Saturday, December 3, 2016

In Search Of Answers

By the looks of things we are on the brink of another steep learning curve. When I had Kiana at the doctor nearly three weeks ago and she was diagnosed with PANDAS, the doctor told me to bring her back if the medication doesn't take care of the problem. The first few days we saw her symptoms improve a little each day, then they plateaued and took a nose dive. We aren't back where we started, but almost. So yesterday I took Kiana back to the doctor and was told the medication is the only one for strep B and any remaining symptoms would have to be addressed via therapy. Ugh. From the little bit I have learned, I know therapy is not enough, she needs medical help but that can be hard to find. On Monday I have some phone calls to make thanks to helpful parents who have been walking this road for a long time and have experience.

   I was hoping Kiana's pediatrician would be willing to work with us because PANDAS is not always able to be diagnosed via lab work and the symptoms, severity and onset of the illness vary greatly. It comes down to finding a doctor who is willing to spend time figuring out what works for each patient and sometimes use unconventional treatment.

I despise "interviewing" doctors to find one who is willing to help us. We had to do the same thing with my endometriosis, B's RAD and both boy's FASD, among other things. For each of those issue's Dean and I had to do our own research and then find a doctor who was willing to listen to us uneducated people, who insist there are answers out there.

Quite frankly, I don't feel any more at ease sitting before a medical professional and telling him we need a second opinion because we aren't getting the answers we need, than I did the first time. A second opinion isn't so hard but when it comes to a third, fourth and fifth opinion, you can't help but begin to feel discouraged. The alternative, which is continuing on with your child's health and behavior deteriorating isn't an option, either. So what is there to do but keep searching?

   Calling doctors and insurance companies and alternating between begging for help and "being assertive," is not my cup of tea. But this, grovelling or whatever you call it, comes under the word: ADVOCATE. As parents we are called to advocate for our children so I will bury my dislike of questioning people with degree's and keep pursuing answers and help for my children.

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