How will I know he has strep even on high dose Augmentin

[momtocole1]

Everybody better just line up for a culture... I wish they would sell a home kit! I would stock up on it. I hate to take them to the doctor and expose them to everything else but it has to be done. Thanks everyone for the input....

[Buster]

Actually, they do sell a home rapid strep test. You can buy it off Amazon.

 

Everybody better just line up for a culture... I wish they would sell a home kit! I would stock up on it. I hate to take them to the doctor and expose them to everything else but it has to be done. Thanks everyone for the input....

[EAMom]

Everybody better just line up for a culture... I wish they would sell a home kit! I would stock up on it. I hate to take them to the doctor and expose them to everything else but it has to be done. Thanks everyone for the input....

 

You can buy a box (25 or 50 in a box) of rapid strep tests online (eg. Amazon http://www.amazon.com/s/qid=1258261560/ref...t=relevancerank ). We've used them. If neg, and you're still suspicious, you might still want to follow up with a 72 hour culture at a docs, but it's something for those in between times. You do want to swab the tonsils for best results so if your child is hard to swab you also might be better off going to the doc.

[Buster]

Cough could be a symptom of strep.

 

I think cough is typically exclusionary to strep.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2231494/

 

Typical clinical signs are:

 

In otherwise healthy people, a sore throat is usually self-limited and rarely produces serious aftereffects. Typical GABHS patients are children aged 5 to 15 who present with fairly acute onset of fever and sore throat.

• Headache, nausea and vomiting, malaise, dysphagia, and abdominal pain might be present.
  
• Cough and rhinorrhea are usually absent.
  
• Edema and erythema of the tonsils and pharynx are usually present.
  
• Anterior neck glands might be enlarged and tender.
  
• A non-adherent pharyngeal exudate might be present
  

Buster

[EAMom]

Judy....But I would still test siblings if your son's symptoms are worsening.

 

Also, have you considered switching to Azith. (from Augmentin)...perhaps 500mg/day. Didn't his tics go away with Azith. b-4?

[momtocole1]

Thank you so much EA Mom and Buster, I will order rapid tests...

 

 

Everybody better just line up for a culture... I wish they would sell a home kit! I would stock up on it. I hate to take them to the doctor and expose them to everything else but it has to be done. Thanks everyone for the input....

 

You can buy a box (25 or 50 in a box) of rapid strep tests online (eg. Amazon http://www.amazon.com/s/qid=1258261560/ref...t=relevancerank ). We've used them. If neg, and you're still suspicious, you might still want to follow up with a 72 hour culture at a docs, but it's something for those in between times. You do want to swab the tonsils for best results so if your child is hard to swab you also might be better off going to the doc.

[Megs_Mom]

I have been looking for studies about this, but can't find any. I would swear that the last exacerbation was caused by a sleepover with another child that had pretty bad impetigo. Meg was already in one episode for 2 months, but was just coming down - then literally the next day after the sleepover she went from a 5 to a 10. We never found a reason (medically) for that peak. Every other peak has had an ear infection within a week or two, but that peak stands alone. It does seem like an allergic reaction, but I am always nervous to say that (for fear of looking over-reactive - the PANDAS mom's fear). I usually just say that she was exposed, but no evidence of illness. We have a nephew that cannot even have peanuts in the room. It seems like that.

 

Impetigo can be GABHS. I would definitely say it could be the cause of an exacerbation.

 

That's what I thought. I was a little casual in my post above, but what I really mean, I think, is can an exposure to an ill child cause the "GABHS trigger of an immune response causing B-cells to release faulty antibody" - without the child ever being sick herself? And can that reaction be so immediate, or should it really take some time for the chain reaction to occur? I guess in this instance, she was already in one episode when the second happened, so maybe the BBB was already open and that is why it was so immediate?

 

Judy - I am so impressed that your son is already trying to do some ERP on his own. He must be a very strong young man. We also found that Azith seemed to calm the bad thoughts to a degree that she could really focus on the ERP and talk about it easily. There was a significant difference in intensity. I so hope he feels better soon.

