I need your help!

Posted on: Fri, 04/16/1999 - 11:14am
Kelly Morse's picture
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Joined: 03/13/1999 - 09:00

Everyone - I am having a problem that many of you probably have already encountered... My children are currently attending a daycare that is in someone's home. This woman had been exceptionally helpful during our very stressful time trying to adjust to our son Spencer's recent problems related to his egg, peanut and soy allergy. My problem is with the other parents at the day care. Our provider has posted a very large and colorful sign at the entrance of the daycare that states that no peanut products are allowed due to an allergy. Despite this large sign, several times children have entered the daycare holding peanut butter sandwiches or crackers or have peanut butter on their faces because their parents failed to clean them off properly before bringing them.

I have requested that the day care allow me to send a letter home to each of the parents explaining our situation. I am hoping that maybe one of you has already tackled this and could offer suggestions. I am so angry and emotional at this point that I am afraid that I would not be effective.

I wanted to also that an opportunity to thank Tracy for her topic of "Questions to ask the Allergist." We printed off the entire 38 pages and took it to the allergist with us yesterday (4/15/99). It was extremely helpful and allowed us to ask relevent and educated questions. The following is what our board certified pediatric allergist said:

Treat hives and atopic dematitis with Benadryl. If there are breathing difficulties or the child appears "shocky" use the epinephrine. You should see dramatic improvement between 5 and 10 mins after the shot. If not, administer another dose and either drive to the hospital or call 911. He also suggested that if you are unsure about the level of the episode start driving to the hospital immediately. He said that you can always sit in the driveway if the first dose of the epi works or the symtoms decrease. If they do not get better you are already at the hospital and just walk inside. (He also said you could just sit in the waiting room and then decide if your child needs to be seen.) I think this is excellent advise for my family (and maybe yours) since we are 30 mins from the nearest hospital.

As far as the epi dosage: our doctor said the epi-pen jr. is too much for a 25 pound baby. I also confirmed this with my sister-in-law who is a pharmacist with RiteAid. My Spencer is 25 pounds and his proper dose is .10 ml. We were given a glass container of epi with syringes. The glass thing carries 10 doses however you would only use 1 or 2 and (hopefully) be at the hospital.

Our doctor said he has had patients who have outgrown the peanut and egg allergies however they are the exception and not the rule. I, like one of the other mothers, was too afraid to ask if any of his patients had died from a reaction.

Our doctor agreed that if someone vomits from a reaction it is a bad sign that their system is being overwhelmed by the reaction.

How life threatening? Spencer rated a IV for eggs and peanuts and II for Soy and we were told to consider those life threatening. Since we have never had an accidential ingestion of peanuts (we found out about the allergy before he was off baby food) the only way to be sure what type a reaction he would have would be to bring him to the office or hospital and give him some. The doctor STRONGLY advised that we not do that since we were dealing with a one year old.

Spencer has had 2 RAST tests and his score for peanuts and eggs was unchanged over the course of a year. (I know some parents found their scores went down when they removed the food from their childs diet.)

Our doctor strongly recommended that we get the medic alert braclet and join FAN. We have done both and also order lots of their materials so that we could share it with the other parents at daycare.

Our doctor did say two things very different then Tracy's did:

1. Epipen Jr. is too much for a child under 50 pounds. (What are other doctors saying about this?)

2. The Zyrtec is too strong for children under 2 yrs old (however other countries apparently don't have the restriction). Our son has bad Eczema as well and we were hoping for some relief!

I think that is about it from what the doctor said. I hope that this helps. I don't know who is right or who is wrong but I am learning more about this topic then I ever wanted too!

Oh, one final thing: If you are flying, Northwest will make their flights peanut free if you tell the travel agent at the time of booking. You will also need to let the ticket agent know at the gate and they will make an announcement asking people to refrain from using those products on the flight. We were going to take the children to Florida however after our recent visit to the doctor and several sleepless nights we decided that the pain of being separated for 4 days was far less than that of a reaction during the flight.

Thanks for listening and for any suggestions on what to say/write to the day care parents! Thanks again Tracy for starting the discussion!

