Try 2nd IVIG or long term Psychiatric meds ?

[Burnell]

Hello all, my daughter had an IVIG in May thru the NIH study. She improved so much in June; her OCD went from 6 hours a day to 30 minutes a day. At night it went from 2-3 hours of compulsions to 10 minuets. By July the OCD cam back. She now spends 2 hours a night on compulsions and about 4 hours a day on compulsions.

We have seen many Dcts who suggesteda 2nd and possibly a 3rd IVIG. We saw Dr. Murphy at Dr Storch’s USF program for OCD in August, and recently saw Dr. Smith and talked to Dr T.

Our dd 12 has been on anti-biodics (augmentin, amoxacillan, zith, biaxin) for a year and celexa (SSRI drug) for a year now.

I know IVIG are very expensive and torn between the hope and chances of multiple ivig leading to lasting miracle versus the alternate of a lifetime of psychiatric medications.

Have any of you had success reducing OCD compulsions after multiple ivig’s?

Have the gain made been kept long term?

Has anyone tried Lexipro or Ativan (lorazepan) to battle the OCD?

[EAMom]

I would repeat the IVIG. Some of the other PANDAS docs (Dr. B, Dr. Latimer) do multiple IVIG's right off the bat, they don't expect to cure PANDAS with a single HD infusion.

 

Do you have any idea what may have triggered the relapse?

 

My dd is 11 (6th grade) and has had 3 HD IVIG's (2 in 4th grade, 1 last July before 6th grade). She's also on daily Azith 250mg/day. Basically, our immunologist is willing to okay more IVIG's with further relapses, since has been effective in the past. PANDAS dd has relapsed with viral illnesses, as well as exposure to strep in family members, but has not gotten strep herself since starting Azith (at age 7, end of 2nd grade). Btw, our immunologist felt that IVIG was safer than most psych. drugs.

 

Will the study repeat IVIG for you? I know the original Swedo study did repeat infusions for relapses.

 

BTW, my pandas dd was on Lexapro and Ativan when first diagnosedd with PANDAS anorexia (age 7, hospitalized for 6 days for acute food refusal, malnutrition) and she reacted badly to those meds. She actually got serotonin syndrome and akathesia. Currently, she is on a low dose of Prozac, that seems okay for her. No other psych. drugs.

 

We've also recently started on NAC (to modulate glutamate). Her OCD now is manageable, but still present. I think she is a more severe case of PANDAS. When we submitted her CaM kinase 11 to Dr. Cunningham when she was in an exacerbation, her levels were in the high SC range, the highest Dr. C. had ever seen.

Edited September 20, 2011 by EAMom

[dcmom]

Burnell-

 

So sorry your daughter is suffering.

 

Do you know what may have caused the relapse?

 

Results seem somewhat individual. Some parents find help in routine IVIG infusions. We have not done IVIG at this point, so I cannot comment, although we did PEX which resulted in a remission of about a year, and then a subsequent relapse.

 

My suggestion would be to try to treat the pandas mechanism aggressively, and then if needed supplement with psych meds. My reason for saying this, is that we have found in our kids, pandas can cause much more than ocd. It can cause physical, emotional and cognitive symptoms. A psych med most likely won't address all of these.

 

Since you were in the study, I would think you are fairly confident in your diagnosis. I can tell you, one treatment that has been really helpful to us in the last year is IV solumedrol (steroids), for two days, at a fairly high dose. It is cheaper and more readily available than IVIG. It seems to turn off the autoimmune mechanism.

 

I think the word "cure" is misleading. IMHO, IVIG, pex and other treatments can put the child into remission, but not necessarily be a cure. Therefore, if there is a new trigger, there is a pandas relapse. We have found it really important to have a game plan for these potential relapses (which is not always easy).

 

We did try zoloft when we had residual OCD post steroids. It didn't help, although our dose was very low. ERP was significant in getting rid of the residual ocd. I know you have done that- have you contacted USF?

 

My thoughts are with you....

[mama2alex]

I don't know your history, but I don't think those are necessarily your only two options. Have you had her tested for chronic infections that could be causing the symptoms - mycoplasma, staph, Lyme/coinfections, continuing strep infection, chronic viruses, etc? We had two IVIG's without lasting success, but have found continuing (incredible) improvement by treating specific infections for the last year. I just reread "Saving Sammy" and realized that Sammy was on high dose antibiotics for about 4 years before he was symptom-free and able to remain so without the antibiotics. So he obviously had very stubborn chronic infection(s) going on. This is one more thing you can consider.

