How long after IVIG would titers

[CandKRich]

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Edited August 12, 2013 by CandKRich

[EAMom]

I think you need to wait at least 3mo....but am not sure.

[sf_mom]

21 days is half life of donor antibodies... 6 months for the rest. I'd wait 6 months to do any additional testing. From now until then, you really have to look at clinical picture to determine effectiveness of IVIG. There has to be a baseline adjustment downward over weeks not days to determine success or failure (another IVIG treatment is required).

 

We strongly believe our success post IVIG has been the use of high dose multiple antibiotics (more of a Lyme protocol) and treating other family members that have titers with antibiotics.

 

Our son who is now 50 pounds is on 250 m.g. Azithromycin and 600 m.g. Omnicef. We are 6 months post his last treatment and recently tested the following: Mycoplasma, ASO, Anti-DNase-B and Immune Complexes. ALL NORMAL!!!!!! We have decided to move forward with Igenex Lyme Testing (just to rule out additional co-infections) and are awaiting results currently.

 

FOR THE RECORD: My friends son who had RF, diagnosed with PANDAS and is included in our cluster recently tested positive for Bartonella and one other co-infection to Lyme. He is also 50 pounds and on 500 m.g. Biaxin and 300 m.g. Ripfampin daily...... I do not expect this antibiotic course to change for several months.

 

-Wendy

Edited July 6, 2010 by SF Mom

[Betty04]

We are currently looking into this issue. My DS5 is 11 weeks post high dose IVIG with no response. Brief summary of his history is tics began at 18 mos following severe sinus and ear infection. By age 3years he had tubes in his ears, adenoids removed, tonsils removed and sinus surgery. He has low iga and igg. His Cam Kinase last September during an exacerbation was 142 while on daily Azith250mg. His tics have positively responded to augmentin and clindamycin in the past. He has never had a positive strep culture or elevated titers but has had the canary response strep at school. One Pandas expert we consulted with said to question his diagnosis since he has not responded to IVIG and he has a tic only presentation. The only other diagnosis that would fit is Tourettes, so maybe it's time to accept that?

 

Circling back to the topic of this post, we pulled my son's titers at 6 weeks post IVIG. His ASO was 94 and his Dnase was 192 and streptozyme abnormal and his mycoplasma Igg was high. His Igg level was 1000 (pre-IVIG his igg was 400 so obviously there was still a significant amount of donor antibodies at 6 weeks or a miracle occurred and we jump started his immune system). Prior to Ivig his aso during exaccerbations measured at <6 and Dnase measured <60. So you can see and as would be expected his strep titers increased post ivig. Since he did not respond to ivig we are questioning what role his current level of strep titers may have played. We are planning to retest his titers at 3 months. An increase would be significant as my son was pulled out of school and has been home with no exposures since the ivig. All family members have cultered negative and no elevated titers.

 

Sorry if I just hyjacked this thread, just venting my frustration at having no response to the ivig and thought it might be helpful to at least bring up the topic of tracking titers post ivig for some who do not respond or never had elevated titers?

[deby]

21 days is half life of donor antibodies... 6 months for the rest. I'd wait 6 months to do any additional testing. From now until then, you really have to look at clinical picture to determine effectiveness of IVIG. There has to be a baseline adjustment downward over weeks not days to determine success or failure (another IVIG treatment is required).

 

We strongly believe our success post IVIG has been the use of high dose multiple antibiotics (more of a Lyme protocol) and treating other family members that have titers with antibiotics.

 

Our son who is now 50 pounds is on 250 m.g. Azithromycin and 600 m.g. Omnicef. We are 6 months post his last treatment and recently tested the following: Mycoplasma, ASO, Anti-DNase-B and Immune Complexes. ALL NORMAL!!!!!! We have decided to move forward with Igenex Lyme Testing (just to rule out additional co-infections) and are awaiting results currently.

 

FOR THE RECORD: My friends son who had RF, diagnosed with PANDAS and is included in our cluster recently tested positive for Bartonella and one other co-infection to Lyme. He is also 50 pounds and on 500 m.g. Biaxin and 300 m.g. Ripfampin daily...... I do not expect this antibiotic course to change for several months.

