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Two years ago today my son was admitted to an inpatient psychiatric unit due to a severe exacerbation following his first IVIG. Today we celebrated his 16th birthday and he was so happy - all week... just loving life, as a boy should be at age 16. It has been a long, twisted, and confusing struggle to dig out of the hole we were in, but a combination of regularly scheduled IVIG treatments, multiple antibiotics for bartonella, multiple supplements for energy and immune support, regular visits with a great psychologist, a school district that *Finally* seems to understand the chronic nature of this illness and will let him attend school part-time for a while, and (above all) a pediatrician who is open to new ideas and able to give my son emotional support have led to continued improvement in functioning. He has no more sinusitis, thanks to the IVIG, and sinusitis was his main PANS trigger, so his brain has had a rest from the PANS flare ups. Now to rid his body of the bartonellla that also took home while he was immune deficient. I am hoping we are at least half way there.

 

Anyway - hang in there folks. If you are in a dark place - please know there is light. Hold on tight and don't give up.

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Kimballot- how long after that ivig was that severe flare up?

My 15 yo just had flare up, about 11 days later, also requiring hospitalization, she seemed back to her absolute worst. By day 20-21 she seemed much better. We changed meds during the horribke flare, so who knows what did what?

An mri at day 19 did show mild sinus disease.

She us back on augmentin now.

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Two years ago today my son was admitted to an inpatient psychiatric unit due to a severe exacerbation following his first IVIG. Today we celebrated his 16th birthday and he was so happy - all week... just loving life, as a boy should be at age 16. It has been a long, twisted, and confusing struggle to dig out of the hole we were in, but a combination of regularly scheduled IVIG treatments, multiple antibiotics for bartonella, multiple supplements for energy and immune support, regular visits with a great psychologist, a school district that *Finally* seems to understand the chronic nature of this illness and will let him attend school part-time for a while, and (above all) a pediatrician who is open to new ideas and able to give my son emotional support have led to continued improvement in functioning. He has no more sinusitis, thanks to the IVIG, and sinusitis was his main PANS trigger, so his brain has had a rest from the PANS flare ups. Now to rid his body of the bartonellla that also took home while he was immune deficient. I am hoping we are at least half way there.

 

Anyway - hang in there folks. If you are in a dark place - please know there is light. Hold on tight and don't give up.

 

 

This is so great to hear.

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kimballot- thanks for the update - great to hear. Do you have any supplements for energy & immune support that you really favor? Again, great news!!

 

He does about a dozen different supplements, but I think I saw the greatest benefit when we added in coQ10 and inositol for energy. He still has a long way to go with fatigue, headaches, brain fog and memory issues.. and I am still looking for ideas... but so much better than he was.

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Kimballot- how long after that ivig was that severe flare up?

My 15 yo just had flare up, about 11 days later, also requiring hospitalization, she seemed back to her absolute worst. By day 20-21 she seemed much better. We changed meds during the horribke flare, so who knows what did what?

An mri at day 19 did show mild sinus disease.

She us back on augmentin now.

 

My DS started showing some relief of depression about 9 weeks after the initial flare. It was after the second IVIG and also after we took him off Singulair (which he had started 2 weeks before IVIG #1). I am not sure if the second IVIG or the singulair removal started him down the right path, but I was sure grateful to see him smile again!

 

The oppositional behavior and rages continued, though, until we started him on treatment for bartonella, so I think those are more bartonella related and less PANS related. Hard to separate out.

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Thank you so much for sharing- very happy to hear you are on a healing path. :). After parasite, lyme, nutritional changes in the last 2 yrs., my son is finding quite a lot of relief from headaches, thinking, depression etc.with neurofeedback.

 

Keep healing--take care!

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kimballot- thanks for the update - great to hear. Do you have any supplements for energy & immune support that you really favor? Again, great news!!

 

He does about a dozen different supplements, but I think I saw the greatest benefit when we added in coQ10 and inositol for energy. He still has a long way to go with fatigue, headaches, brain fog and memory issues.. and I am still looking for ideas... but so much better than he was.

Thanks. I hope he had a great b-day!

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