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Has he been checked for migraine headaches? I personally have suffered with severe migraine headaches since I was 4 years old. They were pretty intense and I would vomit when I had them along with many other symptoms when I was a child. They varied with intensity and sometimes only lasted for 20mins other times 2days.


My DS12 does get headaches and usually he gets them in the car while driving and they last about 10mins. This has happened with flares and without. He does not vomit though. I spoke with his Pedi about it and said it could just be motion sickness in the car.

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I had them starting in 2005. They came on suddenly and were 24/7 for a long time. My doctor thought I had Lyme Disease, but I tested negative, so I didn't believe him. Other doctors did an MRI, allergy testing and celiac blood test - all negative. In the meantime, the headaches went from constant to frequent - so a little less debilitating. It took me about 1 1/2 years to finally figure out that I was gluten sensitive. Once I went off the gluten, the headaches stopped within 3 days. It had positive effects on my gut as well. About 2 years later, the headaches started again, and on a hunch I eliminated dairy from my diet. That did the trick.


So sorry he is having headaches. They are awful, and I can't imagine dealing with them as a child.

Edited by mama2alex
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you do not have to have lyme. but yes, most usually thought of as a coinfection.

nobody would have tested unless he had sweats or something bizarre OR they were an LLMD.

I read a medscape transcript about babesia and more oftenthan not it is NOT coinciding with CDC pos Lyme (whole 'nother discussion). Of course they were talking about the most common form of Babesia. My daughter had Babesia WA-1, a different type. She had sweats, fatigue, that kind of thing.

What a confusing answer. sorry. I probably just killed a few more brain cells.

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You can have babesia all by itself. There are multiple strains, so a test for one strain could miss it if you were positive for a different strain. You can get babesia from a tick but you can also get it from a blood transfusion -

from the CDC website:

In an article published in 2011 in the Annals of Internal Medicine, CDC and collaborators described 159 transfusion-associated Babesia microti cases that occurred during 1979–2009, most (77%) from 2000 to 2009. No Babesia test licensed by the Food and Drug Administration is available for screening prospective blood donors, who can feel fine despite being infected.



This is from whole blood. I don't know if you could get it from IVIG. (not trying to scare anyone - I just don't want to be falsely reassuring and say you can't nor do I want to be an alarmist and suggest you can - I honestly have no idea).


Babesia is not a bacteria (lyme and bartonella are). Babesia is a protozoa that lives in the red blood cells. Generally treated with an anti-malaria drug like mepron and an erythromycin abx. Some LLMDs use artemisinin.


If your DS did have babesia, it would be a good idea to check for lyme and bartonella with a lab like Igenex or Advanced Labs, even if you've done a lyme test with a lab like Quest in the past. But it is possible to have one without the other.


All this being said - don't freak. Your DS is no sicker today than yesterday. You just have a new lead to check out. Make sure you still get some sleep tonight.

Edited by LLM
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My kiddo has them infrequently and since she was maybe 9-12 months old as far as I can tell. She used to bang her head which I attributed to headaches after we got the Arnold Chiari Malformation 1 diagnosis and then she became verbal and complained of headaches. So far as I know, the headaches are related to her ACM so unlikely that is what you are dealing with.

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I thought about a Chiari, but Im sure they would have found that on a CAT scan or MRI...


Vickie, my son is no longer on antibiotics. When he gets a headache sometimes he covers his eyes and says his eyes hurt. It seems like a migraine. I am suspicious of these headaches because they started when he first got sick and never went away. We have had this problem before he ever had a drop of IVIG in his system.


Thanks for all of your advice. I'm on it.

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My 7 year old non-PANDAS son had nearly constant migraines. He was always holding his eye or forehead. Family doc diagnosed migraines and allergies, gave us tylenol and nose spray, and that did nothing. I pushed the issue and went on to discover he was a strep carrier, possibly had sinus issues(?), and he tested IgG positive for lyme. After several months of combo abx the headaches went away. He stayed on abx for 10 months, has now been off for 4 months and the headaches never came back.

Edited by momcap
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