Look into my eyes

[pixiesmommy]

I was at the LLMD a few days ago (more about that later) and was explaining my reasons for being there. Once I got to the "we must have a strep carrier in our family" part, he grabbed a flashlight and shut off the lights and dilated my pupils with the flashlight. He said it was not the MOST scientific way to do it, but since I was driving and he couldn't dilate me with drops, it would have to do.

 

Apparently, according to him, you can see strep behind the eyes as well if it is active. Just a thought for those who can't find it elsewhere!!

[P_Mom]

Interesting, but, I am confused. How do you dilate pupils with a flashlight? Wouldn't shining a flashlight in your eyes make your pupils constrict??

 

How is Pixie doing? Are you seeing set backs since IVIG? This is info. I really need to know about kids who have gotten IVIG. I have been on the fence about it for YEARS! Still am...any thoughts, suggestions, experiences are extremely helpful.

 

THANKS! Hope you are doing well!

[pixiesmommy]

Pfft!! Yes, it makes them constrict. Sorry, I use the word for both and I know that is wrong, so that was just an oversight/typo/misuse of the language on my part. He said he could better tell if they were dilated, but he constricted them with the flashlight.

 

IVIG: We did the 2 day hdIVIG with Dr K last Sept. If you remember, our biggest symptoms at that point were violence/aggression and huge muscle motor tics (shoulder shrug/head toss/writhing and posturing.) Those big things are gone. The violence took about 6 weeks or so to dissipate (after getting initially worse) and the tics went away in a matter of days.

 

We are now left with some residual symptoms, like: repeating words/phrases sometimes in a monotone voice, zoning out (no seizures), fixation/OCD- minor, extreme fatigue, occasional debilitating leg pain (with strep), short attention span, and extremely low frustration threshold. Handwriting issues are still apparent and change within seconds sometimes.

[P_Mom]

So, I guess really the IVIG makes a good improvement in MOST kids, but, no means a cure?.

 

So, did the LLMD say you have an active strep infection...or a carrier state???

 

What was he looking for in the eyes?

[pixiesmommy]

He could not tell, but sounded like he would dilate us all in the future to look. He also did a culture for me without my even asking.

 

I don't think I am ready to pass judgment on whether IVIG works or doesn't work. I feel that it gave us a pretty good remission for at least a year, but isn't a "cure" by any means. We also made a lot of changes around the 6 week mark of healing from IVIG with our diets and NRT. I think that doing everything you can to remove toxins from your child's environment is a good thing and facilitates health immensely with PANDAS kids (as well as Autistic kids, etc.) My theory, at this point, is that we needed the IVIG to kick-start the healing, but that we have been responsible for the maintenance with other things.

[Fixit]

  On 10/4/2010 at 10:51 PM, pixiesmommy said:

He could not tell, but sounded like he would dilate us all in the future to look. He also did a culture for me without my even asking.

 

I don't think I am ready to pass judgment on whether IVIG works or doesn't work. I feel that it gave us a pretty good remission for at least a year, but isn't a "cure" by any means. We also made a lot of changes around the 6 week mark of healing from IVIG with our diets and NRT. I think that doing everything you can to remove toxins from your child's environment is a good thing and facilitates health immensely with PANDAS kids (as well as Autistic kids, etc.) My theory, at this point, is that we needed the IVIG to kick-start the healing, but that we have been responsible for the maintenance with other things.

 

Do you think you need another?

[pixiesmommy]

We won't seek out another high dose IVIG unless she becomes so severe again that it is unlivable.

 

We are currently investigating Lyme.