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PostPosted: Wed Jul 13, 2005 4:18 pm 
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Joined: Wed Jul 13, 2005 2:36 pm
Posts: 3
Location: Napa,California
Has any any one out there heard of or experienced a loved one being soo allergic to soo many foods? My now 20 month old lives on six foods we have found to be "safe". Any support is well appreciated.

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My 20 month old was diagnosed with over 70 food allergies before 6 months of age. He is currently living on 6 foods: corn, rice, sweet potatoe, chicken, bananas, & apples. Now he can eat green beans and turkey!


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PostPosted: Wed Jul 13, 2005 9:29 pm 
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Joined: Tue Apr 12, 2005 9:50 am
Posts: 205
Location: Canada
Welcome
I do not know if I will be able to help you, my children are grown ups and they never got as many allergies as I have. I have lots of food, drug and enviromental allergies.
Any moral support or possibly diet suggestions I can give just ask...
Kelly


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PostPosted: Wed Jul 13, 2005 9:32 pm 
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Joined: Tue Apr 12, 2005 9:50 am
Posts: 205
Location: Canada
ooops I hit the wrong key :oops: sorry about that.
Kelly


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PostPosted: Thu Jul 14, 2005 7:04 pm 
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Joined: Tue Mar 22, 2005 6:53 pm
Posts: 1454
Location: Canada
Christopher,

When I was young my mother had the same problem with feeding me. There were only a few foods that I reacted to severely (eggs, soya---she never fed me nuts or peanuts because that allergy is in the family, but that one is severe as well) but when she fed me most other foods I would start scratching my ears. Plus I fussed at night when my mother started to introduce foods. For a time, she put me back on just breast milk and I slept through the night. She really didn't know what to do---she didn't have any medical advice on the subject and so she just ended up feeding me small quantities of foods which she thought I was mildly allergic to because she was concerned about my nutrition. I still have tons of allergies and never outgrew the severe ones. I doubt any of that helped any, but if you have any questions feel free to ask.


Last edited by Helen on Sun Feb 24, 2008 1:02 am, edited 1 time in total.

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PostPosted: Thu Jul 14, 2005 8:07 pm 
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Joined: Wed Jul 13, 2005 2:36 pm
Posts: 3
Location: Napa,California
HI LIsa, thank you for sharing this info. with me, how did you manage? Just day to day activities / living. And how did you grow up, like were your friends understanding - how about your class mates. My frustration is that if he spends more than 40 minutes with another individual playing or talking near them he looks like a rashy burn victem, and then we for sure don't get adequate sleep or rest that night. It's like because of what may be on the other person makes Christopher, my son break out and get itchy. When I ask the parents or person the "standard Christopher-safe questions" Do you have a pet, have you eaten the following foods, or did you wash your hands. They immediatly shut done and will take their children away or they just leave. I have just added "it's not contagious" to my spiel. My poor husband get's soo embarassed he saids that I give out too much info and that other people don't care. However I feel that the more they know, the better I can protect Christopher. Urgh...thank you for listnening. I look forward to hearing from you.-Leti.




Lisa wrote:
Christopher,

When I was young my mother had the same problem with feeding me. There were only a few foods that I reacted to severely (eggs, soya---she never fed me nuts or peanuts because that allergy is in the family, but that one is severe as well) but when she fed me most other foods I would start scratching my ears. Plus I fussed at night when my mother started to introduce foods. For a time, she put me back on just breast milk and I slept through the night. She really didn't know what to do---she didn't have any medical advice on the subject and so she just ended up feeding me small quantities of foods which she thought I was mildly allergic to because she was concerned about my nutrition. I still have tons of allergies and never outgrew the severe ones. I doubt any of that helped any, but if you have any questions feel free to ask. Lisa

_________________
My 20 month old was diagnosed with over 70 food allergies before 6 months of age. He is currently living on 6 foods: corn, rice, sweet potatoe, chicken, bananas, & apples. Now he can eat green beans and turkey!


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PostPosted: Fri Jul 15, 2005 6:58 am 
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Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6455
Location: Ottawa
It's an overwheming feeling when your child is diagnosed with a food allergy. After all, we're supposed to protect them against all the bumps and scrapes in the word. Over 70 food allergies :shock: . Boy, that's a lot.
As a mother, my advise is to do your research. Read as much as you can on the subject and find a few people who will listen. This is a good forum. The Food and Anaphylaxis Network is an American website that you may want to visit, too.
Keep the lines of communication open with your husband. It's stressful enough with out you being angry at each other.
Know that your husband is coming from a place of protection for your son just as you are. It's just a different protection place. In this age of privacy awareness he may not want medical information out there on his son. He may feel you are too open and trusting to share this much with strangers. He may be desperate for Christopher to lead a normal ife and feel that this sets up road blocks. You may feel that you don't want to risk Christopher having yet another reaction. You may both have to talk about what is an comfortable(for the two of you) amount of info to give to playground friends.
Understand that you wil have to educate others including family and friends - they wil be behind you on the "learning curve" as they are not living 24/7 with this.
Be aware that you will need to advocate for Christopher with the medical community. Any medications need to be double checked to see if the contain an allergen. Check with the Dr and Pharmacist but also check the list of ingredients through the website of the drug company which makes the product. Remind Drs to wash their hands before they touch Christopher. Make sure the hospital gives him the ID bracelette which is coded for allergies-they can make mistakes.
Become an Ambassador for allergy awareness! You will soon be sought out by those around you who wish to learn more on how to keep Christopher safe. Become comfortable talking about it. Allow others to know that you have soem information and are comfortable taking about it. They will ask you questions.
Come up with a game plan for dealing with this day to day.
Sign up with your government for food recall e-mail alerts.
Find a few foods that are safe and that he likes. Carry them with you and stash them at family/friends. Ther is nothing like having a hungry child who can't eat anything.
Carry a change of clothse in case something gets on his clothes.
Carry a recieving blanket or spare beach towel to place under him when he rides in shopping carts sits on public benches etc.
Carry diaper wipes and use them to wipe down suspect surfaces, your hands, his sippy cup when he drops it etc.
Talk to his Dr about what to give him for reactions and carry it with you. Personaly, I got afanny pack from the dollar store and it contains 3 EpiPens, Benedryl and a medicine measuring spoon. It containes a list of medication our daughter has ever taken with the reactions listed beside them. It contains telephone numbers of myself and her father as well as her Pediatrician and Allergist. Money for telephone calls, vending machine coffee etc and parking. It contains her vacination record, birth certificate and health insurance card. It goes into the backpack (which was her diaper bag) and it goes everywhere she does.
Hopefully as Christopher systems mature he wil lose some of his allergies. In the meantime help him to learn how to socialize and play in a safe way. Teach him to never share food, take food from anyone but your husband or you. Keep a safe meal/treat
close at hand (freezer) for those emergencies. Give him the words, processes and tools tokeep himself safe so that he doesn't grow up thinking the word is a scary place. The world has some dangers yes, but they are managable.
Good luck! Keep posting!


