Has anyone found complete success with IVIG? How many treatments to ac

[fuelforall]

FYI, I have been told by another mom and by my doctor that if you don't see results of some benefit after 3 IVIG treatments, it may be best to think of switching to Pex or plasmapheresis.

 

Just throwing that into the pot.

[KeithandElizabeth]

fuelforall:

 

I think this also depends on the dosing of the IVIG. Dr. K was telling us that the smaller doses were not effective in shutting the bone marrow down so that the body produced new antibodies. Were your son's doses 1.5?

 

elizabeth

[laurenjohnsonsmom]

I believe the newer "trend" is to do the IVIG after plasmapherisis, instead of doing just plasmapherisis. (the IVIG puts the good antibodies in after you take them out with the pherisis). Although lots of people are seeing results with IVIG (one or more treatments), alone, without the need to do pherisis. Don't take my word, as I am not the doc (but I did stay at a Holiday Inn Select)!

 

I have had multiple parents tell me they did not have good sustained results when they just did pherisis, alone.

 

Might add that some people call PEX and plasmapheriss the same thing.

 

Lynn

 

FYI, I have been told by another mom and by my doctor that if you don't see results of some benefit after 3 IVIG treatments, it may be best to think of switching to Pex or plasmapheresis.

 

Just throwing that into the pot.

[Help4Sky]

We can't seem to get a definitive answer that IVIG works....most of the people that have reported success have only found success for a short period of time. The symptoms always seem to reappear. If that is the case, why the IVIG??

Is there anybody that has a symptom free child post IVIG?? If so, how long symptom free? What is the prognosis for long term?

 

We are contemplating the positives with the negatives for IVIG. Also, would like to hear the negative side affects so that we can see both the good and bad. Would love some answers, as we are perplexed which route to take.

 

We did 4 days of slow IVIG 5 weeks ago with great success. Not complete eradication of all motor tics, but with a much less anxious child who is now able to do the "normal" things in life like school, sports, and everyday showers without trauma. My son was diagnosed with PANDAS in September after we saw the sort of tics that became unmanageable and a new "side" of our son that was scary to say the least. We tried the antibiotics and they did settle down the behavior a little and helped with the head jerks, but the doctor recommended IVIG.

 

The only down side to the IVIG was that we could not do 4 days in a row, and needed a day off because of a sever head ache. And my insurance has yet to pay. I wasted valuable time trying to get the insurance to pay when I wish I had just been getting my son the IVIG!

 

The positive side was that it has helped in the OCD and ticks. We will do a "booster" dose once a month for the next few months. But, the doctors after seeing him a month post IVIG noted an improvement!!!

 

I will keep posting here after all the IVIG treatments to give you all input an information. Keep up the good fight for your children.

[mama2alex]

Just wanted to add our update to this thread. We are 8 weeks post-IVIG and I'd say our son is about 70% recovered. We saw nothing the first two weeks, then started to see some improvement in week 3. Then he got a cold and regressed again. Then we saw some slow improvements in anxiety, but were also seeing rages we hadn't seen in the past. I had just about decided that IVIG didn't work for us, but then the last two weeks we've seen some really good improvements. Much less anxiety in general, he rarely mentions a robber or says he's scared now, he's no longer jumping at benign house/outside noises. fears of being electrocuted, bombs or starting on fire are completely gone, single-minded focus on Pokemon is gone, checking for bombs/robbers is gone. There are still issues, but I feel more relaxed than I have in 9 months, so I know he's better. Stanford has basically cut us loose (that's a whole other story), so we are having a phone consult with Dr. K in two weeks (his first available appointment!). I believe Alex needs another IVIG and we will discuss this with Dr. K. I don't think we're out of the woods yet, but I am enjoying the improvements. We are also retesting him for Lyme and coinfections in a couple of weeks, as he tested positive for Bartonella in the summer. It's possible we've eliminated the strep but are still dealing with Lyme and/or Bartonella.

