Those with high titers I need your opinion....

[dabel]

I have not posted in awhile because I did not want to jinx my son's recovery. I guess I won't jinx it now because he is slipping. In a nutshell my son just turned 13 and was diagnosed one year ago this month. He had this since about age two but really crashed at 5. He has been in the hospital a couple of times and is considered a severe case. He has been on 875 mg Augmentin 2 x's/day since last October (one full year). He had IVIG last December and made slow but steady positive progress. He was doing fantastic and actually went to school this year. He had missed the last two years due to this lovely illness! I was very optimistic. He did well and even joined the cross country team. Then he got a virus! The virus wasn't even a big deal but here came the crippling depression etc. I took him to our Ped. and she gave him a 20 day steroid taper and ran some blood work. I would like to share his titers with all of you and see if any of your children have had this same type of result.

 

 

Month/Year ASO antiDnase B

 

Oct. 2008 400 not tested

 

Sept. 2009 400 1590

 

May 2010 400 958

 

Sept 2010 400 1180

 

I do not understand why the ASO has not changed at all in two years. I also do not understand why his antiDnase B would go up recently?! Keep in mind that he has been on full strength Augmentin for one year and had IVIG in Dec 2009. I emailed Dr.K before I had the tests results back and he said if a VIRUS caused this and my son is not better in a week we will have to consider another IVIG. He has told me in the past that the titers can take awhile to come down. I get that - but two years and now the antiDnase B is going up. Would this indicate possible intracellular strep? If so then Augmentin would not work.

 

Have any of your children's titers done this? Thanks for the input!

[KeithandElizabeth]

Oh, I am so sorry! I had been thinking of you recently and noticed you were not posting much and I was hoping that that meant good news.

 

You will probably know by now that I really think another infection can possibly make it difficult for your son to deal with the strep. In this scenario, I would:

 

test the whole family for strep

 

check your son for mycoplasma and even consider a high IGG and neg IGM to be positive

 

Check for lyme and coinfections via IGENEX

 

Check for C3d, circulating immune complexes (high levels can possibly create a false negative lyme test)

 

Again, I am sorry and I will be thinking of you all!

 

Elizabeth

[JAG10]

Hi dabel,

 

So his IVIG was in Dec 09, he's had 10 months of recovery and this is the first virus he's had in 10 months?

 

Hmm. Well, I'll let you know. We just had a nasty virus run thru our house with dd10 experiencing behavioral setbacks. We tested ASO and a-DNAse B Saturday, so we should find out the results this week. She had IVIG in May, we retested ASO DNAseB, and myco-p in late July: strep titers came down significantly and myco-p doubled. So, I'm interested to see if her strep titers have risen again.

 

Let me get this straight; doc K is saying if a VIRUS can make your child's ASO and DNAseB titers rise than they are an autoimmune measurement, not a strep measurement? Is that possible in some kids???

[colleenrn]

Has your son been on zithromax? If the strep is intracellular, the zithromax would reach it where the Augmentin may not.

Colleen

[wornoutmom]

Jag - I'm pretty sure she said she contacted Dr K before she got the titer results, so his comment was about the virus causing the crippling depression, not the titer results. D- correct me if I'm wrong.

 

 

dabel - Gosh I've been wondering how your son was doing! We continue to see the downturns with every little illness as well. The good news is the huge setbacks seem to run their course with the illness. 2 weeks ago with a virus my son went into a nearly catatonic state (well - not truly but you get the idea) with his depression. He is slowly working himself back up. My dh says its akin to recovering from a head injury. Yesterday was one of the more "normal" days he's had in a long time, despite being exposed to another nasty illness I seem to have. So as scary as this is, he may come back out of it once the bug is out of his system. I'll be pulling for him!! Hope someone here can answer your ASO/dnase questions. I think a few have also had those sky high ones that persist. PM/call me if you want to talk!

[mom md]

My son has very high titers. When diagnosed his ASO was 1450 and his antiDNaseB was 1750 I think. Latimer said we were in the top 2% of titers. After PEX we were under 100 on both. After relapse we were 500 and 700. After IVIG we have fallen. I think the titers do take time to fall. We are slipping too though and I am sure we are higher now. We are going to check them at his next IVIG just to minimize the blood draws.

From my understanding, with flares the antiDNase B is the one that goes up (especially if it is a PITANDS picture and the stimulus was not strep). The immune system churns out strep antibodies in confusion. In rheumatic fever this is the one that is really elevated.

I think the levels indicate that it is an autoimmune disease more than an infectious one from a strep infection. Basically I think anything that stimulates his immune system causes a rise in his antiDNaseB level. This may not be correct but this is how it makes semse to me.

[Joan Pandas Mom]

Hi Dabel, I'm sorry you are going through a downturn too. My( just turned) 16 yr. old son had his 4th crippling exacerbation last Oct. too. His ASO was 1400 and AntiDnase normal. His ASO was 650 +/- in March 450 in May and 333 in August. He has been on high dose abx for 1 year too. He is in the middle of a horrible exacerbation right now too. Going for IVIG later this week. Good luck. I think you are right about the intracellular. It is strange it remains exactly the same. It makes me wonder if the Augmentin is doing anything at all.

[dabel]

Jag - He also had a little virus in mid-August but seemed to hold his own through that one. In May he had a bad staph infection and was not reacting well to it. We put him on Bactrum along with the Augmentin and it cleared quite quickly. Dr.K does not know the titers yet.

