Blood Work - Even more confused...

[sf_mom]

My son's ASO titers were tested 1 month post illness and were 244. His symptoms hit their peak at about 2 1/2 weeks after high fever started and he started to improve on his own 2 weeks later and prior to antibiotics. Retested ASO 5 weeks 6 days post illness and one week of antibiotics and it was 205.... Anti-DNase-B was negative. Retested his ASO 8 weeks post illness and 3 weeks of antibiotics and it was 206..... Anti-DNase-B was negative.

 

My summation was that he improved as his ASO dropped.... He seemed a lot better after about a month of antibiotics and drastically improved again after IVIG. Because I had gotten used to certain things, I now realize he was much sicker than we knew for the last 1 1/2 years. I plan to retest ASO titers soon for a baseline reference.

[P_Mom]

Yeah......it seems like the titer thing is all over the place in these kids. So far, it seems like the Cam Kinase is the best indicator. Hopefully, it will pan out.

 

SF Mom...when you mean you had gotten used to things...what do you mean? I mean, like what behaviors were there that you got used to that went away after IVIG? How long after you started to do antibiotics and realized it was PANDAS did you do IVIG?

 

Thanks!

[sf_mom]

Well...... he was really restless, couldn't sit still at dinner table or while reading to him prior to bed, talkative, needed reassurance often, interrupted conversations, would get upset if he didn't think we were listening, said um, um, um prior to starting each sentence and when he lost his train of thought, sometimes we would have to put him back to bed several times before he'd go to sleep, he had dark circles under his eyes, etc. All of these things I attributed to his age, personality and normal appearance that have all 'for the most part' stopped since IVIG. We think its probably been since November 2007 that he has been sick but didn't show any TICS until six month after that when he had his first cough. Then another year later we had full blown episode with a ton of TICS and mild OCD that started on JUNE 24th. He had IVIG on September 18th and 19th.

 

TODAY WAS ANOTHER TIC FREE DAY!!! He has slept through the night every night except two since IVIG, in his own bed with a drastically improved night time routine. Just tonight we talked about when he might want to give up his baby blanket..... something he clung to when he was at his worse. I can't explain it but he looks different..... like he grew or got older, his body posture seems different. Its subtle but as his mother I notice and I wonder what other improvements I'll notice in 2 to 3 months post IVIG.

 

 

 

 

 

 

Yeah......it seems like the titer thing is all over the place in these kids. So far, it seems like the Cam Kinase is the best indicator. Hopefully, it will pan out.

 

SF Mom...when you mean you had gotten used to things...what do you mean? I mean, like what behaviors were there that you got used to that went away after IVIG? How long after you started to do antibiotics and realized it was PANDAS did you do IVIG?

 

Thanks!

[EAMom]

Well...... he was really restless, couldn't sit still at dinner table or while reading to him prior to bed, talkative, needed reassurance often, interrupted conversations, would get upset if he didn't think we were listening, said um, um, um prior to starting each sentence and when he lost his train of thought, sometimes we would have to put him back to bed several times before he'd go to sleep, he had dark circles under his eyes, etc. All of these things I attributed to his age, personality and normal appearance that have all 'for the most part' stopped since IVIG.

 

Some of these like ADHD symptoms (which can be from PANDAS).

[momtocole1]

Dear EAMom,

Thank you for all the information. My son is 12 in November. He weighs 118 pounds. He is so sedentary, during this last episode he has pulled away from everyone and everthing. He won't go outside anymore, very rarely.

 

He was on 12.5 mg. per day, I have to go check the bottle to see wh

at the strength was, I think it was 500 mg. per 5 ml. He started on a much lower dose and I asked the dr. to up it after I saw the posts on this discussion board.

 

I saw a major breakthrough tonight on the new antibiotic: Augmentin. My son ate a Quaker Granola bar. I know that must seem so minor but he would not eat one for the last 2 months and he used to love them. He told me that he could not eat them because they were made by Quaker and that meant there would be an earthquake. Poor Guy... It seems small, but I am believing that is the start to him coming out of this very difficult time.

 

Would I have to take my son to OK to see Dr. Cunningham for blood work? Will he do a consult with my dr. and send lab info? I will read the posts that you are recommending, it probably says it there.

 

I will follow up with the other referrals and see if Dr. Gupta can help.

 

Thanks again for everything...

 

 

 

 

 

 

 

 

 

What dose of Azith. was your son on (and how much does he weigh)?

 

Contact Diana Pohlman at http://www.pandasnetwork.org/ . She has had some contact with Dr. Gupta at UC Irvine...so maybe that would be one place you could go to.

 

You should also consider having bloodwork run by Dr. Cunningham at Univ. of Oklahoma. There are many posts on this. Here is one: http://www.latitudes.org/forums/index.php?...ham+blood+tests During an exacerbation is the best time to do this.

 

BTW, my dd also had low ASO/anti-dnase b strep titers despite positive cultures and later high values from Dr. Cunningham.

 

Here is a post about ASO http://www.latitudes.org/forums/index.php?...art=#entry29305 read aug 24 and jan 11 posts.

 

I would also throat culture other family members to make sure you don't have any strep carriers that might be causing re-colinization with your son.