[sf_mom]

What a wonderful update..... so happy Alex is doing better. My motto 'expect nothing less than 100%'

 

-Wendy

 

Just wanted to add our update to this thread. We are 8 weeks post-IVIG and I'd say our son is about 70% recovered. We saw nothing the first two weeks, then started to see some improvement in week 3. Then he got a cold and regressed again. Then we saw some slow improvements in anxiety, but were also seeing rages we hadn't seen in the past. I had just about decided that IVIG didn't work for us, but then the last two weeks we've seen some really good improvements. Much less anxiety in general, he rarely mentions a robber or says he's scared now, he's no longer jumping at benign house/outside noises. fears of being electrocuted, bombs or starting on fire are completely gone, single-minded focus on Pokemon is gone, checking for bombs/robbers is gone. There are still issues, but I feel more relaxed than I have in 9 months, so I know he's better. Stanford has basically cut us loose (that's a whole other story), so we are having a phone consult with Dr. K in two weeks (his first available appointment!). I believe Alex needs another IVIG and we will discuss this with Dr. K. I don't think we're out of the woods yet, but I am enjoying the improvements. We are also retesting him for Lyme and coinfections in a couple of weeks, as he tested positive for Bartonella in the summer. It's possible we've eliminated the strep but are still dealing with Lyme and/or Bartonella.

[matis_mom]

My daughter will be having IVIG most likely next week with Dr. Bouboulis.

 

We are still discussing the dosage which will be either Dr. K's 1.5g/k total over two days or 2g/k over two days. We were schedule to have it through Georgetown/Dr. Latimer today but Dr. Latimer chose to abruptly cancel it on Saturday. (a longer story in which I care not to openly discuss on the forum at this time).

 

I can tell you that Dr. Trifiletti, Dr. Bouboulis and most recently Dr. K (Dr. B consulted with Dr. K via telephone today re: Lauren) all believe that Lauren has PANDAS. They all also believe that she may benefit from IVIG as Lauren's sneezing tic cut in half after day 6 of azith, the day we increased the zith from 250mg to 500mg. Lauren went from sneezing 25x a minute to 10-12x a minute. We than added a 5 day pred/steroid burst that caused some 3-4 minute pauses in between her sneezing tic, and she continued to improve through the end of the first 30 days of azith, plateauing (sp?) at 3-6x a minute. That's when we consulted with Dr. B. He switched Lauren to 875mg augmentin bid and put her on a super high 30 day tapered pred/steroid burst. He also suggested that we check the entire family for elevated aso titers (lauren's sister had just tested positive aso) and if found, treat as well with abx fir 30 days. We know our other, younger daughter is a carrier as she has tested positive by throat cultures many times, in the past, with no symptoms. My husband and I both cane back with positive aso/antiDnaseB titers as well which we were told could be the reason why Lauren plateaued on the azith because there was still active strep in the house. So, for those of you still reading this forever post, I will continue Chapter 2!

 

Lauren started the augmentin and heavy, tapered steroids on 12/23. The rest of the family started on 30 days of azith at the sane time. On Christmas eve Lauren started having 20+ minute pauses between her sneezing tic. I was delighted but cautiously optimistic. When Lauren steroids decreased in dosage we started losing her long pauses. Dr. T & Dr. B both said that everything that happened to Lauren just makes a better case of PANDAS and that there is inflammation in the brain but steroids and abx alone (mostly because you can take steroids forever) weren't going to fully eradicate the tick. That's why they have suggested IVIG.

 

I want to stress that we have been over cautious in how we treat/diagnose Lauren as to not put to many variables in place at once so we can understand what works and what doesn't, correctly diagnose and treat the best that the doctors know how to do for now. Because of the media attention surrounding Lauren this approach also makes sense.

 

So coco, there you have it! Hope I answered your questions and more!

 

Lynn

 

Laurenjohnsonsmom -- are you going to be doing ivig or plasmaexchange? You have seen/spoken with all the biggies, what's their recommendation? Sorry if I missed this in a prior post.

Thanks so much Lynn for all the details you included, your story sheds a lot of light into our particular situation. My ds12 is doing better on Augmentin XR, and was 100% back to normal after the month-long steroids, but he keeps sliding back every 30 days (almost exactly). I believe my dd7 is a carrier, but she is testing negative right now, and I am having a hard time convincing the pediatrician to test further. Did Dr. Boubolis order the bloodwork for you, or did you have to go through your pediatrician/GP? Also, do you know why they used Zith. for the rest of the family when they were treating the PANDAS child with Augmentin? I just wonder...

 

We are seeing an infectious disease specialist soon and are hoping she will tackle the "search for the culprit" in our family of 10!!!

