wheat as we had expected. Unfortunately, watermelon and lemons are also moderate on the allergy scale, so there go a few more fun foods. So I'm in the process of re-evaluating everything on the menu. So besides my family taking up a second residence in the dug-out at the Little League field, I'm spending a lot of time just figuring out how to cook without any form of soy. I'll probably be back to posting more regularly when I come up for air in mid-June.
Monday, May 11, 2009
Jelly Beans
I've been so busy, I haven't had time to rant and rave about this one. My son came home from school a week ago and sobbed on and off for a couple of hours. Several things were going on that he was upset about, but his reaction seemed unusually severe (very much like a food dye reaction). He swore he had not eaten anything. I'm finding it a little too coincidental that he has reacted twice to handling dyed foods at school (Easter eggs and now jelly beans). That was part of what he was crying about. The class did a jelly bean activity. He was supposed to sort, count and taste jelly beans and then write about it. I was not informed they were doing this, or I would have sent dye free jelly beans for him. Jelly Belly and Surf Sweet both make dye free jelly beans.
He was upset that he had to make up which flavor he liked and that he had to watch the other 2 boys on his team consume 144 jelly beans, since he couldn't have any. Now am I just a mean mom that I would not consider letting my child have 50-75 jelly beans in one sitting? And even if I did want my child to eat that way, should my school promote that as an academic task? I like teachers who make education fun and interactive. But isn't there a way to do it without sugar and food dyes? Now I think this is a good teacher, who does a nice job most of the time, but when I have sent my request in writing and made several reminders about my son needing to be "dye free" I just wish I didn't have to continually start over. It's always one step forward, two steps back.
He was upset that he had to make up which flavor he liked and that he had to watch the other 2 boys on his team consume 144 jelly beans, since he couldn't have any. Now am I just a mean mom that I would not consider letting my child have 50-75 jelly beans in one sitting? And even if I did want my child to eat that way, should my school promote that as an academic task? I like teachers who make education fun and interactive. But isn't there a way to do it without sugar and food dyes? Now I think this is a good teacher, who does a nice job most of the time, but when I have sent my request in writing and made several reminders about my son needing to be "dye free" I just wish I didn't have to continually start over. It's always one step forward, two steps back.
Friday, May 8, 2009
TGIF
I probably will not be posting as much during Little League season as my boys have games Mon-Thurs and again on Saturday. Since they alternate days and my husband is coaching 2 teams, we are really living on the go right now. I kind of wonder sometimes if it is worth all the insanity and portable dinners, but then Ben pitched 3 strike outs in a row in one inning and Alex got his first 3 hits all in one game and we can't help but celebrate.
The down sides of Little League: concession stand full of red candy, just about every kid on the team has a brightly color sport drink, and my kids sit back and watch all the other kids have their food coloring fiesta for 2 1/2 hours every night. I have stocked up on safe gum, candy, treats, and other drinks, but sometimes it gets to be a pain. At least I think we have finally seen the last of the effects of that dixie cup of Crystal Light the other night.
I'm not sure how I would survive if my son were that irritable, whiny, demanding and over-reactive on a regular basis. It makes me all the more thankful I've been able to see his REAL personality without the food dyes for the past 2 years. The contrast is so "Jekkyl and Hyde" it is hard to describe. Imagine watching your calm, loving, affectionate, smart, considerate, polite, responsible boy turn into a sobbing, cranky mess over little things like, "I can't find a ruler to do my math homework." So, here's hoping for a better dye free weekend.
Happy Mother's day to all the moms who follow.
The down sides of Little League: concession stand full of red candy, just about every kid on the team has a brightly color sport drink, and my kids sit back and watch all the other kids have their food coloring fiesta for 2 1/2 hours every night. I have stocked up on safe gum, candy, treats, and other drinks, but sometimes it gets to be a pain. At least I think we have finally seen the last of the effects of that dixie cup of Crystal Light the other night.
I'm not sure how I would survive if my son were that irritable, whiny, demanding and over-reactive on a regular basis. It makes me all the more thankful I've been able to see his REAL personality without the food dyes for the past 2 years. The contrast is so "Jekkyl and Hyde" it is hard to describe. Imagine watching your calm, loving, affectionate, smart, considerate, polite, responsible boy turn into a sobbing, cranky mess over little things like, "I can't find a ruler to do my math homework." So, here's hoping for a better dye free weekend.
Happy Mother's day to all the moms who follow.
Tuesday, May 5, 2009
Crystal Light at Little League
The coach's wife was thoughful to bring a big jug of Crystal Light for the kids to drink. My kid who usually knows better was thirsty. Need I say more? Morning hysterics to beat all morning hysterics. Sigh. At least they won.
Friday, May 1, 2009
What does "color added" mean?
I was asked this question by a reader who follows my blog and I thought it would be a good discussion topic. I found a link to the FDA requirements for added colors. My understanding of the topic is that food manufacturers have to list the numbered dyes (red#40, yellow #5, yellow #6, etc) What bothers me is that it sounds like we are trusting the honesty of the food companies to disclose the numbered dyes. I have called various food companies to ask what "color added" means. I often find that those answering the phones do not understand what I am asking, do not know how to pronounce the names of the ingredients I am asking about, and have generally not been helpful. I have been assured that it is not a numbered dye. I have often been told that the person on the phone cannot access further information about origins of the added color. Hmmmm. I guess my take is that if they can't tell me what the real ingredients are, I'm not feeding it to my family.
The Feingold folks also mention this as a concern. In their Feingold Program Details they and suggest avoiding anything listed as "color added" as well as artificially colored or other such terms. Further surch of the Feingold site brought up answers to this question from a 1987 newsletter. Doesn't anyone else wonder why they never tell you this at the pediatrician or when you start reading all the baby toddler books about what is best for you child?
After googling I found another link about color added to Alaskan salmon.
If you really want all the nitty gritty denials from the FDA on color additives you can check the link. But they also deny any risk of color additives exists. So don't read what's there if you aware of any of the recent research because you'll only end up more frustrated. They seem to think thousands of parents just don't know their kids and suggest that removing of additives or going on elimination diets should not be a standard approach for treating ADHD. Hmmm. Do you think anyone paid them off to say that?
The Feingold folks also mention this as a concern. In their Feingold Program Details they and suggest avoiding anything listed as "color added" as well as artificially colored or other such terms. Further surch of the Feingold site brought up answers to this question from a 1987 newsletter. Doesn't anyone else wonder why they never tell you this at the pediatrician or when you start reading all the baby toddler books about what is best for you child?
After googling I found another link about color added to Alaskan salmon.
If you really want all the nitty gritty denials from the FDA on color additives you can check the link. But they also deny any risk of color additives exists. So don't read what's there if you aware of any of the recent research because you'll only end up more frustrated. They seem to think thousands of parents just don't know their kids and suggest that removing of additives or going on elimination diets should not be a standard approach for treating ADHD. Hmmm. Do you think anyone paid them off to say that?
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