When something is chronically wrong with someone you love, it's hard to keep everyone updated. I get tired of talking about it and I inevitably forget to say things. So in an effort to update everyone, here is our story...
Background:
My Hannah has been in pain since 4th grade. In the beginning, the pain came about when she would eat things. But it was very inconsistent. It wasn't like a certain food hurt her every time she ate it. The pain continued through middle school although I was not very aware of it. Hannah would just "suck it up" and did not really tell me about it. When she did, I did not put much thought into it because it was so sporadic. Then in 9th grade, it got much worse. Rarely did the pain go away altogether. Now, in 10th grade, it has begun to affect her quality of life. She recently has had to come home from school early because she couldn't last the day. Multiple times we thought about going to the emergency room. She is not even able to play lacrosse this season because she is in too much pain. While this was happening, she was diagnosed with OCD on her knee and had surgery (August 2015). Beginning high school in a wheelchair is always exciting. This is where we began our adventure of trying to find the cause of what I consider to be a medical mystery.
Currently:
After so many procedures, surgeries, and tests, we are still at a loss about what is causing so much pain for her. Here’s the recap...
Children’s GI doctor - samples, tests, etc out the wazoo (literally for some!) resulted in a lot of no answers. We had 40 panels of testing run on her. Some of those panels were actually for multiple tests. One of said panels had 20 specific tests. Adding it all up, I believe more than 100 things were ruled out. Including some very big possibilities (Cancer, Chron's Disease, Celiac, etc). To top it off, one of those tests was a surgical procedure and another test took her 4 hours to do! Bleh! Result: The doctor said the next step should be gynecological workup.
Went back to pediatrician. I gave her a 3-4 week diary of Hannah's life. What she ate, when she went to the bathroom, her pain level, etc. The result: she agreed with GI doctor about seeing a gynecologist.
Gynecologist - the first one we saw I did not care for at all. The second one we both liked a lot and she decided to put her on birth control patch. No bueno for her so we changed her to a pill. The doctor wanted to see if controlling her hormones could help curve the pain. That did not happen. In fact, perhaps by coincidence, the pain got worse. So at my urging, we scheduled a laparoscopy. This surgery was to rule out endometriosis, which it did. The inside of her tummy looks gorgeous. I even have pictures of her liver, ovaries, uterus, and appendix. It’s so cool and I’ll show anyone who wants to see. And even those who don’t! So, since she is cleared from a gynecological standpoint, my next step was…
Allergy specialist - The GI doctor did a basic food allergy testing via blood testing, but I wanted more in depth testing by an allergist. This consisted of poking the various possible allergens into her beautiful back. Then arms.
She was tested for 71 specific things, food as well as breathed allergens. Not surprising, she allergic to different grasses/weeds/molds/etc. The doctor said she’s a candidate for allergy shots. I told Hannah she can stay stuffy and deal with those until she’s an adult and decides to do that for herself. We’ve got more pressing things to manage.
Three food allergens popped: Brazil nut, Hazel nut, and peanut. The problem is she was tested for peanut with a blood test and the result: <.1 k/UL. which is Class 0 (that translates to no allergy). The brazil nut I couldn't care less about. The hazelnut was a blood test of <.1 k/UL (Class 0) as well. So, while the allergist says she has an allergy bc of the topical test, the blood disagrees. And the topical pop for those were not big ones. Especially compared to the mold/grass/tree testing which was a very large reaction. The allergist said he thought the peanut allergy was a long shot for being the source of her stomach pain. Usually that allergy results in mouth numbness/tingling and breathing issues. So, he said we could do an elimination diet for peanuts and see if that helps, but he doesn't hold out much hope for that.
The next appointment is with the orthopedic doctor on Monday. We are seeing him because Hannah also has back and pelvis pain. I believe that this is related to the stomach pain as a side issue, but since we have wonderful insurance, it's only time and a small copay to rule out other things. We happen to be seeing Dr. Pendleton who is the one that took care of Hannah's knee and her OCD surgery. Honestly, I don't expect anything crazy from this appointment. As with all the others, I feel it's a ruling out of sorts.
Hannah is also experiencing nerve pain. We have an appointment with a rheumatologist in April which we set in January. The scheduling nurse was surprised that we could get an appointment "so soon". Yikes!
So, what are we doing in the meantime...
When we went to the allergist, I was actually expecting a pop to the corn allergy because of research I had done. Well, that was negative. Afterwards, in more research, I found out that a true allergy to corn is very rare. What a large number of people in the world experience is an intolerance to corn. Obviously, corn is intolerable to all people as your body can't break it down, but what I'm talking about it a massive intolerance.
There are several symptoms and Hannah has, or has had, most of them:
*hives/skin rash (she had a small amount eczema a few years back)
*nausea/stomach cramps/indigestion/vomiting/diarrhea (the primary stomach pain she has had for 7 years)
*stuffy/runny nose (she has always had a deep congestion that we looked into back in 4th/5th grade around the time the stomach pain began. Had a CT scan of her head and it did not show anything. Her sinus swelling is so great it surprised even the ENT we were seeing)
*sneezing (eh. She sneezes but I don't know if it's excessive or not)
*headaches (those are sporadic but present)
*asthma (she has this when she gets sick. Also has been hospitalized for pneumonia. Twice I believe)
*anaphylaxis (less common and she doesn't have that)
*aching muscles and joint pain (her back and pelvis have hurt for a long time. Her knee surgery: the MRI says it's healing but it still hurts very badly. Also, her precious feet are swollen much of the time)
So, what she and I decided to do is take her off of corn for about 3 weeks. That is the time frame that we should supposedly see results. Now, on first glance, one might think this would be fairly simple. No corn on the cob, corn tortilla, corn starch, and corn syrup. However, this is much, much, harder than that. See, corn and it's derivatives are in everything. EVERYTHING. And the manufacturers are not required by law to state on a package if their product has corn in the ingredients like the mandatory listing of wheat and dairy. For example, bagels may have a dusting of corn meal on the top but the packaging does not state that. So you may think, ok, read labels and look for dusting. But it goes much deeper than that. Corn is in...
*citric acid - there is not a jelly on the shelves that does not have this ingredient
*distilled white vinegar - the marinade I made (from scratch) for chicken last night had hot sauce in it which has distilled white vinegar. And dinner hurt her stomach.
*Ascorbic Acid (Vitamin C)
*Caramel color - used as brown sugar for a sweetener in some products
*Dextrose - find something that is sweet that doesn't use that!
*honey - if the bees were fed food with corn in it (ex: HFCS), then the honey will have corn in it
*Maltodextrin - found everywhere but bet you didn't think it's in frozen yogurt
*can be in medicine
*can be in gum
There are so many more things. If you'd like a longer list, you can look at my Pinterest board (https://www.pinterest.com/kikarules/corn-only-good-for-cornhole/) for some links.
So, this is where we stand as of today. I will do my best to update more as this progresses. I am hopeful the next few weeks will give us some answers. But as always, I half expect the answer we will be given is 'not this'.
We'd appreciate any and all prayers for wisdom and perseverance. My girl deserves to turn 16 and not be in chronic pain!