 

-Wendy

 

Hi Wendy,

Looks like there are no co-infections in the case of my son (only very elevated ASO, anti DNASE and streptozyme titers)in this case, with your experience in this forum, which abx is the best?

I am giving him only Azithromycin. Is Omnicef usually prescribed for strep only too?

Thanks!

[sf_mom]

I understand your frustration....

 

Have you checked your son for Lyme yet via Igenex and does he have any co-infections? Does he have high circulating immune complexes? I would suspect if your son was unresponsive to IVIG that Lyme is involved. Lyme/co-infections can be intercellular and move from the blood stream to more solid tissue to 'hide out' and you'll need to address this more aggressively from an antibiotic level.

 

Sorry, but I am not a big believer in the TS diagnoses so from my perspective DON'T GIVE UP!!!!

 

-Wendy

 

 

 

We are currently looking into this issue. My DS5 is 11 weeks post high dose IVIG with no response. Brief summary of his history is tics began at 18 mos following severe sinus and ear infection. By age 3years he had tubes in his ears, adenoids removed, tonsils removed and sinus surgery. He has low iga and igg. His Cam Kinase last September during an exacerbation was 142 while on daily Azith250mg. His tics have positively responded to augmentin and clindamycin in the past. He has never had a positive strep culture or elevated titers but has had the canary response strep at school. One Pandas expert we consulted with said to question his diagnosis since he has not responded to IVIG and he has a tic only presentation. The only other diagnosis that would fit is Tourettes, so maybe it's time to accept that?

 

Circling back to the topic of this post, we pulled my son's titers at 6 weeks post IVIG. His ASO was 94 and his Dnase was 192 and streptozyme abnormal and his mycoplasma Igg was high. His Igg level was 1000 (pre-IVIG his igg was 400 so obviously there was still a significant amount of donor antibodies at 6 weeks or a miracle occurred and we jump started his immune system). Prior to Ivig his aso during exaccerbations measured at <6 and Dnase measured <60. So you can see and as would be expected his strep titers increased post ivig. Since he did not respond to ivig we are questioning what role his current level of strep titers may have played. We are planning to retest his titers at 3 months. An increase would be significant as my son was pulled out of school and has been home with no exposures since the ivig. All family members have cultered negative and no elevated titers.

 

Sorry if I just hyjacked this thread, just venting my frustration at having no response to the ivig and thought it might be helpful to at least bring up the topic of tracking titers post ivig for some who do not respond or never had elevated titers?

[Betty04]

Thanks for the support SFmom! Believe me I don't want to give up but seem to be running out of options. Yes we just re-ran the Igenex igg and igm and co-infections. Igg and co-infections all negative. Igm was indeterminate but really only band 41 was positive. I agree with your view on the TS diagnosis when we don't have a family history and his tics have responded to antibiotic.... After fighting this battle for almost 3 years I just don't know what else we can do!

[sf_mom]

I think your best avenue is to contact Dr. Steve Harris in Redwood City.... He'll go at this properly with antibiotics. If its an intercellular bacteria he'll know how to get at it, draw it out. One thing I have learned is the Lyme Dr.'s are not fearful of treating aggressively!!! The antibiotic protocol for PANDAS pales in comparison to Lyme. BE PREPARED FOR HERXING, worse before better concept, flairs of TICS, etc.

 

Remember, my son's primary presentation was TICS/mild OCD. Almost everything thing has resolved for him. He is a much, much, much different child.

 

We do not have a family history of TICS either but my husband did/does have high ASO and Anti-DNase-B titers that we are treating and tracking.

 

-Wendy

 

 

 

 

Thanks for the support SFmom! Believe me I don't want to give up but seem to be running out of options. Yes we just re-ran the Igenex igg and igm and co-infections. Igg and co-infections all negative. Igm was indeterminate but really only band 41 was positive. I agree with your view on the TS diagnosis when we don't have a family history and his tics have responded to antibiotic.... After fighting this battle for almost 3 years I just don't know what else we can do!