[thereishope]

As the OCD begins to let up or settle a bit, and you must believe it will, leave a note on his bed one day. Tell him he doesn't have to talk to you about it but he can always leave you a note back. Well, I guess that would only work if he doesn't have an aversion to handwritting. Does he? Anway, as a child I remember sometimes wanting to talk about things with my mom but I couldn't. Whether I felt awkward, emabarrased, etc. The letter/note writing will give him a buffer. Like a feeling of protection and control. Perhaps some of the OCD he is riddening himself of, you weren't aware of. He doesn't want you to know more existed than you were aware of. When I was a child, I had this thing with light switches. I would leave the room and needed to push down on it a certain number of times. I would leave the room, then have go back in, turn on the light, turn it back off, push down. Anwyay, you can see the circle. I actually overcame it eventually on my own w/o my mom ever knowing I had that OCD tendency. And I had it for quite awhile.I was too embarassed.

 

I know that sinking heart feeling when somethng resurfaces. I would feel my legs stiffen and almost give out. It's like someone sucker punches you.

 

Start each day anew. He may have had major setbacks yesterday, but that was yesterday. Don't talk about it, bring it up, let it pass. Every night after a bad setback, I would turn to my husband and say "he might be fine tomorrow, right?". Sometimes he wasn't, but soemtimes he actually was. Not completely better, but the setback would pass and he'd back to the level of recovery he was at prior to it.

[Worried_Dad]

Buster, I'd be interested in your opinion on something.

 

Our son hasn't had the classic sawtooth pattern: it's been more like an "upward stair-step" pattern. What I mean is that he had major exacerbations where symptoms got much worse (like a "step up" the stairway) but they didn't really improve much at all afterward... or, if he did improve, it was so slow and gradual as to be almost imperceptible. We had to take major action (like IVIG) to see obvious improvement after one of these "steps up."

 

So our son seems - like Sammy Maloney - to have had a kind of "chronic PANDAS" where things may get worse in noticeable increments but they don't get better.

 

My own suspicion now (especially after his recent progress on mega-dose augmentin) is that some of these kids never clear the strep, so it continues to attack them almost continuously. A secondary infection (in our son's case, sinus or respiratory) seems to trigger major worsening, but they never really "come out of the episode" because the strep is always there in the background.

 

And of course, this makes it easy for docs to dismiss the PANDAS diagnosis. "Your son doesn't have the classic sawtooth pattern, so it's just OCD / Tourette's / etc."

 

What do you think?

 

 

Typically dd6 (dd9's sister) does not have any normal symptoms of strep. She does have enlarged tonsils and occasionally she'll say her throat hurts but that is very seldom.

 

On the sensitivity to strep / allergic reaction -- technically an allergy seems to imply an IgE and Eosinophil reaction -- but what I meant was that it just seems like dd9 is about the most sensitive measurement device -- when she would act up, sister would be culture positive for strep.

 

Over the last 75 weeks, there were 10 distinct exacerbations. Each exaerbation lasted 4-6 weeks.

 

In 7 of the exacerbations the onset was correlated with someone in the house having strep. In three exacerbations her sister wasn't positive for strep. On one, we think it was a bad throat swab because the doctor we saw was pretty clueless how to do one (can you believe it). We went in a week later her sister was culture positive (i.e., we didn't believe the original test, and sure enough were right).

 

On the other two, they seemed to be more a response to a viral infection. One was fifth's disease (both kids got the classic slapped cheeks 3 weeks later). On the other, we were at disneyland (great petri dish) and we think we got a form of H1N1 -- whole family out for 5 days.

 

I know I'm repeating myself by I really think the model is:

1. GABHS trigger of an immune response causing B-cells to release faulty antibody
   
2. failure by T-regulatory and B-regulatory cells to stop the B-cell
   
3. inflammation causing a breech of the blood-brain barrier such that the antibodies reach the neuronal cells
   

Given that the half-life of the antibodies seems to be around 4-6 weeks, this means a break down in the BBB could lead to an exacerbation up to 8-12 weeks from exposure. If the GABHS is really not gone (i.e., minor colonization or limited invasion) then there'd be enough to keep triggering the B-cells but maybe not enough to cause ASO to rise.

 

It all would be fascinating if it weren't our own children in the mix.

 

Best regards,

 

Buster

[momtocole1]

Dear Vickie, You guessed it. He has a major handwriting issue. I really like your idea though and I could try to implement it on his laptop or he we could email eachother notes. Right now though, he is so severe that he is not able to talk about the OCD, hence the failure of cognitive behaviorial therapy and ERP recently. If he does tell me some little thing about it he then has to "undo" what he said. We have seen a small breakthrough as I mentioned yesterday, which is so promising.

