Are You Kidding Me?

[Kbossman1]

Just wanted to update, and tell the story as I'm sure that most of the parents on this forum can totally relate. We have started seeing a new pediatrician. He gave me false hope that he was going to help, and even said that he would treat dd7 with abx. for 3 months, and we would go from there. He said this b/c I was very upset that due to weather all the way up the east coast, and lack of funds on my part, but mostly weather.....that we had to postpone our apt. to see Dr. B. He made me feel hopefull when he said that he would do abx. for 3 months. He put dd7 on amox. 250 2xday. I lost alittle hope with the choice of amox. but we are willing to try anything. No results, and meanwhile dd6 nonpandas has strep. So dd6 is on 1100mg of amox. a day, and she starts to get alittle better, but then begins complaining that she still has a sore throat. She finished the abx. this past tues, and by thurs the fever was back, and the same odor coming from her little throat was there, she was miserable. What's odd about this strep is that usually non of my kids run a fever or get this sick w/ strep. This child has had strep 10 times with no symptoms other then the odor that I can smell. I've been telling my docs forever that I can smell when they have strep....they don't believe me, but usually the tests show that I'm right. BTW, do any of you experience this same odor from your child's throat? Well when I took dd6 back to the new doc this thurs...w/out me even saying anything he looks at me and says..."I can actually smell the infection in there" and I say wow! Me too.....she was pretty bad off.

 

I then explain to doc that dd4 and ds3 also have this smell, ds3 worst of all. He says I could bring him in to be checked. I ask him to change the abx. for dd7 pandas child b/c it's been almost 2 wks, we see no improvements whatsoever and I believe she may have a sinus infection due to bloody mucus in her nose, and she's complaining that she doesn't feel good. He tells me that he's not willing to change the abx. and we should keep it going a little longer. So, let me get this straight.....dd6 on 1100mg amox. does no good against strep, and when I tell you that pandas dd7 isn't having any improvement on 500mg amox. and you know that she's living with another child who has been strep pos. for 12 days now.....and you don't see the need to do something else??!!!! I swear that I live in the twilight zone...completely alone sometimes....until I get on this forum anyway.

 

So....next day ( friday/ yesterday) I take in dd7 pands, dd4, and ds3 back into him and say test them for strep. BTW dd7 pandas gets up yesterday crying, red cheeks, sounds like she has marbles in her throat, can hardly talk, won't eat.....crying that her throat hurts....and oh yeah, she's got the funky odor exactly like dd6 the day before. So we all go in......dd7 test is negative ( she has no tonsils and I wonder about the strep swab when there's no tonsils to actually swab?? sometimes she's pos... and sometimes not) dd4 is positive for strep ( now that's 2 kids in our house) ds3 is negative. So the dr. puts dd4 on abx. and leaves my other 2 children to just suffer. I don't get it? My mother is with me so she even says to him.......if the other 2 children have this smell, which you said was the smell of infection....and they are complaining that their throat hurts and they live with 2 kids that do have strep.....what are the odds that they don't or won't have strep? He says "I don't know the answer to that." So, finally after asking him nicely for about 20 mins to change the meds....and listening to all of his excuses that he won't, we get the ol' "well, we will culture this, and I will call you on Monday and we'll go from there..." I've learned this is code for get out of my office now b/c I'm tired of talking to you.

 

So, sadly for us b/c we've been dealing w/ pandas exacerbation since September when strep reared it's ugly head for the first time after school started....there is no fix yet. Dd7 complains that she doesn't feel good EVERY day, she has unexplained rages, crying spells, sensory issues are back full force, it's like pulling teeth to get her to school everyday, I cry after I drop her off at least 2 out of 5 days of the week, and here we go with things getting worse: Last night when we get home from my motherinlaws, she stands outside the house and refuses to come in. She says that she heard a loud noise inside and crying....and she's scared to go inside. I reassure her that everything is fine, and we have to go in.....and I get her inside. While I'm tucking her in she says to me "I'm scared" and I say why? What are you scared of? "Everything" she says......so sad. She is losing her childhood and we've been sent away from 6 drs so far, that have take my $, but just don't care.