 

Isabel

[Noah Mandel]

I apologize I have been away from this forum for so long. After our consult with Dr. K and not getting definitive answers regarding the IVIG back in Feb 2010, we continued treatment with abx, a hope and a prayer. It got us through for a while, but then a mild episode hit in the spring. We successfully treated with abx. But enough was enough. Before leaping into the unknown with IVIG we thought we would go the toncilectomy route. So, last summer, we decided to finally have the twins tonsils/adenoids removed, we had enough evidence that it might help. It kind of has...they don't have as many episodes however, the episodes seem to last longer than before tonsillectomy. Just before the surgery one twin complained of the "tell tale" sign that he was entering into a PANDAS episode. We proceeded with the surgery and right after the Tonsillectomy/Adenoidectomy he had an immediate full blown onset of his PANDAS. Important to note that the Dr. said his tonsils were filled with puss when he removed them. We treated with the usual course of abx. It passed, but took a bit longer to pass. This all happened within days of their beginning their Senior year of high school. The son that had the episode started AP Calc and AP Physics with c's and d's ended the quarter with A's in both, and was healthy the rest of the semester.

 

Fast forward to college apps and decisions being made and purchasing a new house and moving. I neglected this forum and wish I hadn't because I would have seen Lauren Johnson's mom's posts on the success of IVIG! So happy for your success and wish only for it to be everlasting!

All was under "control" in our life until this past August when the other twin came down with sinusitis and a PANDAS episode. It has lasted quite a while. We needed to pack up and leave for college (Out of state), what to do? It always passes, always. This time, it started to get better, under control, however a week into school, he came down with the flu and respiratory Virus or infection, not sure which. We had stopped the course of abx too prematurely, not on them long enough, perhaps not the right abx, it was disaster. We really didn't have a treating Dr. that knew enough about all this to consult us to continue or switch the abx. We picked him up from school, he is now on Medical leave from Emory University, until we get this resolved. This is the longest lasting episode to date. I think we are on week 6 or 7!

WE ARE READY FOR IVIG! I came back to the forum to see what has been posted and WOW! WE ARE READY. I called Dr. B's office we have an appt scheduled for late Oct. however, we need treatment now. Before I try to get in earlier we are trying to consult with a Dr. that will get him the IVIG local in WI.

 

By the way, the school was great working with us as far as IEP was concerned. They had never heard of it, however, they were willing to make the accommodations based on our Pysch. recommendations.

His twin is attending Wash. Univ in St. Louis and so far has been healthy. Wash U is also willing to accommodate our sons needs should an episode occur. We are praying that IVIG will help the one twin, so that if an episode with the other happens, we can get him the IVIG right away as well.

[amyjoy]

its been almost 10 months sinceDS15 has had ivig. its helped him tremendously but i can't call it a cure for him as of yet. he had a backslide over the summer. i have heard that coming up around 7 or 8 months post-ivig this happens alot. now the last couple of weeks, he is doing fantastic, better than ever. he says his coordination is drastically improving and his sleep is good, anxiety gone, ocd / intrusive thoughts minimal or absent, but the tics still flare and come and go although they are mild.

 

in our office, we have done ivig on maybe 10 children with pandas this past year. i am definitely seeing that the tics are harder to really clear. the psych manifestations seem to respond more readily. however we don't have any child treated with ivig for primarily tics with PANDAS for whom its been a full year since their treatment, and my understanding is that it can take that long for the treatment to fully manifest. so the jury is out.

[Burnell]

Our dd12 was in the NIH study in March- June 2011. She did her compulsiosn 6 hrs a day. In May she had an IVIG 2.o dose of gammmunex over 2 days. Weeks post ivig 1-3 were terrible. Weeks 4-7 were great. Maybe a 90% reduction in her OCD compulsions. Maybe 30 min a day. Then week 8 it crept back. By 10 weeks she was worse than before having it done. Back to 6 hrs a day and now has panic attacks.

 

We are considering an ivig again, but also waiting and giving lexipro and risperidol a try along with Cognative Behavioral Therapy. We just did 3 weeks of CBT in Dr Storch's OCD therapy at USF in St Petersburg FL where we also saw Dr Murphy. We have also seen Swedo, Grant, and Dr Triffeletti.

 

I would like to expand on the original question of this post and ask: HAs anyone with multiple ivig had any lasting success?

[T_Mom]

Hi Burnell-- I am sorry to hear of the ups and downs your dd has had post-infusion. (Do you know for sure IF 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 I wonder...6 month changes, one year?

