Wednesday, January 22, 2014

Hoping for Herpes

The moment when you know something is going to be bad so you hope for the lesser of two evils. That is where we are now. Herpes.

My daughter K, is 12. This poor girl has been through some stuff. Mono,constant strep and sinus infections. Delays. Sensory issues. She hates change. She hates people. Eczema. Food allergies/intolerance. Joint pain. But it all changed around 6. It was like her little body went to rehab and got it's crap together. Almost.

She has been getting these sores in her mouth. She is a preteen girl. Complaining is as natural as breathing. Without thought, and constant.  I love the kid, but wow. 

When her sores caused her enough grief that she stopped eating, I took her to the doctor. Lucky for us we got the NP, the very one who told me not just 3 months before that my son's episodes were normal (turns out seizures are normal because he has epilepsy). There have been a few other times that she blew something off and it actually turned out to be something.

Anyway, K went in and the lady said she had herpes. Granted they were all inside her mouth and nobody else had any, but whatever. We went on to explain she had had these sores for years straight. 

She didn't believe it.

She told K to make a journal and if she had a sore everyday for the next month then she would call infectious disease.

She did the diary. Multiple sores. Everyday.

I called the NP. She didn't even remember what she said. I refreshed her memory and she gave us the number for infectious disease.

Months later, we got an appointment. We see the ID doc, on our own dime because our insurance sucks.

Surprise.  Probably not herpes. She sends K for bloodwork. 

It's probably autoimmune. 

I am just sick over this. I hate it. I was reading this diary/log of my daughter's and she has pain everyday. Everyday.

I feel like a Grade A jerk. I was so used to her complaining, I never really heard her. I took her to a rheumatologist when she was young, she got diagnosed with something- which they do nothing for and I don't even remember the name they gave for it, it's in paperwork somewhere.

Hopefully whatever it is has not been wrecking havoc on the inside of her body for the past 8 years.  I heard so many ailments for so long that I just stopped listening, and I shouldn't have. This girl, my sweet little girl, has been walking around in pain and has had nobody to help her. I feel absolutely terrible for it, for her. I thought I had all the answers I needed to form an opinion of hypochondria. Maybe I didn't.

Beyond that, what makes me mad also is that if the NP would have looked in her chart for 30 seconds she would have seen that she had other issues. She would have seen that at 4 she had bloodwork that was off. She would have pointed us in the right direction months ago. 

We visited the rheumatologist. They swabbed her sore and sent her for probably another several grand worth of bloodwork. 

We were informed that another lab was slightly elevated, too. One that I don't want to talk about. It's an ugly word and an ugly disease and she doesn't have it. She just can't.

So we wait for results believing some intern in the lab had to have spilled the blood and was just winging it with the numbers. The technician may be dyslexic. Maybe foreign and reads from right to left. I'm hoping for herpes.....


  1. Wow that sounds rough! Hope yall get the answers soon and your girl gets to feeling better!

  2. Hang in there mama! You can't blame yourself. You will, I know, as would I. But we do the best we can. If we ran to the doctor at every complaint we'd have to sell our houses and move into the office. K will be ok. You are a good mom, a Great mom, and you guys will get answers and put one foot in front of the other and plow through! Hugs <3

  3. No matter what it is, no matter what she needs, the worst thing that could happen to her would be if she ended up with a mom who lost confidence in herself.

    You did your best. We all do. Sometimes we look back and see what we wish we had done, but we can't live there, not if we want to do our best in the future.

    You're down, I get that. Pull yourself back up, Whatever it is, she's not getting through it without you at the top of your game.

    You are exactly who your kids need you to be. Always. Don't lose sight of that.

  4. Oh Ashley. I just keep checking back for the miracle post. My thoughts and prayers are with you and K. I just cannot imagine how terrifying and disheartening this all must be for your family! Hugs... BIG ONES.

  5. Thoughts and prayers with you both. You know, we parents have to make snap decisions so many times a day. The decisions that are most important? The next ones. Always. Because we use that experience we gained with other ones to make them.

  6. Aw, I love you girl. People who work with children should have their shit and compassion together. That's appalling.
    I hope the rheumatologist finds the answers that you need. Autoimmune disorders are hard to pinpoint. Hopefully your girl will find some healing soon.
    Oh, and, you are an amazing mother. Don't doubt that for one second.

  7. My daughter was the same way at that age. Complained about every little aches or pains. But she fell off a swing and complained her wrist hurt for a week. I told her it was just sore. Finally took her to Dr. It was broken. I cried for letting her suffer for a week. Told her I was sorry. She forgave me. We do best we can as parents. Shes 29 now and still loves me for all the mistakes I made!!!!