Restlessness/PANDAS?

[EAMom]

We're moving towards IVIG.

 

Our dd is 80-90% on Azith...but who knows if that will continue. We also have other issues (math facts, handwriting) which may or may not be PANDAS. She on a pretty good dose of Azith (250mg/daily 55 pounds, also advil daily). I don't know when I'd be brave enough to take her off abs even with IVIG but at least I'll hope to eventually go down to a lower dose of Azith (500mg weekly?) or even pen.

 

Claire, we've been on abs since March 08 (Azith since June 08...the ab which really helped) and haven't had a major exacerbation since we've started Azith. We've had some mild ones though. So, it's very likely you won't see a big flare on abs...if that is what your doc is waiting for.

 

re BBB: My husband also remembers reading something about nitrous oxide affecting the blood brain barrier. That might explain why my dd's symptoms ramped so greatly after 2 tooth extractions (feb and early march 08).

1) strep in her throat/mouth released into her blood stream

2) plus stress

3) plus nitrous oxide

 

Michele...I'm not really counting on insurance covering the IVIG but if the IVIG works it will save us a lot of $, grief, time spent in the long run. We're perfectly willing to fly to Chicago if we can't get it done locally.

[mom md]

I am not sure I why I have been lucky in finding neurologists who treat PANDAS but I would recommend calling and asking if they have experience before you waste your time and effort going to just anyone. I am thinking we are going to try the steroid burst and then consider IVIG if it works. Steroids are very benign and cheap and easy to do. It won't fix the problem at all but will let you know if the IVIG could work and also can be used to help confirm the PANDAS diagnosis. My neurologist wants me to come off azith around Aug or Oct which would be perfect strep exposure time. I almost want to see the flare, so aI can do the IVIG and move on. For whatever reason Carter seems more edgy and irritable the past few days. His ASO is still 950 although I know that may mean nothing. I am at the point too that if I can't get it covered I am ready to still pay out of pocket for the IVIG. We have new insurance which complicates the whole picture. I am also tempted to look into the tonsils thing but part of me feels if Carter goes to another new doctor and a procedure it may just add to him being overwhelmed. I don't feel like I have seen t much convincing data on the tonsils thing yet either. although, I just had mine out as a adult and if I could save my child that nightmare maybe it is worth it.

My hope is this IVIG research that Dr. Leckman is doing helps make IVIG more accessible to those who need it.

Claire

[dcmom]

Claire-

 

Thanks for all your info.

 

We have also had luck with 2 good and interested neurologists. Both of them feel having tonsils out could only help (though not solve) things. I know it is hard to tell if tonsils are cryptic untill they are out.

 

I am very tempted to just cut through all of this bs and do IVIG. My only lingering thought is that so many have not been cured by IVIG. I have started to wonder if it is more of a treatment than a cure. Do you have any thoughts/ insight on that?

 

Eileen

[EAMom]

I should note that the immunologist we are working with (who likely will okay the IVIG...insurance is another matter!) didn't seem too interested in the steroid burst. His rational was that he didn't feel it was necessarily predictive of how sucessful IVIG would be. I was okay with that since

 

1) we would still want to try IVIG even if our dd didn't have a response to steroids

2) our dd hasn't been in a major exacerbation since starting the Azith. so we didn't need it for symptom relief and since symptoms were full blown it may have been a little harder to see if steroids were helping

3) we didn't need it to confirm the PANDAS diagnosis

 

Yes, dcmom...that is the big question. Is IVIG a treatment or a cure?

[boychildsmom]

Claire-

 

Thanks for all your info.

 

We have also had luck with 2 good and interested neurologists. Both of them feel having tonsils out could only help (though not solve) things. I know it is hard to tell if tonsils are cryptic untill they are out.

 

I am very tempted to just cut through all of this bs and do IVIG. My only lingering thought is that so many have not been cured by IVIG. I have started to wonder if it is more of a treatment than a cure. Do you have any thoughts/ insight on that?

