My Heart….


My Heart….

When you or I get sick with strep or flu, we feel a fever, maybe a scratchy throat, and just achy. But when a child with PANDAS/PANS gets something they will tell you their brain is doing stuff that you and I know the child should never experience nor be able to explain (and have understood) clearly.

Last night, my child let me know that her brain was acting funny again. She's already had strep 6 times since March. (NO! please say this isn't happening again!) I can't catch it from her, but I couldn't refuse her sleeping in my bed last night being afraid of what her brain was doing.  My heart....

Today, starting at 8:30 a.m. I started working on getting her an antibiotic that they (medical community) wanted her on over a month ago.  Two different doctors tried to write the medication. The insurance company will not approve the prescription as it is not a medication that they allow yet is the one my daughter is allergic too. Last week I found a compound pharmacy that would make the medication without the chemicals and dyes she's allergic to and called the initial doctor to get the prescription re-issued asking them to call me upon it's being called in. (This doctor has stage III stomach cancer.)

Since 8:30 a.m. I found out the prescription had been called in last week and I had no clue. Insurance might not cover the medication because it's a compound. As of 6 p.m. the prescription still isn't filled as there's a pricing issue (if I pay out of pocket) and there's a delivery issue at their end. No doctors have called me back to give me any kind of support.

So after a month, no meds, no calls from doctors and my daughter's symptoms have become worse with her brain doing things it shouldn't be doing. My heart....

The RoaringMouse

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Roaring Mouse, I can only imagine the frustration and futility of getting jerked around by the system when your child is sick and needs a specific medication. I am going to pray that all the barriers will be lifted and that this situation will resolve perfectly. God bless you!