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PostPosted: Sat Jul 16, 2005 4:46 pm 
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Joined: Tue Mar 22, 2005 6:53 pm
Posts: 1454
Location: Canada
Hi Leti,

Your poor son! What foods can your son eat? Maybe people on the list will have some recipe ideas. Have you taken your son to a nutritionist? He/she might have some suggestions as well.


Last edited by Helen on Sat Oct 18, 2008 8:38 pm, edited 3 times in total.

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PostPosted: Tue Jul 19, 2005 12:17 pm 
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Joined: Wed Jul 13, 2005 2:36 pm
Posts: 3
Location: Napa,California
Lisa, thank you for your note. Christopher, my 20 month old son can tolerate chicken, rice, corn, sweet potatoe, bananas and sometimes applesauce. He tested positive / allergic to 70 other foods, and I don't have the list in front of me at the moment, however the blood and skin test showed that he was 4++ on beef, dairy, wheat, eggs, green beans, peas, fish, nuts and tree nuts.

I have tried talking with nutritionists, however, I have not been able to locate one that understands food allergies, and infants/toddler needs. The several nutritionists we have seen did not understand why I woudn't introduce "grape seed oil" or some form of oil to his diet, they felt that he needs it for nutrition and to help with his skin dryness. My concern is that I have yet to locate an oil that does not have traces of nuts and with Christopher having over six anaphylactic shocks that were Very Severe, I as his mother don't take any chances. The last nutritionist requested that I feed him the oil at the emergency room and watch and wait to see if he reacts. That was the last time we visited her and since then we have not seen anyone else. The pediatrician feels that Christopher is growing "allright" and he shows incredible amount of "brain activity" (we think he is a genious :D )

I appreciate the comment on perhaps talking more with other parents - that may change their immediate response of removing their child from being around us. Thank you :wink:

I am hoping and wishing that I could find or locate a physician or specialist that will be able to provide better guidance and education / information. I am not looking for a magical solution, but more of an understanding why he is soo over reactive with soo many items including food and environment.

I am frustrated to hear that he just is and that avoidance is the solution, that is like telling me to keep him in our house around the clock every day. That just doesn't sit ok with me.
Thank you to all for listening. :cry:

_________________
My 20 month old was diagnosed with over 70 food allergies before 6 months of age. He is currently living on 6 foods: corn, rice, sweet potatoe, chicken, bananas, & apples. Now he can eat green beans and turkey!


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PostPosted: Tue Jul 19, 2005 1:20 pm 
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Joined: Tue Apr 12, 2005 9:50 am
Posts: 205
Location: Canada
Hi
I can only imange how difficult this is for you all. One of my Sons has the fish/shellfish anpha that I have, we never exposed him to it. I have always had that allergy. He did have the strawberry and cherry allergy and he out grew that as he became closer to his pre teen years.

I am unigue as I have gotten more allergies as I aged and not the reverse, this is a rare thing to happen. One of my newer food anaphylaixis was to food additives this was a hard one to find help with as it was before computer age of now, it was in the 1980's.
I have seen that their specialist in the allergic needs, but they are few and far between.I have never met any.

Do you make all your own food for Christopher? We have to make mine as the additives are deadly for me.

I saw that applesauce is on your list of maybes does it matter which kind of applesause?
for example the granny smith or delious applesauce?

I know my situation is totally different, but I thought chime in with the excellent advice from the young mothers If your Doctor is happy with his growth and all then this EXCELLENT :D You are doing a wonderful job in a very difficult situation ! :D
Kelly


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PostPosted: Sun Jul 24, 2005 2:59 pm 
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Joined: Tue Mar 22, 2005 6:53 pm
Posts: 1454
Location: Canada
Hi Leti,

Since your son is so severely allergic to wheat, he might need to avoid oats and barley as well--these grains are harvested with wheat.

Sorry that you didn't have a better experience with the nutritionist. I can understand why the nutritionist is concerned about the oils...but I can also understand why you wouldn't want to take the risk if there is a possibility of contamination with nuts--especially since your son has had so many severe reactions in less than two years.

http://www.nutritiondata.com is a good resource--you can look up the nutritional value of practically anything.

I eat a lot of rice as well, and a coffee grinder has become one of my most-used kitchen appliances (and I don't drink coffee). I use it to grind up grains. You can buy pre ground rice for rice cereal, but you can also make it yourself. I use 3 parts water one part ground grain for porridge. I really like rice cereal---and it tastes good with some salt and blackstrap molasses and some fruit.


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