 

Eileen

 

 

The IVIG is a therapy, not a cure. The doc warned us not to expect a cure. When it's effective, it only knocks out current tics, but doesn't prevent strep or future tics. IVIG efficacy only spans a couple months. We would use it monthly if insurance covered the cost. Our goal with IVIG was to give our son a clean slate to begin prophylactic meds. He did come out of it with a clean slate. There were precautions his doc took. Prior to IVIG, he treated my son and family for strep using clindamycin & rifampin. Blood work was performed. IVIG would have been delayed if any of us had active strep infection. Post-IVIG, while my son was still at the hospital, he received proph bicillin injections. There was an emergence of slight tic movements after a few months. They weren't frequent or repetitive, more like occasional shadows of old tics. The next time he got strep, about a year later, his response was the same as pre-IVIG...tics & OCD. He's not had the same severity of tics/OCD since, but that's been a function of catching strep faster.

 

Tonsillectomy has been on my radar to check out. I would appreciate any infor you can provide on your neurologist's rationale.

[EAMom]

Hi boychildsmom,

welcome. Could you tell us what dose and brand of IVIG did your son get? how old was he at the time and what did he weigh?

 

Also, what kind of doc did you get the IVIG through?

 

How long did you continue abs after IVIG (pen injections?). Are you doing any sort of prophylactic abs now? What type and dose?

[dcmom]

boychildsmom-

 

Tonsils. I don't have a lot of science on this. I asked my 2 neurologists if they would suggest a T&A, and they said yes.

 

Basically, I feel if she can avoid any cases of strep it seems worthwhile.

 

The ENT thought so too. He said there have been one or two case studies that indicated great improvement in pandas patients with T&A. He also confirmed that there can be dormant strep in the tonsils, just kept at bay with antibiotics.

 

It seems a fairly routine procedure, covered by insurance, that may help us fight pandas. I wanted to get it done before we try IVIG, which we will if there is another flare.

 

Mommd-

 

Steroids. We have not done a steroid burst yet, but are considering if things get worse at some point. I know it is more of a diagnostic tool, and I know steroids have alot of side effects. But, could it be used as treatment (if it works), in conjuction with antibiotics, if child has a flare once or twice per year. I know that for some the effects of the steroids have been somewhat long lasting. Do you have any thoughts on this?

 

IVIG- I am planning on trying if/when she has another episode. Can you comment on the safety/risk with IVIG? From my very minimal research, it seems to me, that the ivig product has significantly improved and there is very little chance of contacting a disease from the product. Although, even with that, many doctors and parents throw around the word "risky" when talking about treating pandas with it. This is making my husband somewhat nervous. I wish I had some concrete science to see what the risk is. Do you have any info on that?

[EAMom]

IVIG- I am planning on trying if/when she has another episode. Can you comment on the safety/risk with IVIG? From my very minimal research, it seems to me, that the ivig product has significantly improved and there is very little chance of contacting a disease from the product. Although, even with that, many doctors and parents throw around the word "risky" when talking about treating pandas with it. This is making my husband somewhat nervous. I wish I had some concrete science to see what the risk is. Do you have any info on that?

 

This bothered us for a long time as well. They use it for so many things...from asthma treatment (not cure) to prevent miscarraiges. Yet suddenly it is "risky" when one uses it for PANDAS. Of course everything has risks. Personally, I consider not treating the PANDAS to be more risky.

[boychildsmom]

Hi boychildsmom,

welcome. Could you tell us what dose and brand of IVIG did your son get? how old was he at the time and what did he weigh?

 

Also, what kind of doc did you get the IVIG through?

 

How long did you continue abs after IVIG (pen injections?). Are you doing any sort of prophylactic abs now? What type and dose?

 

 

My son received IVIG at seven. It was ordered by his pediatric infectious disease MD. I have to check weight/brand/dose at his next appt in a week and a half. Son was 90% in height-weight. His doc went with highest safe dose that could be administered in <24 hrs. Procedure took about 23 hrs in hospital.

 

As prophlylactic, he was given two simultaneous (one in each thigh) bicillin injections before leaving hospital. Dose was 1.2, presumably million units, but don't know if that was 1.2 or 600 units per thigh. I'd guess 1.2 total as he was <100lbs. Maybe a doc can jump in w/standard bicillin dosing. His ID doc chose injectable due to symptom severity pre-IVIG. Also, at my son's weight, injections were able to treat emerging strep infection--knock it out before it took hold. With age/weight gain, we saw more frequent break throughs.

