lovetobehome Posted June 27, 2010 Share Posted June 27, 2010 I know that sounds weird, but it is where we are...my daughter has a serious allergy to egg, and egg is in many, many foods that you would never think had egg. She has had this allergy since she was a baby, but in the last month, she has developed a fear of eating, serious anxiety, and paranoia that everything has egg in it. She is almost 8. Every meal is anxiety, tears, fear...refusal to eat. She has appointments this week with an allergist, pediatrician, and in 2 weeks an appointment at a feeding clinic. Her intake is about half what it should be for her age. She is very tiny anyway, so she doesn't have a lot to spare (under 40 pounds at 8 yrs). I guess I just wondered if anyone here has dealt with a serious food phobia issue like this, related to an allergy (as opposed to an image/diet sort of thing). I could sure use some tips and support if you have! THANKS! Quote Link to comment Share on other sites More sharing options...
Snickerdoodle Posted June 27, 2010 Share Posted June 27, 2010 Yes. I have a child like this. What helped a lot was just preparing all foods from scratch and eating all meals at home for a long while. It also helped just keeping the variety in his meals down. He eats a lot of the same things over and over but as long as I make them from scratch (and therefore in control of the overall nutritional content) I'm ok with that. I also made him read all labels from any not-from-scratch foods we used and tried to get him more involved in understanding the ingredients used to make certain dishes. :grouphug: Quote Link to comment Share on other sites More sharing options...
abbeyej Posted June 27, 2010 Share Posted June 27, 2010 I'm a broken record, and probably a paranoid one, but has she had strep (or any signs of illness) recently? When you take her to the ped *insist* that they run a strep test (I would insist on a culture if the rapid test comes back negative) on her. When ds was 6, he developed PANDAS from untreated strep (his symptoms were atypical, and while I knew something was "wrong", nobody thought to test him for strep 'til later, even though his sister had it about the time his symptoms began). One of his earliest symptoms was a paranoia about food (he thought everything was spoiled), and he lost 5lbs in about a month (more than 10% of his body weight -- he looked truly emaciated). Anyway, it's *probably* not the answer in your case. But it's such an easy thing to check. It was *shocking* how my son went from totally normal to completely OCD almost overnight from PANDAS... ... But after antibiotics, he began a rapid recovery. It took us about 3 months and some therapy to get "back to normal", but the big thing was just getting him antibiotics. Quote Link to comment Share on other sites More sharing options...
Hunter's Moon Posted June 27, 2010 Share Posted June 27, 2010 I had the same problem when I was younger, and still do but no where near as much. I have a severe allergy to Peanuts. I refused to eat anything unless I saw and helped make it. Now, I have to read the ingredients 5, 6, sometimes 7 times to make sure I didn't skim anything. I can't even eat anything that says "may contain traces of peanuts". I would say have her help you make things. Keep eggs completely separate from everything else in the fridge. Maybe double bag them and push them into one corner of the fridge. Maybe even if you have extra drawer space in the fridge and you could spare one whole drawer for eggs. Eventually, her fear will become less irrational and more rational and she will become cautious, not completely freaked. Quote Link to comment Share on other sites More sharing options...
lovetobehome Posted June 27, 2010 Author Share Posted June 27, 2010 Someone else mentioned PANDAS to me, too....so I will take that up with the ped. She hasn't had any illness that I know of. She has another odd thing, though, for the past year or so, she insists she has to pee about every 10 minutes. She'll pee, brush teeth, pee again, get in bed and then run back to pee again. I had her tested for UTI, negative. I think there is an anxiety issue going on here, manifesting in multiple ways. The women in my family have anxiety and depression issues. I seem to have escaped it, but I am thinking my daughter got my share and hers! Snickerdoodle, thank you so much for pm'ing me....this is helpful, I will keep trying to help her get comfortable with simple foods. Quote Link to comment Share on other sites More sharing options...
KidsHappen Posted June 27, 2010 Share Posted June 27, 2010 I'm a broken record, and probably a paranoid one, but has she had strep (or any signs of illness) recently? When you take her to the ped *insist* that they run a strep test (I would insist on a culture if the rapid test comes back negative) on her. When ds was 6, he developed PANDAS from untreated strep (his symptoms were atypical, and while I knew something was "wrong", nobody thought to test him for strep 'til later, even though his sister had it about the time his symptoms began). One of his earliest symptoms was a paranoia about food (he thought everything was spoiled), and he lost 5lbs in about a month (more than 10% of his body weight -- he looked truly emaciated). Anyway, it's *probably* not the answer in your case. But it's such an easy thing to check. It was *shocking* how my son went from totally normal to completely OCD almost overnight from PANDAS... ... But after antibiotics, he began a rapid recovery. It took us about 3 months and some therapy to get "back to normal", but the big thing was just getting him antibiotics. This was my thought as well. Don't worry about sounding like a broken record. If ever makes a difference in a single person's life then it will be worth it. Quote Link to comment Share on other sites More sharing options...
