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Positive update


mom md

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I know the importance of hearing positive news so I wanted to update on our son who is 9. We think he had PANDAS 5-6 years before we connected the dots. His symptoms were very waxing and waning and it is hard to point your finger on the day it all started. He had it all. Hyperactivity, poor impulse control, OCD, anxiety, sleep issues, rages, etc. and finally tics and chorea. We were diagnosed in Feburary of 2009. We had PEX at Georgetown due to the significant chorea and left cured. Four months later we relapsed after he was exposed to H1N1. He always responded to steroids but we were unable to wean him without symptoms returning so we did IVIG in Jan of 2010. We had a bumpy 10 days and then he was almost back to baseline. He did IVIG in March 2010 just to keep him there. He began with mild symptoms in August and after fighting insurance (and finally winning!) he did IVIG 10 days ago again at home.

Prior to this treatment he had severe anxiety and OCD. His symptoms were gone in 2-4 days. Unbelieveable to watch every time I see it. Prior to it he would touch things 5-25 times and be unable to walk without turning because he had a "string" attached to his back. The string was almost gone 4-5 days after treatment. My friend came over yesterday and said his eyes looked clearer...as if the "fog" was gone.

I think we have a pretty classic case but also one that was there for so long that retraining the immune cells not to make antibodies may take a while. This has definitely turned into a marathon and is our normal. Looking back though over the past year and a half though he has done excellent in school, he has made great friends, plays sports, and basically looks like every other 9 year old boy. I still suffer from PTSD, but at least I know my enemy and what works. Each year is getting better and each relapse is less severe.

I am also doing all I can to slowly help spread the word among the medical community. We are having a grand rounds next month at the teaching hospital here on the disease. I speak to everyone I can and preface it by..."you are never going to believe this story..."

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I am so happy to hear that you are all in a good place--what wonderful news!!! Thank you for sharing!

 

:wub: Also, I can't thank you enough for doing what you can to help spread the word...I think this crappy disorder can be easily managed if caught early. Therefore, it is crucial that pediatricians and ER workers know about this! :D

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Thanks for the update, so glad he is doing well. I am also trying to spread the word thru the nursing community. I just realized one of my friend/employees is also a school nurse also. I have printed the article that was on here for her to spread around the school nurse world. Just started another nurse yesterday that actually said she had heard of it!!! Yeah!! I was also able to educate a nurse the day we went to ER for psychotic rages the week after 1st ivig, she had never heard of it, now I see her from time to time and make sure to let her know the ivig has helped. That day, they wanted to admit my dd to the psych facility!! I have also been able to discuss this at length with our Medical Director (I work for a transport company), he is also a ER physician, he was very interested to learn more so that he could recognize if something presented to his ER. Sorry for rambling, it just gets me excited to get the word out- Back to the subject, soooooo happy for you, we are doing well also, I praise and thank the Lord for how far we have come!

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MOM...ssssooooo happy he is recovering so well!!!!

Thank you for being persistant in making sure other kids might have the same opportunity to heal and recover...

And while i'm at it...thanks to all here, especially those in the health community..for spreading the word...and not just being hushed by your peers, because it is not a popular diagnosis!!!!!!!!!!

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mom md,

 

Thank you so much for updating. I love reading success stories!

 

I know you have probably posted this before, but would you mind reposting some of his labs such as strep titers, Cunningham, antineuronal antibodies, and anything else you think is important?

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When my son was diagnosed his ASO was 1750 and his AntiDnaseB was 1950. After amoxicillin for 10 days and azith for three months his ASO was 950 and AntiDnaseB 1320. Then his anitDnase went up to 1360. PEX cured everything instantly for us. Four months after PEX (his titers were <100 when we left) his ASO was 500 and the other was 700. We did high dose IVIG (2gm/kg over 2 days). Three months after IVIG his aso was 378 and aniDnaseB around 500. He was doing about 95% then. Pre-third IVIG his ASO was stablr at 378 and I am waiting on the antiDnaseb titer. Interesting too that prior to PEX his ANA was 1:640. We have also not had strep to our knowledge since 2006.

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Mom MD,

 

Have any of the PANDAS docs agreed with you that ASO and/or aDNAseB can rise without having had a recent strep infection? Purely an auto-immune reaction? I think this could be the case, but that is just me speculating.

 

My dd has NEVER swabbed or cultured positive, but runs the sky-high titers like you mention. Titers drop after IVIG, then back up they go... When I ask why doesn't she ever test swab or culture positive, I'm told....they must not be swabbing correctly or we're not timing it correctly....they have no other explanation for this lack of finding.....yet up go the strep titers, so she must have had strep....maybe not....

 

I know what is coming, so let me say...her sinuses are also perfectly clear, no sign it is "hiding" somewhere else and she's on abx, but they don't help with a virus/cold.

 

This is so frustrating!!!!! These labs are supposed to help us figure out what is going on with our kids, but if they don't mean what they are supposed to mean, then what the flip do we do?????

 

So, what is more reliable...the culture or the blood titers? We've all discussed how once PANDAS is in motion, many different viruses, bacterias, stressors can trigger an exacerbation, but can/does that mean that ASO and/or ADNAseB are also being set into motion even w/o strep? Bottom line, for some of our kids can Exacerbation=increased ASO +/- a-DNAseB even without strep infection?

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Hi mom md

Thanks for the update! I'm happy you have found what works for your son. Did you happen to also do cunningham tests after the ivigs in addition to the titer testing?

my DS doesn't have high titers, so I'm trying ot figure out if any docs out there are using the cunninham test (along with symtoms) to determine when another ivig could help.

Edited by norcalmom
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Mom MD,

 

Have any of the PANDAS docs agreed with you that ASO and/or aDNAseB can rise without having had a recent strep infection? Purely an auto-immune reaction? I think this could be the case, but that is just me speculating.

 

My dd has NEVER swabbed or cultured positive, but runs the sky-high titers like you mention. Titers drop after IVIG, then back up they go... When I ask why doesn't she ever test swab or culture positive, I'm told....they must not be swabbing correctly or we're not timing it correctly....they have no other explanation for this lack of finding.....yet up go the strep titers, so she must have had strep....maybe not....

 

I know what is coming, so let me say...her sinuses are also perfectly clear, no sign it is "hiding" somewhere else and she's on abx, but they don't help with a virus/cold.

 

This is so frustrating!!!!! These labs are supposed to help us figure out what is going on with our kids, but if they don't mean what they are supposed to mean, then what the flip do we do?????

 

So, what is more reliable...the culture or the blood titers? We've all discussed how once PANDAS is in motion, many different viruses, bacterias, stressors can trigger an exacerbation, but can/does that mean that ASO and/or ADNAseB are also being set into motion even w/o strep? Bottom line, for some of our kids can Exacerbation=increased ASO +/- a-DNAseB even without strep infection?

And the flip side of that is frustrating, too- having multiple + strep tests and no rise in titers, or falling titers. I can see titers rising due to exposure, w/o there actually being an infection, since those titers are to strep exotoxins, so an effective immune response would kill the strep when exposed and then of course, the toxins would be excreted. But, I thought the normal ranges for those titers were adjusted to allow for normal exposure response vs. infection response.

 

I would think there is just something wrong w/ an immune system that doesn't produce antibodies to a known infectious agent.

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I dont get how these numbers arent scued due to the IVIG.My immunologist says that most of these tests arent accurate because of the IVIGs.Maybe its just us we do them every 21 days.

 

Melanie

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