Kelly, Another Mom in Michigan

Posted on: Fri, 04/16/1999 - 12:22pm
tracy's picture
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Joined: 02/03/1999 - 09:00

Kelly,
I'm so glad the questions topic was helpful. It was extremely helpful to me to brainstorm with everyone and I think it's a good idea to keep asking our allergists these questions. I'm going to keep my list of questions active and periodically review them with our allergist. I also find it enormously helpful to learn what everyone else's doctors are saying. Thank *you* for providing us with your doctor's information. I told my doctor that we were comparing notes -- I told him this in a nice way so as not to get him defensive, but to let him know that we're doing our homework.
Regarding the Epi-pen Jr., our first allergist also gave us a vial because he said it was too strong for our 20 pound baby. Trying to measure out the correct dose using a regular syringe in an emergency situation scared me, though... What is more dangerous: a little too much epinephrine, or the possibility that you're going to fumble the vial or incorrectly measure the dosage? All other doctors we spoke to said the epi-pen-jr dosage was fine. Dr. Robert Wood, an allergist who spoke at the FAN patient conference, said that epinephrine will not harm children -- I believe he said people with heart problems may have problems with it. He said the cutoff from the Epi-pen-jr to the Epi-pen was 44 pounds. He didn't discuss (to my recollection) how small children could be to use the epi-pen-jr. (Dr. Wood is allergic to peanuts, so he's probably a little more knowledgeable than most.)
I have written up a trip report which I swear I'm going to post -- I'm really sorry I haven't posted it sooner. It's on another computer and I can't get access to it right now. However, posting this trip report is high on my list, so everyone just bear with me!
Regarding the Zyrtec, we used it on our (at the time) 13-month old (19 pound) baby with no problems. We used a very low dose for a couple of days. It cleared up his eczema really well and we haven't had much problems with it since, although we do use hyrocortisone ointment on rough spots that pop up from time-to-time and we keep our baby well-lubed with the Complex 15 lotion the doctor recommended. (I'd classify our baby's eczema problem as low to moderate, but I don't have much to compare to.)
It sounds like your doctor is very conservative, which is a good thing. I would always rather adopt the conservative approach, however, you might want to get another opinion from another doctor, which never hurts either.
And finally, regarding your emotions running high with this daycare, that is going to show through, and it may do more harm than good. I think in cases like this it's better to get an authoritative 3rd party to deliver the news, like your doctor. Perhaps he/she could write a letter which the daycare could then send to these parents. (You could draft this letter yourself and ask the allergist to edit and sign it, which would save him/her time.) I have found from personal experience that I sometimes have to remove myself from the situation and ask someone who is less reactive to take over. (There is no shame in doing that -- it takes a mature person to realize he/she is not the best "man" for the job.) Also, keep in mind that many people honestly don't realize how serious this allergy is, so a note from the doctor explaining the dangers will drive that point home better than you trying to explain it.
It's good the daycare is working with you. That's something to be thankful for!
It's very easy for me to type all this stuff in, but much harder for you to actually go through it. Let us know how it goes. I haven't had this experience that you're describing (yet, thank goodness), so I'll be interested to hear how you get it resolved and what works well.
--Tracy

Posted on: Fri, 04/16/1999 - 1:43pm
dhumphries's picture
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Joined: 02/02/1999 - 09:00

Hi Kelly,
My day care has adopted the "wipe hands and face" policy when entering the classroom in the morning. Although I said I would furnish the wipes, they graciously said that they would furnish them, since it was part of their fee. They instituted the pnt free facility a little over a month ago when Matthew first started, and I will say that all went well for a couple of weeks, then came Easter, and the parties. Several parents (not in my son's room fortunately) brought peanut goodies, and when told they could not be allowed in the facility, they got very offensive. A couple even said that they were pulling their kids out if this thing was that dangerous! As my mom always said, "this too will pass" and so it has. I am just waiting for the next major holiday and its difficulties. Good luck to you. I know how difficult this whole thing can be. Sometimes you just have to sit back and take a long, deep, calming breath and assure yourself that both you and your child WILL get through this, and be better for it.

Posted on: Fri, 04/16/1999 - 10:26pm
Coco's picture
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Joined: 03/14/1999 - 09:00

Kelly it may require a lot more than a letter to deal with this sticky situation. If it is a letter that you are after, you can find samples at the address listed as my homepage. (At the top of this paragraph CLICK on the little box at left. CLICK on the homepage address. You will see blue boxes at top of pg. CLICK on On Line Articles, then CLICK on Sample Letters to Parents.
I am concerned about some of the information that you left the doctor's office with. Could you E mail this or fax it to the FAN and ask for a referral to another doctor in your area? A second opinion is often a good idea.
It is not a good idea to drive anybody in a life threatening situation to a hospital. This can be a recipe for disaster.
I tried to E you some information. It was returned saying that your address would not accept it. Do you know why this would happen?
Best of luck in the Day Care arena! I hope that all goes well. (If this is a small group of parents, a chat can go a lot further than a letter sometimes.)