[P_Mom]

SF Mom......thanks, that is very interesting....except for the Um, Um, Um and the dark circles....you could be describing my younger son. When he had his bad episode...his ocd and vocal tics were so bad (nothing prior) that today, with 99% tic/ocd free, I consider him to be doing very well. He does great in school, too. But now I wonder if I am getting "comfortable?" Dr.K mentioned it to me, too. That parents are so relieved that their kids are doing well and not in a bad place anymore, that they tend to overlook and accept the small, remaining quirks.....just being grateful their kids are doing well...not realizing their child could be doing even better. I wonder if I am at that point right now? This has always been how my younger son is....fidgety, talkative, needing reassurance, wanting me to lie with him at night, etc.

I wonder if I am missing the boat on these things.....I wonder if these quirks would clear with IVIG?? That is so hard to imagine....him being quiet, etc.

 

We are supposed to do another round of steroids....30 days per Dr. Latimer. She does not seem to think he is in a place to warrant IVIG right now...she seems to think he can totally "clear" with the month of steroids. I can't help but think...well, okay, then what. He clears and then gets sick again (any viral) and things pop up again. I am wondering if I should skip the steroids (haven't started them yet) and go straight for IVIG??

[AmySLP]

We had the same experience with our daughter earlier this year. I thought there must have been lab error. Our daughter had 7-8 positive rapid strep infections over a six month period. When I was finally told by Dr Swedo (I e-mailed her at NIMH regarding my daughter when I was at my wit's end) to have these lab values tested, to my surprise ASO was negative and antiDNASE was negative, not even detectable. Our neurologist retested these about 6 weeks later to find similiar results. I have no idea why but these antibodies clearly do not elevate in all kids.

 

My daughter is experiencing a relapse of her PANDAS now (after nearly six months of being symptom free).

 

Amy

[sf_mom]

My thoughts were always to go after the underlying infection with IVIG/Antibiotics hard and then rebuild his immune system with potentially further IVIG. I have always been fearful that if you don't get the entire infection they will just get re-exposed and have a worse presentation down the road. My understanding 'from my father-in-law who is a Urologist' steroids only help with swelling and 'maybe' antibiotics would clear infection. I wasn't willing to take the risk. I intend to pursue further IVIG with 'any' immunologist that will recognize immune deficiencies and treat appropriately without revaccinating. There is no reason he should have any symptoms and they DO know how to support the immune system again...... my son is at the perfect age for that to happen '5 years'.

 

-Wendy

 

SF Mom......thanks, that is very interesting....except for the Um, Um, Um and the dark circles....you could be describing my younger son. When he had his bad episode...his ocd and vocal tics were so bad (nothing prior) that today, with 99% tic/ocd free, I consider him to be doing very well. He does great in school, too. But now I wonder if I am getting "comfortable?" Dr.K mentioned it to me, too. That parents are so relieved that their kids are doing well and not in a bad place anymore, that they tend to overlook and accept the small, remaining quirks.....just being grateful their kids are doing well...not realizing their child could be doing even better. I wonder if I am at that point right now? This has always been how my younger son is....fidgety, talkative, needing reassurance, wanting me to lie with him at night, etc.

I wonder if I am missing the boat on these things.....I wonder if these quirks would clear with IVIG?? That is so hard to imagine....him being quiet, etc.

 

We are supposed to do another round of steroids....30 days per Dr. Latimer. She does not seem to think he is in a place to warrant IVIG right now...she seems to think he can totally "clear" with the month of steroids. I can't help but think...well, okay, then what. He clears and then gets sick again (any viral) and things pop up again. I am wondering if I should skip the steroids (haven't started them yet) and go straight for IVIG??

[sf_mom]

Well...... he was really restless, couldn't sit still at dinner table or while reading to him prior to bed, talkative, needed reassurance often, interrupted conversations, would get upset if he didn't think we were listening, said um, um, um prior to starting each sentence and when he lost his train of thought, sometimes we would have to put him back to bed several times before he'd go to sleep, he had dark circles under his eyes, etc. All of these things I attributed to his age, personality and normal appearance that have all 'for the most part' stopped since IVIG.

 

Some of these like ADHD symptoms (which can be from PANDAS).

 

Yes, ADHD symptoms and they are going away!!!!! Are you finding similar with your daughter?

[EAMom]

We had the same experience with our daughter earlier this year. I thought there must have been lab error. Our daughter had 7-8 positive rapid strep infections over a six month period. When I was finally told by Dr Swedo (I e-mailed her at NIMH regarding my daughter when I was at my wit's end) to have these lab values tested, to my surprise ASO was negative and antiDNASE was negative, not even detectable. Our neurologist retested these about 6 weeks later to find similiar results. I have no idea why but these antibodies clearly do not elevate in all kids.

 

My daughter is experiencing a relapse of her PANDAS now (after nearly six months of being symptom free).

 

Amy

 

Amy...did Swedo say anything about low titers and positive cultures?

 

Is your dd on antibiotics? Long term? which one and what dose?

 

Have you sent serum to Dr. Cunningham? During an exacerbation is a good time.