[Fixit]

I love SF too....

my ds at this piont is only ts......mmmaaayyybbbbeeeee compulsions..and handwriting..(maybe sensory.chewing)

when younger..add/hd...sensory...oppositional.....(those combined were mayb 10% of a problem)

.tics would completely remit 10-12 times on abx alone...

current onset we saw a doc the day before with swollen glands.etc...next day started to tic(no strep found..i'm guessing combo of myco p...and worst allergy day on record till this year it doubled)

tics are known to be the hardest to get rid of....not for everyone..but in general...now double that by making that the main presentation(just like if ocd i main problem that would take long but, if i understand it is marginally easier to remit than tics)...

now just because all these combo of protocols work so well for ocd...doesn't mean ts is different and mostly in boys...we just have to work harder at finding the combination to thier lock...

my ds tics...my dh has a mild tics...(if i followed "traditioanal neurologists)he is just their version of live with it..good luck...we have no idea..50-100 years of following this thing..

and why don't they know....they won't look outside the box....or listen to me the 10 times i've gone in and said"Doc ...ds tics when he gets strep...."(NO CORRELATION MRS JONES!!!)..REALLY ...8-10-12times he got completely better on abx w/i one month each time

now i just think that ds' system is messed up so bad..it will be harder to change the memory in his sytem....AND I need this board to support that!!!!

just because tics are harder to get rid of doesnt' mean it's not all the same cr&^P

Now lets add that ds' grandmother..(his father's mother...so its on the same side) has lupus and thyroid condition...her sister has mild mild ocd...

ds uncle(same side) has psorisis very bad and is on ramicade and he has arthritis pretty bad for a 38 year old...and had impetiego

the other uncle had a mild incident of ocd as kid....i believe i think, he had mild RF as a kid..

back to dh...still trying to get his antidnase down...(not crazy high) and he still gets strep 1-2 times a year.....

A Traditional neurologist does not give a sh(*&t about this...has not run one test, lab, ekg, mri.....simply ..oh its ts....

ANd i fear some on this board would feel it's a death sentence of ts with no hope...as ocd is not an issue, and he is not responding like he used too, and if i get ivig and it doesn't work......IT JUST MEANS ITS HARDER TO GET RID OF

I am trying to be peglem..nancyd ....and just not stop fighting

ANd Betty...even if you can't gather all this kind of info...its pit/pans to me...

 

I am sorry if i'm yelling...or ranting..or what ever....i just feel like this is true...and i needed to let it out.....and i don't have a person i'm talking about...it's a part of a sentence here...an adjective there.....

 

i hope the thoughts are congruent enough to make sense

 

Without this board...and all of you, i would be truly alone fighting this terrible fight...

And in a much darker place

 

 

Thanks for the support SFmom! Believe me I don't want to give up but seem to be running out of options. Yes we just re-ran the Igenex igg and igm and co-infections. Igg and co-infections all negative. Igm was indeterminate but really only band 41 was positive. I agree with your view on the TS diagnosis when we don't have a family history and his tics have responded to antibiotic.... After fighting this battle for almost 3 years I just don't know what else we can do!

[KeithandElizabeth]

I completely agree with SF Mom. As I recall from one of your previous posts, your son had an almost positive lyme test in '08 with several indeterminate bands? The problem with lyme disease is that it can hide out. Have you checked your son's immune complexes (c3d) levels? This is another possible indicator of lyme disease.

 

I also agree with Wendy in that the more I learn and read about bacteria's and viruses, the less I am inclined to believe in "pure" Tourette's or OCD.

 

I would definitely consult with Dr. Harris in San Francisco.

 

Don't give up!!!

 

Elizabeth

[EAMom]

One Pandas expert we consulted with said to question his diagnosis since he has not responded to IVIG and he has a tic only presentation. The only other diagnosis that would fit is Tourettes, so maybe it's time to accept that?

 

Fixit had many great points.