Posted on: Fri, 04/16/1999 - 10:30pm
Kelly Morse's picture
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Joined: 03/13/1999 - 09:00

Thanks for the suggestions! Tracy, I am glad that I am not alone in thinking that those vials look like they would be hard to use during a "crisis"! Michael and I have had a little experience because our fertitily medication came in the same type of thing but that was a no-pressure situation where we could take our time (the pressure came later [img]http://client.ibboards.com/peanutallergy/smile.gif[/img]-great big smile).
I am going to talk to our day care provider about the "wipe hands and face" policy. I think she is doing this already for most of the children but if she does it for everyone then no one will feel "singled out."
Does anyone know how I could get a hold of Dr Wood to ask for some information for my allergist concerning the Epi-pen jr for kids? I am a little confused between what he is saying and what out doctor is. If our doctor says 50 pds for the Epi pen jr and Dr Woods is saying 44 pds to move to the regular Epi pen, then that is a SERIOUS difference! I am wondering if my doctor is not aware of some new research or studies... I know medical things change all of the time.
Thanks again!
Kelly, Another Mom in Michigan

Posted on: Fri, 04/16/1999 - 10:53pm
Kelly Morse's picture
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Joined: 03/13/1999 - 09:00

Coco - I am having some problems with my home e-mail. When I first went on-line we were getting tons of "prono" mail and I changed my preferences to "AOL-Only." For the life of me I can not figure out how to change them back. You are welcome to e-mail me at work at [email]morsek@state.mi.us[/email]
I will add my work email to my profile when I am done here. Sorry for the problems. Our family is just beginning at this internet stuff.
Thanks for your website suggestion. I have already printed it off to review with my husband. Any other suggestions you may have would be very welcomed!
Concerning our allergist...He is considered the "expert in our area." He is the person who goes on the radio, tv, etc. Everyone I have spoken to concerning this has either gone to him or their children have. The walls are filled with awards and the waiting room full of patients. He spent lots of time with us and seem to be very concerned about Spencers care. It sounds like his "read on things" is very different from everyone elses doctors though. This put me back to VERY CONFUSED!
Thanks!
Kelly, Another (very confused) Mom in Michigan

Posted on: Sat, 04/17/1999 - 4:17am
tracy's picture
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Joined: 02/03/1999 - 09:00

Kelly,
Well, count me in on the confusion. Our allergist was recommended by 4 separate people (two of whom are doctors), is also on TV a lot, and he supplies one of the local stations with their daily allergy reports. He spent a lot of time with our son and answered all of our questions.
I think this just goes to show there's not one right answer.
As for my 21 pound son and the epi-pen-jr, we'll just use the jr version if we have to. Our goal is to not need to use it, so hopefully he'll gain a lot more weight and it won't be an issue soon.
I found the yellow "Physician Insert" that comes with our Epipen Jr. (which clearly states, "pharmacist please remove before dispensing" haha!) It says (among many other things) the following:
***********
Hyperthyroid individuals, individuals with cardiovascular disease, hypertension or diabetes, elderly individuals, pregnant women and pediatrict patients under 15 kg (33 lbs) body weight may be theoretically at greater risk of developing adverse reactions after epinephrine administration.
[...]
Pediatric Use
Epinephrine may be given safely to pediatric patients at a dosage appropriate to body weight (see Dosage and Administration).
Dosage and Administration
[...] Usual epinephrine adult dose for allergic emergencies is 0.3 mg. For pediatric use, the appropriate dosage may be 0.15 or .30 mg depending upon the body weight of the patient. A dosage of 0.01 mg/kg is recommended. EpiPen may be more appropriate for patients weighing more than 30kg. However, the prescribing physician has the option of prescribing more or less than these amounts, based on careful assessment of each individual patient and recognizing the life-threatening nature of the reactions for which this drug is being prescribed. The physician should consider using other forms of injectable epinephrine if doses lower than 0.15 mg are felt to be necessary.
***********
So, the drug manufacturer is recommending .01 mg/kg. My son weighs almost 22 pounds (10 kg), so that would be 0.1 mg of recommended epinephrine. The epi-pen jr has 0.15 mg. (According to the yellow insert: "The EpiPen Jr. Auto-Injector contains 2 mL Epinephrine Injection for emergency intramuscular use. Each EpiPen Jr. Auto-Injector delivers a single dose of 0.15 mg epinephrine from Epinephrine Injection, USP, 1:2000 (0.3mL) in a sterile solution.")
The regular Epi-pen contains .3 mg of epinephrine, which would correspond to the recommended dosage for a 66 lb person. But keep in mind that adults who weigh much more than 66 lbs are carrying this around.
So I don't know. This is the official information from the drug company, but it's recommendations to the doctor. We're going to use the epi-pen jr in an emergency. Our allergist says it's fine to use this dosage with our baby.
--Tracy

