I have been told only 1 IVIG

[norcalmom]

yes - it looks tic-ish to me too. So mild though. I was at a basball tournament this weekend, and three of the other boys on the team(besides my son) had tics (out of 14 kids), two eye blicks(one with facial twitch) and one a head strech. I'm sure they don't have pandas (well, I'm not actually, but I had to stop myself from approaching the other parents to tell them about tics,pandas and strep, because we are new to this team and I sound crazy..I'll feel them out when I get to know them a little better). it kinda funny, when the kids get up to bat, they ALL have these little tics or rituals they do..so they can feel "just right" before they take a swing. One kid turns is bat, round and round (like unscrewing a jar until just about to swing), one slaps his helmet twice, my son adjusts his batting gloves (every pitch) (he used to have SEVERAL rituals driving coaches, pitchers and umps crazy!)

 

Our son also got better with antibiotics (and continues on full strength azithromycin) - he got better, but not all better. and as time passed (and after every cold he cuaght), he would add a symtpom to his baseline, making his baseline worse and worse. He was still functioning fairly well, but but our "normal" was not normal anymore.

We are only 7 weeks post, and he had a cold a few days ago (still has it a little) and a very busy/stressful weekend, so a pandas-y few days here.

[melanie]

Although you may think your right with the IV dosages and danny may need a higher dosage we are ok right now with his treatment .Who by the way Dr J has treated probably 10,000 or more patients in her lifetime.I have spoken to Dr K and think he is a wonderful MD.I have seen Dr T and Dr B ,both who think that hes doing the right thing. I still havent heard from anyone who has been treated with higher dosages that is cured for more than a few months sooooo

 

 

Have a nice day

 

melanie

[Megs_Mom]

We had our visit with Dr. M today for evaluation of my son's condition and for him to begin a study they are conducting on sudden onset of OCD/Tic symptoms and tx with a specific antibiotic vs. tx with a placebo. Of course we won't know which we are getting but either way, after reading all the posts....I beginning to wonder if any kids get better with antibiotics alone or in most instances is an IVIG required? Although his titers were within range but at the high end of normal, he has all the symptoms of Pandas, sudden onset of Tics/OCD, chronic sickness up until the last couple of years, etc. Has anyone here had significant success with just antibiotics alone?

 

Thanks!

I think a lot about that question, as our daughter is still abs only. She had 4 exacerbations before treatment, we were unable to find treatment, so used ERP. She would remit 80%, baseline steadily increasing, each exacerbations lasting about 3-4 months. Very severe OCD. Azithromyacin was really miraculous for us. We continued ERP as well, but the azithromyacin was a turning point. While we would do ivig if needed, we are now a year out, and holding at 99% with very small blips. I second the idea that if caught early, abs may be enough. And for some kids, it seems to work as well, even later, like mine. I think a lot of those parents leave the forum, and only rarely post. But i am not terribly opinionated about this, we continue to be open to what life may bring, although I pray daily for normal to continue.

 

She did improve to 95% in about a month or two, then with steady improvement over the next 6.

[MomWithOCDSon]

We had our visit with Dr. M today for evaluation of my son's condition and for him to begin a study they are conducting on sudden onset of OCD/Tic symptoms and tx with a specific antibiotic vs. tx with a placebo. Of course we won't know which we are getting but either way, after reading all the posts....I beginning to wonder if any kids get better with antibiotics alone or in most instances is an IVIG required? Although his titers were within range but at the high end of normal, he has all the symptoms of Pandas, sudden onset of Tics/OCD, chronic sickness up until the last couple of years, etc. Has anyone here had significant success with just antibiotics alone?

 

Thanks!

