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Did PANDAS treatments work?


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For those who did move onto Lyme, did PANDAS treatments IVIG, PEX, Steroids, not work at all? Or did they not last? IF they worked but didnt last why didnt you just repeat them?

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For those who did move onto Lyme, did PANDAS treatments IVIG, PEX, Steroids, not work at all? Or did they not last? IF they worked but didnt last why didnt you just repeat them?

 

Neither steroids or PEX had any real effect on my son's Pandas. PEX caused a slight improvement with my son's dilated eyes and the dystonia in one foot/ankle about 6 weeks after treatment which lasted for maybe another 6 weeks. The improvements in his dilated pupils was measurable but not huge. The improvement in the dystonia was noticeable but so short lived it would be impossible to positively say it was due to the PEX or just a natural cycle improvement. There was no change in his OCD. The doctor we were seeing at the time did not seemed inclined to repeat the process I think due to the lack of any measurable response to the standard PANDAS treatments. Given the expense and ordeal of it all, we were not inclined to push for a repeat either.

 

We got the lyme diagnosis about 9 months after PEX. Took us another 4 months to start a Lyme treatment plan. We started to see real improvements after the first 6 weeks of treatment again in the eyes and foot/ankle. ABX alone or in some combination with all of the supplements we've tried have returned his pupils to almost normal most of the time. Dystonia in foot/ankle improved and stayed improved to a point but no more. Tics became a new symptom with ABX. Nothing seemed to be directly helping with OCD. Various SSRIs as well as therapies have all failed miserably.

 

Started IVIG last June. Just completed the third one. IVIG seems to be pushing progress each time though slowly. The first one improved his mood/behavior. After the second, his math skills seem to be returning and he has been doing his homework without help for the past 6 weeks or so. His third was last week. His foot/ankle feels better and he was able to hold his arms straight in front with palms down really well. Prior to this, he could not. After IVIG I noticed that his arms/hands shake significantly when eating/drinking.

 

That was the abridged edition of the long answer. In short, we did not continue with PEX or other as based on everything I read on these forums as well as elsewhere, it was more important to tackle the bacterial infections first, prior to tackling the immune system responses. Hopefully we've not started the IVIG too soon.

 

Just some other things to note concerning my son, he never had a sawtooth pattern to his symptoms. He just tended to get worse periodically about every 18 months. He does not seem to react to illnesses around him. Medicines/treatments/supplements generally do not cause severe reactions. Some combinations have created progress in some areas. No 'herxing.' Even the IVIGs show little regression beyond tics/shakiness. No separation anxiety, no excessive peeing, reading was never disturbed, bright lights never phased him (even when his pupils were monstrously dilated), sound is his friend. I like to include a list of his symptoms and non-symptoms in case any one else is dealing with the same.

 

Happy Thanksgiving, bill

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What makes you think your son has pandas? Did he have high anti neuronal antibodies on the Cunningham test? Have you tried any glutamate modulating drugs?

 

 

I'm the first one to say I'm not sure of anything. I'm not even sure the Lyme is the final answer. Pandas was based on the ASO/DNASE levels. CamKinaseII was 126 so borderline; some of the other anti neuronal antibodies were on the high side. The main thing that led us down that path was that his OCD was practically overnight. We saw OCD like symptoms for a couple of weeks when suddenly it went extreme along with his behavior (anger) overnight. Our pill pushing psychiatrist did one right thing for us, he ordered the ASO/Dnase tests and wrote the word PANDAS on the order.

 

The real reason I continue to say PANDAS is because all of the current doctors continue to say PANDAS and Lyme (+co-infections).

 

My best "guess" at this time is that my son probably had the lyme/bartonella first, for years, before the PANDAS struck. That guess is based on symptoms our LLMD believes to be a result of Bartonella such as complaining of pain in his hips or just getting tired when hiking long before he should have. Both of my children had a history of strep that did not seem to be cleared by ABX. Both had their tonsils removed. My daughter also had her adenoids removed. My son did not. So there is a history of strep. But as I said before, many of his symptoms do not fit the PANDAS model. OCD as a symptom showed up several years into all of this. Dystonia and psychiatric issues were the first symptoms by years.

 

Is NAC a glutamate modulating drug? I did try that not long after the severe OCD started. After 2 months, we stopped. I did not see any change. Perhaps that was too soon but we saw an immediate (2 hours) positive impact when we tried Zoloft for his behavior. Zoloft failed at the same time the severe OCD hit. We eventually discovered that Prozac worked and worked within 2-3 days. The SSRIs don't seem to help with the OCD but make a huge difference controlling his anger. Consistent with what others have observed, low dose SSRIs are effective for him. Higher doses don't do a thing.

 

Below is what he is on at this time. He was on 1,000mg Augmentin XR twice a day but we recently dropped that as his bowels were starting to run too loose. I think some of that is more due to his poor diet though. There are few vegetables we can get him to eat beyond french fries, corn, and fried okra (of all things). We have not restarted the L-methylfolate (5-MTHF) since running out a month ago. At this point, I'm thinking about letting some of the supplements stop as we run out. I can not say that I've seen anything positive or negative using supplements. I will continue the probiotics.

