trying different antibiotics?

[bronxmom2]

Hi, I am new to this forum and so happy to have found so much information!

 

I discovered PANDAS this year because my 6yo ds's behavior grew increasingly erratic this fall (inattentive, impulsive, defiant, extremely fidgety)-- and he had 3 cases of strep over the same period. For the first two cases, he was given amoxicillin, which "cured" the strep symtpoms, but his behavior just kept getting more and more errastic-- for the third case, the doctors realized the amoxicillin had never wiped out the strep at all and put him on Cefdinir-- a more global antibiotic.

 

On Cefdinir, his behavior immediately improved. I mean within hours. And his appearance improved-- his eyes were no longer glassy, his color improved. My son was back!

 

And so I discovered PANDAS, in early December. I talked an ENT into giving me two more weeks of Cefdinir, so he took it for a total of a month, and he was fine. Still his bouncy, excitable self, but he was PRESENT. The teacher also noticed a sudden drastic improvement.

 

As soon as he went off the Cefdinir, it all came back. Since he quickly developed another infection, the pediatrician gave us more Cefdinir (I was begging for it the way a drug addict would beg for herion), and also checked his antibodies level-- which were indeed elevated.

 

My son took the Cefdinir for 10 days and then switched to a prophylactic Amoxicillin.

 

Within hours, it was all back.

 

The pediatrician will not give him more Cefdinir because it is too global.

 

I hear that zithrmycin and/or augmentin might be better, do you guys have any other suggestions.

 

What I feel is happening is that my son has a colonized, deep-rooted resistant infection that the Cefinir suppresses but does not eradicate. They are going to take out his tonsils-- maybe I'll get lucky and the tonsils/adenoids are the source of his infection-- but my hopes are not that high. I feel like I should be looking for an infectious disease specialist... I feel like my pediatrician is fed up with us. He just sort of shrugs when I tell him the Amoxicillin is not working.

 

This thing is ripping our family apart... I'm sure you all know about that!

[michele]

We have been on cefdinir for almost two years. I was wondering what he meant about it being too global? We tried Augmentin, pen vk, but symptoms still flaired especially the urinary frequency and ocd. Then on cefdinir is all went away. Tics and behaviors still wax and wane though. Now it seems sililar to tourettes to me. I wonder if PANDAS can turn into tourettes? However the severity of the compulsions has never been as bad again as it was on the augmentin and pen vk. I would love to try azith because so many have had positive results on it but I have never found a Dr. to prescribe it long term. You are right about feeling so much joy or worry over an antibiotic that it seems like you are getting an illegal drug! We are still struggling with other issues that are symptoms of the brain inflammation I think such as ther ADHD and intrusive thoughts that are hyperfocused and small tics that are similar to mild tourettes. It has been a long difficult road and I hope you find recovery soon. I have seen so much of my son's childhood affected from this condition since we have been dealing with this for 6 of his 7 years. The neurologist visits always keeps me grounded though. There are so many kids he sees who are truely sick in the sense of the word that they can't walk, talk, eat, lifelong diseases that are fatal etc. I know it could be alot worse. Glad you found it here. We are here for you! It is great to find a place and people that can relate to your issues!

 

Hi, I am new to this forum and so happy to have found so much information!

 

I discovered PANDAS this year because my 6yo ds's behavior grew increasingly erratic this fall (inattentive, impulsive, defiant, extremely fidgety)-- and he had 3 cases of strep over the same period. For the first two cases, he was given amoxicillin, which "cured" the strep symtpoms, but his behavior just kept getting more and more errastic-- for the third case, the doctors realized the amoxicillin had never wiped out the strep at all and put him on Cefdinir-- a more global antibiotic.

 

On Cefdinir, his behavior immediately improved. I mean within hours. And his appearance improved-- his eyes were no longer glassy, his color improved. My son was back!

 

And so I discovered PANDAS, in early December. I talked an ENT into giving me two more weeks of Cefdinir, so he took it for a total of a month, and he was fine. Still his bouncy, excitable self, but he was PRESENT. The teacher also noticed a sudden drastic improvement.

 

As soon as he went off the Cefdinir, it all came back. Since he quickly developed another infection, the pediatrician gave us more Cefdinir (I was begging for it the way a drug addict would beg for herion), and also checked his antibodies level-- which were indeed elevated.

 

My son took the Cefdinir for 10 days and then switched to a prophylactic Amoxicillin.

 

Within hours, it was all back.

 

The pediatrician will not give him more Cefdinir because it is too global.

 

I hear that zithrmycin and/or augmentin might be better, do you guys have any other suggestions.

 

What I feel is happening is that my son has a colonized, deep-rooted resistant infection that the Cefinir suppresses but does not eradicate. They are going to take out his tonsils-- maybe I'll get lucky and the tonsils/adenoids are the source of his infection-- but my hopes are not that high. I feel like I should be looking for an infectious disease specialist... I feel like my pediatrician is fed up with us. He just sort of shrugs when I tell him the Amoxicillin is not working.

 

This thing is ripping our family apart... I'm sure you all know about that!

[bronxmom2]

Thanks, michele. He just adamantly says it is "too global"-- attacks too broad a spectrum of microbes and will suppress his immune system, I guess. Your dr. did not express any worries like this?

[EAMom]

Bronxmom2---are you in NYC?

 

Ha ha...did your pediatricin use the words "too global"? I have not heard that one before! Personally, I'm much more worried about my dd suffering from mental illness and brain damage from PANDAS vs. her immune system being "suppressed" from the antibiotics!

