IVIG for untreated PANDAS

[OCDandPANDASmama]

Hi, new to the forum but have been observing for a few months. I'm in desperate need of any answers possible. My DD first started having severe OCD symptoms at the age of 7 (she's 17 now). I had no idea what caused it or what PANDAS was. Through the years she has been on every SSRI imaginable (which had very little - if any - effect on her OCD symptoms and gave her suicidal thoughts) , been through ERP and CBT, hospitalized, you name it... In late 2015, an immunologist ran several tests and diagnosed her with PANDAS. Along with the OCD and being prone to strep, she also has insomnia and sinus/breathing problems. The only advice the immunologist gave was for us to get her tonsils and adenoids removed, which we did, and DD got strep 4 times within six months of the surgery. For the past two years, I've been going through doctors trying to convince one of them that DD needs long term antibiotics (we live in a very strictly textbook, narrow-minded location). We have an appointment with a new one this week with a reputation of being progressive and his secretary told me he is familiar with PANDAS. I also recently contacted Dr. K in Chicago who told me DD would most likely benefit from IVIG. Do any of you have experience with IVIG or any words of advice? Did it provide any relief of OCD symptoms? I've read mixed reviews but am willing to try anything at this point. I'm also going to see if this new doctor can test her for Lyme. Another concern I have is that God forbid her PANDAS may have gone too long untreated and she's suffering from irreversible brain damage  Sorry for such a big post I am just at loss at what to do here. 

[MomWithOCDSon]

Hi, and welcome!

My DS has a similar story to your DD's . . . OCD at age 6, started CBT and some ERP and it backed off for a while, OCD returned with a vengeance at age 8 and this time added low-dose SSRI to therapy which worked for several years, and then at age 12 became so dysfunctional no SSRI worked, wouldn't participate in therapy, etc.  That's when we were finally able to get a PANDAs diagnosis and treatment (antibiotics).  In our case, because his initial response to antibiotics was so positive, we were able to convince our doctor to continue to renew them, and in the end, he was on them for nearly 2 years, with improvements all along the way.

We saw Dr. K. for a consultation and he recommended IVIG for us, also; Dr. K. believes that IVIG is the only true way to "reset" the immune system and stop the autoimmune onslaught behind the anxiety/OCD, and the NIMH (Dr. Swedo) has agreed with him.  As you've probably seen here, there are those here who've had positive results with IVIG, and some who've not had palpable or lasting impacts, and I don't think anyone fully understands why the differences.  In our case, our DS was responding so well to abx, we decided we'd hold off on IVIG until and unless his improvements ceased or we couldn't get them abx anymore.  Not only did the IVIG seem like a more dramatic step, our DS didn't have any immune deficiencies, so we knew our insurance would not cover the treatment.

A couple of things you noted I wanted to respond to, specifically:  1) as your DD has had breathing/sinus issues, have you ever had her sinus' "scoped"?  There are a couple of families here on the forum who's sinus testing disclosed some cysts in the sinuses that were basically pockets of infection, more or less hanging out there and driving an unrelenting immune response which also reached the brain.  Upon having the cysts removed, followed by a round of antibiotics, the child's behavior improved dramatically.  We never went to the scoping for our DS, but he, too, had had sinus and breathing issues since he was 2 or 3.  We think maybe the long course of abx was necessary in his case because of some infection hanging out in those sinuses that took a while to eliminate non-surgically, as his breathing and sinus issues improved along with his behavior symptoms, and he's not had any significant issues since PANDAs treatment.

2)  You mention seeking Lyme testing.  I would encourage you to address that before you decide upon IVIG as there have been some reports here by families that IVIG was ineffective or even problematic for them because their child had underlying Lyme and/or co-infections that they didn't know about before moving forward with IVIG.

3)  While I do believe that you need to find appropriate medical treatment and perhaps SSRIs will not ever be a successful piece of your DD's health, my DS has continued to benefit from a low-dose SSRI for some occasional, lingering anxiety periods, and there have been other kids here for whom low-dose SSRI's have been helpful in conjunction with other tools.  You might consider some genetic testing such as Genomind which focuses on genetic makeup and which psychiatric medications are likely to be effective or not based on one's genetics.