 

Thank you for the suggestions on looking at each day.

 

Thanks,

Judy...

 

As the OCD begins to let up or settle a bit, and you must believe it will, leave a note on his bed one day. Tell him he doesn't have to talk to you about it but he can always leave you a note back. Well, I guess that would only work if he doesn't have an aversion to handwritting. Does he? Anway, as a child I remember sometimes wanting to talk about things with my mom but I couldn't. Whether I felt awkward, emabarrased, etc. The letter/note writing will give him a buffer. Like a feeling of protection and control. Perhaps some of the OCD he is riddening himself of, you weren't aware of. He doesn't want you to know more existed than you were aware of. When I was a child, I had this thing with light switches. I would leave the room and needed to push down on it a certain number of times. I would leave the room, then have go back in, turn on the light, turn it back off, push down. Anwyay, you can see the circle. I actually overcame it eventually on my own w/o my mom ever knowing I had that OCD tendency. And I had it for quite awhile.I was too embarassed.

 

I know that sinking heart feeling when somethng resurfaces. I would feel my legs stiffen and almost give out. It's like someone sucker punches you.

 

Start each day anew. He may have had major setbacks yesterday, but that was yesterday. Don't talk about it, bring it up, let it pass. Every night after a bad setback, I would turn to my husband and say "he might be fine tomorrow, right?". Sometimes he wasn't, but soemtimes he actually was. Not completely better, but the setback would pass and he'd back to the level of recovery he was at prior to it.

[thereishope]

CBT where you "talk back to the OCD" didn't work for us either. He was 5. He said nothing was wrong. He didn't see it as out the norm. He couldn't rate his anxiety or anything like that. All I could think is if he couldn't acknowledge the problem, how could he overcome it. But we eventually did.

 

You have a lot on your plate right now. Make sure everyone is healthy first. It's hard to strat the road to recovery when you have something like strep or other illness blocking your way.

[peglem]

Meg's Mom:

That's what I thought. I was a little casual in my post above, but what I really mean, I think, is can an exposure to an ill child cause the "GABHS trigger of an immune response causing B-cells to release faulty antibody" - without the child ever being sick herself? And can that reaction be so immediate, or should it really take some time for the chain reaction to occur? I guess in this instance, she was already in one episode when the second happened, so maybe the BBB was already open and that is why it was so immediate?

But, isn't this what the immune system is supposed to do? Upon exposure, its supposed to mount an immune attack (make antibodies) and get rid of the invaders before they ever have a chance to make you sick. So, to me, it makes sense that just exposure could cause a PANDAS reaction.

 

Worried Dad:

My own suspicion now (especially after his recent progress on mega-dose augmentin) is that some of these kids never clear the strep, so it continues to attack them almost continuously. A secondary infection (in our son's case, sinus or respiratory) seems to trigger major worsening, but they never really "come out of the episode" because the strep is always there in the background.

 

I see this in my daughter too- remission is when she's not quite as ragey, self inflicted wounds begin to heal, she sleeps better and enuresis goes away. But the OCD and bizarre movements do not go away ever. We "seesaw" between bad and extremely bad. But after a period of extremely bad, merely bad seems like quite a blessing!

[Buster]

I was a little casual in my post above, but what I really mean, I think, is can an exposure to an ill child cause the "GABHS trigger of an immune response causing B-cells to release faulty antibody" - without the child ever being sick herself?

Going from our experience, the answer would be yes. Our dd9 is like someone who is hyper sensitive to GABHS -- if it's around her with a sibling she seems to react. We don't understand exactly how it happens. We don't know if full colonization is occuring or some sort of short circuit -- like what happens for folks who have IgE/Eosinophil reactions.

 

In terms of the immediacy, this seems to be a result of B-cells -- they remember the pattern. It seems to take them one exposure to "learn a pattern" and then subsequent exposures cause a pretty immediate reaction.

 

Someone once referred to this as an allergic reaction. There might be something in that -- in our own daughter's case she had elevated eosinophils during an exacerbation -- but we still don't quite know what that really means.

 

Regards,

 

Buster

[Buster]

We "seesaw" between bad and extremely bad. But after a period of extremely bad, merely bad seems like quite a blessing!

