Our 1st allergist appt is today!

Posted on: Sun, 01/07/2001 - 8:56pm
MattsMom's picture
Joined: 09/17/2000 - 09:00

Well, now that the holiday (and weather and computer prob and company) chaos is over with I finally have a chance to get back on the site. Actually, I probably would have waited one more day to get the Christmas decorations put up first, but Matt has his first allergist appt today, and I wanted to get on here and get a list of questions made up.

I did a search last night and came up with a lot of really good questions and then tossed in a few of my own pertaining to Matt specifically. I have the paperwork they sent me a month ago filled out, and I've just finished going through and getting caught up on most of the posts I've missed in the last month. So, now I'm checking in to say hey and to let everyone know that I am nervous as all get out!! =(

I want so badly for the allergist to say "Nope, he's not allergic!" and be RIGHT, but I'm not counting on it. I don't know if they are going to be doing any testing today or not, but I hope so. For one, because it is about an hour and a half drive that I don't want to have to make again anytime soon, but mainly because I want answers finally. I don't know that they'll be able to or not, though. He's had a nasty cold for about a week, and had been taking cold medicene with antihistamine in it. I stopped giving it to him Thursday which meets the "not for 3 days prior to testing* rule, but the poor kid is still sick! They both have a really horrible cough and runny nose. (I'm calling the ped once they open to see if I can get them an appt tomorrow or later today.)

We're still not sure whether or not we want Matt tested for PA or not. I think for the most part we've decided that if the allergist will consider him allergic withOUT testing for peanuts, we won't test for that.

We really want the allergist's backing on the diagnosis though. Not so much for our sake, but for my moronic family's. My parents specifically. We're really hoping that with an allergist (in effect) telling them that he is indeed allergic and that even a trace amount is dangerous and that it IS a life-threatening allergy that he most likely will NOT outgrow, they'll finally get the picture. It's a long shot considering how much my mom believes in doctors and modern medicene for the most part, but I'm still hoping.

Knowing what else if anything he's allergic to will be really helpful. And I need to know whether or not we should get our daughter tested as well. She has had a few of the same type rashes/hives Matt gets, and as we speak is suffering from her second bout of eczema. My list of questions is so long, I highly doubt I'm going to get answers to all of them, but I'm sure going to try!

Well, I'd better get off of here now and get showered and breakfast fixed. The appt is at 10am, so we've got to leave in 2hr. I'll post with a report once we get back! =)

with Meagan (3, non-PA) and Matt (2, PA)
who has REALLY missed these boards and everyone here and is so glad to be back! =)

Posted on: Mon, 01/08/2001 - 2:45am
Anonymous's picture
Anonymous (not verified)

We're all pulling for you today - hope you get all you are hoping for out of this appointment!

Posted on: Mon, 01/08/2001 - 3:27am
Anonymous's picture
Anonymous (not verified)

Matt's Mom, please let us know how it goes to-day! I was wondering where you'd been lately!
Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Mon, 01/08/2001 - 7:53am
MattsMom's picture
Joined: 09/17/2000 - 09:00

Well, we're back. And we're going to be staying. =( (Not that I'm surprised) We gave the allergist Matt's background and so forth and she said she did NOT want to test him for PA. She said she felt he was "most definently" allergic and that it would be "dangerous and unnecessary" to test him for peanuts. We don't really mind that he was tested, because we really felt he was anyway, and weren't exactly thrilled with the thought of exposing him again. Anyway...we also have NEW allergies. (Surprise, surprise.)
We skin-tested for 26 things today, and he tested positive to 12. Four were mild positives (1 or 1+) so he is not considered allergic to those (strawberries, eggs, sunflower seed, and cabbage). He tested NEGATIVE for milk, soy, pork, banana, cashew, pistachio, mushroom, spinach, cucumber, blueberry, cottonseed, nutmeg, peas, pineapple, and almond. =) But he tested with a 2 or 2+ for the following:
Chocolate (that explains the reaction after the cookie bars last Nov!)
Coconut (this probably explains the probs while on formula...it contained coconut oil)
Brazil Nuts
As we all know, the #s don't mean a whole lot, so even though these were all 2 or 2+, they're being wiped out of his diet. (Of course the nuts haven't been in there anyways) The allergist wants us to avoid all these and come back in 6mo to see how he's doing. If he does get another one of his "mystery rashes" between now and then (or any other reaction, of course) we go back sooner, at which point we'll probably test for beef, corn, wheat, chicken, fish, potatoes, etc.
Plan of action for reaction? Mild rash or runny nose or watery eyes by themselves...Benadryl, call the allergist. Swelling..Benadryl, call if anything else starts to develop, Epi and ER. Everything else (vomiting, breathing difficulties, etc or two or more at once)...Epi and ER. She also said that if he is having ANY type of reaction that we even SUSPECT is being caused by peanuts...Epi and ER. And she said that if he came in contact with peanuts or we suspected he had, whether or not he had any symptoms yet...Epi and ER.
As for Epis...she's of the opinion that you need them EVERYWHERE, so she had no problem giving us a prescription for 2 more, so we'll have a total of 4 now. She said we need to join F.A.N., get a MedicAlert bracelet, etc. Stuff we planned on doing once it was without a doubt he was PA. And she gave us a # to call if we had any questions about what's on a label, how to get my mom to understand, whatever, whatever, and said that if it was an emerg. we could press 0 and the operator (I'm guessing receptionist) will come get her right then no matter what she's doing (durinig office hours, of course, otherwise the call is automatically rerouted to her house). Personally I thought this was one of the BEST parts of the visit...now I know we truly have a doctor ready and willing to help us. =) She was completely PA aware, too. Gave us all kinds of articles and brochures, some of which discussed Dr. Sampson and his work, and made sure we knew how to read labels and contact manufacturers etc.
She didn't take a bit of offense when we asked for some sort of something in writing that said he was indeed allergic and had to avoid ALL contact with peanuts to show my mom. =) She said that between the three of us (me, dh, and her) we would work to get the family educated and keep Matt safe from here on. Let me tell you, THAT was a TREMENDOUS relief!!! I'm not pleased that Matt is PA/TNA with other allergies, and our work just got harder as far as keeping the allergens away, but knowing we won't be having to fight the drs too really makes it all so much easier!
Oh, and one more thing...anybody watch channel 5 in North Texas? Ever seen Dr. Bob Lanier doing the "60 Second House Calls"? He is in the building next door and used to be in the same practice with our allergist. She said he was forever over there. lol The first video they started to show us (on enviro allergies) was one he did. The second (they switched when they realized Matt was a "Peanut Man") was on anaphylaxis. It was made by our allergist...Susan Rudd Wynn. The nurse that put it in said it was called "When Seconds Count"...I didn't see that title on the video itself though...
[This message has been edited by MattsMom (edited January 08, 2001).]

