As some of you might know, we have a lot of allergies in the family...
Myself and the children possibly have a genetic condition called Malignant Hypothermia, which basically is a deadly allergy to certain anesthesia (your temperature rises to 110F in a few seconds and you die). Since one of my aunts had it, and the testing for this is done only by certain labs and is extremely painful, I have been advised to just say we have it so they won’t give us the anesthesia that can trigger it.
I am allergic to fish and shellfish, a few medications and herbs, lots of chemicals and environmental allergies. I also am allergic to the sun (Solar Urticaria (SU) and Polymorphic Light Eruption (PMLE)), my own sweat (Cholinergic Urticaria (CU)), Pressure Urticaria (a scratch causes hives) and Dermagraphic Urticaria (pressure, like leaning on something or wearing elastic, causes hives) as well.
DD1 has severe SU, severe PMLE and Solar Eczema, as well as severe CU, Pressure Urticaria and Dermagraphic Urticaria. She also gets severe deep tissue swelling from the sun, called Angioedema. She can have anaphylactic reactions from the SU and CU because it is so severe, but thankfully has not had any yet. She needs to take daily medication (Zyrtec and Zantac) to be able to even move around due to the CU, and also before any exertion (like phys ed class) has to be premedicated with Benadryl on top of the others. She cannot go outside except a little before sundown, so that means no recess at school and it interferes with gym class as well as limiting field trips. I had to put up a nice fight with the school to get them to do something with her for recess other than sticking her into the nurse's office (and being exposed to all the sick kids!). She is also allergic to several medications, as well as contact allergic to many chemicals (such as the ones in sunblock!)
DD2 is severely allergic to Tree Nuts, Eggs and Peanuts. She is also contact allergic to these, including a history of GI-anaphylaxis when it comes into contact with her skin. She has asthma and eczema (tough to treat since she is allergic to topical cortisone, which is what they use to treat eczema!). She did also have what we think was a GI reaction to inhaling peanuts when someone near her opened a pack of peanut M&Ms.
DS... well this is what has triggered my first wall post! Up till now we thought he was only allergic to eggs food-wise, which he was also contact allergic to (gets hives all over his body). He also has Dermagraphic Urticaria, Asthma and environmental allergies. He had Eczema when he was younger, but it had been years since he had a bad bout of it.
But... He has been very sick the past few months, including severe GI symptoms, eczema and hives. He has lost 19 pounds (if you count the 2 he gained back then lost again) and looks terrible.
After my insisting that he be tested for more foods while the doctors were doing other blood work (which all came back normal), we finally got the results this past Monday. He is now allergic to eggs, corn, soy, wheat and milk. Fortunately, they do not think he has Celiac Disease.
DS has been getting migraines again due to the stress of all this. (I found out this morning as I was going to give him some that liquid Tylenol has corn in it!) His resistance to change and sensory issues (related to Autism) are playing a huge part in all of this. Texture of food has always been a major problem for him, and so he has been limited to very few foods. Now most of the previous acceptable ones he is allergic to. He is extremely stressed out at this point.
For me, the past few days have been spent in a grueling way - spending hours and hours reading those tiny food labels on EVERYTHING at a whole bunch of stores trying to find things he can eat (everything seems to have one of these in them), researching on the web, and trying to get him to try to eat. Thankfully, my mom and sister were very helpful going shopping the first two days – honestly I think I might have had a nervous breakdown if I hadn’t had help those first couple of days! This morning, I spent 45 minutes at the drug store searching through his usual over-the-counter medications and talking to the pharmacist about how many medications have corn, wheat and milk in them. Most of the pills also have these in the coatings. Even some inhalers for Asthma have milk powder in them.
I am hoping he will find things he will actually like to eat soon. Last night he tried rice spaghetti and actually liked it - which was very encouraging to us all.
Wish us luck!
0 comments:
Post a Comment