Three years ago my daughter M, got mono and “The Swine” at the same time. She was at a camp in West Virginia when 2/3 of the kids got sick, sick, sick. TSM and I made the trip to get her and then he took her straight to the ER where she was diagnosed and quarantined. She was a very sick little girl for a very long time. Ever since then she has struggled with staying well. She gets the “flu” every 4-6 weeks, has chronic headaches and is endlessly exhausted. We brushed it off for a long time as a result of the mono. We were told it takes up to 12 months to get back on track. Then we thought it was allergies or maybe from the hormone changes that take place when one enters the teen years. We had taken her to the doctor a few times to get looked at, but each time were told it’s nothing.
Last year she started to miss a bit more of school and she was getting very annoyed at feeling like crud all the time, so we took her back to the doctor. This time we said, look more closely, something isn’t right. They looked a little harder, but ended up saying, these symptoms are very common with girls this age. After a few months and no improvement we returned and pushed harder. Eventually her doctors agreed to run some blood work, but when all came back perfect they patted us on the head and gave us the boot. The test results were good news and she did seem to be “healthy” except she wasn’t feeling any better.
Each doctor we saw had very little interest in looking beyond the obvious and most thought she was just trying to get out of school.
For the record, she is a straight A, Honor Roll, National Honor Society kid. She is involved in all kinds of after school activities, she doesn’t complain or seek attention and there is zero reason to think she is the kind of person to fake an illness. Plus, you can see she is sick. Her eyes get very glossy, she has a cough and it’s the kind where you can hear stuff in her chest. Often she runs a fever. She sounds nasal and she feels so awful it keeps her from doing things she wants to do like sleepovers or trips with friends.
It’s frustrating, but we have been down this doctors don’t seem to get it road before.
About 2 1/2 years ago my husband was suffering from headaches and all kinds of stomach problems plus he was having seizures. The doctors were only slightly more interested in his problems, but ended up saying we don’t know, good luck with that.
Through a friend and a crap load of research on my part we narrowed down what we thought he could have. I ordered some tests, he took them and we sent them into a lab. The results were he had Celiac. Basically, no gluten. We cut that out and it’s been about 2 years since he has had a seizure and his headaches and tummy issues are totally gone. Easy fix.
It did occur to me that M might also have this problem, but she didn’t have any tummy issues until very recently.
Lately she has been getting worse and worse, so I have been researching like mad and I discovered that often times kids with gluten issues do not have the same gastro issues. Theirs often is in the form of just headaches and fatigue. I have been trying to watch her to see if I can notice any clear connections between what she eats and her symptoms, but she is busy and doesn’t always eat around me. It has been a challenge. The only thing we have been able to pin point is milk. Milk seems to give her a headache and serious bloating, but with her dad’s issues, gluten has to be in the running as a problem.
I thought, ok, we have more info lets go see a doctor (we have a group of doctors in this clinic and we can be assigned any one of them. Some I have met, some I haven’t. This one I hadn’t) and discuss it. Bad, bad, plan.
First off we were put in a room the size of a shoe box with the door closed and a sick doctor. This guy spent the entire time coughing and only covered his mouth about once every six hacks. Most of the time he would just talk and hack and not bother to move his hands from his lap. Well, at least not while coughing. He did move his hands a few times to retrieve eye boogers. Unfortunately, he also moved his hands to roll the boogers in between his thumb and index finger. Both M and I almost threw up.
After a long visit he suggested more sleep, more exercise, and more fresh fruits. Cutting edge stuff there Doc.
So, as with my hubby, I will try to figure this out myself. We are going to start with a totally gluten free, dairy free diet and go from there.
As you can imagine my highly social teenager is super excited about not being able to eat pizza and ice cream with her friends. Giving up dairy alone would be enough to piss me off, but to be 14 and have to deal with team dinners, packing lunches, sleepovers…royal suck. In an effort to help make life less sucky, I am going to spend the weekend experimenting with different recipes with fingers crossed that I can make her some yummy convenient foods.
I found a website called Elana’s Pantry that looks like a great resource. Tomorrow morning we will be having these…
I went to the store and bought all kinds of ingredients I have never heard of at 3x the price of anything I have ever bought in hopes that the foods from here will be tasty treats.