[amyjoy]

also i would just chime in that the psych meds don't usually work with our kids the same way, because their PANDAS symptoms are due to inflammation and not necessarily the kind of chemical imbalances that cause OCD.

[tpotter]

We've had good results with multiple IVIG, and plan to do it as long as we need to, and as long as we can get insurance to pay. We tried stopping for 3 months, while continuing treatment for Lyme and co- (along with PANDAS), and we are starting to relapse. As EAMom mentioned, this is not a cure, as many of us have found (although some have not seemed to relapse after 1 or 2, it does not seem to be the majority.) We are continuing with Lyme tx, and everything else (including viruses that we have now found) that creep up, but I do believe that also treating the autoimmune component is critical for function (at least for my son.)

 

We do not use psych meds, and OCD has been helped dramatically with just the PEX (we had first) and IVIG.

[EAMom]

IMHO,using just using psych. drugs, without addressing underlying infection/autoimmune dysfunction (with antibiotics, IVIG, etc.) isn't appropriate for PANDAS children (despite what the NIMH website says).

 

However, I do think it's reasonable, to *carefully* explore certain psych. drugs in addition to treating the underlying cause of PANDAS (with antibiotics, IVIG etc). If you do choose to use them, be very cautious about doses (keep them low) and be very careful about using multiple psych. drugs. PANDAS kids are known to be sensitve to SSRI's and there are many stories on this forum of kids that have had adverse reactions to various psych. drugs. My own dd's adverse reaction to psych. drugs were difficult to tell from the PANDAS symptoms (aggression, irritability, disinhibition) themselves, which really complicated things for us (years ago).

 

Note: as an aside, it is possible that some pysch. drugs may also help with inflammation (or perhaps modulate glutamate?). For example, Prozac is supposed to be anti-inflammatory. But, I wouldn't expect Prozac (for example) in of itself to be an effective sole treatment for full-blown PANDAS (just as I wouldn't expect Advil to an effective sole treatment).

[Burnell]

Our new psychatrist has recommended Lexipro and Risperisdol to bring down the anxiety.

 

The intensive CBT we did for 3 weeks helped too, but I thought, and now the new psycologist thinks that she needs meds to help get the anxiety under control

 

We are still considering IVIg. would be 1-2 months out anyway. Are testing her for yeasts and may put her on an anti-fungal if they come back as such.

[T_Mom]

Hi Burnell (posted this in a different thread and moving it here)-- I am sorry to hear of the ups and downs your dd has had post-infusion. (Do you know for sure that she got the IVIG in the study???)

 

I would be curious as to what you are thinking about doing next?

 

Will NIH keep following you? -- would you mind sharing how NIH is following the kids post-infusion? Do they do weekly "check-ins" or are parents completing behavior rating scales, and for how long post-infusion? What constitutes "success" of IVIG ...changes at 6 month changes, one year?

 

Who would you say is treating/following your dd now? NIH, Dr. T, or Dr. M.?

I would guess it is not a Pandas treating doctor recommending the psych drugs at this time -- Have you decided Pandas is not the real issue?

 

My dd (almost 12) had IVIG in May too (not with NIH), and while we have had some ups and downs, the effects were almost immediately evident and there has been obvious progression and shedding of ODD and OCD behaviors (she was very severe.) I wonder too about the follow-up re: which abx. you are using.

 

My d weighs 75 lbs and is on azithro 250mg a day, 1000 omega EPA, continuously, and she received some IV steroids the last day of the IVIG (Gammunex IVIG.) She is doing much, much better. Personally, we would do IVIG again if needed, as we are sticking with the Pandas treatment regime as we have seen results.

 

If the anxiety is inflammation, then I would really would want to see a Ps doc. for treatment of the issues your d is facing.

Edited September 22, 2011 by T.Mom

[writergal]

Which psych drugs have you tried- Have you gotten any relief with drugs that modulate glutamate? You know that with PANDAS the basal ganglia region of the brain is not functioning correctly, so I think your best bet pharmaceutical wise would be RTMS. It basically shut's off and rewires your brain so that it can work correctly again. Also, perhaps a pharmaceutical grade anti-inflammatory because you know there's an infectious trigger and you know that infections cause inflammation. That won't cure you but it will most likely allow you to live a semi normal life in less than 3 months time.

