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I have a friend who has a son diagnosed with PANDAS a few years ago. She visits this forum regularly, but, does not post. Anyway, her son received two high dose IVIG's so far (good improvement with first...not so great with second....neither was lasting), proph. antibiotics (with some full doses thrown in there for a month or so).....and 2 steroid bursts. (some improvement) Long story short, her son (and the entire family as a result) is really struggling. He is now unable to attend school due to severe rage episodes, some OCD issues, etc.

 

Her doc is now recommending Abilify (one of the docs she works with)...does anyone have experience with Abilify? What were the results? Her immunologist is recommending monthly IVIG starting at 1 mg and tapering down over time. (I hope I got that right) She is torn as to whether she should start Abilify or wait and do the monthly IVIG. Can she do both at once? If so, and she sees improvement...how will she knows what is working? Any suggestions would be greatly appreciated as her family is really in distress right now. She will be looking for your opinions and experiences.

 

PHILLY.......what dose does your son get and how often? (my friend would like to know)

 

 

 

Oh...her son has had extensive testing....no co-infections or Lyme involved.

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We have had two trials of Abilify, and neither went well, unfortunately. Plus, it is my understanding that Abilify is intended to "boost" the effectiveness of another anti-depressant or SSRI; I've not known it to be used as a stand-alone, but that may just be our experience.

 

In our case, a standard dose activated our DS. So then we tried cutting it in half and, while that went better, it still seemed to kick up his behavior atypically.

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Pmom-

 

We have not done abilify- so I cannot comment there.

 

We were in a (not quite as bad) situation recently, where we started two different therapies at once. I understand the concern, and normally, I would not do this- but when in crisis, I don't always play by my own rules. The best problem your friend could have is not being sure whether the ivig or abilify caused a miraculous turnaround. How long does it take abilify to work- maybe she could start, and then in 2 weeks do IVIG?

 

With that being said, would she consider iv steroids? They were really helpful for us, got us out of crisis fast.

 

In agreement with Nancy's concerns, I would always be sure to start any psych med at the lowest possible dose, due to the fact that pandas kids don't always react in the typical way :(

Edited by dcmom
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My son was prescribed Abilify as a stand alone for what they thought was a severe mood disorder (before PANDAS/LYME/MYCO/ETC diagnosis). This did not go well for my child and we eventually stopped the drug. I personally would not try this for my child again.

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I would ask your friend have you really ruled out all infections? How did you test for Lyme? Stories like this one pull at my heart strings and I hope your friend hears all sides to the Lyme debate. If ivig and steroids are not bringing sustained improvement, and it sounds like they are not, take a second, deeper look into other infections that may be at work. Its so hard because what works for one child may not work for another depending on so many variables. Read some of the other threads on what has worked for others where steroids, ivig, and pex have failed. Most have uncovered a chronic infection. a lot have uncovered Lyme.

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Kel,

 

My dd11 tried Abilify when she was 7. She started at 1mg then stopped at 2mg. It calmed an off the charts hyper kid down and she slept better at night. But we soon realized it calmed down the entire brain. Even at such a low dose, cognitive blunting was apparent.

 

Is her thought that Abilify will relieve the crisis until the steady ivig can get the auto-immune under control? The only other caution I can provide is hydration. In the warm weather, my girl had 2 episodes of syncopy. The doc thought the Abilify may have lowered her blood pressure in combo with low hydration.

 

I hope her son gets some relief soon.

 

Warm and healthy wishes,

Jill

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I have a friend who has a son diagnosed with PANDAS a few years ago. She visits this forum regularly, but, does not post. Anyway, her son received two high dose IVIG's so far (good improvement with first...not so great with second....neither was lasting), proph. antibiotics (with some full doses thrown in there for a month or so).....and 2 steroid bursts. (some improvement) Long story short, her son (and the entire family as a result) is really struggling. He is now unable to attend school due to severe rage episodes, some OCD issues, etc.

 

Her doc is now recommending Abilify (one of the docs she works with)...does anyone have experience with Abilify? What were the results? Her immunologist is recommending monthly IVIG starting at 1 mg and tapering down over time. (I hope I got that right) She is torn as to whether she should start Abilify or wait and do the monthly IVIG. Can she do both at once? If so, and she sees improvement...how will she knows what is working? Any suggestions would be greatly appreciated as her family is really in distress right now. She will be looking for your opinions and experiences.

 

PHILLY.......what dose does your son get and how often? (my friend would like to know)

 

 

 

Oh...her son has had extensive testing....no co-infections or Lyme involved.