We agree. 82 weeks ago when this nightmare started we went from calm to insane (this ramp took a mere 4 weeks). It took us 8 weeks to get a handle on what might be happening from an accidental comment from a psychiatrist. Then forcing the doctors at the hospital to run a strep culture (you'd be amazed how much they argued), then dealing with their surprise when it was positive, then "forcing" them to treat with augmentin, then her symptoms getting so much better that they were ready to release her... wow.

 

Of course then we got home, symptoms started ramping again, then discovering that her sister also had strep, then discovering the whole cycle started again because we didn't have a strong enough prophylactic dose. Wow!

 

In retrospect, we can see this, at the time, we really just were clueless what was happening and incredibly scared. I still can't believe the set of events that aligned so we met the parents on this forum, that we met a psychiatrist who had a clue, that we met Diana who was struggling herself, ... wow!

 

I think daily of how grateful I am to everyone on this board and particularly to Diana who, well, nudged us (not sure of the right word), to try a different prophylactic dose of azith.... We essentially strong armed our pediatrician. I laugh now when I think of how insistent we were.

 

In the first week, nothing, then on 10th day symptoms dropped. She said "I want to get better"... all symptoms disappearing over next month. Wow. There really truly is that moment when you doubt everything and need some hope. Thanks to Diana and the rest here who helped us.

 

For the next 20 weeks, a blessing. Then another exposure/exacerbation (4 weeks to resolve), then 2 weeks quiet. Then another exposure/exacerbation (6 weeks to resolve), then another exposure exacerbation (6 weeks to resolve), ... this kept happening with her sister bringing strep into the house. We did get her sister treated and cleared of strep in between, but kindergarten seems to just be a petri dish for strep. We tried to convince our pediatrician to put the sister dd6 on prophylactic antibiotics -- that was a non-starter. In retrospect, would have been a great thing to do...

 

Anyway, long story shortened, we value each day that got better (the see-saw from terrible to just bad) and were frightened of each exacerbation that seemed to make the baseline worse until after 60 weeks we were awfully close to where we had started -- all the symptoms were back -- contamination fears, severe OCD, ...

 

It was this lack of reset to a baseline that took us to consider IVIG. I was trying to explain in another post that it was like trying to stay ahead of snow storms while shovelling the driveway. Eventually, we called in a snow plow to help. We did get a reset and are now back at a calm spot. We think we could have gotten here with just the antibiotic prophylaxis if we didn't get so many exposures so close together.

 

Regards,

 

Buster

[peglem]

I've come to accept that my PANDAS daughter is a carrier- didn't want to because all the docs act like that means it doesn't need treatment. It seldom gets to infection state, at least in her throat, where it could be easily detected. There have been some unexplained things over the years, that resolved before they could be fully investigated. When she was 5 (geez, that was 10 years ago) she couldn't walk for 2 days...something going on with her hips. No bruising, no swelling, no outward signs of anything wrong. Just crawling along, dragging her legs behind her. Xrays showed nothing, blood showed nothing. There have been a few episodes of unexplained limping, same mystery profile. Weird under the skin armpit rash, and in the crook of her arm as well. All this before we ever had a strep test done. The rash finally resolved once she was on antibiotic- nothing ever took care of it before then. She was sick ALL the time when she was younger- I can't believe how doctors blew it off as "autism related allergies" (yeah, THERE'S a scientifically proven phenomena It got so we stopped taking her to the doctor, unless she was very bad off- it became such an exercise in futility. She was born in 1994, so those younger years, PANDAS hadn't even been discovered or named.

Anyway- how to get doctors to see that for her, carriage is serious business? That even though she's not getting "infections", the strep is NOT harmless and just keeps fueling the PANDAS. The strep is being kept in check-her immune system is not allowing it to get to the infection state, but at a dear cost to her neurology.

 

Overwhelmingly, the medical research mentions carriage mostly as a nuisance- gets in the way of determining whether there is "real" infection. It seems to be nearly universally assumed that carriage is benign, w/o any real evidence that this is so. But so many assumptions seem ultimately to trump the few that show a MAYBE its not as benign as we think.

 

Anyway, yes, this forum and all you fellow sufferers out there...what a Godsend. And wow, we sure have come a long way in just the last year in getting this figured out!