 

 

 

Prozac 20mg daily

Minocycline 50mg X 2 daily

Azithromycin 250mg X 2 daily

Tindamax 500mg tablet Fri pm, Sat am + pm, Sun am only

Vitamin K2 2 X90mcg; Jarrow MK-7 from Natto extract

Methyl B-12 2mg daily

L-Methylfolate 2000 mcg daily (Ran out)

Vitamin D 2,000 IU daily

Vitamin C 500mg daily X2 daily

Magnesium 84mg Mag-Tab SR X 2 daily

Liver Health Complex X2 daily; (Milk Thistle, NAC, turmeric, dandelion) from Costco

Probiotic Several (Acidophilus + Bifidus, 8B)

Saccharomyces Boulardii + MOS 5B/capsule X 1 daily (Probiotics vary)

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Have you looked into deep brain stimulation?

 

 

For OCD or dystonia? In the early years as his dystonia continued to worsen, and all the experts just told us that's the way it was....I read quite a bit about DBS. Since starting treatment for Lyme, we've been able to drop his dystonia medicine - he was up to 22mg/day of artane. While I can't say that his dystonia is clearly better overall, I can say that it's no worse. That in itself is a victory.

 

Current docs. believe that his neurological symptoms, physical and emotional, will heal with time. A year ago, not one would say that. Now, they are starting to.

 

I am no longer researching DBS for the physical. I know that DBS has now also been used to treat for severe cases of OCD but I don't think he's severe enough at this point. I just scored him 25 on the YBOC scale. He's a little worse after the IVIG last week. I am not trained so who knows how accurate I am but when the OCD hit years ago, he was approaching 40. So progress.

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My dd10 had high CamK (146) and direct strep connection with chronic vaginal strep with pandas symptoms although she also had unexplained pain. She did 3 IVIG's considered low dose (highest was 1km/g). She had improvement in her brain and mood functions that lasted about 3 weeks. She would have increased pain in her limbs for a few days. First IVIG she could not walk well out of the hospital.

 

She responded well to 500 mg zithromax daily but would backslide if the dose was decreased or stopped. Dr. T said she was abx dependent.

 

She responded most to the three abx approach to treating lyme. She has no more pain and we are dealing with the last of her symptoms which seem to be PITANDS related.

 

What else do you have to share on deep brain stim?

 

Thanks.

 

Susan

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My DS was CamK 176, anti-dopamine 1 four times higher than normal, and ASOs stuck in the 500s for the past 2.5 years, with a baseline of 27 from a draw years ago. So overall a pretty convincing case for PANDAS. I don't recall a sudden onset, just the day when things went from bad to way, way worse. So maybe that's sudden onset? IDK. I just know he's always had these issues, but they were manageable until we moved. After we moved exacerbations came on more and more frequently, and then he just stayed chronic. It got so bad that several times he probably should have been hospitilized. At this time last year he was unable to attend school, take a shower, brush his teeth, sit on a toilet, change his clothes, or even interact normally with anyone in his life.

 

We didn't get very far down the PANDAS treatment road before moving on to lyme. He did 1 month of high dose Augmentin and raged the entire month. Very scary. Then he did 1 month of Biaxin. The biaxin brought out rashes, fevers, and grossly swollen joints. That's when we knew this wasn't only PANDAS. So, to answer your question - the PANDAS treatment of high-dose single antibiotic did not work at all for DS. We have not ruled out further treatments down the road for PANDAS, but at this point he is improving so much on lyme treatment, that we are hoping he will heal completely and other interventions won't be necessary. We can hope, right?

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we started with a pretty sudden and severe onset. Almost every symptom on the PANDAS list, elevated titers, and a history of strep. We started with abx and got drastic improvement but it was short lived. Moved to IVIG (4 total of high dose) and saw a severe exacerbation then started to improve after about 8 weeks out from the first. Tics dropped off to almost nothing but could show up at times. OCD was the worst, and after 4 hd ivig, and several months on High dose augmentin, we were only maintaining. I himmed and hawed about lyme thinking it may just be another desperate attempt at healing. I was then bitten my a tick myself after being no where near the woods. I took it as a sign and researched and took her in for testing. I was completely 50/50 on whether she could have it or not. I was actually quite surprised that we were positve, and I still have trouble believing it sometimes... but in retrospect it actually makes sense. The growing pains and feet tingling, stomach aches.... things she had complained of. After adding zith to the augmentin we saw drastic improvement within the week after a pretty severe herx for a few days. Since our diagnosis last Feb I have been able to pull back and see the bigger picture, I noticed cycles before I was even aware that it typical of LYme. So like I said, I still have trouble believing it sometimes, but the proof is in the pudding I guess. I would say she is 99.9% and I can't think of anyone who is 100% normal. We hope to start weaning abx this month. I also noticed if she gets a cold, she doesn't exacerbate anymore:)

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IVig worked very well for us in the beginning. Tics disappeared completely and never came back, even with subsequent exacerbations. Although violent rages and mood dysregulation disappeared for a year they came back with subsequent exacerbations. Lyme and co-infections prevented DD from healing completely. We had two year-long periods free of PANDAS exacerbations, however anxiety and OCD continued to get worse. That's what led us to test through IGeneX. I don't regret having done IVIg because it eliminated the tics altogether and gave us two good years.

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Sometimes it's difficult to separate out what is PANDAS vs. Lyme vs. Bartonella. And it may still be too soon to say but I think so. The tics and violent rages were definitely tied to PANDAS and they have been gone for a few years. Time will tell...

 

One other thing I wanted to add that I forgot earlier. After the first HD IVIg DD gained tremendous ground with her social skills. She is no longer missing the subtle social cues she once used to miss.

Edited by NancyD
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