I think a lot about that question, as our daughter is still abs only. She had 4 exacerbations before treatment, we were unable to find treatment, so used ERP. She would remit 80%, baseline steadily increasing, each exacerbations lasting about 3-4 months. Very severe OCD. Azithromyacin was really miraculous for us. We continued ERP as well, but the azithromyacin was a turning point. While we would do ivig if needed, we are now a year out, and holding at 99% with very small blips. I second the idea that if caught early, abs may be enough. And for some kids, it seems to work as well, even later, like mine. I think a lot of those parents leave the forum, and only rarely post. But i am not terribly opinionated about this, we continue to be open to what life may bring, although I pray daily for normal to continue.

 

She did improve to 95% in about a month or two, then with steady improvement over the next 6.

 

I am happy to report that we, too, are having great success with abx alone. We, too, still have some blips and we are great believers in ERP as our DS's OCD was at an all-time high a year ago this time, before we found PANDAS and began abx. He'd had the condition at least 6 years before we tried abx, and probably longer. But we kept him on full-dose Augmentin XR for just under a year, and he continued to make strides, despite some saw-toothed setbacks now and again. Today, he's in school (8th grade), back in his gifted classes, knocking things out of the park academically, and laughing and having fun on a daily basis. The only real remnants of the condition we continue to see today is homework pace (like molasses running uphill in the dead of winter, frankly) and some scrupulosity (very concerned with "doing the right thing" and "saying the right thing"). But the contamination concerns and general anxiety that had crippled him have essentially evaporated (knock on wood).

 

Today, we've halved the XR dose and we hold our breath to see how he fares as a result. From historical experience, it's a bit too early to tell (usually 8 to 10 days is the tipping point, and we're only 5 days out as of now), but we are hopeful that he's back in balance, finally. In the end, I continue to believe that time is an essential element in our kids' recovery.

Edited September 28, 2010 by MomWithOCDSon

[Megs_Mom]

Hi Nancy - I am so glad to hear an update on your story! That is so encouraging, after he has suffered so long. It really makes me wonder (even more) about so many of the children at the conference.... I tend to credit the tipping point in our story to abx - but with credit as well to time & hard work.

[EAMom]

Although you may think your right with the IV dosages and danny may need a higher dosage we are ok right now with his treatment .Who by the way Dr J has treated probably 10,000 or more patients in her lifetime.I have spoken to Dr K and think he is a wonderful MD.I have seen Dr T and Dr B ,both who think that hes doing the right thing. I still havent heard from anyone who has been treated with higher dosages that is cured for more than a few months sooooo

 

 

Have a nice day

 

melanie

 

But not 10,000 PANDAS patients? That would be an incredible amount.

 

There ARE kids that have been "cured" (I prefer the term "long term remission"--I think "cure" is overly optimistic and simplistic when referring to PANDAS ) with 1 or 2 high dose IVIG's.

Diana's P.'s son has been back to 100% for quite a while (her son had 2 high dose IVIG's many months apart.) And here is a recent post by PANDAS_chicago http://www.latitudes.org/forums/index.php?showtopic=9893&start=0&p=83074&fromsearch=1entry83074 And don't forget the kids in Swedo's original study. Those kids are now off to college...although 1 or 2 have posted here in the past. Keep in mind that many of the successes don't post regularly any more, so we just don't hear about them on this forum.

[EAMom]

We had our visit with Dr. M today for evaluation of my son's condition and for him to begin a study they are conducting on sudden onset of OCD/Tic symptoms and tx with a specific antibiotic vs. tx with a placebo. Of course we won't know which we are getting but either way, after reading all the posts....I beginning to wonder if any kids get better with antibiotics alone or in most instances is an IVIG required? Although his titers were within range but at the high end of normal, he has all the symptoms of Pandas, sudden onset of Tics/OCD, chronic sickness up until the last couple of years, etc. Has anyone here had significant success with just antibiotics alone?

 

Thanks!