 

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

 

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: abx. My d weighs 75 lbs and is on azithro 250mg a day, 1000 omega EPA, and I know she got also got some steroid intravenously the last day of the IVIG (Gammunex IVIG.) She is doing much better. Personally, we would do it again if needed.

[bmam]

The post above is not Noah, but rather his mother........bmam....oops, I didn't realize I was using his log in.....

 

I apologize I have been away from this forum for so long. After our consult with Dr. K and not getting definitive answers regarding the IVIG back in Feb 2010, we continued treatment with abx, a hope and a prayer. It got us through for a while, but then a mild episode hit in the spring. We successfully treated with abx. But enough was enough. Before leaping into the unknown with IVIG we thought we would go the toncilectomy route. So, last summer, we decided to finally have the twins tonsils/adenoids removed, we had enough evidence that it might help. It kind of has...they don't have as many episodes however, the episodes seem to last longer than before tonsillectomy. Just before the surgery one twin complained of the "tell tale" sign that he was entering into a PANDAS episode. We proceeded with the surgery and right after the Tonsillectomy/Adenoidectomy he had an immediate full blown onset of his PANDAS. Important to note that the Dr. said his tonsils were filled with puss when he removed them. We treated with the usual course of abx. It passed, but took a bit longer to pass. This all happened within days of their beginning their Senior year of high school. The son that had the episode started AP Calc and AP Physics with c's and d's ended the quarter with A's in both, and was healthy the rest of the semester.

 

Fast forward to college apps and decisions being made and purchasing a new house and moving. I neglected this forum and wish I hadn't because I would have seen Lauren Johnson's mom's posts on the success of IVIG! So happy for your success and wish only for it to be everlasting!

All was under "control" in our life until this past August when the other twin came down with sinusitis and a PANDAS episode. It has lasted quite a while. We needed to pack up and leave for college (Out of state), what to do? It always passes, always. This time, it started to get better, under control, however a week into school, he came down with the flu and respiratory Virus or infection, not sure which. We had stopped the course of abx too prematurely, not on them long enough, perhaps not the right abx, it was disaster. We really didn't have a treating Dr. that knew enough about all this to consult us to continue or switch the abx. We picked him up from school, he is now on Medical leave from Emory University, until we get this resolved. This is the longest lasting episode to date. I think we are on week 6 or 7!

WE ARE READY FOR IVIG! I came back to the forum to see what has been posted and WOW! WE ARE READY. I called Dr. B's office we have an appt scheduled for late Oct. however, we need treatment now. Before I try to get in earlier we are trying to consult with a Dr. that will get him the IVIG local in WI.

 

By the way, the school was great working with us as far as IEP was concerned. They had never heard of it, however, they were willing to make the accommodations based on our Pysch. recommendations.

His twin is attending Wash. Univ in St. Louis and so far has been healthy. Wash U is also willing to accommodate our sons needs should an episode occur. We are praying that IVIG will help the one twin, so that if an episode with the other happens, we can get him the IVIG right away as well.

[sebrown1126]

We had two back-to-back days HD IVIG for our son just before Easter of this year. We had an extremely rough time after the IVIG, which lessened over the span of three months. Even while having the rough time post IVIG (sometimes during that time I wondered if IVIG had done anything, alternating with believing IVIG was the greatest substance ever), we did feel that we were trending positively toward health.

 

Now, about five months post IVIG, our son is doing so wonderfully that people outside our family call him a "changed boy." And generally, because of the PANDAS fear, our son didn't "act out" outside our home.

 

We still have occasional bumps, which I credit to the IVIG "finding" more of the bad antibodies and roouting them out. I have no scientific basis for it. We treat these mini-exacerbations (and that's too strong a term for it) with benadryl. He also is on zithro as a prophylatic.

 

We are thrilled with IVIG and so thankful we did it. Ours lives are completely changed because of it.

[julesmom]

My daughter has had 6 monthly infusions. She also has hypogammaglobulinemia. It seems to keep her in remission for about 4 months. We are meeting with dr next week to discuss possibly doing IVIG every 3 or 4 months to try to keep her from flaring. No this was not a cure for us but an absolute life saver. Only thing that worked. Looks like a lot of the children that also have an immunodeficiency will need ongoing treatment. Not happy about it but we have to do what we need to do to keep her from going off the deep end.