New member, TOTALLY DUMBFOUNDED! (LONG)

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Hi All, I just want to start by saying Thank-you for this amazing website. I have been searching for some kind of solid info for 2 days now, and feel so grateful to have found this website.

I have 3 boys, oldest is 5 - absolutely no allergies, middle is 3, had protein allergy,(dairy, egg, soy), he has almost outgrown them. My youngest is 11 months old, and was in the hospital this week after getting into some PB ritz crackers. I had been avoiding all nuts because we suspected allergies of some kind after #2 had them. So, within 5 min of eating these crackers, he started getting hives. They just kept getting worse, and so we brought him to the ER. He was one giant hive by this time, but Thankfully his airway & vitals remained unaffected. He was given benadryl. He projectile vommitted. We were there about 5 hours. Before being sent home, we were given a syringe of epinephrine, as he doesn't weigh enough for an epipen jr. WELL, the syringe was in my diaper bag, and it leaked. So, I have been trying to get more, and no DR's will give it to us. They keep saying, just call 911. He obviously needs to have epinephrine, since his reaction was quite severe. We live in the country, and I am so afraid that his next reaction will be worse, and that the ambulance wont get here in time. Also, I am really frustrated at the length of time it takes to get into the allergist, or even to be referred. I am trying not to totally panic, but how do you even begin to ensure everything is safe? Can you rely on labels? What about cross contamination? Sorry this is super long, but I am so frustrated, and trying to make heads or tails of this. Any advice would really be appreciated!

Jane

On Aug 27, 2008

I'm so sorry that happened!! I found out my son had PA when he was 13 months so I know many of the fears you have. I can't imagine why no one will give you another Epi syringe. You absolutely do need it. If I were you, I would keep calling allergists until someone will give you one! When my son was 13 months they gave me a regular EpiPen Jr and he was very light weight for his age so I know they give those out as well.

It is so easy to get overwhelmed in the beginning. Grief is totally normal. Give yourself some time to settle into a comfort level that you feel you can live with and keeps your son safe. You will eventually feel like this is not the end of the world.

I write a blog for parents of young children with PA if you are interested. I try to offer some sort of tip and other relevant thing for parents every day. The address is [url="http://www.peanutallergykid.com"]http://www.peanutallergykid.com[/url]

Please know you are not alone in this journey. So many of us have been where you are. In time, you won't be able to imagine your life without PA.

On Aug 27, 2008

Hi Jane..

Wow that must have been soo scary. I would call the ER back that you went to and tell them what happened. it should be inthe notes that there were med dispensed and they could call you in a perscription for more.

When I found out I took all the PB out of of the house.. we don't have a may contains products either.

I would wash his hands often and try to get him inthe habit of not putting his hands in his mouth or eyes. ( I know easier said than done with a 1 yr old). It is manageable just have to watch closely when they are that small. I would cal the pediatrician and ask for referral for an allergist.

It does get better! I promise!

On Aug 27, 2008

Thanks so much for the replies! It really helps to know that I am not the only mother dealing with this. I did try to call the ER, but the DR who issued the syringe wasn't in today, and the other docs wouldn't touch it. I am definitely a woman on a mission! I'm going to call my DR's office tomorrow, and not give up until I have some epinephrine! My MIL is a nurse, and can give us a vial of it, so if it comes down to it, I will have some in the house. But now it is a matter of principle, I think it's disgusting that the DR's obviously know he needs it, and are just turning a blind eye to the problem. I'm sure many of you have been through similar situations. I really would like to become more involved in lobbying for this cause.

On Aug 27, 2008

By the way, Robyn, your blog is great! I will be one of the, I'm sure many, tuning in everyday!

On Aug 27, 2008

So scary!!! I'm so sorry!!!

Like mrsdocrse said one thing to make life a little easier is to first get your house as safe as possible. We personally removed all pn/tn and all may contains, processed in/at/on facility type foods. We do have certain brands/foods that we feel comfortable with and stick to but still read the lables EVERY time I go shopping. At least this way at home I know he is safe and I don't have to worry about it.

