Bittersweet Chocolate

Have you ever had bittersweet chocolate by itself? It has this satisfying sweetness to it at first, but if you're used to milk chocolates, then you might be put off by the bitter aftertaste that follows. Personally I don't think it's terrible, but it's not something I would seek out. I prefer actual dark chocolate myself. No, this is not a blog about chocolate, lol. This blog is actually about using the term "bittersweet" to describe something that is both good and bad.

We've been battling health problems with my youngest daughter since she was 1 (she is now almost 5). When she was 1 she developed Mastoiditis (and infection of the Mastoid bone) and had to have 2 surgeries to fix it and put tubes in her ears.  Before that she was sick with throat and ear infections for 2 months, that just would not go away, no matter what antibiotics they put her on. The surgeries and the Mastoiditis landed her in the hospital for 5 days. Those were some of the longest days of my life. I barely slept. About 2 months after that she got pneumonia. That was really scary. I've never seen a child turn gray before. I was so scared of losing her. It just seemed like no matter what we did, she just kept getting sick.

So I quit my job and became a stay-at-home-mom. Once she was out of daycare, things seemed to get a little better. The infections cleared up and the doctors seemed to think she just had severe allergies and maybe asthma. At around 2 years old she began to have trouble sleeping. It started with her naps. It became a daily fight to get her to take them. Some people told me, maybe she was ready to stop naps, but she was just so cranky whenever she didn't take them. Then she started having trouble falling asleep at night. Some nights it would be a 2-3 hour fight to get her to go to sleep, a real problem for her sister since they share a room. We brought it up to her ear, nose and throat doctor, but again he insisted that she had severe allergies. Unfortunately they would not let us allergy test her until she was 3.

Just after she turned 3, we took her in for allergy testing. Turns out she doesn't have ANY allergies! Not even "seasonal" ones. We took this info back to the doctor, but again he insisted it must be allergies. After that, I started taking her to a "family medicine" doctor. Her sleeping had become worse (now she was waking up 2-3 times a night, along with having trouble falling asleep and napping) and she was now complaining of headaches and stomach pain. She was also starting to run low grade fevers often, with no symptoms of being "sick".

We were immediately referred to a Neurologist. She had lots of blood work, and MRI and an EEG. All normal. So we tried treating her for migraines. But after about 3 months of it not working, it was becoming clear it was migraines. So then we were referred to a Rheumatologist, which was a 2 month wait. During that time her fevers got worse, she passed 2 kidney stones and had developed sun sensitivity. She was easily fatigued, but still not sleeping and she began to not want to eat some foods that used to be her favorites. She had also gotten Chicken Pox twice in 1 year (even after having the vaccine) and any cold she got spiked her fever up to 101-102. We began to find ourselves confined to our home because taking her out was just too hard. I asked the Neurologist about the possibility of her having Fibromyalgia and he assured me she was too young.

Finally we saw the Rheumatologist. What a waste of time! We went over everything with her. All the symptoms, our concerns and again I brought up Fibromyalgia (my sister was diagnosed with it as a teenager, so it runs in the family). She barely looked her over and told us no it was Fibromyalgia and that at this time she wasn't "sick enough". She told us to go home and wait until she got worse. I was heartbroken. I was watching my daughter suffer and there was nothing we could do to help. She sometimes so pale and she had developed terrible dark circles under eyes that would not go away.

So we stopped seeing doctors for awhile. A couple of months later the fevers seemed to stop, but she still had all the other symptoms. Then in January, the fevers and headaches started again. This time worse. She was in pain and running fevers everyday. Her fevers were now between 100-101.8 (instead of ranging from 99.5-100). Her insomnia was much worse. None of us were getting much sleep. By May I had her insurance switched and figured out and found her a new doctor, this time a Pediatrician. She immediately could see something was just not right. She ran blood work and a urinalysis. The only thing that came back with anything abnormal was that there were blood cells in her urine. Mickey was then sent out for an abdominal ultrasound, which came back normal (but the tech was so sweet and gave Mickey an ultrasound picture of one of her kidneys, which she just loved lol). Next was a bone scan. Those are not pleasant for someone so young. She hated the IV and meds they gave her and then she had to be put under anethesia for the test (same thing for the MRI less than a year before). Again, everything normal.