I think a lot about that question, as our daughter is still abs only. She had 4 exacerbations before treatment, we were unable to find treatment, so used ERP. She would remit 80%, baseline steadily increasing, each exacerbations lasting about 3-4 months. Very severe OCD. Azithromyacin was really miraculous for us. We continued ERP as well, but the azithromyacin was a turning point. While we would do ivig if needed, we are now a year out, and holding at 99% with very small blips. I second the idea that if caught early, abs may be enough. And for some kids, it seems to work as well, even later, like mine. I think a lot of those parents leave the forum, and only rarely post. But i am not terribly opinionated about this, we continue to be open to what life may bring, although I pray daily for normal to continue.

 

She did improve to 95% in about a month or two, then with steady improvement over the next 6.

 

I am happy to report that we, too, are having great success with abx alone. We, too, still have some blips and we are great believers in ERP as our DS's OCD was at an all-time high a year ago this time, before we found PANDAS and began abx. He'd had the condition at least 6 years before we tried abx, and probably longer. But we kept him on full-dose Augmentin XR for just under a year, and he continued to make strides, despite some saw-toothed setbacks now and again. Today, he's in school (8th grade), back in his gifted classes, knocking things out of the park academically, and laughing and having fun on a daily basis. The only real remnants of the condition we continue to see today is homework pace (like molasses running uphill in the dead of winter, frankly) and some scrupulosity (very concerned with "doing the right thing" and "saying the right thing"). But the contamination concerns and general anxiety that had crippled him have essentially evaporated (knock on wood).

 

Today, we've halved the XR dose and we hold our breath to see how he fares as a result. From historical experience, it's a bit too early to tell (usually 8 to 10 days is the tipping point, and we're only 5 days out as of now), but we are hopeful that he's back in balance, finally. In the end, I continue to believe that time is an essential element in our kids' recovery.

 

Hmmm. I wonder if there is something about "older" (meaning 11-13) boys with primarily OCD doing well on antibiotics alone? You son reminds me a bit of "Saving Sammy" (he was 11 at the time) and had primarily OCD.

Edited September 28, 2010 by EAMom

[EAMom]

I still havent heard from anyone who has been treated with higher dosages that is cured for more than a few months sooooo

 

Our dd's first IVIG (Aug 09) put her in "remission" for 6 mo. (until she got a viral illness). Some symtpoms did "stay in remission" (severe OCD, margins issues) but others didn't (mood, "movements", anxiety). With the second, it it probably too early to say, since it was only 4mo. ago...but so far it still seems to be working.

 

She does have a couple of minor/infrequent (nothing that the average person would notice) "movements" (maybe tics or compulsions?) that didn't go away with the 2nd IVIG. And she also has some academic issues (math facts, spelling, handwriting) that may or may not be entirely PANDAS. With her learning issues, I don't actually think PANDAS is the whole story, so I wouldn't expect IVIG to necessarily fix that, especially within a matter of a few months...although it would be really nice if it did!

 

If she ends up needing a high dose IVIG every 6mo. to keep OCD/tantrums/anxiety at bay, well, I'm am okay with that and would still consider it an effective treatment.

Edited September 28, 2010 by EAMom

[EAMom]

I should also add, that when 1-2 high dose IVIG's doesn't work, it often turns out there is an additional underlying problem ( lyme or a strep carrier in the household or immune def. ).

[MomWithOCDSon]

Hmmm. I wonder if there is something about "older" (meaning 11-13) boys with primarily OCD doing well on antibiotics alone? You son reminds me a bit of "Saving Sammy" (he was 11 at the time) and had primarily OCD.

I completely agree. In fact, it was Sammy who set me definitively on the PANDAS path, after having had my PANDAS inquiries repeatedly waved off in the early years of our DS's OCD diagnosis.

 

The more I read families' stories here, as well as some of the research (most notably Cunningham's), the more convinced I become that OCD-predominant PANDAS and tics-predominant PANDAS may ultimately be found to have different ideal treatment protocols and recovery trajectories. If (and I suspect there is) a genetic component to each condition with infection serving as the "trigger," it seems entirely possible that getting at that trigger and abating the condition will require treatment "tweaked" to the basis of the condition itself, including the innate genetic component, doesn't it?