Posted on: Sat, 04/17/1999 - 7:36am
justinsmom's picture
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Joined: 04/10/1999 - 09:00

HI Kelly
Wow - isn't this allergy confusing - if the dr's can't get the info straight???
I have a couple of things to suggest:
1) Re: Daycare. You said she had a sign that said no Peanuts - This should be changed to a no food policy. This way there is no way of accidental ingestion. Also wiping hands and face is a good idea - BUT I would also appeal to the other parents, to not feed the kids in the clothes they are ariving to daycare in and for them to throughly wash hands and face before leaving home. I know that everyone has a busy life _ BUT - come on this is something that every person has to do. Washing before you leave the house should be aas much of a habit as dressing. If you want some help compossing a letter- you can e-mail me.
As for the Doctor situation. My doctor (who is considered one of the best in Canada) recomended my son change from EPi Jr to regular Epi at 43 lbs. (My son was 28 lbs when he developed the allergy - and we had the Epi Jr.) Your best bet is to either get another opinion from a dr. or call a pharmacist, they may be able to give you some info. I called a pharmacist when my son was given beclovent for asthama at 17 months. On the lable from the manufacturer it said NOT FOR KIDS UNDER TWO. I began to panic - it was Saturday - so I called the drug store - the pharamcist told me to call my doctor on Monday to confirm this - but that because of legal matters, the company has to be more sever on the doses and stuff, than actually needs to be. basically he was saying that the beclovent was fine - the company was just covering all angels.
Wishing the best
Donna

Posted on: Sat, 04/17/1999 - 12:56pm
Julia M's picture
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Joined: 02/23/1999 - 09:00

Hi Kelly!
I don't know if this will help or confuse the issue...but my allergist did give some different advice. Kelsey is not quite 20 pounds yet, but he said the EpiPen Jr. would not be harmful to her (even though the dose was above the recommended dose). He also said that you never know how bad a reaction might get, so if we think Kelsey has eaten a peanut product we are to give her the EpiPen and call 911. We are supposed to call him and not to leave the hospital until he tells us to. Some reactions can get worse after a few hours. This happened to Kelsey when she was exposed. It was *just* hives and swelling, but I did definitely see it get better after about an hour, and then get worse in another 2 hours. I think my doctor is on the conservative side. Good luck with daycare. I agree that a doctor's signed note might help parents realize the seriousness of the situation.

Posted on: Sat, 04/17/1999 - 11:30pm
Kelly Morse's picture
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Joined: 03/13/1999 - 09:00

Thanks for the suggestions! I am printing them of to show to my day care provider on Monday.
I am wondering if there is any way that we (as a group) can get a hold of the company or companies that make the epi meds and ask what they would suggest. Surely there has got to be something that I can take to my allergist to support my request for the EPI pen jr for my son.
Thanks, Kelly

Posted on: Sun, 04/18/1999 - 8:29am
DebO's picture
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Joined: 03/15/1999 - 09:00

Hi Kelly
My daycare has been peanut free for about a year (before my daughter was diagnosed) but they were only focussing on the food they served - not anything brought in from home.When my daughter was first diagnosed a month ago I asked them if they would mind if I wrote a letter to the parents. They felt that they should write a letter from the daycare, but then never got around to doing it. So I made one up last week and gave them the fifty copies to hand out! i put a small photo of my daughter in the top corner, and had the letter photocopied onto some specialty paper with colourful letters from the alphabet in the border around the page, since I thought something colourful may have a better chance of being read. I found the letters from the "handbook for school boards" too formal for my taste, plus most of the parents at my daycare are recent immigrants to Canada and the language needed to be simplified. I will e-mail a version of my letter to your work address, as a reference.
I haven't had any response from parents yet, but will let you know what I hear from them!
Edited for safety - Deb
[This message has been edited by DebO (edited May 20, 2003).]

Posted on: Sun, 04/18/1999 - 10:42am
Kelly Morse's picture
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Joined: 03/13/1999 - 09:00

Thanks a ton!

Posted on: Mon, 04/19/1999 - 2:37am
SteveW's picture
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Joined: 04/08/1999 - 09:00

Kelly,
Dr. Wood is Associate Professor of Pediatric Immunology at Johns Hopkins School of Medicine. His office can be reached at (410) 955-5883.
Note: Dr. Wood is on FAN's Medical Advisory Board and is himself allergic to peanuts.

Posted on: Mon, 04/19/1999 - 10:20pm
Kelly Morse's picture
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Steve - Thanks for the info! I am going to call his office this afternoon.

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