 

My personal opinion with PEX and IVIG is that they only half get at the problem although they are very helpful short term. If you're going to kind of make the jump and say okay I don't have a chemical imbalance- I have an autoimmune disease then there's a lot to look at- heavy metals, leaky gut etc. Maybe look at chronic infections too- but I think what more should be looked at is "what's allowing these chronic infections to wreck such havoc?" If you look at PANDAS on the surface you can say okay, strep causes PANDAS- but from a logical perspective, why would just one infection cause your entire immune system to attack your brain. Something is severely wrong/out of balance. I think the key is finding what that is. If you're going to really "fix" the problem and not put a pharmaceutical band-aid it will probably take a lot of time. By the time autoimmunity happens, a heck of a lot is not right. Just my opinion.

 

 

I agree with your assessment that there is something going on that allows the body to develop an autoimmune disease. Prior to discovering 2 months ago that our son had PANDAS we had been working on detoxing his system and we've been working on healing his gut for 4 years. Now finding out that we have to put him on antibiotics to get some what "normal" behavior has been difficult. We're working in tandem with a doctor that is very aware of the gut and wanting to make sure we don't end up with yeast issues.

 

What have you done to help with the underlying issues?

 

Julie

[writergal]

The gut healing did not bring back normal behavior?

 

No- as we haven't been able to fully heal the gut.

[Burnell]

Hi Burnell (posted this in a different thread and moving it here)-- I am sorry to hear of the ups and downs your dd has had post-infusion. (Do you know for sure that she got the IVIG in the study???)

 

I would be curious as to what you are thinking about doing next?

 

Will NIH keep following you? -- would you mind sharing how NIH is following the kids post-infusion? Do they do weekly "check-ins" or are parents completing behavior rating scales, and for how long post-infusion? What constitutes "success" of IVIG ...changes at 6 month changes, one year?

 

Who would you say is treating/following your dd now? NIH, Dr. T, or Dr. M.?

I would guess it is not a Pandas treating doctor recommending the psych drugs at this time -- Have you decided Pandas is not the real issue?

 

My dd (almost 12) had IVIG in May too (not with NIH), and while we have had some ups and downs, the effects were almost immediately evident and there has been obvious progression and shedding of ODD and OCD behaviors (she was very severe.) I wonder too about the follow-up re: which abx. you are using.

 

My d weighs 75 lbs and is on azithro 250mg a day, 1000 omega EPA, continuously, and she received some IV steroids the last day of the IVIG (Gammunex IVIG.) She is doing much, much better. Personally, we would do IVIG again if needed, as we are sticking with the Pandas treatment regime as we have seen results.

 

If the anxiety is inflammation, then I would really would want to see a Ps doc. for treatment of the issues your d is facing.

 

Nih is all done. Dr. M is all done. We saw Dr Smith a few weeks ago in NJ. Smith, M and NIH all think we should haev another ivig done.

we are having more testing done.

The IVIG in May knocked out 80% of her OCD in June. But is July it all cam back and much worse.

ABX we have tried are amoxacillan, augmentin, augmentin XR, zithromicin, and biaxin.

the psych meds haev helped but only maybe lowered the OCD by 20%, she is not having panic attacks but still has lots of OCD.

[Dedee]

Hi Burnell,

 

I know you struggle with what you should do next for your daughter. It is such a tough call. My oldest son took celexa for years for his OCD because back then there was little known about PANDAS and all they knew to do was treat the symptoms. He did well on the celexa but did gain quite a bit of weight which he is just now loosing. We were able to finally wean the celexa after he had a T& A at the age of 11 and finally started the daily antibiotics. I think that Lexapro is very similiar to celexa but has fewer side effects. If she needs that now to help through this difficult time, that is ok. You can wean it off after things settle down. SSRI's aren't for every situation, but in some cases it is necessary for a period of time. Don't get caught up thinking it has to be for the rest of her life. Personally, I think she would benefit from another IVIG. She may even have to have two. She needs an aggressive approach (JMHO) and I think eventually you will get to a place where you will be able to wean some or all of the meds off very gradually. I took about three months to wean my son off of celexa. SSRI's can be very difficult to wean, so you just have to be patient, have a plan and move slowly. I had a physician who used to practice psychiatry but now is a family practice tell me a way to wean SSRI's that works beautifully and practically no side effects. Just takes some time.

 

Anyway, do you have any assistance from insurance? Have you checked on PEX? In your situation, I wouldn't hesitate to look into that. Did Dr. T say anything about that? I am considering taking my son to Dr. B in a few months if things don't settle down with him. I tend to lean toward aggressive treatment, but thats just my nature as a nurse. We are getting back into a local CBT program. The florida program was great but my daughter has started loosing some of her skills. As far as her IVIG, she seems to be gradually improving every day. When I look back to pre-IVIG I can really see the gains. It just hasn't been dramatic, just more baby steps. But over time it adds up. She is doing things she hasn't done in a long time. I can see the benefits. She still has a way to go, but we are only 8 weeks out, so I think we still have some gains to see yet. I won't hesitate to do another IVIG after the holiday's if I need to. We are changing insurance in January, so I am hoping we may get a little insurance assistance if we need to do it again. Remember it has taken 2 IVIG's for us to see much gain, so it would not be unusual for your daughter to need another one as well.

