Any Level 6/100++ out there?

15 replies [Last post]
By Mach5AR on Tue, 04-27-10, 03:11

Got back test results for the boys today on their peanut allergy and if we weren't scared witless before, now we are just terrified beyond words. A normal reaction is 0.3, that's 3/10 of 1 percent. Alex scored a 25 on the RAST and Aaron 100++ making them a Level 4 and Level 6, meaning almost certain death for Aaron if he ever comes into contact with peanuts and definitely a life threatening reaction for Alex. Anyone have a Level 6/100++ child too?

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Mark D. Hill

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By BestAllergySites on Tue, 04-27-10, 16:48

Mark,

Welcome to peanutallergy.com!

It's hard to NOT look at the numbers, but I'm afraid to tell you that the numbers don't tell the 100% truth.

There are some kids with high numbers/levels that have very mild reactions and some kids with low numbers that have very severe reactions.

Bottom line is--regardless of the testing numbers and levels--you should avoid the food you are allergic to.

My son started off at 99+ and is now in the 70s I believe with peanut. I honestly don't pay attention because we avoid.

However, I will say that my non allergic son had a peanut butter ice cream once. My husband helped him wash up and clean his hands etc. Then washed his own hands. He then noticed one spot on the table, wiped it with a paper towel and forgot to wash his hands.

Upon my husband flossing my food allergic sons teeth that night my son said that his lips were itchy and he then developed a hive next to his mouth. My husband washed his face immediately. My son's reaction did not progress.

Needless to say it was a small amount, however my son's numbers are high. It could be worse next time, it could be better.

I wish I had more information for you. The best thing is to avoid peanuts if your child tests positive and has had reactions in the past.

If there were no reactions in the past EVER to peanuts it is "possible" that you received a false positive result. I would discuss that with your allergist.

The only true allergy test is reaction history.

Hope that helps!

Ruth

__________________

Ruth LovettSmith
Founder of http://www.bestallergysites.com/
Your Food Allergy and Gluten Free Guide, and the largest Internet directory of allergy related companies, sites, and blogs.

Disclaimer: I'm a food allergy advocate and mom of a food allergic child. I am NOT an allergist. My comments are based on my research and experiences. Please speak to your doctor regarding medical concerns.

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By Mach5AR on Tue, 04-27-10, 17:28

we have had one reaction and it was an inhalation reaction. He sat at a table at school, even after we had instructed the teachers and staff about his allergy and its severity, across from a child eating a peanut butter sandwich for only 20min and began having a severe reaction. We did not know if he would live or die for 4 days and that was just from breathing in the aroma of the sandwich.

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Mark D. Hill

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By chelle.tovar on Wed, 04-28-10, 20:29

Thats terrifying ! My daughter was not given a score. In fact, I didn't find out til becoming a member of this site.

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By Nicole Smith_Allergicchild.com on Thu, 04-29-10, 20:22

My son has a 2 on the RAST score, yet has contact reactions to peanuts, and can no longer receive skin prick tests to peanuts because he gets satellite hives and has to have the test stopped!

I learned that his low peanut RAST score doesn't mean anything for him, such as outgrowing the peanut allergy.

I've heard of children with a defined RAST score of 250 to peanuts, which I guess is a special test to obtain the specific score when it's over 100. It certainly indicates a peanut allergy, but has been mentioned - it doesn't necessarily mean specifically how bad the allergic reaction will be.

__________________

Nicole Smith
Allergicchild.com
Author of "Allie the Allergic Elephant: A Children's Story of Peanut Allergies"

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By rm80 on Thu, 04-29-10, 23:44

A couple of things to think about. It may not have been aroma. Kids are messy eaters, multiply the staying and transference power of a sticky substance like peanut butter. My child is only a low class 3/high class 2 to peanut and was sent into anaphylactic shock through touch from a child who had eaten peanut butter hours before. A couple of months ago I had to pull him out of a class when I learned that one child had just finished a PB&J in the car on the way to school. The other child in his class that is peanut allergic had a reaction. They suspect it was residue left on one child that transferred to him.

So two main points. 1) Peanut butter gets around. It may not have been the smell only. 2) RAST numbers don't mean it's worse or better for predicting severity of reactions.

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By Mach5AR on Fri, 04-30-10, 03:28

To rm80,

There was ZERO contact at the table. The table is round and 5 feet across and they sat opposite each other. I have detailed reports, as this was logged and investigated. This was strickly inhalation induced reaction. I have the same reaction to the smell. We are part of a small percentage of extreme reactive peanut/tree nut allergic people and can have extreme reactions to the smell via inhalation, contact or ingestion in even the most miniscule amounts.

__________________

Mark D. Hill

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By B3K on Wed, 05-19-10, 12:19

I asked our allergist about the "number scale" I heard about on this site and asked if we should find out what level our PA TA son is and he just said "your either positive or negative thats it." but then he proceeded to do 80 test on our sons back ( not nuts) and wrote down 4++ to about 40 of them most enviromental but a 3 on dairy and 1 on wheat. so i was confused. because Our child has no symptoms or reactions to any of the allergies he tested for (when exposed or consumed) but he wants to treat him aggressivly with shots and rx, and eliminate dairy. after reading many posts i am going to get a 2nd opinion. Do you think I should have my son tested to see level of severety of PA TA? he has already had reactions and we carry epi-pen. So is there a need?

