benzathine penicillin

[Darla]

Has anyone done this? Take monthly injections of bezathine penicillin?

[boychildsmom]

Has anyone done this? Take monthly injections of bezathine penicillin?

 

 

At seven and eight my son was on bicillin injections every 21 days. I've since read bicillin should be given every 18 days. You might want to research recent trials using bicillin for prevention of bacterial infections. The benefits we saw w/bicillin included compliance (no BID!) and post-injection peak seemed to confer some ability to treat mild GABHS infections in a young child. Downsides--pain, soreness, low fever, and occasional yeast. Also, we saw evidence of declining efficacy when he was due for injections. At eight, he switched to daily oral pen. He had occasional break through GABHS infections on both bi & pen. Neither was very effective anti-inflammatory or to reduce wax & wane tics post-GABHS infections.

 

We recently switched to azith proph. Took some convincing. MD favors pen for RF/SC. I already see modulatory & anti-inflammatory benefits. He doesn't have an active infection, but did in Apr, so titers aren't normal range yet. Azith controls his residual tics much better than bi/pen. We're not seeing tics most days, occasionally evening (or if he snarfs trigger food). A day or two after starting azith, he reported fewer urges, easily ignored. He now reminds me it's med time, which is high praise for a 12 y.o. I'll be monitoring break through frequency...and if azith expedites titer decline.

[EAMom]

hi boychildsmom,

What dose of azith. are you on (and how often). Also, how much does your son weigh?

 

Our 8.5 year old (55 pounds) is on 250mg/day. We noticed a ramp of symptoms when we tried to decrease to 125mg/day. Our ped. immunologist agrees that a lot of its benefits may be immune modulating/anti-inflammatory, not just strep prevention. We haven't had IVIG yet but the immunologist has agreed to it and we hope to do it this summer. We still plan on continuing the azith. post IVIG but I was hoping to at least get to a lower dose.

[boychildsmom]

hi boychildsmom,

What dose of azith. are you on (and how often). Also, how much does your son weigh?

 

Our 8.5 year old (55 pounds) is on 250mg/day. We noticed a ramp of symptoms when we tried to decrease to 125mg/day. Our ped. immunologist agrees that a lot of its benefits may be immune modulating/anti-inflammatory, not just strep prevention. We haven't had IVIG yet but the immunologist has agreed to it and we hope to do it this summer. We still plan on continuing the azith. post IVIG but I was hoping to at least get to a lower dose.

 

 

DS receives 250mg/day. He's 12 y.o. @ 145lbs @ 5'4"+ (taller than Mom...wah!). He previously was prescribed 500mg pen BID. Interestingly, lower dose azith is working better than we ever saw on pen. My son loves the results. There's typically a few weeks symptom backlash post-GABHS. This time his residual tic dissipated within a day or so starting azith (caveat--his recent GABHS tic was relatively mild after treatment, but still sometimes annoying). If azith can prevent GABHS, I'm sold.

 

Do you check ASO titers? Could your son have a mild GABHS infection? That would explain seeing his symptoms ramp on lower dose. The lower dose wouldn't adequately prevent antibody production. Your immunologist is smart keeping him on a higher dose pre-IVIG. He'll get better results if GABHS bacteria/antibodies are minimal to start. My son's MD prescribed clindamycin & rifampin pre-IVIG--and treated us, too (and the dog!). He said IVIG results would be shortlived if my son had an active GABHS infection or caught one immediately, because he'd resume producing antibodies.

 

When do you give antibiotics? I used to give them in a.m. Now I give at bedtime. It seems to minimize residual symptoms resulting from fluctuating medication levels. Any peak occurs while he sleeps....wakes with consistent level. I've never seen medical research supporting doing this--but it seems to work better for him. You might try and see how it works for him.

[EAMom]

Yes, we give the Azith. at night, just b/c we're less likely to forget then.

 

My dd's ASO/anti-dnase B titers have always been really low. They were low 3/08 (2mo. post FEVER/onset of behavior change) when both PANDAS dd and her sister had positive throat cultures at the time, and also 1 mo. later. ASO was checked again recently and it was still extremely low (we wouldn't have bothered doing the ASO but we were getting blood for other tests anyway and the immunologist was curious). I think she is just one of those kids that doesn't produce ASO/anti-dnase b.

 

On the other hand, we did get CaM kinase II and anti-neural antibodies checked via Dr. Cunningham's lab in April. Her CaM kinase II levels and anti-neural antibodies were significantly elevated (her CaM kinase II level was at the upper end of PANDAS kids, just a bit below the SC kids). This is after being on Azith for 1 year....obviously time for IVIG. We didn't even consider her to be in a significant exacerbation at the time of the blood draw. It is my belief that the Azith. is keeping things under control (immune mod./anti-inflam) and if we were to stop she would go completely bizerk (sp?) again even in the abscence of strep.

 

We're planning to do a steroid burst and then IVIG sometime this summmer.... and will follow up monitoring CaM kinase II/anti-neural antibodies.