Next was a referral to Infectious Disease and an ANA blood test. Finally something came back abnormal, her ANA was elevated. Infectious Disease re-ran the ANA less than a month later and it doubled! They thoroughly examined her and carefully went over all her symptoms. Then the bad news.... She had to be sent back to the department that had dismissed us almost a year ago, Rheumatology. This time they suspected Lupus. We were very scared for our daughter. We just wanted answers, a way to help her.

But once again Rheumatology was not much help. They dismissed her again and it wasn't until I had a sobbing breakdown in the doctors office, that she realized just how much this was affecting all of us. At this point, she finally admits that her headaches, insomnia, pain and stomach problems along with a weakened immune response (although her test showed her immune system to be normal) did indicate that we were most likely dealing with Fibromyalgia. I have to admit it took every ounce of strength I had left to keep me from ripping into her! Just a year ago we were told it was all but impossible, now all of sudden it was "oh well, it could be".

Not one to give up, her Pediatrician decided to run more test, just to be sure we weren't missing anything. She checked for Celiac's and tested her vitamin D levels. Celiac's was negative, but her vitamin D was low, so we were referred to Gastroenterology and recommended to put her on a gluten free diet to see if it helped her symptoms. We also decided to put our oldest on the diet as well to treat her possible ADHD (the difference has been incredible!) and cut our gluten to almost none as well. Gastro also recommended the GF diet, since that is now a common way to help manage Fibro and put her on a daily mild laxative to help her digestive track work better and hopefully help her absorption rate.

The difference was amazing! Her headaches and fevers became less often (and her fevers more mild except when she was actually sick). Her attitude became better and her fatigue lessened considerably. It didn't help her insomnia, but we now give her melatonin for that. After 2 months, we went back for a follow up. She still needs the laxative, her digestive track just doesn't work right on it's own at this time, but they confirmed that they too believe she has Fibromyalgia.

So now the "bittersweet" explanation-
Sweet: We now know whats wrong and we are learning new ways to help manage her condition.
Bitter: Had the doctors listened to me in the first place, we could have started to treat her 1-2 years ago and she wouldn't have had to suffer.
Sweet: Fibromyalgia is manageable and the disease itself does not cause physical damage.
Bitter: It is a life long disease (I know that it's commonly called a "syndrome or disorder", but it causes dis-ease in the body and therefore that is how I refer to it). Mickey's is also complicated by a very severe Gluten Intolerance, so she will need to be on a GF diet for the rest of her life. There is no set treatment for Fibro, especially in her age. We have chosen a natural course of treatment. Mickey currently takes 16 pills a day of vitamins and suppliments, plus her mild daily laxative (which is a softener not a stimulant, so it's safe for her to take as long as she needs, even forever). Though the disease itself does not cause physical damage, the effects of the symptoms can. Her immune system is weaker than most children her age and her intolerance to gluten is so sensitive that one meal with gluten in it will give her a temp of over 101 for 3 days. The insomnia makes it harder to recover from even a mild cold. Also any infection (viral or bacterial) sets her into a flare up of Fibro symptoms (worse insomnia, high fever, headaches, stomach pain, Chronic Fatigue Syndrome- CFS and chronic all over pain or discomfort).

Another bittersweet thing for us is that thankfully Mickey will never be alone in this. Because my sister also suffers from Fibromyalgia (and was diagnosed as a juvenile), she can completely understand how Mickey feels. Mickey will always have someone to turn to and talk to about what she is going through. Fibromyalgia is one of the most misunderstoond diseases out there, but Mickey will always have love and support (from all her friends and family). It will be tough at times, especially right now since she still doesn't understand why sometimes she just doesn't feel good or gets tired very easily when they other kids don't. Thankfully I am able to stay home and homeschool her, so that she doesn't have to deal with this in a public school. We work through it one day at time, thankful that it's not something worse and thankful that we are able to help her manage this. It's not easy to watch a 4 year old suffer, but she is a lot better than she was 1-2 years ago and we will continue to research and try to find ways to help her even more.

So that is my bittersweet story of my little Mickey. Her story continues on and we will continue to help her and raise awareness about Fibromyalgia. There is one last thing I leave you with, something we run into often. There is nothing that irritates me more than hearing "She doesn't look sick". My daughter pushes through everyday with more strength and determination than some adults. She may not "look sick", but she suffers more than most will ever know. Some days she is happy and bouncy, others, she can't even get off the couch. Please don't judge an illness by how someone looks. Fibromylagia is often called the "silent pain" because often you cannot "see" just how bad the symptoms are, but know that they are there and they are very serious. In the end, keep an open mind and an accepting heart.