Monday, December 20, 2010

Doctor Appointment

Bee enjoyed watching the fish as we waited for our pager to buzz for our appointment.
After our pager went off, we were whisked behind the purple door-all the door are color coded- and taken to one of the back rooms.  This time we were in an infusion suite which is where other kids are given immunoglobulin infusions among other things.

Our first visitor was one of our doctors.  I brought out my list and we went through all of our questions and experiences for the past six months as I brought her up to date.

Next up, the nurse came to get us to weigh and measure Bee.  She has gained 3.5 pounds since our last visit and is now steadily tracking up the 25th percentile growth curve.  This is a huge blessing since she had completely fallen off any of the growth charts at one point.

Back to the room to wait for the other doctor and in comes the nutritionist.  We go through some of our typical meals and go through several days of a typical breakfast, lunch, and dinner at our house.  We talk about supplements and some of our options.  She decides that olive oil is still probably the safest and best cooking oil for us right now and that Bee should alternate between rice milk and hemp milk.  Bee should take a multivitamin, a vitamin D supplement, and calcium.  We discussed types of flour and grains and she felt we had a good variety with buckwheat, brown rice, tapioca flour, potato starch, millet, and sorghum.  She mentioned quinoa but we've tried that in the past and Bee reacted to it.  We'll wait on that one.  A new one to try might be teff flour which is higher in protein. 

Finally, our other doctor made her appearance.  We went back through my list.  She agreed to retest Bee's IgE levels to certain foods and we made a list of which foods to test.
She felt we should up our lotion to twice a day for the winter to keep Bee's skin hydrated and eczema free.
The doctor said we should avoid any food that causes a slight skin rash even if Bee does not develop hives as she is obviously, at the very least, sensitive to this food and could still have an anaphylactic reaction to these foods.  That means that oatmeal will be out for a while again...
We discussed the holidays and other group get togethers which always have food.  She encouraged me that we do have to be very vigilant with Bee as she is so severely allergic and can have a reaction even if certain foods are in the air.  Her response, "Sometimes you have to be the mean parent who keeps other children away from yours or who has to leave the event.  No one will understand and most people will view you as the crazy parent.  But I understand and the severity of Bee's allergies warrants that type of caution."  Well, it's not fun to hear that we'll never to normal but it is nice to know that she understands, knows I'm not crazy, and encourages the obsessive behavior.  Hey!  I have the doctor's orders to be paranoid and obsessive!
We talked about the new baby, how to handle those potential allergies, and how to determine if the baby will even have allergies.  She decided that we would meet again before the baby was ready to try solids to discuss which foods we should start with and which foods we should hold off for a while.
She felt fairly confident that Bee would outgrow her wheat and egg white allergy but was not as confident that she would outgrow her dairy allergy given how sensitive she is to dairy.  The doctor believed the peanut and tree nut allergy might be here to stay.  She also cautioned us to avoid fish until after Bee was 3 even though we were hoping we could try some fish sooner than that.

There are several things I appreciate about our doctors.
1-They always encourage me and are so supportive of our dietary changes, and they try to stay so positive.  I feel like they are actually compassionate and understanding of how difficult and life-changing it is for us to continue a somewhat normal life.
2-They never treat my questions as crazy and are never condescending.  They actually listen to my questions and concerns and believe what I say regarding our previous experiences and reactions.
3-Sometimes their answer is, "I don't know."  They acknowledge that they don't know everything and that predicting and determining food allergies is not an exact science.  So, sometimes there is not an exact answer, a definite, or a rule.  They treat parents and children as individuals and know that each child and reaction is different. 

After our lengthy visit, we were sent to the lab and then finally headed back home for our 1 1/2 hour drive.  That was one long day!!!


Jackie said...
This comment has been removed by the author.
Jackie said...

. I just found your blog and it has been so helpful! My son's story is very similar to Bee's and we manage multiple food allergies for him. Top 8 plus more. I am also in Texas, and I was wondering what part of Texas are you in? If feels great to know that someone else "gets it!"
January 18, 2016 at 4:36 AM

Lexi Henegar said...

We used to live in San Antonio area. Our doctor was in Houston at Texas Children's though. We loved her and miss her a lot. We recently moved to Indiana so now we live very far away. I have yet to find a new doctor here!

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