And 3), you have a concern about "irreversible brain damage."  As the parent of a kid who, like yours, went for many years unsuccessfully treated for an autoimmune response (strep was our culprit), I will tell you that I don't see any brain "damage," per se, but I do believe that my DS's "wiring" today was informed by his experiences all those years.  He is now a healthy and happy 20-year-old, a scholarship student living away at college and growing mentally and emotionally on a daily basis.  But he is still prone to some anxiety during stressful times, and his go-to response to that anxiety are some OCD behaviors.  At this time, the anxiety and OCD are under control and so minor/sub-clinical that if you didn't know him extremely well, you'd have no idea.  So, "damage"?  I don't think so.  But a part of who he is?  Maybe.  Perhaps he'll continue to mature and evolve past even these remaining behaviors as his mind and body health stay with him.  Or he might always have these "tendencies" which, in addition to making him anxious at times, also make him conscientious, sensitive and empathetic toward others and their eccentricities.

Hang in there, and all the best!  All is NOT lost!

[tj21]

What ^^ said. DS17 showed symptoms at around age 8 (hindsight) and we didn't get PANS dx and treatment until age 14. 

-IVIG: we've had 2 high dose and are trying to get a 3rd approved. Son's immune system is dysregulated and he has hypogammaglobulimia (sp.) among other issues. Resetting his immune system w/IVIG has helped him. Search the boards for IVIG, there are long threads about experiences (I know, in your spare, not, time!).

-Long term ABX: we just increased the dose and his current flare calmed down, has been on Augmentin for the entire 

-OCD: skin picking is very resistent to treatment but once his current flare calmed down a bit, the OCD subsided

-Brain damage: don't know b/c he already had an underlying dx of dev.disability (cognitive), from birth.

 

You are not alone!!

[jan251]

With a history of sinus issues, I will second the recommendation to get that looked at.  After three yrs of antibiotics and several months of IVIg (and then a T&A), strep titers still high, we finally got around to a sinus CT.  The report did not indicate infection really, but the doc showed me on the CT itself where it looked like there may be infection.  We will now be attempting to treat that - not sure what the path will look like except that we are starting off with antibiotic in sinus rinse.  I'm hopeful this could be the key we have been missing for so long, infection that oral antibiotics couldn't reach.  Or it might be another dead end, but I'll chose hope instead.

We found IVIg to be helpful for other symptoms (attention and so forth), just not the OCD.  I don't regret the IVIg and I can imagine a situation where we may do more once we are confident we have dealt with the sinuses.  I wish we had done the CT earlier as I'm having a "well duh" moment, but it really was not obvious.  Mild post-nasal drip is his only symptom.

Possible infection in the sinuses fits well with the theory that problematic antibodies cross over into the brain via the olfactory bulb.

Edited July 25, 2017 by jan251

[OCDandPANDASmama]

1 hour ago, MomWithOCDSon said:

Hi, and welcome!

My DS has a similar story to your DD's . . . OCD at age 6, started CBT and some ERP and it backed off for a while, OCD returned with a vengeance at age 8 and this time added low-dose SSRI to therapy which worked for several years, and then at age 12 became so dysfunctional no SSRI worked, wouldn't participate in therapy, etc.  That's when we were finally able to get a PANDAs diagnosis and treatment (antibiotics).  In our case, because his initial response to antibiotics was so positive, we were able to convince our doctor to continue to renew them, and in the end, he was on them for nearly 2 years, with improvements all along the way.

We saw Dr. K. for a consultation and he recommended IVIG for us, also; Dr. K. believes that IVIG is the only true way to "reset" the immune system and stop the autoimmune onslaught behind the anxiety/OCD, and the NIMH (Dr. Swedo) has agreed with him.  As you've probably seen here, there are those here who've had positive results with IVIG, and some who've not had palpable or lasting impacts, and I don't think anyone fully understands why the differences.  In our case, our DS was responding so well to abx, we decided we'd hold off on IVIG until and unless his improvements ceased or we couldn't get them abx anymore.  Not only did the IVIG seem like a more dramatic step, our DS didn't have any immune deficiencies, so we knew our insurance would not cover the treatment.

A couple of things you noted I wanted to respond to, specifically:  1) as your DD has had breathing/sinus issues, have you ever had her sinus' "scoped"?  There are a couple of families here on the forum who's sinus testing disclosed some cysts in the sinuses that were basically pockets of infection, more or less hanging out there and driving an unrelenting immune response which also reached the brain.  Upon having the cysts removed, followed by a round of antibiotics, the child's behavior improved dramatically.  We never went to the scoping for our DS, but he, too, had had sinus and breathing issues since he was 2 or 3.  We think maybe the long course of abx was necessary in his case because of some infection hanging out in those sinuses that took a while to eliminate non-surgically, as his breathing and sinus issues improved along with his behavior symptoms, and he's not had any significant issues since PANDAs treatment.