Hunter's Moon Posted June 27, 2010 Share Posted June 27, 2010 Someone else mentioned PANDAS to me, too....so I will take that up with the ped. She hasn't had any illness that I know of. She has another odd thing, though, for the past year or so, she insists she has to pee about every 10 minutes. She'll pee, brush teeth, pee again, get in bed and then run back to pee again. I had her tested for UTI, negative. I think there is an anxiety issue going on here, manifesting in multiple ways. The women in my family have anxiety and depression issues. I seem to have escaped it, but I am thinking my daughter got my share and hers! Snickerdoodle, thank you so much for pm'ing me....this is helpful, I will keep trying to help her get comfortable with simple foods. I guess I am like your daughter in more ways than one. I cannot go to bed if my bladder is even the tiniest bit filled. I try, but then I'll lay in bed for a long time and can't get comfortable because my bladder is sensitive (? I don't know how to explain it. Maybe I am more aware of my bladder??). If anxiety runs in your family maybe look into that, but maybe some people are just more sensitive when it comes to their bladders. Is that even possible though? Lol. Quote Link to comment Share on other sites More sharing options...
abbeyej Posted June 27, 2010 Share Posted June 27, 2010 ...she insists she has to pee about every 10 minutes. She'll pee, brush teeth, pee again, get in bed and then run back to pee again. I had her tested for UTI, negative. I think there is an anxiety issue going on here, manifesting in multiple ways.... The peeing thing is VERY common for PANDAS. But the time-spread between symptoms is not. Ds developed all of these symptoms (fear of eating, peeing all the time and thinking he hadn't finished or was in danger of leaking on his underwear, "confessing" non-offenses *constantly*, washing his hands 'til they were horribly chapped, etc) in a very short space of time. Still, it's absolutely worth discussing with your doctors. It may be more typical juvenile OCD (which waxes and wanes over time), but that's still certainly worth addressing... Quote Link to comment Share on other sites More sharing options...
elizabeth Posted June 27, 2010 Share Posted June 27, 2010 Empowerment is the answer. Get out a nice cookbook with tons of photos , have her go through and select the recipes she wants to try that are safe for her. Teach her all the names that egg may be OVO or ALBUMIN are egg. Her fear of the unknown is driving this neurotic reaction. I am using the word in a clinical way before any person here jumps on that bandwagon. Dd was like this over her anaphylactic allergy. Once she learned what typically would contain eggs it helped her to feel like with knowledge and good questions about ingredients and her checking labels herself, no more unreasonable fear only needed caution to avoid eating items with egg. The more she reads labels , recipes etc the more power she has to protect herself. Quote Link to comment Share on other sites More sharing options...
elizabeth Posted June 27, 2010 Share Posted June 27, 2010 While I am thinking of it when you hear hoofbeats look for a horse not a zebra. In other words, PANDAS not very common. She can die from eating egg her fear is reasonable it needs to be redirected toward dealing with her allergy head on. Quote Link to comment Share on other sites More sharing options...
Snickerdoodle Posted June 27, 2010 Share Posted June 27, 2010 Her fear of the unknown is driving this neurotic reaction. It's the fear of the unknown in the food coupled with the fear of knowing what can happen. Every time mine had an anaphylactic event the food phobia would come back in full force. Quote Link to comment Share on other sites More sharing options...
elizabeth Posted June 27, 2010 Share Posted June 27, 2010 It's the fear of the unknown in the food coupled with the fear of knowing what can happen. Every time mine had an anaphylactic event the food phobia would come back in full force. Absolutely . However that is avoidable by having a good allergist test thoroughly for every allergy that is known to cause the terrifying anaphylaxis reaction . I simply told dd that she was not able to eat peanuts, shellfish etc until we had tested for all potentially serious reactions. We found out that eggs , peanuts and shellfish were all foods she must avoid. If we cannot determine at a restaurant what is in a dish we go for grilled chicken and steamed veggies. It is so important that they learn what is likely to have the allergens by being very astute cooks. Quote Link to comment Share on other sites More sharing options...