 

So I have given you my input. I hope you get some relief with your daughter soon. I know this has been so hard on your family and you have worked very hard to find an answer for her. Again, I don't think you have to get caught up in thinking psych meds have to be long term. Sometime they can be a life preserver till you can get out of the storm. There is no shame in using it if you need to. We did with my son when he was six and he took it for several years. Now he is 16 and off all meds and only takes antibiotics and supplements. It doesn't have to be forever. Take care and best of luck.....

 

Dedee

[eljomom]

Pandas16...very interesting!----quoting "Maybe look at chronic infections too- but I think what more should be looked at is "what's allowing these chronic infections to wreck such havoc?"

 

We just saw a local immunologist (who trained at NIH, but didn't know who Sue Swedo is), and I asked him some questions, one being testing for chronic infections. He said "I'm not going to chase down infections....I want to know WHY she has HAD pneumonia 4 times, and WHY it is causing autoimmune issues." Praying maybe this guy actually is onto something for us. I wish I'd seen waht all he was testing, other than what I heard him say (NK cells, T, B, c3, c4....)

 

 

Which psych drugs have you tried- Have you gotten any relief with drugs that modulate glutamate? You know that with PANDAS the basal ganglia region of the brain is not functioning correctly, so I think your best bet pharmaceutical wise would be RTMS. It basically shut's off and rewires your brain so that it can work correctly again. Also, perhaps a pharmaceutical grade anti-inflammatory because you know there's an infectious trigger and you know that infections cause inflammation. That won't cure you but it will most likely allow you to live a semi normal life in less than 3 months time.

 

My personal opinion with PEX and IVIG is that they only half get at the problem although they are very helpful short term. If you're going to kind of make the jump and say okay I don't have a chemical imbalance- I have an autoimmune disease then there's a lot to look at- heavy metals, leaky gut etc. Maybe look at chronic infections too- but I think what more should be looked at is "what's allowing these chronic infections to wreck such havoc?" If you look at PANDAS on the surface you can say okay, strep causes PANDAS- but from a logical perspective, why would just one infection cause your entire immune system to attack your brain. Something is severely wrong/out of balance. I think the key is finding what that is. If you're going to really "fix" the problem and not put a pharmaceutical band-aid it will probably take a lot of time. By the time autoimmunity happens, a heck of a lot is not right. Just my opinion.

[eljomom]

What kind of doctor are you seeing to heal the gut?

 

Which psych drugs have you tried- Have you gotten any relief with drugs that modulate glutamate? You know that with PANDAS the basal ganglia region of the brain is not functioning correctly, so I think your best bet pharmaceutical wise would be RTMS. It basically shut's off and rewires your brain so that it can work correctly again. Also, perhaps a pharmaceutical grade anti-inflammatory because you know there's an infectious trigger and you know that infections cause inflammation. That won't cure you but it will most likely allow you to live a semi normal life in less than 3 months time.

 

My personal opinion with PEX and IVIG is that they only half get at the problem although they are very helpful short term. If you're going to kind of make the jump and say okay I don't have a chemical imbalance- I have an autoimmune disease then there's a lot to look at- heavy metals, leaky gut etc. Maybe look at chronic infections too- but I think what more should be looked at is "what's allowing these chronic infections to wreck such havoc?" If you look at PANDAS on the surface you can say okay, strep causes PANDAS- but from a logical perspective, why would just one infection cause your entire immune system to attack your brain. Something is severely wrong/out of balance. I think the key is finding what that is. If you're going to really "fix" the problem and not put a pharmaceutical band-aid it will probably take a lot of time. By the time autoimmunity happens, a heck of a lot is not right. Just my opinion.

 

 

I agree with your assessment that there is something going on that allows the body to develop an autoimmune disease. Prior to discovering 2 months ago that our son had PANDAS we had been working on detoxing his system and we've been working on healing his gut for 4 years. Now finding out that we have to put him on antibiotics to get some what "normal" behavior has been difficult. We're working in tandem with a doctor that is very aware of the gut and wanting to make sure we don't end up with yeast issues.

 

What have you done to help with the underlying issues?

 

Julie