Also reading about pna helped me out a lot too. A book I always recommend is the Peanut Allergy Answer Book by Dr. Michael Young. And of course this board is a great resources too.

I would demand an epi pen honestly. My DS was diagnosed at 4 months but they gave us an epi jr. when he turned 9 months. I was worried too because he was under the weight limit but if it were a matter of life and death from anaphylaxis I would rather chance the excess of epi than him dying from anaphylaxis. Just my opinion though :-)

Welcome to the board and keep us posted on your situation!

On Aug 28, 2008

Thanks "saynotonuts"!! Helping others with PA has really helped me not feel like my son's PA is the worst thing in the world. I call it my "therapy." Goodness knows its cheaper than seeing a professional!!

On Aug 28, 2008

My ds#4 tested + for dairy and eggs he was prescribed epi jr. He was 12 months at the time and between 18 and 20 pounds but definitely not over 20 pounds. I would consult an allergist.

On Aug 28, 2008

Just an update, my DR's office called this am , and have said it is ok to fill my prescription for the epi jr. I am definitely relieved! We'll pick them up this afternoon, and just knowing that makes me feel better. My MIL asked me this am why did I need to take him for allergy testing if I obviously know he's allergic to peanuts?? She is a nurse! Is it just me, or does the testing not bring more peace of mind? Can they not tell me the severity of the allergy?? Thanks again for the support, I think I'll be spending a lot of time here. The thing I hate the most is when people act like it's all in my head...

Jane

On Aug 28, 2008

I'm so happy you will be getting some Epi Pens!!! That must be so relieveing!

As for the allergy testing, actually it cannot tell you severity. Every reaction is different. Even the tests can vary. For example, my DS has a 10.5mm wheal on the skin test which is quite large, but on his blood test he is .40 which is just barely over the positive mark of .35. Even with his low blood test numbers that doesn't mean he couldn't have a severe reaction of anaphylaxis. And the reverse holds true too. Just because someone has very high numbers doesn't mean that if they come in contact with pn that they will have a severe reaction, they might just have a few hives.

Testing is useful to follow the numbers over a period of time, typically years. If the numbers on a blood test are dropping year after year it *could* be a sign the child is outgrowing but it does not mean for sure that child *will* outgrow. One year the numbers can go down and the next they can go up.

You may want to have your child tested for treenuts though as a lot of time those allergic to pn might also be allergic to tn. Either way the testing itself won't change the lifestyle but can sometimes provide some information where things stand. Again, though that is over a longer period of time.

On Aug 28, 2008

Oh goodness, I am so sorry for what you went through! There are a lot of us Mommys out here that are there with you-you are not alone. About testing, I would say it does give some peace of mind because you know for sure and also they may have allergies that you didn't even think of. We had my severely pa son tested again recently and not only was he a 4 out of 4 + skin test on peanut but he also tested + for shrimp and flounder-who would have known?? (as well as tons of environmental stuff) So, glad we had it done and now we avoid seafood restaurants altogether. Hang in there!

On Aug 31, 2008

Just a quick update - hopefully someone will read this and take something good away from it for themselves...

I had to take my middle son to the Children's hospital for a consult, and while I was there, I decided to take the baby in through their emergency department, just for a second opinion from a pediatrician, and hopefully someone who cared!

I am so glad I did. We were in and out in only 2 hours. He assured me that the Epipen Jr will not harm him, even though he is under the reccomended weight. He showed me a "dummy" epipen, and let me practice with it - alleviating A LOT of my anxiety in the process. I didn't even know I had any about the epipen. Also, he has put in a referral to a pediatric allergist (same one my other son sees) so I am super happy! I would have had to wait at least another week to see my family doctor, and who knows how receptive they would be?? I had to fight them with my other son's allergies....

Anyway, point is, if you feel a nagging voice in your head, just listen to it, you'll be glad you did! Thanks again to all for the advice!

Jane

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