 

He has never been on a different abx - always Augmentin as that is Dr.K's abx of choice but I do wonder if we should switch to Zith or something.

 

Mom md - That is interesting and would make sense. I will have to look into that further. I still do not understand why the ASO remains unchanged after two years though.

 

Wornout mom - I have been thinking about you guys too. I would like to chat. Sometimes I wonder if trying to get our kids back to 'normal' life is the right thing to so. My goal has been to get my son back to school with his friends doing the things that kids his age do. Am I just sending him into a germ pit that he can not handle at this point? Dr.K says you can not keep these kids in a bubble. Based on what I have seen with my kid maybe I have to. He was doing sooooo good and then down he goes. This bug wasn't even a bad one - some minor body aches and tired.

 

Elizabeth - We are thinking about doing the Igenex testing. We have to come up with a bunch of money to get all the kids tested! Atleast we have United now. I think they cover IVIG for PANDAS. The last IVIG cost $15,000 and was not covered.

 

Thanks for all of your input....

 

I HATE PANDAS/PITANDS/WHATEVER!!!!!!

[Joan Pandas Mom]

I should mention too, my older son (nonPANDAS) suffers from depression. I found out Sunday he had elevated ASO 244 and a bad cough that probably turned into Bronchitis. He started 500 mg Biaxin 2x day Sunday. I noticed last night he was smiling more, much more talkative. Maybe his infection is/was contributing to his depression too?

[norcalmom]

I wonder if those with PITANDS are more likely to relapse, or need addition ivigs, or is ther is something else they have in common - like a certain type underlying infection. DS had ivig 8 weeks ago he is pitand, and reacted to a virus 2 weeks ago.It wasn't as bad as it would have been prior to ivig, but his mood, and one ocd trait, still have not retruned to where it was before the virus. He was getting better and better, and now he slipped and seems to have stopped progessing. I have a good shot at keep him strep free - but virus free? There's no way. We do so much to get our kids heathy, and then we can't protect them...I'm so depressed.

 

Even worse - he's never had high titers - so no way of measuring what is going on. I am planning on gving him a cunningham test in few weeks.

 

We are also going to see a lyme specialist to get that testing done. Wish we had done that (and mycoplasma) befor evig.

 

DS is on 500 mg of azith daily. Dr k wanted to put him on very low dose of amox...but we decided to stick with aztith bcs we know the azith works to a certain extent, and didn't want to change too many variables at once, and bcs I felt it gave him more protection in general at this time of year.

[JAG10]

My son has very high titers. When diagnosed his ASO was 1450 and his antiDNaseB was 1750 I think. Latimer said we were in the top 2% of titers. After PEX we were under 100 on both. After relapse we were 500 and 700. After IVIG we have fallen. I think the titers do take time to fall. We are slipping too though and I am sure we are higher now. We are going to check them at his next IVIG just to minimize the blood draws.

From my understanding, with flares the antiDNase B is the one that goes up (especially if it is a PITANDS picture and the stimulus was not strep). The immune system churns out strep antibodies in confusion. In rheumatic fever this is the one that is really elevated.

I think the levels indicate that it is an autoimmune disease more than an infectious one from a strep infection. Basically I think anything that stimulates his immune system causes a rise in his antiDNaseB level. This may not be correct but this is how it makes semse to me.

 

Mom MD,

 

I agree with this observation and my experience is that many PANDAS docs find this significant too. I know some folks think the height of the titer rise is irrelevant, but for some of our kids, mine included, sky-high antiDNAse B is very telling. I'm am certainly not stirring up the titer rise controversy; no doubt PANDAS/PITAND/SOT exists w/o elevated titers, but for some of our kids it is a reliable gauge of what is going on with their immune system.

[amyjoy]

Just a thought about Lyme testing...

 

My son's pediatrician who diagnosed PANDAS is also a big lyme person, and he has recently moved from using only the IGENIX western blot for years, to the NeuroScience western blot + immuno and cytokine assessment. if you are interested here is the link for it, and according to Neuroscience, insurance does mostly cover this test.

https://www.neurorelief.com/index.php?option=com_content&task=view&id=604

 

in case this helps.

[philamom]

Just a thought about Lyme testing...

 

My son's pediatrician who diagnosed PANDAS is also a big lyme person, and he has recently moved from using only the IGENIX western blot for years, to the NeuroScience western blot + immuno and cytokine assessment. if you are interested here is the link for it, and according to Neuroscience, insurance does mostly cover this test.

https://www.neurorelief.com/index.php?option=com_content&task=view&id=604

 

in case this helps.

Thank you for posting this. I quickly glanced at it -- will check it out this evening. Do you know if you need to be off abx for testing?

[amyjoy]

HI i just called neuroscience to find out, and they said no, your child can be on antibiotics when they test.

Good luck with it.

[dcmom]

For those who are reacting to other illness...

 

(I assume you have tried this, but I thought I would ask)

 

Have you tried upping the abx, and adding ibuprofin, immediately upon symptoms flaring? We have found (so far) that this helps. If it doesn't help, we move up to a steroid taper. If that wasn't effective, and I thought infection was an issue, I would want to add another antibiotic to the mix, short term.

 

This is a very frustrating illness.....