 

OK, sorry for the long post, but thankyou for listening. I feel a little better now. Have any parents here noticed the smell that I'm talking about? Oh yeah, one more thing. I ask the dr about her having a sinus infection....and we even ask him to just to 10 days of another abx. then we can go back to this bull*&^% dose of amox. and he tells me that he doesn't see a sinus infection....REally?!!! the coughing, the complaining, the bloody mucus, sore throat, red checks, and bad smell coming from her throat.....you dont' see that?!!!! UGH! So....just to let you all know, we are going to meet yet another new pediatrician this week......until then I guess.

[mom love]

Dear Heavens, what is wrong with these doctors?? YES YES there can be a smell and one of our old doctors' office used to ask us that all the time over the phone when we called the nurses triage station. I could be wrong here, but it has been my experience that most doctors prescribe for the siblings who have symptoms when others test positive. Hello!!! If I were you, I would go this morning to a clinic like at CVS or Walgreens, have them re-swab, send the culture out, they do that too, and tell them that siblings have tested positive this week, she is miserable etc. Tell them amox has failed for them in the past and ask for omnicef or augmentin instead. And THEN keep searching for a new doctor!!! Try a family practice. They may have more sense in treating a family as a whole. Sometimes older docs are less reluctant to rx abx. Call Dr. B and try to get in sooner.

[browneyesmom]

Oh, how awful! So sorry for the resistance you are getting from your doc!! I agree about going to an urgent care or something today with the other two and telling them that your dd4 just tested positive for strep and the other two are showing symptoms of the same.

 

My dd11 had tonsils & adenoids removed August 2009 due to this. Just FYI: she usually does test positive as the swab is at the back of the upper palate; however, keep in mind that there is a 20% false negative with the rapid strep tests. Sheesh... strep is so contagious; any pediatrician should know that. Also, there are now 5 criteria, I was told by a couple of urgent care docs I saw myself this fall (3 episodes of it myself being around dd who never clears it! ugh!) that if one meets those criteria (and esp if they have been exposed!), there is an 85% chance it is strep throat.

 

I hope your new doc is more responsive to the needs of your children.

[thereishope]

I'm familiar with the odor. It's the puss in the tonsils. As for the amox 250x2...that's a prophylactic dose so if she had a lingering infection that won't help. If dd7 is even on a prophylactic dose of abs, you can get a FALSE negative strep test. Perhaps your doctor needs to be "reminded" of this Follow your mom gut...take the other two to urgent care over the weekend. Tell them about the prophylactic amoxicillin. When they ask why she's on it, tell them she has an autoimmune disorder related to strep and that's why you CANNOT chance she has strep considering it is rampant in the house. If your ped asks why you took them to urgent care, say the kids were complaining of not feeling well and it was the weekend. You had no choice.

 

That amox prophylactic dose also will not prevent a sinus infection or kill one that is present. Sinus infections can be very hard to kill. It can take multiple rounds of abs and take stronger abs. My PANDAS son, which does clear on amox for strep, once had a sinus infection and the amox did nothing. He needed two rounds of Augmentin.

Edited December 18, 2010 by Vickie

[bronxmom2]

Amox seems to be useless for most PANDAS kids. For months my original pediatrician (who like yours claimed he was willing to help with PANDAS) insisted that amox was the only safe long term abx, even though I kept telling him that it wasn't working.

 

I ditto the suggestion to take the kids to the ER. Eventually I took my son to the ER, reported a recurring strep infection, and got Omnicef. I found the ER doctors and nurses were better than the regular pediatricians, who have become really strangely conservative. Also the ER felt safer somehow, germ-wise, than the pediatrician's waiting room. I developed a bit of an ER habit after that.

 

Any chance Dr. B would consult over the phone?

[browneyesmom]

Oh yes... the odor... I meant to post that an Urgent Care doc here is the one who initially told me about that.... and I have smelled it also.

