Need assist from seasoned PANS veterans!

[beeskneesmommy]

IVig 5/20, 5/21. Hard decision because DS6 was looking very well at the time. Convinced to go ahead because he was still having intermittent MINOR symptoms and the plan was to boost the immune system prior to getting him off high abx over the summer. He has been on Azith and Augmentin daily for 2 years and was doing better than ever before with the continued meds and a previous IVig last Sept.

So, after the IVig, he was holding his own, although not great, but no cause for alarm as he does respond with flare post IVig. 30 days ago as per doc's orders, I stopped the Augmentin and put on board 14 days of Rifampin and 30 days of Clindomycin, daily. I also continued the Azith, daily. During the time that the Rifampin was on board, he leveled out and lookd great! After the Rifampin went off, and he has been on just the Azith and Clindo for the last 2 weeks, he has gone down hill. Primary symptoms are pretty severe OCD (causing irritation, arguments, mild tantrums several times/day) and the return of tics. Today is the last day of Clindo and I am dutifully finishing it out.

I have Augmentin and can start it again if I choose, but I am wondering if I should just chill and hold my breath and see what he looks like over the next week. I fear him going down hill further, but there is a part of me that blames the Clindo for it (crazy??). I started him on Diflucan 1 week ago because I was concerned about yeast. This has historically made him look stellar with the combo of Azith and Augmentin after a short herx, however, does not seem to be touching him now. I suppose he could be having a major herx from the Diflucan, but my gut tells me there is more to it.

So questions: 1. anyone seen negative response from Clindomycin? 2. chill and see if he gets worse or starts to get better when it is finished at the end of today, while keeping the Azith and Diflucan on board? 3. replace the Clindo immediately with Augmenin, abandoning the plan to try to taper him off of most abx at this point (he would indef. stay on the Azith, alone).

We have been at this for 4 years and I would appreciate a seasoned member's input, please!

Warm wishes for the recovery of your own, Kath

[LNN]

Trust your mom gut. If clindo is raising your antenna, follow your instincts. Yeast was my first suspicion as well. It could very well be herxing from the yeast. Try adding a charcoal a few hours after a diflucan dose if the schedule allows. Or try molybdenum - My DD and I supplement moly for methylation and we buy it in liquid form from Yasko's company. http://www.holisticheal.com/molybdenum-drops.html That way, I can control dosing much better. It has no taste.

 

To understand how molybdenum can help with Candida, you need to see how your Candida overgrowth is releasing toxins into your system. The Candida yeast lives on sugars in your gut. When it processes these, one of the byproducts that it releases is a neurotoxin named acetaldehyde. This is just one of the toxins that Candida releases (there are a total of 79!), but it happens to be the most important.

Acetaldehyde has a whole host of detrimental effects on your health and wellbeing. It can impair your brain function and even kill brain cells. Your endocrine, immune and respiratory systems can all be affected, and it also damages the membranes of your red blood cells, reducing their ability to carry oxygen round the body. Again this directly affects your brain, so you can see how acetaldehyde is linked to Candida symptoms like brain fog and fatigue.

Acetaldehyde stays in your body – it does not get excreted like other toxins. A build up or accumulation of acetaldehyde can lead to joint pain, a feeling of weakness and aches in muscles, in addition to those harmful effects on your brain.

 

Molybdenum helps by converting the acetaldehyde into acetic acid. This can then be excreted from the body like any other toxin. Alternatively, the acetic acid can actually be converted into an enzyme named acetyl coenzyme A, which is actually an important part of your metabolism. Acetaldehyde is also released during Candida Die-Off, which is when molybdenum is especially useful. If you think you are undergoing Die-Off and you are experiencing the usual fatigue and flu-like symptoms, Molybdenum may be able to help.

http://www.thecandidadiet.com/molybdenum.htm

I was in a situation similar to yours in that DS had a return of symptoms with no apparent infectious trigger and the addition of a third abx did nothing. I tried various things with no improvement. I finally wondered if abx were the problem, not the solution. A candida albicans blood test came back negative but there are other strains. So it wasn't a definitive answer. I had always used garlic as an anti-yeast supplement but apparently you need to rotate your anti-yeast army b/c the yeast can become resistant. After much trial and error, dead ends of various theories and supplements, we discussed two possible culprits with our LLMD. One was yeast/fungal and one was biofilms. Both seemed likely given our long history of treatment and 4 yrs of abx use.

So LLMD put DS on artimisinin (in capsule form). (DS has been off all abx since April and was only on vitamin/mineral supplements). Two weeks into treatment and the OCD and other symptoms are virtually gone. There is one residual compulsion but it's getting weaker. Tomorrow we double the artimisinin to full dose - did 2 weeks at low dose b/c DS can herx severely sometimes. It seems to be doing the trick. We're waiting on stool test results but clinically, he's responding.

