Adeline's Appointment with the Allergist and Pulminologist

Boy this kid sure gets a lot of press. Hopefully, someday, I won't have to write about her severe allergies and asthma anymore.

We had her allergist and pulminologist appointments this past week. Scott and I weren't very impressed with the allergist and so we are looking to get a second opinion with someone else. Right away he dismissed her allergies. Even though we told him about the many different tests she had done he questioned the allergies she has. Granted, her beef allergy is highly unusual anywhere in the world and her egg allergy is unusual here. And I'll also grant that we didn't have her records with us...my bad. However, we want, need, to have confidence in the person who is treating our daughter, especially when that treatment potentially involves immunotherapy!!!

After the appointment we promptly bought the medicine he prescribed, Symbicort Turbuhaler - an inhaled corticosteroid and long acting beta agonist- only to read in the insert that it is contraindicated in people with lactose allergies. Scott took the medicine back to the allergist and was told there are different milk proteins and she wasn't allergic to that one. Now how he would know that without seeing her tests, and without testing her, still escapes me. We decided I would do some investigating and also confer with our doctor and her allergist in the States and go from there.

Everything I found out from online errored on the side of caution. Basically the lactose is supposed to be safe for people with milk allergies but (and this is the part that helped us decide) there is a possibility of milk protein (0.012-0.029%) in pharmaceutical grade lactose. Also one asthma medicine (Advair Diskus) also containing pharmaceutical grade lactose says, "contraindicated in patients with IgE-mediated allergic reactions to lactose or milk" .

Keep in mind that her last RAST test at 6 years old revealed that IgE levels to milk were 31.50, more than 31.15 higher than the normal (under 0.35 non-allergenic) level. Knowing that she would be inhaling this medicine and that it has the possibility of bringing on an allergic/anaphylactic reaction, possibly at night when she is asleep, we felt that even this small amount of milk was essentially playing Russian Roulette with her.

All that said we are looking for the same medicine that was prescribed but is in an HFA inhaler and doesn't contain the lactose. We were told it isn't here in Uruguay. I just found the web site for AstraZeneca here in Uruguay and we'll be contacting them to see what we can do through them. If we can't get it through them, then we will look to having it sent to us from the States or Argentina. Which should be fine because we would be able to prove to Eduana (customs) that it is not available here.

Now for the appointment with the pulminologist. We felt much more confidence in this doctor. She actually did an exam. She also took the time to listen to us and our concerns. By this point we had some of Adeline's records that were faxed to us by our doctor in the States, and so, she was able to see for herself the seriousness of Adeline's allergies and asthma.

I'll make this really long story shorter by telling you that she has ordered a Spirometry exam to check her lung function and also another Cystic Fibrosis test and some chest x-rays. Those appointments are coming up and we'll have to go to Montevideo for those.

We would appreciate your prayers for this. We know God knew all of this when He sent us here and He knows how to solve this problem with the medicines. And we also know He knows exactly what is happening with Adeline. I admit that the possibilities of what could be happening are not encouraging. Even if it's "just asthma" she has gotten to the point of needing a double inhaler and she's only 8! That, however, is far better than the possibility of Cystic Fibrosis.

Sometimes you feel like a nut...Part 2

After watching Adeline continue to decline I decided to start her on steroids. Already she is doing so better. She is still fighting the asthma but her peak flow numbers are slightly better and she's not coughing constantly.

It was really a good thing I decided to begin the steroids when I did since yesterday we were nearly blinded out by wildfire smoke from Argentina. The smoke coupled with a bad respiratory virus here has caused asthmatics some major problems. Brandon was no exception and so now he is on breathing treatments too. Isabel was flared up last week but seems to be doing ok in spite of the smoke.

Sometimes you feel like a nut...

sometimes you don't.

In Adeline's case she never feels like a nut - unless she's acting like one. Last night we were at a birthday party of a friends daughter. After we non-allergic people enjoyed the egg white frosted cake and the chocolate chip cookies with peanuts the adults enjoyed a time of fellowship while the kids played with a whistle. Each one in turn pretended to be the leader of a parade. It wasn't until Adeline came in wheezing with the whistle in her mouth that the warning alarm sounded in my mind. She was also sneezing and her eyes were red and swollen. All indications of an allergic reaction. (I wonder when she is going to start paying attention to these warnings of her body.)

Once again we went into emergency measures with her - get the Benadryl, give a dose, and watch carefully for further symptoms specifically anaphylaxis. Hit the brakes...BIG problem...though we had the Epi-Pens we didn't have the Benadryl with us. Not good! How quickly do you think we can get our family rounded up? A few minutes later we were home. Adeline had the Benadryl down her hatch and she was sitting with the nebulizer doing a treatment. And I was once again debating the use of Epi.

I went through the warning signs of Anaphylaxis - rash/hives, difficulty breathing, facial swelling, difficulty swallowing, abdominal cramps, vomiting, diarrhea, drop in blood pressure (how do you recgnize this symptoom in someone else?), feeling of impending doom and loss of consciousness. Since she only had one definite sign - difficulty breathing - plus the beginning of facial swelling I hesitated to use the Epi and opted for the breathing treatment and Benadryl.

I have to say that one of the most difficult things about Adeline's severe allergies is not so much the lingering effects (problems with her asthma) after exposure. Rather it is the need to decide the fate of my child. I have been told that the worst thing that will happen with an unnecessary dose of Epi is a racing heartbeat. However there is the possibility with Epinephrine of cardiac troubles. That possible side effect is what causes my hesitation. And so, I go with the Benadryl, which, I just read, is supposed to be the least effective option because it can take up to an hour to take effect. Thank God that each time we have had to deal with her anaphylaxis the Benadryl has worked. But it's a horrible thing to second guess yourself when it seems the treatment should be obvious.

Tonight I sit at home instead of being at church, because Adeline's asthma is now very flared up. Now I have to decide if she should go on a round of steroids. Dr. Cavataio, if you're reading this, I'm open to your advice.