Looking for some "old- timmer" help - 3 year anniversary

[3boysmom]

Well yesterday was the 3 year mark of this illness and I was hoping to post a great update, but instead I am asking for help with something new.

 

Our DS12 (13 in a few days....happened right before his 10th birthday) was doing great and took a big nose dive this summer, was found to have a very bad case of Candida Glabrada, h-palori(spelling?), and a few other coinfections. A great doctor (believes in PANDAS and treats all kinds of "out-side-of-the-box" things, but is not a PANDAS per-say doctor) has been helping us this summer because we have already gone the 8 IVIG route and Dr. B is great but difficult to have time for him to look for all these other things, We are in Texas. Anyway, with each clearing of an infection, he has gotten better and better. Was off of antibiotics for about 2 months while the yeast was being treated......

 

November 12th brother gets the flu and all are put on Tamiflu. Passes quickly and then on November 15th DS12 says that something is not right-doesnt feel sick but has 102 fever, lasts for 1 day. Tests negative for flu and strep....mystery...

 

Then a few days after the mystery 1 day illness and he has this terrible tic (tics have never really been our problem (mostly dibilitating OCD has been our battle)

 

NOW: He can NOT speak a complete sentence without a loud suck-in noise (like a reverse hic-up) or he will sniff non stop in between every word. Doctor put him on zithro 250 (until the yeast he had been on Augmentin XR 1000 for 2 and a half years) Zithro did nothing and we added Fluconazole which still made no inprovements. Stopped the zithro and the Fluconazole and went back to try to see if it was yeast by putting him on Nystatin and Ketaconazole.....grasping at straws because this worked before when we had a few tics before treating for yeast.

 

 

This doctor that is trying so hard to help is not sure what to do next, and we do not know what that fever was from, wants us to take him to a neurologist for an EEG and then would like to try something called "Lamictal" Before we do that he would like us to try "Cefadroxil"

 

Feeling lost with no PANDAS guidance....

 

Why the tics after 3 years? SO Suddenly! (what are we missing? What should we test for?)

 

Should we have pushed for a higher dose of Zithro maybe 500 x1 instead of the 250 x1 (he weighs 130)?

 

Should we try Cefadroxil?

 

Should we go back and try Augmentin XR 1000?

 

Should we go to get the EEG?

 

Should we try Lamictal? (adverse reactions anyone? is it a SSRI drug?)

 

Anyone deal with this tic before and what helped....will it just disappear one day as quickly as it arrived? Is there an untreated infection in him?

 

 

The other 2 boys were also switched from Augmentin to zithro a few weeks ago because the strep titers went up for the first time in 2.5 years and one had micoplasm numbers in the 3000s...BUT- KNOCK_ON WOOD...they are doing fantastic and showing absolutly no more signs of PANDAS issues (remember the younger 2 were caught and treated very early because we knew what was going on. The DS12 is a different story because we went down the wrong path for too long and I believe this is why he is so difficult to "fix".

 

I know I have read MANY times about those who deal with tics, but I read with different needs in the past, looking for OCD help. Now I am back with a different need for help.

 

Thanks in advance to my long time ACN brain stormers....Linda

[Ebersolk]

I am wondering if it had anything to do with the Tamiflu? I googled it and it said the most common side effect among pediatric patients is neuropsychiatric issues.

 

I would probably try another high dose antibiotic. What about omnicef?

[3boysmom]

I am wondering if it had anything to do with the Tamiflu? I googled it and it said the most common side effect among pediatric patients is neuropsychiatric issues.

 

I would probably try another high dose antibiotic. What about omnicef?

 

 

 

Just wondring that myself.....on the main page of this forum, at the top, there is a scrolling advertisement for Tamiflu and lists "strange behaviors

as a possible rare side affect...

[norcalmom]

I'm sorry to hear about this after so much improvement. It sounds basic - but have you tried 3 days of Advil - dosing every 4-6 hours? I have found jumping on the Advil at the first sign of pandas symtoms very helpful in shortening/lessening symptoms. DS no longer has long exacerbations - but will still have a few days of irritabiity and some tics when he gets a cold. I don't know if it is because we're finally making headway with the chronic infection, or if its because I always give him at least a day of Advil when I even THINK something maybe happening.

 

If it continues, I'd consider a short round of steroids - or a highly anti-inflamatory diet for a few weeks.

[LNN]

My son developed symptoms that looked like tardive dyskenesia after just one dose of tamiflu. He felt so weird and his legs were jerking so badly, I never gave a second dose. His symptoms resolved after about 48 hrs. So it's possible Tamiflu was the trigger. But you're a month out now, so I have to wonder what's causing the pot to still be stirred...have you checked him for mycoplasma? Some say zith isn't always effective.