If diflucan isn't working for you, maybe consider other anti-yeast options. But I think I'd pursue that before adding other abx, given that he was doing well before all this and you don't see any signs of a new infection. Given his history, yeast seems like a logical culprit to pursue as a next step.

Hang in there and do try the moly. We use 3 drops (75 mcg) daily (maintenance dose) and add a second dose later in the day when die-off seems to be in the picture. Hope this helps.

[beeskneesmommy]

Ah-ha! hoped I would hear from you LLM! Thx! He was + for candida, but not glaringingly, back in March. This was after about 70 days of Diflucan use, and the 1st Candida test we did, so one would hypothesize that the candida was at a higher level prior to the test. No big surprise given the fact that he has been on daily abx in one form or another since 9/2010. Can I get Molybendum at Whole Foods? Is ther something that comes in liquid or kids chewable that might work? DS is 6 and does not swallow pills/capsules yet. Also, side effects or herx top worry about?

 

I am concerned about yeast but also by the fact that he was doing so great for months pre-IVig #2 and on the typical Aug/Azith combo with Diflucan that is familiar to us. I am taking away video games and putting him on a more strict sleep schedule as of today - he is in sports camp daily this week so hopefully he will be tired and perhaps I will dose him w/Benedryl tonight to ensure a good sleep. I just feel so badly for him because he was so darn normal and healthy for so long, and this level of OCD is remeniscent of the old days. PTSD!!!!

 

When I dropped him at camp this morning a little girl came running up and introduced herself, very sweet an friendly...I quietly mentioned to the owner that my son had blown sky high over the weekend with OCD and tics. He said, "Oh (name of little girl) is full blown Autistic, so this should be an interesting week". I had to smile, as the owner has a 15 year old with Tourettes and has been around the block. DS will be in good hands and hopefully come home a little readjusted. Interestingly, structure like school or a day of activitiy away from me often helps to "re-set" him. I shudder to remember what my colleagus in the old days when I was a clinician at a child/adolsecent psych hospital would have said about that, lol!

 

...and, thank you for your response. I will check out the link today

Edited July 8, 2013 by Beeskneesmommy

[nicklemama]

Having also been around the IVIG block twice, we have seen worsening both times after IVIG and a slow improvement. DS does not have yeast issues but he does take diflucan every other day. He's also on a fairly large dose of probiotics and sac boulliardi. Every time I think we've kicked PANS butt, it comes back to bite ours. Have you thought about Motrin for a few days to see if you can get over the hump? Clindamycin is some powerful stuff and it is most likely yeast. Sacc boulliardi is great for crowding out bad yeast and preventing c diff. I'd give that consideration if you aren't already giving it.

[sf_mom]

I would retry Rifampin combo again if possible for at least 30 days. It was obviously helping for some reason. If you see the same type of improvement I would stick with it for a while.

 

I suspect the IVIG might have stirred something up.... meaning, a potential chronic infection that is now ahead of current protocol causing a slow increase in symptoms.

 

It could be yeast but the prior improvement with Rifampin is definitely a clue. It is worth a trail of Rifampin again to know if it was truly helping. If you get a similar positive response I would suspect you are still dealing with something.

[JoyBop]

I'm far fr a veteran but one thing I've learned from listening to Maloney (author if SS) is that you should always taper a PANDAS child off abx slowly to see his they tolerate it, not stop an abx all at once. We tried that approach with azithromycin and thank goodness bc a crash was imminent.

Sorry I can't be if more help other than to say trust your instincts. They are usually right

[beeskneesmommy]

Having also been around the IVIG block twice, we have seen worsening both times after IVIG and a slow improvement. DS does not have yeast issues but he does take diflucan every other day. He's also on a fairly large dose of probiotics and sac boulliardi. Every time I think we've kicked PANS butt, it comes back to bite ours. Have you thought about Motrin for a few days to see if you can get over the hump? Clindamycin is some powerful stuff and it is most likely yeast. Sacc boulliardi is great for crowding out bad yeast and preventing c diff. I'd give that consideration if you aren't already giving it.

Diflucan is all (aside from daily probiotic) that I have ever used. Please tell me about the availability of Sac B, dose, etc. Yes, we see a terrible crash usually around the end of the 2nd week post IVig... and we did this time too. However, after Rifampin and time (we are at week 7 post IVig now), I am concerned to see such symptoms. He is even flapping as he is running today, which I have not seen for years (he is not ASD). The PANDAS has been so far behind us for so long, that it is really anxiety producing to see these kinds of symptoms post IVig. He has not returned to his pre-IVig place....and I took Clindo for 10 days and it made me feel awful! I think I will hold off on putting the Augmentin back on board, keep the Diflucan and Azith on board, D/C the Clindo now, rather than follow thru with the last 2 doses today, and look into the Molly and Sac B. Sound like a plan? Thx everyone!