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By Mach5AR on Sun, 05-23-10, 03:32

I would get a 2nd opinion as it does seem strange what he told you vs. real world exposure to the other allergens. As far as the peanut level, if he's had reactions in the past and you have an epi-pen, I don't see the need to measure his severity level unless it has been a while since it was last done and then you could determine if the reaction level is going down or up or the same from a new test, but even so the level doesn't mean that a level 2 wouldn't have a severe reaction or a level 5 a mild reaction. Each one can be different depending on different variables; however, the higher the level the greater the propensity for a full blown anaphylaxis type reaction and while it seems I may be talking out of both sides of my mouth, remember this, it's your child. Do what you feel is best and right for your child. Just make sure you're making an informed decision. Do your own research and by all means write down questions for your allergist to answer and make sure they get answered before leaving.

__________________

Mark D. Hill

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By rferrari001 on Thu, 06-17-10, 15:12

my son is over 100 on one of his allergens

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By hollyredding on Sat, 07-31-10, 20:38

I am new here, but thought I would post. My son has a RAST score greater than 100. He was diagnosed as a 9-month-old as I would eat peanut products and then speak to him or kiss him and he would get hives all over his face, wheeze, and the whites of his eyes would turn red. Fast forward - He accidentally bit into a pretzel that had peanutbutter in it (at relative's house) immediately spit it out (never swallowed it) began vomiting profusely, and within 15 minutes (during which I was driving to the ER) was completely red, unrecognizeable because of swelling, and the whites of his eyes were completely red. For kindergarten and first grade he had an aid that carried his EpiPens and was always close by. Our doctor told us before that he was too severe to qualify for any of the desensitizing studies (Duke) and now he is saying that an anaphylactic reaction is an anaphylactic reaction and the blood tests don't make him any more severe than anyone else. I see his point to a degree, but with my son and it sounds like your son as well you have both blood work and a real-life experience to confirm severity. It just seems like common sense that the higher the kU/L, the worse the reaction but maybe not? I was trying to explain to my doctor (who obviously has not spent much time in public school lately) that kids do not have appropriate personal space boundaries that adults eventually learn and our often in one another's space. It's very scary to have a child with this severe allergy and send them to school!

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By hollyredding on Sat, 07-31-10, 20:43

Also Mark, you child is entitled to a 504 health care plan that you determine with the school by requesting a meeting with the Superintendent, Principal, nurse and teacher. It is different from an action plan and ensures that the school takes accountability (to a degree of course) for your child's safety while in school.

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By nmainmom on Tue, 09-14-10, 16:05

I know this was posted a while back but I would like to add: My daughter tested at a level 6 (100+) for peanuts on the RAST too. My daugher doesn't have a reaction if "smells" peanut butter or peanuts. (No we didn't try it...we found out after the fact that she had been around peanuts while on vacation. She DID NOT touch or eat any form of peanuts though.) We just know she didn't have any issues. (So, Glad!) We do not have any peanut or tree nut products in our home and we always read any ingredient list. About the 504 plan ANY child that has an Epi-pen (any brand) at school because their allergy is life threatening can apply for a 504 plan. It is more detailed than an action plan. It does take some time to fill it out and have it put into place. I am considering it for my daughter but haven't decided if it is needed. (So far the school is really on top of the allergy issue as they have at least 10 children that this affects.) If you feel it would help protect your child at school then you should request a meeting to go over the 504 plan. Hope this helps!

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By watchfulmomma on Fri, 10-08-10, 03:09

My daughter was diagnosed with PA before her 2nd b-day and is now 8yrs old. We were told her allergy was severe but they didnt put a number with it.. Of course over the next few years we learned to live with her allergy and dont go anywhere with out her epi. Her allergist originally told us that it didnt matter what the rast test showed she had a history of reaction and the skin prick was positive and there was really no way to predict the severity of a reaction. Practice avoidance and know how to deal with an emergency if it arises. That being said almost six years later a couple of months ago her allergist ordered some blood work and I ask if we could do the test since we were drawing blood anyway. We did and my daughter was 100+

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By charitie on Wed, 10-13-10, 02:19

My child had a 100 for dog . We went to a restraunt in chinatown (San francisco). The cooks were up in the front of the restraunt(cooking with nuts etc )and as soon as we got the order to our table I was having to constantly pull my sons tiny fist from rubbing his eyes raw and itching his face and neck. We had to leave the restraunt quickly and wait for everyone to pay the bill and meet us outside.

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By calmom on Thu, 10-14-10, 15:44

Do not panic.

My son is now 15 years old and has never tested less than 100 since he was a toddler. He is not anaphylactic to contact reactions at this time. He has had contact dermatitis, swelling, itching, etc., to contact but not progressed to anaphylaxsis.
He does not react to "smell", but has reacted to residue, etc. as a contact reaction.

Symptoms vary, individuals vary. Every exposure can be different. You are in it for the long haul now.

My older mom advice-

Follow precautions. Educate yourself and them, don't make assumptions, assume goodwill or allergy intelligance from others. Have them begin to wear their pens at an early age and medic alert bracelets so the habits are ingrained and immutable. Teach them "peanut" in as many variations and languages as you can for ingredient labels. Train to self administer. Be prepared to advocate for their safety over and over again as they grow.

There is a lot of detailed information all areas on these boards and elsewhere. Use the experience of others to help you.

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