 

My son was a big ticcer when Pandas first hit. But tics went by the wayside post-pex in '09. We have seen two short periods of tics since then. Both were caused by severe herxes when treating lyme. My son can't handle the overload of toxins from the dying bacteria and it shows up in both behaviors as well as tics. So we get super crazy with supplements that help detox and inflammation. We also back down on abx, to stop killing quite so many buggers that are exploding toxic bombs all over the place as they die.

 

For inflammation we use motrin 2-3/day. For detox, we use alpha lipoic acid, B6, Vitamin C, resveratrol, milk thistle, lecithin, activated charcoal and/or bentonite clay. ALA, B6 and milk thistle are my top 3 followed closely by a good brand of resveratrol.

 

There's no single bullet here. It's a combo of backing off the abx (not stopping - just lowering the dose - or if mycom maybe switching), tamping down inflammation and helping the body clear out the toxins. Also check for mold issues, which can keep you flaring despite clearing infections, yeast etc. If you're concerned about a lingering infection, GSE and l-lysine are good as is zicam, which also provides zinc to help the immune system.

 

Wish I could give more concrete advice. The only thing I've learned in 4 yrs is that every flare presents clues and each time, we've found one more layer of the problem. Something is still in your way. As much as it sucks, you can at least look at this as a chance to root out one more culprit. Hang in there - you know you'll get on top of it.

[3boysmom]

My son developed symptoms that looked like tardive dyskenesia after just one dose of tamiflu. He felt so weird and his legs were jerking so badly, I never gave a second dose. His symptoms resolved after about 48 hrs. So it's possible Tamiflu was the trigger. But you're a month out now, so I have to wonder what's causing the pot to still be stirred...have you checked him for mycoplasma? Some say zith isn't always effective.

 

My son was a big ticcer when Pandas first hit. But tics went by the wayside post-pex in '09. We have seen two short periods of tics since then. Both were caused by severe herxes when treating lyme. My son can't handle the overload of toxins from the dying bacteria and it shows up in both behaviors as well as tics. So we get super crazy with supplements that help detox and inflammation. We also back down on abx, to stop killing quite so many buggers that are exploding toxic bombs all over the place as they die.

 

For inflammation we use motrin 2-3/day. For detox, we use alpha lipoic acid, B6, Vitamin C, resveratrol, milk thistle, lecithin, activated charcoal and/or bentonite clay. ALA, B6 and milk thistle are my top 3 followed closely by a good brand of resveratrol.

 

There's no single bullet here. It's a combo of backing off the abx (not stopping - just lowering the dose - or if mycom maybe switching), tamping down inflammation and helping the body clear out the toxins. Also check for mold issues, which can keep you flaring despite clearing infections, yeast etc. If you're concerned about a lingering infection, GSE and l-lysine are good as is zicam, which also provides zinc to help the immune system.

 

Wish I could give more concrete advice. The only thing I've learned in 4 yrs is that every flare presents clues and each time, we've found one more layer of the problem. Something is still in your way. As much as it sucks, you can at least look at this as a chance to root out one more culprit. Hang in there - you know you'll get on top of it.

 

 

 

 

yes, he has myco and we've been working on clearing that for a while now, so the tics are new but not the myco....

[Missmom]

Have you had a full panel of bloodwork done. That fever could have been anything, but maybe if you get the titers run on strep, myco, etc.... You might find some answers. My son tested positive for flu in oct, and the urgent care prescribed Tamiflu. I was also nervous about the possible neuro side effects, so I immediately called our neurologist and she said to go ahead with it. She said if he would have a reaction to it then I would know pretty quickly and just stop. She said side effects would be short lived.

[nicklemama]

Lamictal is an anti seizure medication. Its used for its antidepressant/anti anxiety effects in bipolar disorder. My son was on it for 1.5 yrs. It takes time to work up to a therapeutic dose. I've read here is can cause tics, especially if you get the dose too high. My DS did develop tics while on lamictal. At the time he was rx'd lamictal, we did not know he had PANDAS. The tics went away when he was put on biaxin when first diagnosed w/ PANDAS. Tics are not his major presentation. OCD and raging are. His tics come and go and are related to infections. We took him off lamictal after IVIG #1 because he no longer needed it. He was doing so well. Unfortunately, he came down w/ pneumonia 6wks ago or so and has since had IVIG #2. He's not doing well right now and I kind of wish we'd just left him on the lamictal. He could use it right now.

[dcmom]

Hey Linda-

 

Glad things had been going well- hold on to that.

 

I think I am in somewhat of the minority here, but I will tell you what has worked for us so far....

