I took my son to his allergist yesterday with the idea that I was actually going to get some help and left with such a white-hot rage burning in me that I wanted to do something violent - break dishes, beat the tar out of something - you get the idea. I've only been that mad a handful of times. Well, to better understand my level of rage, you'd have to know the ins & outs of our family life. With a brief trip down memory lane, I can fill in some details.
My son has had "diet" issues since he was born. When I was nursing him, I had to modify my diet even more than I did during pregnancy. I modified my diet because he had digestive issues all the time with horrible rashes. A bloated belly that you could bounce quarters off. Trouble settling for sleep. And the old medical favorite of Colic, because his distress couldn't be determined. By 3 months old, he had eczema and his first illness. I slowly figured out some of the foods that were irritating his body by charting every thing I ingested & logged his symptoms, watched for patterns and started eliminating culprits from my diet. His symptoms would wax & wane. When symptoms were brought up at doctors appointments, they were not really heard or were dismissed because he was doing fine on the growth chart.
Now, he is almost 4 years old. We've been to countless doctors (specialists), run tests and the results are inconclusive at best. Most of the "issues" discovered have been by me observing, charting and researching, talking to anyone that humors me and running my ideas by anybody that will listen. A few answers came from piecing together all the observations and research with someone's random comment or suggestion. Being in this day in and day out makes it hard to step back and look at the picture as a whole. It's really easy to obsess and get bogged down in details. And there are so many variables to consider. There is no straight forward.
Yesterday's visit to the allergist was in need of help with implementing a rotation diet. He's had rashes that will not go away for more than a few days time. We've been medicating the rashes now for over a year and trying to uncover the causes. Some causes have been found, but not enough. The thought of doing the rotation diet is to better find the connective pattern between cause and effect.
I discussed this with the allergist's nurse over the phone and was told the best thing to do would be to come in for a visit. Well, I'm leery of that pat response. It has not served well in the past and ends up being unmerited. I gently pushed the need for a visit and was assured it would be worthwhile. She even asked me to fax over his current diet and the rotation I created for the doctor to review prior to the appointment.
When I called back 2 days later to confirm they received the fax, I was again assured that the information would be reviewed and discussed at the appointment. Well that was not the case at all. He wouldn't have even broached the topic if I hadn't pulled my copy out. He preceded to show me 2 links on his blog website about things I am already well aware of and was done.
I was so stunned at the lack of assistance that my brain froze. I managed to get a few more questions out, grasping at straws for help, while trying to keep my son from disassembling the exam room out of boredom. The disappointment hit me as I waited to check out and began growing indigent at now having to pay for this appointment. I just couldn't leave without saying something to the office manager, who just happened to be the one checking us out. I calmly explained to her how disappointed I was at the appointment's lack of help, expense, time involved, loss of nap, etc... I have to add that I'm very proud of myself for keeping my cool and not causing a scene - new growth for me.
The rage continued to build as we got in the car and headed home. On the drive home I was thoroughly deflated & enraged, trying to remain calm in my son's presence, and simultaneously vent on the phone to my mother. Unbeknownst to my dear mother, the call further enraged me. I get my proactive nature from her, which is mostly a good thing. She automatically kicked into proactive gear and I just needed some time to vent or rage as it turned out.
I got home in a complete snit with an overtired toddler ready to burn off energy. I needed to cook dinner so he could get to bed early and instead I embraced his energy & my rage and we went for a walk. Armed with fresh air, love from some neighbors dogs and the joy of watching him ride his balance bike with feet in the air yelling, "Wheeee", I was finally calm enough to get his dinner on the table.
My husband was a rock for me last night - getting take out for our dinner & not mentioning that we couldn't afford it, jumping in with our son & telling me to go breath, and waiting until I was ready to talk recognizing that I needed time to be mad. Very perceptive on his part, which is not a strength for him normally. Tears came first and hard. When I calmed down to less than nuclear, he proposed a plan for us while we wait for the next doctor's appointment the end of October. This one's with a geneticist.
Our life is a constant balancing act. Holding high hopes that THIS doctor will unlock the mystery. On the flip side, scared that hope will evaporate as the appointment unfolds. And, waiting on pins & needles until the appointment 6 weeks away wondering what the days will bring. #foodallergies #coping #highlyallergicchild