 

Past history of response to antibiotics as well as Cam at 142 (non-PANDAS tics/tourettes only got as high as 110 in Cunnigham's paper http://www.pandasnetwork.org/CunninghamJNICaMKinase.pdf) clearly points towards PANDAS, not Tourettes.

 

I've also heard the "boys with tics" are the hardest to treat. Even Dr. K. said this is the group that responds better to Plasmapheresis (vs. IVIG).

 

And, I do agree with the others in trying to ferret out other causes for lack of remission with IVIG. For example, in Worried Dad's case, it was that his son needed higher doses of antibiotics (and the family ended up needing antibiotics--high titers, infection in Worried Dad). Whether it be Lyme, needing a different antibiotic (or dose), finding a some cause of immune issues, don't give up!

Edited July 7, 2010 by EAMom

[bubbasmom]

I've had a lot of trouble getting doctors to agree on 'post IVIG titers'. My son had titers run just a few days after IVIG and they were high (1320 and like 800) but hematologist said it was the IVIG, ped said no way, lab said no way. UGH!! So we've just waited as well. I really want them done right now because this is the most normal my son has been since September and we need that base line.

Just one more aspect of PANDAS that as parents we have to research it and figure it out on our own!! I think there should be some sort of 'medical degree' parents earn following PANDAS because we all research and learn so much!

[Betty04]

Thanks everyone for the support. I know that unfortunately you can all understand my despair! I went to my local library to get a copy of Cure Unknown on interlibrary loan so it should be here next week (thanks SFMom for that suggestion).

 

EAMom I know you are right about boys and tics. All the Pandas experts we have consulted with (except we have not spoken with Dr L) have advised against plasmapheresis for my son due to his immune deficiencies.

 

I am not ready to give up just need an avenue to pursue... but thanks to everyone's feedback i'll re-evaluate the Lyme and do some light summer reading of Cure Unknown

[EAMom]

Thanks everyone for the support. I know that unfortunately you can all understand my despair! I went to my local library to get a copy of Cure Unknown on interlibrary loan so it should be here next week (thanks SFMom for that suggestion).

 

EAMom I know you are right about boys and tics. All the Pandas experts we have consulted with (except we have not spoken with Dr L) have advised against plasmapheresis for my son due to his immune deficiencies.

 

I am not ready to give up just need an avenue to pursue... but thanks to everyone's feedback i'll re-evaluate the Lyme and do some light summer reading of Cure Unknown

 

 

The immune deficiencies really add another wrinkle into your son's situation. (Could you post the question?) I wonder...if there are other boys with tics/PANDAS/immune deficiencies...what they tried/responded to best? Did any do multiple IVIG's (perhaps treating the immune def.) and THEN see improvement in tics?

[P_Mom]

Okay....I am responding to the "boys with tics" question.

 

I have two boys with tics, PANDAS, and immune deficiency (low IGG and almost low IGA)....questionable response to S. Pneumonia titers.

 

Both boys responded to antibiotics. My older son had a dramatic, one day response to Amoxicillian with a 99% cessation in tics....he is a tic presentation PANDAS kid. We have never had to do anything else with him regarding treatments....he is on PEN VK proph. (a little Aug. in the mix..nothing high dose)for 3 years and doing great. (CamK 112)

 

Younger son also had a resolution (95%) of PANDAS symptoms (tics, OCD, anxiety, hallucinations) with antibiotics (although not nearly as fast as older son.) We have done 2 steroid bursts with him....second burst yielding remarkable results with just about 100% resolution, temporarily, in symptoms that were due to a Pertussis infection. No other treatments......also on PEN VK for 3 years (same thing with a bit of Aug) and also doing great. (camK 162...after a steroid burst and years of antibiotics.....doing well at time of draw???!!)

 

 

So, I don't know. I haven't seen in my boys what others are seemingly seeing.....they are PANDAS, one presented only tics, the other 50% tics, they are immune deficient (not alarmingly)....yet they responded to antibiotics (and a steroid burst) quite well requiring no additional treatments (hopefully it will stay this way).