 

At age eight he was thriving, but hated injections. I wanted flexibility for occasional med breaks. His doc agreed switching to oral penicillin proph. At that time, scrip 250 mg 2x daily. We often gave both doses in a.m., since he had less strep exposure in p.m. Oral proph was effective, providing we never ever thought of it as a cure for strep infection, which is tempting. With my son, any sign of strep infection warrants prompt doc visit for treatment. Otherwise, a new tic emerging from the infection goes bonkers on daily prophs. The oral proph dose is not enough to kill infection, but is enough to toy with his immune response. We saw that happen on a few occasions.

 

If I had it to do over, we'd have stopped injections after six months or a year. By age eight, oral proph offered more flexibility and a steady daily level of pen, so he could partake in school, sports, and camp, without our worrying quite so much. He remained on oral proph two plus years.

 

While on injectable & oral prophs, we were able to keep tics gone or saw only occasional slight fleeting tics, when he was overtired or sugared up. He had at least one annual break through strep infection, but never exceeded two break throughs. His tics were better, but the strep-tic response did not change post-IVIG. We got better at recognizing early strep infection signs and getting him treated w/clindamycin & rifampin. That's the treatment combo that works best for him so far. Tics diminish 3-5 days on treatment.

 

Almost two years ago, he was doing so well we decided to stop prophs. I know how crazy that sounds. Partly we wanted to assess baseline. He'd been on daily meds so long. Also, we were more proficient identifying strep infection early. He'd not experienced another bout resulting in severe or persistent tics since first year of onset. While off prophs, he had more strep infections. Some would call it an insignificant increase (up to 2-3 x annually). Tics/OCD may have lingered longer after treating the infections, tough to say. I can say we spent more time worrying. Sending him to all-day events, sleepovers or sleepaway camp was especially concerning--those type of activities often yielded a race to the doc for strep treatment.

 

Last month we missed his early signs of strep infection while traveling with him. He developed a vocal tic, which became persistent and loud fast. There was disagreement with his ped on how aggressive an initial treatment to use. Her choice of high dose penicillin failed, which we told her would happen. His vocal tic went complex and multiple--worst we've seen since age seven. He was out of school numerous days this month, due to controllable tics. He dropped off honor roll, missed a few finals, and had to skip track meets and taekwondo. He plays three instruments, which is the only time tics stopped (other than sleep) (has anyone else seen music phenom?). Thankfully, he is out of the woods now. Last Thursday he started clindamycin & rifampin. This morning I only heard him tic twice readying for school. We'd already discussed with his ID doc an IVIG when school lets out. It may not be necessary. We'll see.

 

I don't know if this recent case of strep could have been prevented had we kept him on daily prophs. But it would have afforded some protection. Another poster wrote that preventing even one case of strep is worth it. So true. Aside from academic and social inconveniences, there's no way to assess brain damage each time. He can afford to lose a few gray cells. I'd rather not take chances, if we can prevent it. The past month could have been worse if he'd been away at a two week camp. He needs more protection than I can give at age 12+. He can't be watched 24/7--or afford time off school. We won't have him off prophs again until college graduation. When the clindamycin & rifampin course is complete, he'll immediately resume daily prophs. His proph scrip was increased to 500 mg 2 x daily.

 

Hope this helps. Have a great day!

Boychildsmom

[boychildsmom]

IVIG- I am planning on trying if/when she has another episode. Can you comment on the safety/risk with IVIG? From my very minimal research, it seems to me, that the ivig product has significantly improved and there is very little chance of contacting a disease from the product. Although, even with that, many doctors and parents throw around the word "risky" when talking about treating pandas with it. This is making my husband somewhat nervous. I wish I had some concrete science to see what the risk is. Do you have any info on that?

 

This bothered us for a long time as well. They use it for so many things...from asthma treatment (not cure) to prevent miscarraiges. Yet suddenly it is "risky" when one uses it for PANDAS. Of course everything has risks. Personally, I consider not treating the PANDAS to be more risky.