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My son took low dose Abilify briefly when his tics first started. His tics were very violent and were making his neck very sore. It did significantly reduce his tics but made him extremely sleepy to the point that he would fall asleep at school. After his tonsilectomy and starting his antibiotics we stopped it and his tics remained improved (I believe because of the antibiotics). I didn't notice a change in mood but his dose was 0.5mg which is pretty low.

 

Dedee

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Thanks for all the replies.

 

Jill,

 

yeah...I think they just want to get things under control for now.

 

 

 

 

For those doing monthly IVIG...what dose are you getting?

 

There is a concern about the monthly lower dose the doc is suggesting for her son.

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Abilify was the drug that tipped Pixie over the edge and we almost had to institutionalize her. We had tried Zoloft, and it was doing nothing. They switched her to Abilify and all was well for about a month and then she developed what they thought was a reaction and muscle spasms, but they continued to increase even off of the meds. She reacted poorly to the "detox" meds they gave her to clear the Abilify from her system as well. By the end of her time on Abilify (2mg by the end,) she was literally writhing in the floor with tics and we were sitting on her HOURS a day because she was violent and that was the only way we could safely restrain her.

 

There is not a way in ###### I would ever give this to a child. I heard similar horror stories from parents whose children have been on Abilify who were not dx w/PANDAS too, so I don't think this is some far-out atypical response, unfortunately :( Luckily, we managed to get in w/Dr K and get hdIVIG a couple of weeks later and that seemed to clear the effects of it from her system almost overnight.

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Abilify was the drug that tipped Pixie over the edge and we almost had to institutionalize her. We had tried Zoloft, and it was doing nothing. They switched her to Abilify and all was well for about a month and then she developed what they thought was a reaction and muscle spasms, but they continued to increase even off of the meds. She reacted poorly to the "detox" meds they gave her to clear the Abilify from her system as well. By the end of her time on Abilify (2mg by the end,) she was literally writhing in the floor with tics and we were sitting on her HOURS a day because she was violent and that was the only way we could safely restrain her.

 

There is not a way in ###### I would ever give this to a child. I heard similar horror stories from parents whose children have been on Abilify who were not dx w/PANDAS too, so I don't think this is some far-out atypical response, unfortunately :( Luckily, we managed to get in w/Dr K and get hdIVIG a couple of weeks later and that seemed to clear the effects of it from her system almost overnight.

So, how do you know if it was abilify or PANDAS that was causing the problem? That's the problem I see w/ the psych meds-they give you another highly variable variable, that messes with the same neurotransmitters that are disregulated with PANDAS.

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My son's dose is 2g/kg. His first three were May, July, August 2010. We had steady improvement until my other son got mycolplasma pneumonia. This causes a rapid collapse of progress. His neurologist decided to blast my son's immune system with ivig every 6 weeks for 6 months. This comes out to 4 more ivigs. We just finished up ivig number 5.

 

I don't know how long your friend's son has had pandas. It seems to me, that pandas caught within the first year can be taken care of with antibiotics, steroids and if that doesn't work one or two IVIG's. However, the long term severe cases have not been studied. Perhaps long term mild/moderate cases can be treated with only a couple ivigs. Who knows. All the doctor's are just guessing as to how many ivig's are needed. Dr. K, who is not our doctor, seems to have the most experience with pandas, but even he does not have a 100% remission statistic. I believe doctors are now experimenting with ivig to get the 100% remission. Sadly, our children are all in the experimental group. My son has shown steady improvement, but it was ivig #5 that showed the most dramatic improvement (and it has only been 10 days since he got it). His teacher said to me on Friday, "I can't wait to see what happens after the next ivig." It is very exciting. We have come so far during these past 10 months.

 

100% remission seems like to much to hope for in our case. It seems like it would take a miracle. However, lately I have been finding myself thinking that maybe, just maybe, I will get my miracle. ( And I just got a chill up my spine as I typed that...)

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100% remission seems like to much to hope for in our case. It seems like it would take a miracle. However, lately I have been finding myself thinking that maybe, just maybe, I will get my miracle. ( And I just got a chill up my spine as I typed that...)

 

...and I got tears in my eyes as I read it! I'm hoping and praying with you, and all of our PANDAS families!!

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My now 10yr. old has been on Abilify for over a year, with Celexa and Tenex. If we miss just one dose, we pay for it! It has helped her, but not cured her. I believe every child will react different to different medications, you just have to try it to find out, BUT it's not a cure!

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