 

I have two girls with pandas (ages 9 and 12), we have been at this for gosh, almost 4 years. Both girls are doing awesome! They are blossoming right along with their peers! This is not to say we haven't had bumps, but I say that they are at about 95%, 90% of the time. For my older one, she has been even better than that for the last two years.

 

We have made reasonable efforts to look for chronic infection. It has just not been an issue here. Both girls are physically healthy, I can see it. They do, however, still have pandas reactions to illness. We have treated this as autoimmunity, and it has worked, therefore that is what I believe it is. So, in other words- if they get a cold or the flu, or strep, they are treated for the illness. They recover. But at the same time, the autoimmunity is triggered, and we get pandas. For us it starts mildly, and if left untreated, it continues to spiral downhill. It seems each illness has its own pace for how fast it gets out of control.

 

If we see a flare up, we treat immediately with 5 days of zithromax and 5 to 7 days of advil (3x per day). If this doesn't get rid of most of the pandas symptoms- we go straight to steroids.

 

I would tell you that steroids have been a lifesaver for our family. I do not know where we would be without them. I would not try any other long term medication before giving them a try. For my kids, they have been able to stop the autoimmunity in its tracks, and they have been well and recovered completely. This is a short term treatment. The sooner it is given, the better. The sooner the pandas is treated, the less symptoms need to be eradicated.

 

For example: A few years ago my younger dd had the flu. We gave her tamiflu, which stopped the flu within 24 hours. Within 24 hours after her fever subsided- she was spiraling downhill extremely fast into a pandas episode. We immediately gave her a steroid burst, and within 3 doses she was almost 100%. She did not have another exacerbation for over a year.

 

We expect that they will get sick, we expect that will trigger pandas- our biggest objective is to have a plan in place for this, so we can act quickly and aggressively. This has been the key for us, so far.

 

Good luck!

[nicklemama]

How do you get a doctor to prescribe a steroid burst after each flare? Are you seeing a PANDAS specialist. The one we see would not do this, not soon enough, at any rate. My ped is being kicked to the side, as she is no help, whatsoever. We've been at this 3 yrs. Just finished IVIG #2 and things are not good. My son is rarely sick. Flares w/ exposure. If he gets sick, which is what just happened to him, its downhill when the illness is over. He had pneumonia 5 wks ago or so. He hadn't been sick for nearly a yr. Boom, just like that, all gains erased.

[dcmom]

nickelmama-

 

we see Dr T mostly. Used to see Dr L, but we moved. Both are on board for our protocol.

 

My kiddos are no longer on daily or prophylactic abx. If they get sick, or if I see a flare up in pandas, I immediately start them on a zpack, and 5 to 7 days of regular advil dosing (3x day). Many times this will take care of it, esp if the trigger was exposure or a cold. If they were sick with a fever, it seems we need a bigger gun like steroids. Thankfully, they only end up needing the steroids about 2x per year, lately. I try to have a burst on hand ( yes, pre- prescribed by the doc). Lately, I have been experimenting a little bit, with really getting the lowest effective dosage. Both docs typically prescribe around a 3 week burst- we don't always seem to need that much. I try to give them the full dose (they both seem to tolerate 30 mg/day the best) until I see a major improvement, then I taper off as per prescription. Last time I did this for my little one, she was only on the 30mg for 3 days (as opposed to the 7 of the prescription)- I was therefore able to taper quicker, so a 4 week taper became a 12 day taper.

 

Compared to the alternative, it is my opinion that an average of two steroid tapers a year is much less risky than living with pandas, or letting pandas get out of control. Since when my kids get pandas, it starts with one or two symptoms and snowballs every day- we feel the faster we stop it, the quicker they can get back to normal. For me, this means it is imperative that I have steroids in the cabinet. I would totally expect if my dd got pneumonia- they would go downhill fast. We have moved our focus from trying to "cure" pandas, to "managing" it- which means being prepared to be aggressive when it hits.

 

BTW- when they first developed pandas- both went into a very bad flare (different times). We tried steroids at the time, it did not work. They ended up having PEX (which was a miracle). It is my belief that the pandas had progressed too far (they had strep and the pandas developed and was not treated with anything other than antibiotics for at least 3 months.) for the steroids to really work. This is why now we don't let it get out of control (if we can help it).

[nicklemama]

DCMom- This sounds like a really good plan. We used to consult w/ Dr T but I haven't since DS had IVIG in Chicago w/ Dr K in May 2011. I am going to see a doctor locally in Jan. She's more of an integrative doc but she's been working w/ a few PANDAS kids. She has an autistic son and is/was a pediatrician before moving into integrative medicine. I am going to try and pursue this plan w/ her. I think it would be a good fit for DS.