2)  You mention seeking Lyme testing.  I would encourage you to address that before you decide upon IVIG as there have been some reports here by families that IVIG was ineffective or even problematic for them because their child had underlying Lyme and/or co-infections that they didn't know about before moving forward with IVIG.

3)  While I do believe that you need to find appropriate medical treatment and perhaps SSRIs will not ever be a successful piece of your DD's health, my DS has continued to benefit from a low-dose SSRI for some occasional, lingering anxiety periods, and there have been other kids here for whom low-dose SSRI's have been helpful in conjunction with other tools.  You might consider some genetic testing such as Genomind which focuses on genetic makeup and which psychiatric medications are likely to be effective or not based on one's genetics.

And 3), you have a concern about "irreversible brain damage."  As the parent of a kid who, like yours, went for many years unsuccessfully treated for an autoimmune response (strep was our culprit), I will tell you that I don't see any brain "damage," per se, but I do believe that my DS's "wiring" today was informed by his experiences all those years.  He is now a healthy and happy 20-year-old, a scholarship student living away at college and growing mentally and emotionally on a daily basis.  But he is still prone to some anxiety during stressful times, and his go-to response to that anxiety are some OCD behaviors.  At this time, the anxiety and OCD are under control and so minor/sub-clinical that if you didn't know him extremely well, you'd have no idea.  So, "damage"?  I don't think so.  But a part of who he is?  Maybe.  Perhaps he'll continue to mature and evolve past even these remaining behaviors as his mind and body health stay with him.  Or he might always have these "tendencies" which, in addition to making him anxious at times, also make him conscientious, sensitive and empathetic toward others and their eccentricities.

Hang in there, and all the best!  All is NOT lost!

Hi, thank you so much! I'm so glad to hear your DS is doing well. 

1) I think they did scope her sinuses before they removed her tonsils because they scoped her throat and diagnosed her with asthma. But I will certainly check her records to make sure. To this day, DD can hardly breathe out of her nose and has no sense of smell unless something is right under her face. Just wondering, what ABX worked best for your DS?

2) I'm going to ask her new doctor this week about testing her for Lyme.

3) My DD got put on Luvox when she was 11 and the first year it did wonders for her, but her pysch DR was the most condescending and ill-informed doctor I had ever encountered and decided one day my DD needed to go from 25 mg to 200 mg or she would 'build a tolerance'. Granted, I blame myself for allowing him to increase it so rapidly, but she was just doing so well and I was afraid to mess it up. Within 2 weeks my DD was suicidal and could not see! Even after we stopped the med, her vision is still awful and she had 20/20 all her life. I think a lower dose of Luvox wouldn't be a bad idea but DD is petrified of it. She told me the only SSRI she could physically tolerate (she has a super fast metabolism and is hyper-sensitive to side effects) is Cylexa. But I'm hesitant to give her any pysch-drugs until after we try abx because IDK what would interfere with what.

Thank you again for your response! It reassures hope is still out there!

[OCDandPANDASmama]

1 hour ago, tj21 said:

What ^^ said. DS17 showed symptoms at around age 8 (hindsight) and we didn't get PANS dx and treatment until age 14. 

-IVIG: we've had 2 high dose and are trying to get a 3rd approved. Son's immune system is dysregulated and he has hypogammaglobulimia (sp.) among other issues. Resetting his immune system w/IVIG has helped him. Search the boards for IVIG, there are long threads about experiences (I know, in your spare, not, time!).

-Long term ABX: we just increased the dose and his current flare calmed down, has been on Augmentin for the entire 

-OCD: skin picking is very resistent to treatment but once his current flare calmed down a bit, the OCD subsided

-Brain damage: don't know b/c he already had an underlying dx of dev.disability (cognitive), from birth.

 

You are not alone!!

-One concern I had with IVIG is the fact it has donor elements and I'm afraid it could transfer a virus or some illness not found to DD. Am I being paranoid about that?  Glad to hear it helped your DS!

-My DD skin picks as well but Drs said it's just a tic/habit, don't think her's is a compulsion.

Thank you very much for your response! 

[jan251]

Skin picking, trichotillomania, is indeed a common type of compulsion/OCD.  Even if it's a tic, tics are likewise symptoms of PANS/PANDAS.