 

We do get her sister throat cultured about 1x a month and grown-ups get cultured if we have any symptoms. My dd reacts to colonization (strep exposure), not just infection. We also believe that any other illness/stress which opens up her blood brain barrier causes symptoms to ramp. She is pretty functional (symptoms 10-20% of what they were spring 08), but has ongoing low level anxiety, handwriting issues, math/spelling issues. She also gets some mild tics, restrictive eating, increased anxiety, tantrums when she starts to ramp (eg when a family member is strep postive...).

[boychildsmom]

I assume 300+ is her ASO. When my DS was younger, we usually saw mild tics and behaviors above 300. You mention colonization. Have you thought about GABHS de-colonization? You reminded me that the first course of rifampin & clindamycin my son received was given more frequently. We had to wake him for a dose....either six or eight hour intervals. That course was supposedly for decolonization. I don't know if he was a carrier, but his titer eventually went to normal range. Just a thought.

 

 

 

Yes, we give the Azith. at night, just b/c we're less likely to forget then.

 

My dd's ASO/anti-dnase B titers have always been really low. They were low 3/08 (2mo. post FEVER/onset of behavior change) when both PANDAS dd and her sister had positive throat cultures at the time, and also 1 mo. later. ASO was checked again recently and it was still extremely low (we wouldn't have bothered doing the ASO but we were getting blood for other tests anyway and the immunologist was curious). I think she is just one of those kids that doesn't produce ASO/anti-dnase b.

 

On the other hand, we did get CaM kinase II and anti-neural antibodies checked via Dr. Cunningham's lab in April. Her CaM kinase II levels and anti-neural antibodies were significantly elevated (her CaM kinase II level was at the upper end of PANDAS kids, just a bit below the SC kids). This is after being on Azith for 1 year....obviously time for IVIG. We didn't even consider her to be in a significant exacerbation at the time of the blood draw. It is my belief that the Azith. is keeping things under control (immune mod./anti-inflam) and if we were to stop she would go completely bizerk (sp?) again even in the abscence of strep.

 

We're planning to do a steroid burst and then IVIG sometime this summmer.... and will follow up monitoring CaM kinase II/anti-neural antibodies.

 

We do get her sister throat cultured about 1x a month and grown-ups get cultured if we have any symptoms. My dd reacts to colonization (strep exposure), not just infection. We also believe that any other illness/stress which opens up her blood brain barrier causes symptoms to ramp. She is pretty functional (symptoms 10-20% of what they were spring 08), but has ongoing low level anxiety, handwriting issues, math/spelling issues. She also gets some mild tics, restrictive eating, increased anxiety, tantrums when she starts to ramp (eg when a family member is strep postive...).

[michele]

So you were able to convince a local Dr. to do the azith? Do most of you see local Dr.'s that know or understand PANDAS? Or do you travel to see the specialist who treats PANDAS? I have tried Dr. after Dr. locally and none of them believe or want to treat PANDAS. I even called a couple at Cleve Clinic that were on a PANDAS study and they were not interested. I don't get it? It seems OH has been tainted by someone on the subject of PANDAS. I can travel to Chicago or Penn or MD but it would be nice to have a local Dr. on board for the antibiotic azith at least. Even Gilbert in Cinn, OH who was on several Sweedo studies, seems really conservative to treatment. I keep dragging my son Dr. to Dr. with nothing gained but psych prescriptions. That is the belief in OH to treat PANDAS symptoms with psych drugs. It is so annoying! No local Dr's want to figure out why this is happening.

 

Has anyone done this? Take monthly injections of bezathine penicillin?

 

 

At seven and eight my son was on bicillin injections every 21 days. I've since read bicillin should be given every 18 days. You might want to research recent trials using bicillin for prevention of bacterial infections. The benefits we saw w/bicillin included compliance (no BID!) and post-injection peak seemed to confer some ability to treat mild GABHS infections in a young child. Downsides--pain, soreness, low fever, and occasional yeast. Also, we saw evidence of declining efficacy when he was due for injections. At eight, he switched to daily oral pen. He had occasional break through GABHS infections on both bi & pen. Neither was very effective anti-inflammatory or to reduce wax & wane tics post-GABHS infections.

 

We recently switched to azith proph. Took some convincing. MD favors pen for RF/SC. I already see modulatory & anti-inflammatory benefits. He doesn't have an active infection, but did in Apr, so titers aren't normal range yet. Azith controls his residual tics much better than bi/pen. We're not seeing tics most days, occasionally evening (or if he snarfs trigger food). A day or two after starting azith, he reported fewer urges, easily ignored. He now reminds me it's med time, which is high praise for a 12 y.o. I'll be monitoring break through frequency...and if azith expedites titer decline.

[ShaesMom]

We've been lucky so far. Our Ped Rheumy is a young guy (approx 30-35) who says that he saw a "true" Pandas case in Med school (he now works at the Children's Hospital). I didn't ask him to define "true" case but it sounded like they were able to detect inflammation on an MRI. Our new Ped is also a younger gal around the same age. According to her, they have a couple of other patients at their practice who may be Pandas kids. She of course wouldn't go into any more detail on these other cases.