[Worried_Dad]

I am happy to report that we, too, are having great success with abx alone. We, too, still have some blips and we are great believers in ERP as our DS's OCD was at an all-time high a year ago this time, before we found PANDAS and began abx. He'd had the condition at least 6 years before we tried abx, and probably longer. But we kept him on full-dose Augmentin XR for just under a year, and he continued to make strides, despite some saw-toothed setbacks now and again. Today, he's in school (8th grade), back in his gifted classes, knocking things out of the park academically, and laughing and having fun on a daily basis. The only real remnants of the condition we continue to see today is homework pace (like molasses running uphill in the dead of winter, frankly) and some scrupulosity (very concerned with "doing the right thing" and "saying the right thing"). But the contamination concerns and general anxiety that had crippled him have essentially evaporated (knock on wood).

 

Today, we've halved the XR dose and we hold our breath to see how he fares as a result. From historical experience, it's a bit too early to tell (usually 8 to 10 days is the tipping point, and we're only 5 days out as of now), but we are hopeful that he's back in balance, finally. In the end, I continue to believe that time is an essential element in our kids' recovery.

 

Hah - our sons seem to be on parallel paths, Nancy! Our ds is also back to school now for the 1st time in 3 years, after almost a year on the Saving Sammy dose of XR. He missed all of middle school and had to jump right into high school (gulp!), but he's doing fine so far (only 3 classes for now). But - like you mention - his one residual symptom is... homework pace. (VERY slow compared to the old days, but what he completes, he does well. We've told him not to worry about it and get done as much as he can. We're just ecstatic that he's attending public school again!)

 

We haven't had the guts to lower his augmentin dose yet. Partly because the rest of the family still all have elevated ASO, even after a month of clindamycin for all of us. Please let us know how the dosage reduction goes for your ds, because we'll likely follow in your footsteps once we get rid of the "strep epidemic" in our house.

[Worried_Dad]

Interesting theory, but our ds's experience muddies the waters a bit. When he 1st became ill, he showed virtually no OCD (at least that we recognized). His main symptoms were migratory polyarthritis, muscle weakness, difficulty walking, seizure-like chorea episodes that evolved into tics, and cognitive fog. (Definitely some emotional lability, too.) Most docs considered him more Tourette's or "transient tic disorder" at that point, and nobody mentioned OCD. Then his 2nd big exacerbation hit, and overnight he turned into the "OCD-predominant" variety of PANDAS with the classic symptoms for that (massive contamination fears, anxiety, anorexia, urinary urgency, rages, crying jags, etc.). Third exacerbation was more of the same, so exacerbations 2 and 3 were completely unlike #1.

 

To us, it sure feels like this is all part of a spectrum, and symptoms vary from flare to flare based on which part of the basal ganglia bears the brunt of the inflammation? Don't know. But docs like Dr. L felt that his initial symptoms were more SC, whereas his later symptoms were clearly PANDAS.

 

This disorder is so damned slippery!!!

 

 

Hmmm. I wonder if there is something about "older" (meaning 11-13) boys with primarily OCD doing well on antibiotics alone? You son reminds me a bit of "Saving Sammy" (he was 11 at the time) and had primarily OCD.

I completely agree. In fact, it was Sammy who set me definitively on the PANDAS path, after having had my PANDAS inquiries repeatedly waved off in the early years of our DS's OCD diagnosis.

 

The more I read families' stories here, as well as some of the research (most notably Cunningham's), the more convinced I become that OCD-predominant PANDAS and tics-predominant PANDAS may ultimately be found to have different ideal treatment protocols and recovery trajectories. If (and I suspect there is) a genetic component to each condition with infection serving as the "trigger," it seems entirely possible that getting at that trigger and abating the condition will require treatment "tweaked" to the basis of the condition itself, including the innate genetic component, doesn't it?