[LNN]

Bees - does sound like a plan. Personal opinion, but I'd add one thing at a time and I'd vote for the moly first for two reasons. 1. I'm not aware of any side effects it can cause, assuming you'd be staying in the 75mcg range, 1-2x/day. This will help with detox for yeast. 2. DeeDee's DD has had flapping (is also non-ASD) as a result of a CBS methylation issue. Moly is one of the main supplements you take with a CBS mutation. Both my DD and I have it and it helps both of us. So the moly could possibly help the flapping.

 

I'd wait two weeks before then adding the Sacc B so that you had time to assess each one independently. Also, in the recent thread about different probiotics producing various neurotransmitters - Sacc B produces epinephrine and norepinephrine. It makes my DS very agitated, aggressive, impulsive. I know it's supposed to be a "good" yeast but not everyone can tolerate it. if you've never tried it before, you may want to get things calmed down before adding it to the mix. I tried it for the first time after things were ramped up after IVIG and found out a month later when I stopped the Sacc B, DS calmed down. Turns out I was making the post-IVIG nightmare worse, not better, with the Sacc B. Some do well on it, so I think you owe it to yourself to try it. But at a time when you'll be able to isolate its impact, not necessarily when things are already topsy turvy. jmho.

[nicklemama]

Yes, one thing at a time. Saccaromyces boulliardi is a good yeast. Google it. It helps crowd out bad yeast and kills c diff. We use Jarrow brand. Doesn't need refrigeration. Not expensive. I am on long term abx too and I use it along with my son. Dr T first recommended it when DS was first dx'd. At this point in the game, I'd assume a peeling back the layers that often happens post IVIG. I've seen that twice.

[dut]

Could c-diff be in the picture.. seems it can provoke PANS symptoms in some and I believe clindamycin can be a troublesome abx for those susceptible to c.diff. I always go overboard when ds has had clindamycin but he's had c.diff previously. No diarrhea just stomach pain but he came back positive for c.diff...just a thought...

 

edit.. sorry just realized nicklemama has already mentioned c.diff

Edited July 8, 2013 by dut

[beeskneesmommy]

DEFINITELY one thing at a time! The whole point of the 2nd IVig was to beef up the immune system so we could get more conservative w/meds. DS6 tends to be very sensitive to alternative meds, as am I. Inisotol at a small dose nearly blew him out of the water last year. My immediate plan is to do only the Azith and the Diflucan for the rest of the week, cut any intensity-producing activities (Nintendo 3DS) out completely, keep sending him to camp at the fitness place with coaches who get it and call when they have concerns (want to tire that child out physically), get him into bed and asleep no later than 8PM nightly. He and I are heading out next Mon. to Phlly 'burbs to stay with my parents and we have appt.'s w/Dr. B on the 17th and Dr. L on the 19th. Both will have different opinions, but we manage to work together. I am really hoping to continue with the plan to decrease abx to the Azith only, if possible, as I don't want to continue this prolonged use of them solely for antiinflammation. I believe that we have kicked the bugs after 3 solid years of abx daily and the last 2 years of Azith/Augmentin combo. However, I am going to request stoneybrook Tick born blood work once more...for both DS AND me. Any further suggestions for our doc visits would be appreciated and welcomed! Thx friends!

Edited July 9, 2013 by Beeskneesmommy

[Mary M]

We have not ever been prescribed clinda but did have a negative response when a cephalosporin was added to replace augmentin (local Dr thought it would be good to vary the abx to "see if another abx could kill any rouge infectious agents). It was a disaster, setting us back weeks...

 

I will also add that we have had 2 IVIgs (1.5 g/kg) and both had a "worse before better" effect.

 

Additionally, every time a flare erupts ANY decrease in abx yields an increase in symptoms/dysfunction.

[beeskneesmommy]

yet another day debilitating OCD and tics - what the heck? My son was fluxuating betw. 90-100% prior to the IVig 7 weeks ago. He looks awful! It came on like a ton of bricks last week. D/C'd Clindo yesterday and he is only on Azith. I have been giving him the Diflucan for about 10 days. Seriously thinking of starting Augmentin again today. Feeling frantic.

[T_Anna]

What would be the downside to trying Augmentin again? If he improves you have solved your problem. If he doesn't then you are no worse off then you are now, I think.

 

I guess I'd make a pros/cons list and check in with the doctor.

 

T.Anna

[beeskneesmommy]

Yes, I am consodering it. I have some. I put in a call to Dr. L and will wait to hear back - asked about Aug or Rifampin. Just seriously bummed out because he was SO on top of the game that the plan was to decrease the abx at this point. The IVig and the Clindo threw him for a loop. Last time he had IVig, it took quite a bit longer than is typical for him to start improving from the backslide...perhaps this is more backsliding. I am just suspicious of the Clindo. I think I will grit my teeth for a little while longer - the other thing is that Aug is tough with yeast and I KNOW Candida is in there, so I was hoping to continue w/Diflucan and Azith and attack the yeast problem before pushing Aug which is a known concern for yeast...