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Question for those who did IVIG clinical trial


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For those who were in the trial, quick question. Did they sedate or anaesthetise your child for the LP? If not, did your child co-operate? Reason I ask is local peds neuro wants to do LP at some point to check for cerebral folate def. but says need anaesthesia. Tx.

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  • 3 weeks later...

My DS has huge fear of needles, but the blood draw was worse than the LP for him. The NIH had the whole team (5) people in there for the LP. They are professional with these kids! They numbed the area, but no anesthesia. They let him continue his game on the xbox and that seemed to keep him occupied enough to do the proceedure. Of course I couldn't be in the room while they did it so I have to take their word on it. :-) I am in agreement though that it seems a little much for a folate level... I was just reading on hair testing for tissue mineral/nutrients though I don't know much about it yet.

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I was just reading on hair testing for tissue mineral/nutrients though I don't know much about it yet.

Hair test at Doctor's Data, Inc. in Illinois is very interesting on these types of tests. 'Potentially Toxic Elements' on top of page and "Essential and Other Elements" on bottom. Copper on bottom.

 

My son's toxic levels went up on 2nd test which scared me until our dr. said the test was showing that he was getting rid of toxins (more in hair). Seems as though insurance covered this too. Second test also showed more vitamins in hair which meant absorption in stomach was doing better too.

Edited by JuliaFaith
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My DS has huge fear of needles, but the blood draw was worse than the LP for him. The NIH had the whole team (5) people in there for the LP. They are professional with these kids! They numbed the area, but no anesthesia. They let him continue his game on the xbox and that seemed to keep him occupied enough to do the proceedure. Of course I couldn't be in the room while they did it so I have to take their word on it. :-) I am in agreement though that it seems a little much for a folate level... I was just reading on hair testing for tissue mineral/nutrients though I don't know much about it yet.

Thanks so much. I do think the neuro would be checking for other things along with the folate levels, as my ds has a hx of dev. delay.

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