[MomWithOCDSon]

Interesting theory, but our ds's experience muddies the waters a bit. When he 1st became ill, he showed virtually no OCD (at least that we recognized). His main symptoms were migratory polyarthritis, muscle weakness, difficulty walking, seizure-like chorea episodes that evolved into tics, and cognitive fog. (Definitely some emotional lability, too.) Most docs considered him more Tourette's or "transient tic disorder" at that point, and nobody mentioned OCD. Then his 2nd big exacerbation hit, and overnight he turned into the "OCD-predominant" variety of PANDAS with the classic symptoms for that (massive contamination fears, anxiety, anorexia, urinary urgency, rages, crying jags, etc.). Third exacerbation was more of the same, so exacerbations 2 and 3 were completely unlike #1.

 

To us, it sure feels like this is all part of a spectrum, and symptoms vary from flare to flare based on which part of the basal ganglia bears the brunt of the inflammation? Don't know. But docs like Dr. L felt that his initial symptoms were more SC, whereas his later symptoms were clearly PANDAS.

 

This disorder is so damned slippery!!!

 

Oh you and your muddy water! But you're right . . . another one of my entirely-personal-non-scientifically-based-whack-a-mole theories shot to heck by your DS's case! I guess that's just another reason why I won't be getting the Nobel for Science any time soon.

 

Interesting, though, especially in light of the fact that Cunningham has noted some specific differences in terms of D1 and D2 receptor elevations between kids with different behavioral symptoms. But then, I guess inflammation could play into any and all of that, and the impact may even move around based not only upon genetics, but maybe developmental stage as well? Would make some sense in light of the fact that some PANDAS symptoms seem more transient, while other "stick."

 

And even in the OCD world, my DS's compulsions and obsessions are constantly "shape-shifting" in terms of focus, though the severity seems to be tied to infection or re-exposure.

 

You got that right . . . damned slippery!!!

 

We'll be sure to let you know how it goes on the reduced XR; we just figured it was time, and I really am both curious and hoping that we've reached the point now where any impact would be nominal, if it manifests at all. Day 5 and counting . . . . .

[nevergiveup]

Eamom,

There are several children on this forum receiving one gram per Kilogram, every 21 days and all are seeing improvement. I would like to point out that autoimmune doses of ivig used for lupus, ms, cipd, and autism, done by the leading immunologists in this country looks at igg trough levels and symptoms. Some kids have symptom remission at 1700 some at 1900 some 2000. Keeping the igg trough levels consistently at a an autoimmune level keeps autoimmune symptoms gone. The real half life of ivig is 21 days, according numerous studies done by our Bone Marrow Transplant Division at our childrens hospital. I know swedo and Dr K do one dose high, and Dr B does high every 8 weeks but some kids don't have an infection anymore, and have a chronic state of making antibodies and need to be treated as such. Melanie, can chime in if she wants, I know her doc has success stories too. Swedo and Dr K and Dr L talk about their success with the younger children, not as much success with older or more chronic children. Many on this forum know of only the one dose or intermittent dose theory, I think the autoimmune dose like for adem or lupus makes sense, and I know of four children whom after getting their trough levels up to the right levels, saw complete symptom remission(for 8 years plus), some are now in college. If you want a comparison disease its like guillion barre, first attack needs PEX or one ivig. Second third attack, disease is chronic and then igg levels need to be maintained at 2000 to see symptom remission. One thing is for sure, we need the immunologists and rheumotologists talking with the Cunningham becuz I believe that one ivig may work, but if not this disease needs to be treated like a chronic autoimmune disorder.

[nevergiveup]

For all of the Dr B patients, check your kids trough levels see if they match symptom remission. This means get weekly igg level after ivig for the 10 weeks post ivig. Watch for symptoms returning from your children. This will help u determine what trough level your child needs to redirect antibodies. Then adjust dosing frequency and volume to best minimize side effects. It takes up to six months of ivig to start to see this pattern, initial doses, first dose this should not be done, stary this process around the third dose of ivig. My dd had a clear pattern of symptom remission and resurgence after 9 days of ivig each month.