We thought we had things under control with my older (not JRA) daughter. Eliminating dairy was working well; she felt so much better and wasn't having headaches or gastro issues (hubby had named her "El Diablo con Leche" LOL).
But we noticed that after eliminating the obvious 'milk' and 'cheese', she went awhile just fine then gradually more obscure things like 'potassium lactate' started bothering her.
So we had to more careful, and started buying those dairy supplements for when we weren't sure.
But now things have changed again, because she is having trouble breathing. She had been having a hard time in swim practice (they are only supposed to take a certain number of breaths). That had never happened before, and I told her she must be out of condition from taking last summer off, and she'd get it back after she practiced enough.
At the meet Thursday night, I saw that something is wrong. She was in a relay, neck and neck, and I was so proud of how hard she was swimming. But when she took a breath, I knew. I saw she just couldn't get enough in. She slowed way down and it was scary. She tried to get another, I saw it wasn't enough. She barely made it to the end of the lap, but she did.
She told me later it was the first time she ever wanted to just stop, but she didn't want to mess up the relay team. She said it was so hard not to do a breaststroke to come up for air, but she knew they would be disqualified because it was a freestyle relay. She said that as she tried to cheer for her teammates in the third and fourth legs of the relay, she was still gasping air.
And later, she said she hadn't told anybody this, but in band they are supposed to breath every third measure and she has to breath every measure.
So we went to the ped yesterday, and she is concerned that my daughter's allergies are worsening. We got an rx for an inhaler to be used before swim practice and meets and referral for allergy and asthma testing and she said they might do a pulmonary function test, too.
I am happy because we will know, and hopefully can manage it by eliminating things and not have to stay on the inhaler long. My daughter is unhappy LOL, because she hates needles and will probably pass out from the scratch test and would rather keep eating whatever she pleases and manage it with inhalers and dairy pills. Sigh.
Suzanne, I'm really sorry to read about this new challenge. You really have your hands full with the different medical issues. I wish I could offer something other than a "hug" and my best wishes. Please keep us posted.Thanks, Jesse. I had to take both girls to the appt. yesterday, because hubby is out of town, and finally my younger one understands that she is not always the focus of every doctor visit!!! When she was younger, she would get downright obnoxious, expecting them to want to listen to her heart, too, etc.
I can really relate and feel for you and your daught for what you are going thru. It took a while before we realized exactly what my problem was -- now I need total abstinance from all factions of the milk in all foods and meds. For example, I have to buy special milk free margarine, read all lables for milk factions, and not take any meds that contain even trace amounts of dairy [they like to put lactose in meds for some reason or other]. One of the popular asthma meds [Advair Diskus, I think it was] that is an inhalant has lactose in it and made me very ill. Perhaps your daughter is becoming more sensitized to dairy? Hopefully the allergist will be able to help her, but it is very hard to find one that is really good with food allergies. Skin tests are not all that reliable, unfortunately, so sometimes it takes some real detective work to figure it out. Keep us posted. Will be thinking "the good thoughts" for your daughter.
Suzanne -