 

Living in Nebraska, I never expected to find anyone who would even consider Pandas as a dx.

[EAMom]

My dd's most recent (4/09) ASO was <13. (ref. range: antibody not detected <25; schoolage children <166) (This is after 10mo. of Azith. at 250mg/day).

 

I don't remember exactly what her ASO's were from 3/08 (when she was culture positive and her PANDAS was severe enough to require hosp.) and 4/08 ....they were definitely below the schoolage ref. range...in the 50's or 60's at the most.

[boychildsmom]

You won't find a doctor willing to wave PANDAS flag. You bet it's a conspiracy. AMA licenses doctors. AMA opposes NIMH findings. AMA doctors don't want to even look at PANDAS/SC kids. I went through the same frustration.

 

We have no local doctors officially treating SC/PANDAS, except psychiatrists or neurologist, who want to prescribe psych drugs for symptoms. The pediatrician and infectious disease doctor we finally found don't technically treat tics/OCD associated with SC/PANDAS. They treat the underlying cause, which for him is resistant systemic strep infections. Not so coincidentally, his tics subside when GABHS bacteria is cleared out.

 

If his tics didn't go away with proper treatment for resistant systemic GABHS, we'd be referred to a psychiatrist/neurologist for suppressants. So far, that's been unnecessary. His tics are so reliable with GABHS, his doctors use them as the primary diagnostic tool. But we also have swabs, cultures and titers taken, because the record needs to show a history of resistant systemic GABHS infections, in order to justify continued treatment on the antibiotics for infections and prophylaxis. His doctors know it's SC/PANDAS. They openly discuss both with me. But I'm sure they don't do so at AMA conventions. They are doctors, not lobbyists.

 

Make sense? It's not worth approaching medical doctors with whacky shrink theories on SC/PANDAS. That is how Swedo's research is viewed by most doctors. Psych research is viewed skeptically by medical doctors. Swedo's research was a barn burner. Ask any doctor. They'll tell you. Personally, I think Swedo rocks. My son wouldn't have qualified for her research because he had chorea, but her team was still willing to make evaluation and diagnose for SC, if we couldn't find a qualified local pediatrician.

 

Just an idea--

 

Try approaching a doctor with your concerns about resistant systemic strep recurrences. Say nothing about PANDAS, SC, tics, OCD, autoimmunity, titers, Swedo, et al. Pretend you know nothing. You are a worried parent whose child keeps getting strep infections. Go to a ped infectious disease doctor. That's who treats nasty bacterial and viral infections that family doctors can't handle. Resistant systemic strep is more serious than tics. Treat it that way. Don't hide your child's tics, but don't make a strep-tic connection for the doctor. If there is one, let the doctor find it. Bring no medical records or research. Maybe your between pediatricians, for example. List your child as having transient tics. Act non-chalant even if he's bouncing off four walls with tics. Afterall, tics usually subside with time. Suspend your disbelief. Only address the tics if the doctor asks. Even then, make no strep connection, except maybe they did show up when the strep started. Ask tons of unrelated questions...i.e., "Could some underlying condition be making him more susceptible to strep, like mono or lyme disease or lupus or diabetes or..." Allow the doctor to build the bridge between strep & tics. If he can't, find another infectious disease ped.

 

Good luck!

 

 

 

 

So you were able to convince a local Dr. to do the azith? Do most of you see local Dr.'s that know or understand PANDAS? Or do you travel to see the specialist who treats PANDAS? I have tried Dr. after Dr. locally and none of them believe or want to treat PANDAS. I even called a couple at Cleve Clinic that were on a PANDAS study and they were not interested. I don't get it? It seems OH has been tainted by someone on the subject of PANDAS. I can travel to Chicago or Penn or MD but it would be nice to have a local Dr. on board for the antibiotic azith at least. Even Gilbert in Cinn, OH who was on several Sweedo studies, seems really conservative to treatment. I keep dragging my son Dr. to Dr. with nothing gained but psych prescriptions. That is the belief in OH to treat PANDAS symptoms with psych drugs. It is so annoying! No local Dr's want to figure out why this is happening.

[dcmom]

Michele-

 

Have you considered trying a DAN doctor (defeat autism now)? While they do not necessarily specialize in pandas, they are more used to thinking outside of the box. If you bring them a stack of research, and phone #s of maybe Dr. Leckman, Dr. Latimer, and even Dr. Trifiletti- they may be open to trying the azith with you on a more long term basis.

 

Although I have a few pandas knowledgeable specialists in DC, I have an appt with a DAN for both daughters this summer, for their yearly physical. Things are under control (for the moment) here now, but I just want to work with a more thoughtful doctor (regarding vaccines, yeast, food issues, overall health, etc). The current pediatric group I go to now is horrible, they churn out patients in 5 min...

 

Good luck...