[OCDandPANDASmama]

48 minutes ago, jan251 said:

With a history of sinus issues, I will second the recommendation to get that looked at.  After three yrs of antibiotics and several months of IVIg (and then a T&A), strep titers still high, we finally got around to a sinus CT.  The report did not indicate infection really, but the doc showed me on the CT itself where it looked like there may be infection.  We will now be attempting to treat that - not sure what the path will look like except that we are starting off with antibiotic in sinus rinse.  I'm hopeful this could be the key we have been missing for so long, infection that oral antibiotics couldn't reach.  Or it might be another dead end, but I'll chose hope instead.

We found IVIg to be helpful for other symptoms (attention and so forth), just not the OCD.  I don't regret the IVIg and I can imagine a situation where we may do more once we are confident we have dealt with the sinuses.  I wish we had done the CT earlier as I'm having a "well duh" moment, but it really was not obvious.  Mild post-nasal drip is his only symptom.

Possible infection in the sinuses fits well with the theory that problematic antibodies cross over into the brain via the olfactory bulb.

I'll definitely see about getting DD's sinuses looked at again, her former immunologist dismissed it as no big deal because they aren't debilitating but they've been bothersome long enough to justify further testing. Best of luck with the rinse, if I've learned anything from PANDAS it's always choose hope 

I've read a couple of people say IVIG helped relieve everything but the OCD, which unfortunately for DD is her biggest symptom. I'm glad it helped your DS though! Do you have any ABX recommendation if it does turn out to be a sinus issue for my DD?

Thank you for your response! I already love the atmosphere on this site. 

[OCDandPANDASmama]

1 minute ago, jan251 said:

Skin picking, trichotillomania, is indeed a common type of compulsion/OCD.  Even if it's a tic, tics are likewise symptoms of PANS/PANDAS.

DD will sit and pick the skin on her lips until they bleed.. Her newest tic is finger combing her hair, not a little, but to the point she's making it fall out. But her tics are mild compared to the big compulsions that literally consume her 24/7 

[jan251]

Antibiotic for the sinus rinse - our ENT chose cleocin gel 1%.  It comes in a tube.  I suppose the gel is a better choice than trying to do it with a capsule.  Cleocin is clindamycin, good for strep. (My kiddo has high strep titers, though I suppose there could be something else in his sinuses like mycoplamsa, in which case clindamycin wouldn't do much, I think.)

[tj21]

1 hour ago, OCDandPANDASmama said:

-One concern I had with IVIG is the fact it has donor elements and I'm afraid it could transfer a virus or some illness not found to DD. Am I being paranoid about that?  Glad to hear it helped your DS!

-My DD skin picks as well but Drs said it's just a tic/habit, don't think her's is a compulsion.

Thank you very much for your response! 

-That is correct, like any blood product and as-yet undiscovered issue. So it's a matter of weighing different options and severity (bearableness) of whatever is going on. I always have the same hesitation before considering IVIG.

-What @jan251 said re. picking - whether labeled tic/habit or compulsion they're kind of the same.

[MomWithOCDSon]

OCD and PANDAS Mama -- Our successful antibiotic was Augmentin XR.

Regarding psych drugs, I agree with you completely in terms of working on the medical issues first as best you can.  We, too, initially had a psych who was all to willing to increase SSRI doses, add other meds, change meds, etc. at all too rapid a pace; like you, we trusted him because he was supposed to have the education and experience.  But I think some have either been at it way too long and are now just going through the motions, with a tendency to push whatever the pharm sales rep most recently dropped on them, or they just want to satisfy distressed parents who want SOMETHING that will help their kid be more functional or compliant or calm or all of the above.  I truly shudder when I realize what we put my DS's brain through, with this quacky psych messing with his medications as though there would be no repercussions.

Once we found PANDAS and started antibiotic treatment, we were able to find a psych who had some PANDAS knowledge, but more importantly, she was intellectually curious and kept up with ongoing research, etc.  So she was far more thoughtful and cautious in terms of treating DS and introducing or changing meds. 

I realize that implementing psych meds during or even following PANDAS medical treatment may "muddy the waters" in terms of completely addressing and/or eliminating the underlying culprit, but we chose our path because our DS was older, had been dealing with all of this longer, and wanted his functionality back almost as much as we wanted it for him.  So the psych meds were an important part of that for us.  If you decide to return to that route at some point, I would just encourage you to not be shy in interviewing prospective psychs; make a list of pointed questions to go in with, and get some answers.  And then you and DD be proactive and participatory in any treatment you undertake in the future, rather than just accepting that because they have a certificate on their wall, they have all the answers.  Clearly, they don't.  As my dad used to say, "They call it 'practicing medicine' because they're practicing on US!"

All the best!