lovetobehome Posted June 27, 2010 Author Share Posted June 27, 2010 Thanks, ladies, this helps! She know how to read labels, but she doesn't 'trust' them. Her last 2 reactions (one 16 months ago, one a month ago) were both to items that were supposedly safe. She had eaten this one bread from a local bakery a ZILLION times. No egg. But apparently, they goofed this one time, and put egg in. They denied it, but I know it had egg...it had egg white on top. And that was the ONLY thing she had eaten. This last time, it was a simple piece of fish from a seafood restaurant, a local place we had safely eaten at several times. I explained the allergy, keeping the fish separate, etc. Somehow, they goofed...she got violently ill after just 2 bites. 8 hours of vomiting, burning diarrhea, etc. I spent the night on the bathroom floor with her. So...the problem is, she now realizes that even 'safe' foods aren't always safe. Cross contamination can occur. And did occur. So who does she trust? How can she be sure? We decided to ban restaurants and eating out....we eat meals at church weekly, but from now on we take all our own food. When this phobia started, we were on our way out for a long trip to my brother's wedding. I took a cooler, but she was soooo afraid of everything, even what I brought. Now we are home, and I hope things will gradually improve. Quote Link to comment Share on other sites More sharing options...
helena Posted June 27, 2010 Share Posted June 27, 2010 Do you have any vegan restaurants in your area? Maybe when you take her out to eat, you can go to these restaurants instead. Still though.. never assume a vegan restaurant is serving all vegan foods, many will have a dish or two that aren't. At least then she could enjoy going out once in a while for a meal or baked goods. Here is a great site to track down veg/vegan restaurants and markets by cities. http://www.happycow.net/north_america/usa/ Also while you're working on a diagnosis, do you have any health food stores near you? It might feel good for her to see that there are whole markets geared towards people who have dietary restrictions. She's actually part of a big community of people who by necessity or choice have to read labels. There are a lot of foods that normally include egg which can be found egg free at these markets. Here is what we use to bake: http://www.ener-g.com/graphics/store/realproduct/rl_1414.jpg Here is what we make scrambled eggs out of: http://store.veganessentials.com/tofu-scrambler-seasoning-mix-by-fantastic-foods-p2272.aspx Sorry I can't help with your actual question. :grouphug: Quote Link to comment Share on other sites More sharing options...
abbeyej Posted June 27, 2010 Share Posted June 27, 2010 While I am thinking of it when you hear hoofbeats look for a horse not a zebra. In other words, PANDAS not very common. She can die from eating egg her fear is reasonable it needs to be redirected toward dealing with her allergy head on. Well, I certainly understand that. We've also had to deal with anaphylactic allergies around here, and it *is* a big deal. But any time someone tells me about a child *suddenly* developing an obsessive fear or compulsive behavior, I think it's absolutely worth doing a strep test. It's so easy to look into, and generally the treatment is easy (a few rounds of antibiotics) too. So much easier than dealing with long-term anxiety issues. And yes, kids with allergies do need to know how to be diligent about avoiding dangerous foods. Absolutely. But when that becomes an obsession interfering with a child's ability to function in the world, to eat and grow? Then focusing further on the *fear* is not at all helpful. Quote Link to comment Share on other sites More sharing options...
elizabeth Posted June 27, 2010 Share Posted June 27, 2010 Well, I certainly understand that. We've also had to deal with anaphylactic allergies around here, and it *is* a big deal. But any time someone tells me about a child *suddenly* developing an obsessive fear or compulsive behavior, I think it's absolutely worth doing a strep test. It's so easy to look into, and generally the treatment is easy (a few rounds of antibiotics) too. So much easier than dealing with long-term anxiety issues. And yes, kids with allergies do need to know how to be diligent about avoiding dangerous foods. Absolutely. But when that becomes an obsession interfering with a child's ability to function in the world, to eat and grow? Then focusing further on the *fear* is not at all helpful. Agree wholeheartedly. I did not mean to discount the severity of Pandas at all and am sorry if my post read that way. Long term anxiety issues are hell regardless of the source and anything that can be treated and dealt with is a blessing especially if it is primarily physical in nature. As a long term chronic pain sufferer I can attest to that. Quote Link to comment Share on other sites More sharing options...
Pippen Posted June 27, 2010 Share Posted June 27, 2010 Someone else mentioned PANDAS to me, too....so I will take that up with the ped. She hasn't had any illness that I know of. She has another odd thing, though, for the past year or so, she insists she has to pee about every 10 minutes. She'll pee, brush teeth, pee again, get in bed and then run back to pee again. I had her tested for UTI, negative. I think there is an anxiety issue going on here, manifesting in multiple ways. The women in my family have anxiety and depression issues. I seem to have escaped it, but I am thinking my daughter got my share and hers! Snickerdoodle, thank you so much for pm'ing me....this is helpful, I will keep trying to help her get comfortable with simple foods. If you haven't already, you should also look into Sensory Integration Disorder (also called Sensory Processing Disorder). Here's an introductory article. If this rings a bell at all, The Out of Sync Child by Carol Kranowitz would be a good book to check out. http://www.tsbvi.edu/Outreach/seehear/fall97/sensory.htm Backing down to a few "safe" foods may be needed to get over the hurdle, then adding more back in when she's emotionally ready. Quote Link to comment Share on other sites More sharing options...
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