 

Azithromycin and Augmentin are also broad spectrum. IMO, if cefdinir worked for your son that is what I would stick with. Cefdinir is a 3rd generation Cephalosporin, in other words a newer version of Keflex (another drug some PANDAS kids use).

 

Our dd was on 4 antibiotics before we got a remission with Azithromycin. 1st was Augmentin. She had initial mood improvement but not a big improvement in OCD. She got worse again on Amoxcillin. Then we tried Cefuroxime (a 2nd generation Cephalosporin) which didn't do anything either. Azithromycin was what really made a big difference with us.

 

But, which antibiotic works varies from person to person. We think our PANDAS dd is a strep carrier and that her strep was intracellular...which is why the Azith. worked (it can get at intracellular strep). Also, Azith. is immune modulating.

 

However, some PANDAS kids do well on Keflex, but not on Azithromycin. Also, there is more Azithromycin resistance in certain parts of the country.

 

In an ideal world, you would want to use something like penicillin...very narrow spectrum (pretty much just gets strep!) and has a long track record of safety (used in all those kids with Acute Rheumatic Fever). Unfortunately, pen (and the broader spectrum amoxcillin) doesn't seem to "cut it" in most cases of PANDAS.

 

I agree that many cases of recurrent strep infections (back to back) are cases where the strep is not totally cleared in the first place...hiding out in the tonsils, sinuses or wherever.

 

Michele--- just don't let the neurologist saying "there are kids worse off than yours" as an excuse to not go all the way with the treatment your son needs (steroid burst/IVIG). I do appreciate that there are children with worse diseases (with no cures/good treatments). What is so hard for PANDAS parents is dealing with clueless, uninformed docs, or docs that tell you "PANDAS doesn't exist", or "your child should be in a mental institution"....meanwhile we have to beg and plead with 10 or 20 doctors to finally find one who will take you seriously and give us a simple antibiotic rx , let alone agree to IVIG which we then pay out of pocket for b/c the insurance won't cover it b/c "PANDAS is contraversial etc etc." What a ridiculous run around.

 

And, I also find it maddening that so many kids go undiagnosed for years (or forever) b/c most docs don't know to do a simple throat culture early on at the onset of symptoms (tics, urinary issues, ocd).

 

MIchele...re your son's tics...I have a theory that these kids develop a "baseline" change (hopefully helped with IVIG) with recurrent PANDAS episodes. Each episode has the potential to leave your child a little less neurotypical, whether it is tics, ADHD, anxiety, or whatever. Antibiotics seem to do less with each recurrent episodes. But, it is certainly better to have them on abs (when you find one that works) than allow a full-blown PANDAS episode. I do wonder how many kids with chronic tourettes are actually chronic untreated PANDAS cases.

[Pudgeo]

HAHA I loved that analogy Bronxmom..like an addict begging for heroin, All the parents here get very passionate about treating their children! You know in your gut what your kids need and the Dr's are clueless.

 

I must say my son has had PANDAS symptoms for 2 yrs and 1 month..we have been on azith for 1 month and WOW he is coming back..not 100% but very close..he still has some concentration issues but he has his personality and playfulness back!

So even after 3 IVIG's I see better results with azith than anything!I am lucky my DAN Dr is passionate too about doing whatever it takes to get our kids better!Good Luck! Sarah

[EAMom]

wow Sarah,

that is so great that your son is doing better! maybe the combination of Azith. and IVIG is a good way to go for some kids....

[bronxmom2]

EAMom,

Thanks, this is extremely useful information. It was definitely my instinct that the effects of this things are much more dangerous to my son than the immune problems caused by antibiotics. But the doctor does not seem to agree. And I thought this was a good doctor who accepted PANDAS and even has some other PANDAS patients whose parents I know...

 

I actually have some of the Cefdinir left and have been secretly giving it him for the last two days-- to test my theory-- and it does not seem to be helping as much as it did before. Could he have developed resistance to it?

 

Do any of these kids ever have SERIOUS treatment with heavy antiobiotics-- the kind they use to wipe out pneumonia in hospitals, etc.-- to wipe out intracellular infections once and for all? I know a mother whose kid had behavioral problems-- in the AS spectrum-- who then got pneumonia and wound up in the hospital. When he recovered from the pneumonia, his behavioral probs were also cured.

 

Yes I am in NYC-- do you know any doctors you could recommend in NYC?

 

Thanks...

[EAMom]

That is interesting about the kid with pneumonia...so either the severe illness "reset" his immune system (this happened to a friend of mine that had IBD!) or the strong antibiotics cleared an ongoing strep infection (in addition to the pneumonia). How old was he?

 

Many on this forum find antibiotics become less effective with repeated episodes. Also, IMO, some of these kids (if the PANDAS has gone on long enough) need time for the brain inflammation to subside.

 

You can try giving Ibuprofen (give with food) with the antibiotics. We did that for a couple of months. Others think it helped too...decrease brain inflammation. I haven't found the other NSAIDS (eg aleve) to work for this.

 

Here's a thread about NY/NJ docs http://www.latitudes.org/forums/index.php?showtopic=4481

 

Our ped was initially very nervous about our antibiotic use as well. We went to a pediatric rheumatologist and a pediatric neurologist that basically aggreed with our use of abs and this made our ped feel better.

 

Most people on this forum also give their kids probiotics if they are on antibiotics.

 

I have not personally heard of anyone with PANDAS suffering from any serious complications b/c of the antibiotics. IMO antibiotics are certainly the lesser of two evils!!