 

 

I totally agree PANDAS risks outweigh IVIG risks. In researching to prep for IVIG, I found the risks overstated relative to stats. There are rare instances of life threatening reactions. Most side effects are self limiting--flu, headache. My son had a bad headache for a day or two. Check source for any IVIG research. Blood product safety varies. Domestic blood products are lower risk.

[EAMom]

Wow, thanks for the response. Definitely let us know what dose/brand your son got. I know Dr. K gives his IVIG over 2 days...I day of 23 hours sounds like quite a drag!

 

This statement did raise some red flags for me.

At age eight he was thriving, but hated injections. I wanted flexibility for occasional med breaks. His doc agreed switching to oral penicillin proph. At that time, scrip 250 mg 2x daily. We often gave both doses in a.m., since he had less strep exposure in p.m.

 

In Swedo's DAN! talk (posted by peggysue), she (swedo) explained that pen absolutely needs to be given 2x daily due to its short half life. SHe said if you miss a dose you are essentially unprotected for several days!! From what I can tell, the same is true of Amoxicillin and Augmentin (short half life).

 

Did your son do better while he was on the injections (vs. oral)?

 

I should also add that nowadays there is a lot of Amoxcillin failure in strep throat (and I would think pen failure in strep throat) due to intracellular strep and coaggreation. http://www.entrepreneur.com/tradejournals/.../169459644.html I would think pen would have the same problems as amoxicillin.

 

I definitely plan on continuing dd on abs after IVIG ( hopefully lowering the dose of Azith eventually or switching to pen), at least through adolescence. THere are a lot of unknowns and so I am inclined to ere on the side of caution. I do really hope is that Leckman/Swedo/Cunningham will eventually be able to carry out their IVIG PANDAS study and we'll have more information in a few years on the best course to take re treatment (including post IVIG). Meanwhile, I'm not sitting around waiting for them to take action.

[boychildsmom]

Wow, thanks for the response. Definitely let us know what dose/brand your son got. I know Dr. K gives his IVIG over 2 days...I day of 23 hours sounds like quite a drag!

 

Not bad. He slept nearly half the time and was allowed to go to the playroom w/mobile IVIG.

 

This statement did raise some red flags for me.

At age eight he was thriving, but hated injections. I wanted flexibility for occasional med breaks. His doc agreed switching to oral penicillin proph. At that time, scrip 250 mg 2x daily. We often gave both doses in a.m., since he had less strep exposure in p.m.

 

In Swedo's DAN! talk (posted by peggysue), she (swedo) explained that pen absolutely needs to be given 2x daily due to its short half life. SHe said if you miss a dose you are essentially unprotected for several days!! From what I can tell, the same is true of Amoxicillin and Augmentin (short half life).

 

Thanks for this info. His once daily worked well. But I checked this out--and 2x daily is better. He'll begin prophs next week. We'll be following 2x daily scrip, especially at 500mg a pop.

 

Did your son do better while he was on the injections (vs. oral)?

 

My son did better on oral. Both worked about equally for prevention. We could keep him at more consistent levels with oral. There was not the 21 day decline in efficacy. And, he had more side effects with injections, especially the first few days after...yeast, soreness, low fever, and mild PANDAS symptoms. Oral never caused more than yeast if we didn't keep up on probiotics. Also, the bi injections are not at all like flu shots. They have to slowly push the med in, which seems like an eternity holding down a screaming hysterical child. We were always scheduled end of day, so he wouldn't scare patients away. IT was very anxiety inducing for him and me. He still needs reassurance NO SHOTS before doc appts. But he now takes blood draws like a champ--cakewalk in comparison.

 

I should also add that nowadays there is a lot of Amoxcillin failure in strep throat (and I would think pen failure in strep throat) due to intracellular strep and coaggreation. http://www.entrepreneur.com/tradejournals/.../169459644.html I would think pen would have the same problems as amoxicillin.

 

Amoxy was useless as strep treatment for my son. We never tried it as a proph. Pen proph worked for him. I don't know the reason for the difference, perhaps because a proph is not to treat strep--just raise resistance. Pen is only effective for treatment in him at exceedingly high doses--and only if strep infection is still localized, which is harder to tell as he nears puberty (and has other priorities than reporting symptoms to Mom, who will haul him off to the doc). Going forward we won't be taking chances on pen treatment, since it failed so badly this past month. His pen proph dose seems sufficiently high. I'm hoping it's still effective. If not, I'm sure his ID doc has a step-up program. I am curious to hear more proph azith experiences. Why did you choose azith proph? How has it worked for your daughter?