Posted on: Mon, 01/08/2001 - 10:42am
anonymous's picture
Joined: 05/28/2009 - 16:42

Matt's Mom:
Sorry about all the allergies [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img]
But it sounds like you've really got a great allergist there!! Yeah!! Glad today went well for you - you were very well prepared and got answers to everything. It's also nice to finally know what caused some of those 'mysterious' hives!!

Posted on: Mon, 01/08/2001 - 1:21pm
rilira's picture
Joined: 11/11/1999 - 09:00

Matt's Mom,
I am glad your allergist is so great. Like others said sorry about all the allergies but at least now you know what you are dealing with. Do you think your family will be more accepting of it now?
I think having a good doctor is more than half the battle. As FAN( oops FAAN now) says euntil there is a cure, education is the key.....

Posted on: Mon, 01/08/2001 - 2:46pm
rebekahc's picture
Joined: 12/02/1999 - 09:00

Hi Matt's Mom - Dr. Bob was DH's allergist when he was growing up. I've heard of the video you mentioned...
Good luck!
Rebekah [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Wed, 01/10/2001 - 9:11am
MattsMom's picture
Joined: 09/17/2000 - 09:00

My Dad (so far) appears to be a little more accepting, but when I talked to my mom on the phone, she didn't sound convinced in the least. If she's not, then it won't take 2 conversations with Mom, and Dad will be right back where he was too. *sigh* I did find out what's causing Mom's reluctance to accept it though. Apparently when Matt was at her house one time (he's only been over there like TWICE without me), he "might have eaten some peanut-butter flavored cereal and he had no problems" (which, btw, she never said one word to me about and still hasn't, I learned this through my brother). Ok. First off, she admits it was a "might have" not a fact and then too, there is the possiblity that maybe he did eat one or two of the cereal pieces, but just didn't react noticeably. I've told her all about all these possible scenarios before, but it goes in one ear and out the other. =(

Posted on: Wed, 01/10/2001 - 10:27am
Anonymous's picture
Anonymous (not verified)

MAtt's Mom - Sorry to hear about all the allergies, but your MD sounds like a gem! Think we can figure out a way to clone her?

Posted on: Wed, 01/10/2001 - 12:41pm
Anonymous's picture
Anonymous (not verified)

Matt's Mom, I'm having some difficulty understanding your Mom. I'm positive that when you first posted it was your Mom that originally suspected PA.
What I was really pleased to read is that your doctor is going to try to help educate your family re Matt's allergies and it sounds like Mom especially needs the education.
Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Wed, 01/10/2001 - 3:13pm
MattsMom's picture
Joined: 09/17/2000 - 09:00

You're right, Cindy. It was my mom that first mentioned it was probably the pb and not the soap that made his face swell up so bad. That's why I have such a hard time understanding why she is being such a pain about this. She totally accepted he was allergic to peanuts until October when I discovered this site and realized that there was a LOT more to PA than what we knew. Once I started researching and trying to get Matt in to a dr to discuss the PA, she did a total 180 on me. I'll never understand it. I'm actually thinking about trying to get my mom to go with me to the next allergist appt and have her hear it "from the horse's mouth" sotospeak. I don't know if I can manage it or not, but I'm going to try! =)


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