We received more test results yesterday. Sigh. Dr. OldNeuro called out of the blue to say that the erythrocyte protoporphyrin that he ran a month ago came back high. He said that the top of the normal range is 70 and her levels were at 107. This either means she has lead poisoning, or extremely low iron levels. He also said her lactate levels were slightly elevated. He wants us to go in Monday for more specific tests, and a test to rule out Rett Syndrome.
I called the pediatrician to ask her about these things. She said that they got these results a few weeks ago and she called to discuss it with him and he said "Oh, Dr. H, you worry too much." and blew her off. She didn't know why he had run the test in the first place, so she didn't know what the follow up needed to be. She called and discussed it with Dr. NewNeuro and he didn't know how to follow up either because he didn't know the reason for the test. So Dr. H is going to talk to Dr. NewNeuro over the weekend and determine the best course of action; and she's going to write Dr. OldNeuro a nice letter thanking him for his time and letting him know he's off the case. She said either way it won't hurt to have her lead/iron levels checked.
So we got more news that means nothing to us...everything is nonspecific.
We now have:
An abnormal EEG
An abnormal CT, that was later decided to be within normal range
An abnormal MRI
Abnormal erythrocyte protoporphyrin blood test
Slightly elevated blood lactate levels
Put it all together and what do you have? Nothing useful, evidently.
We seem to be stuck in an endless cycle of testing. I thought KayTar would have a break from the needle poking next week, but it doesn't seem to be the case. I wish we could get one clear cut result. Every time we get a piece of information, it just makes a more confusing mess. It adds a possibility, instead of narrowing things down. I hope we get somewhere with this next round of testing.