 

I definitely plan on continuing dd on abs after IVIG ( hopefully lowering the dose of Azith eventually or switching to pen), at least through adolescence. THere are a lot of unknowns and so I am inclined to ere on the side of caution. I do really hope is that Leckman/Swedo/Cunningham will eventually be able to carry out their IVIG PANDAS study and we'll have more information in a few years on the best course to take re treatment (including post IVIG). Meanwhile, I'm not sitting around waiting for them to take action.

 

Do you have a link to Leckman/Swedo/Cunningham study? Just curious. If my son's leg was being mauled by a pitbull, I'd grab for the biggest baddest stick I could lay hands on. I feel a similar affection for his brain. The first Swedo IVIG-PEX trial was enough evidence for us. Patience stopped being one of my virtues sitting in ped offices years ago!

 

Thank you for the tip on the daily proph--I'll have to check out the DAN!

[EAMom]

Hi Claire...one more thing about the BBB. Per my dh.... In addition to stress/nitrous oxide...

 

There are lots of studies that one of the toxins from the strep itself could cause inflammation and leakage across the BBB

[EAMom]

Do you have a link to Leckman/Swedo/Cunningham study? Just curious. If my son's leg was being mauled by a pitbull, I'd grab for the biggest baddest stick I could lay hands on. I feel a similar affection for his brain. The first Swedo IVIG-PEX trial was enough evidence for us. Patience stopped being one of my virtues sitting in ped offices years ago!

 

Thank you for the tip on the daily proph--I'll have to check out the DAN!

 

No link on the study which is yet to take place (I hope it will).

 

I'm not sure if the info. on Pen. dosing (2x daily) is in the original DAN! broadcast or the question and answer session that was posted later.

 

An observation about the Swedo 1999 IVIG/pex study http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf ...the IVIG group didn't acutally have a statistically significant decrease in tics. I don't know if this is a factor of of IVIG not being as helpful for tics (vs. OCD symptoms) or if it was b/c the IVIG group (vs. the PEX group) had a pretty low level of tics to start with, so it would be relatively harder (from a statistical view point) to show a decrease. As a note, the IVIG group did have less tics (19%), just not enough to be considered statistically significant. It is unclear if the IVIG group had had the same level of ticki-ness as the PEX group, would the study have been able to demostrate a significant improvement with IVIG /tics?

 

The plasma exchange group showed significant improvements in tic severity over placebo but the IVIG group did not, perhaps because baseline ratings were highest in the plasma exchange group.

 

It is also interesting to note that the 2 children that failed to respond to IVIG/pex both had tics without OCD...it makes me wonder if these kids were truly pandas (vs tourettes) or if there is something about predomiently tic-ky PANDAS that is less responsive to IVIG/pex vs. predominently OCD-ish PANDAS.

 

The study does also mention that a few children in the study had a 2nd course IVIG or pex due to symptom exacerbation associated with strep exposure/rising titers. Pen was used as the prophylactic abs (post IVIG). (Prophylaxis was used since the theory was that Pex/ivig would only "fix" the kids until they got strep again.) I would have been interesting to know if Azith. would have been a better prophylaxis...due to it's long 1/2 life you run into less issues if a dose is missed. I could see where it would be easy to accidently miss a dose with Pen somewhere along the line and mess up your prophylaxsis.

[mom md]

I really appreciate all the wonderful advice I get from this forum I could be wrong but I do think it is reasonable to suspect that IVIG or steroids will be needed periodically to treat "relapses" until puberty when the BBB closes. Carter's ASO had dropped to 950 (from 1750) and his antiDNase B rose to 1360 from 1320 after two plus months of antibiotics. his symptoms improved somewhat but his ANA is positive at +1:640 which just seems to point once again to an autoimmune course of treatment rather than antibiotics alone. Does anyone else have any info to add about really high ANA titers. Carter's kidneys are fine and all of his other (anti ribosomal protein, C3 and C4, etc) tests were negative.