Wednesday, May 6, 2009

Son's LLMD appointment

Well, I called last Friday, May 1 and was able to make an appointment (they had a cancellation) for Monday May 4. We drove 9 hours on Sunday and stayed in a hotel for the appointment the next day. Chicago traffic was a little rough, but not too bad for a big city. Not nearly as bad as we anticipated.

The hotel was fun, they had water slides, a sauna, hot tube, a nice wading pool for the kids with fun stuff, fitness center, nice breakfast. All for $71.99 plus tax!

Wisconsin was nice. We'd never been there. Lots of beautiful lakes.

Monday morning we were trying to hurry through breakfast, I did NOT want to be late. We met another family from Ohio as they saw James' Ohio State hat and came over to see if we were really from Ohio, or just Buckeye fans!

We made it there and there was a man standing in front of the receptionist's desk writing. I figured he was a patient and just stood 'in line'. he didn't move and the receptionist was talking on the phone seemingly ignoring him, so I sat down and waited.

Soon this 'patient' went behind the desk and made a few calls, then I realized he was the LLMD! How embarrassing! I guess I'm used to the white coat doc's, lol!

The doc was fantastic, we all liked him. There was something about him that makes you trust him and know that he is very intelligent and can actually help you. I can't really explain it.

I explained Elijah's symptoms including his complaint of heart pain. He looked at the Igenex results and said that with that 39 band present and the others that he definitely has Lyme. But he also said that Elijah may get well very quickly because he is a kid and his immune system is better than an adult's.

So that was the GREAT news!!

Then he examined Elijah, asked him where his heart hurt. Elijah pointed to his left side near the sternal area. The doctor listened to him for a while and checked his pulse, then he listened again, asking him to hold his breath at one point, then checked his pulse and finally listened yet again.

He told us to get him to a Pediatric cardiologist as soon as we can. He said that not everything is from Lyme. He said that Lyme can surely affect the heart, but his pain and fatigue may not be due to Lyme.

I could have cried, both from fear and from joy. I have thought for many years now that he may have a heart defect. The pediatricians always told me that he sounded 'fine' after listening for all of 10 seconds. yet when I listened to him, he just doesn't sound 'right'. Even our 2 year old has a better sounding heart than him, both of our girls sound the same.

Plus I knew how he didn't breathe well at birth. He had poor to no tone. Did not move, did not breathe, color was poor. He seemed to be dead. He needed to have O2 at birth and he is the only one of the kids who did not nurse for awhile after birth, maybe an hour or more??

He's complained of chest pain since he was 5 or 6 (can't remember). He actually just says that his heart hurts. And the pedi said he was fine.

I could kick myself for not demanding that someone do SOMETHING. But I listened to the doc instead of my intuition.

We have an appointment on May 18 to see a Pediatric Cardiologist. Hopefully sooner if they get a cancellation.

I am in the process of trying to get him out of school and into homeschooling, that way if he has another episode (sometimes gets tachycardia seems like), we will just take him to the ER. We all want to know if he is OK.


So while this was totally unexpected...I guess I am very thankful for this intelligent LLMD's ability to pick up on it.

So, this is where it stands right now. Will update if anything else happens.

2 comments:

  1. praying for you and your family!!!
    we are learning the pain and frustration of living with lyme here in our home....
    Will be praying for resolution to this heart issue ... perhaps there WILL be a cancelation :)
    blessings to you and yours

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  2. I cannot find the LLMD's name anywhere in your writing; did you list it and I am not seeing it? My son has Lymes and we are desperate to find a doctor who understands Lymes Disease in Ohio... thanks, Chris

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