[nicklemama]

The American Academy of Pediatrics is taking a very conservative stance on antibiotics. This spells disaster for PANDAS or potential PANDAS kids. They don't even recommend antibiotics for ear infections anymore. The eardrum has to be ready to burst before they will prescribe.

 

I took DS to see his ped on Thurs. This was a follow up after I had him there two months ago when he was at his worst and had just started biaxin, as recommended by Dr T. Now, two months on biaxin later, he's about 90%. She was amazed. Wrote furiously while I was telling her of all the changes.

 

At the end of the appt, I told her I really needed a written script to keep in my purse for an emergency if DS gets sick while we are traveling (and we are going out of state for Christmas). To my amazement, she whipped out her pad. She said "You won't find anyone who will treat him if he gets sick on vacation. I'm giving you 3 refills too." I wasn't even sure she was going to get on board for us.

 

Kbossman- I can hardly respond to this. It just makes you want to bash your head against the wall. It just goes to show intelligence is not correlated to common sense. In fact, I think it might be inversely related. UGH!

[Kbossman1]

Thanks to all for the replies....I knew I wouldn't be alone with this smell stuff. I've been telling every dr for 2 years now that I can smell when they have it.....literally. My kids have all been so young, and still are so young, that we are together mostly all day everyday....and with kisses and hugs from loving 3 and 4 year olds, and my 6 and 7 year olds....when they are right in my face talking to me....I know. Thanks to meeting another mom and this forum that lives near us, we have the information of her pediatrician who is trying to learn more about pandas and work with them, and he's only about 45 mins away, so I'm going to call and see if I can get in to see him this week. I'll probably take all 4. My ds3 now has a fever....he did act ok today, but I knew when he laid down next to me on the couch a little while ago that he felt warm. I will call the dr's first thing in the morning to make sure that someone looks at their cultures....and if that doesn't show up, we're off to some type of urgent care of minute clinic. Other than that.....I re-scheduled our apt. w/ Dr. B for feb....but we'll never make it that long. I'm going to call there first thing monday and get the soonest available....if I have to get another job or borrow the money....we'll be on our way soon! Thanks for the advice! It's always a little clearer to listen and suggest for someone else, and when I don't know what to do....someone else can suggest exactly what to do.

[EAMom]

The next time a doc tries to give you Amoxicillin, say, "No, I want an antibiotic that is more clinically effective.". Use those words. That is why the eating disorder ped rx'd Augmentin (vs. Amoxcillin) for us when our dd tested positive in the hospital....he said "Augmentin is more clinically effective." At that time we knew nothing, and would have been happy with Amoxcillin...which wouldn't have done much for our dd (since she deteriorated after we switched her to amoxcillin for prophylaxis).

[KaraM]

Did the doc only rely on a rapid test or did he send it out for a 72 hour culture? Make sure they do a 72 hour culture if the rapid is negative. If you're unsure, you may even want to call back and see if they sent it out after the rapid or not. There may be some new developments there that you haven't heard about yet.

 

We were just at the pediatirian on Wed. and I wanted abx for my nonPANDAS son who had been complaining of a sore throat on and off for weeks (coincidentally, my PANDAS daughter was declining at the same time). He wouldn't give them. But he did (skeptically) do a culture. He told the nurse just to send it to the lab because there was no puss. He called the next day saying the culture was starting to grow some strep and thankfully gave us a script for Zithro.

 

The other thing is, you can have the nose swabbed, too. While someone like Dr. B may be able to tell just by looking, I don't think most doctors can. When I suggested looking to a doctor we saw on a sick visit, he practically laughed at me. At the time, I didn't know you could do a swab on the nose - so I didn't ask and of course he didn't offer.

 

Finally, the other thing you could mention about the abx is that different abx work differently. Some work "extracellularly" and some "intracellularly." If the infection is inside the cell, then you need an anti-biotic like Zithromax to get at it. I copied this from the FAQ in the "helpful threads" section at the top of this forum.

 

Q: Which is better amoxicillin, augmentin or azithromycin?

A: This is a matter of considerable debate. Both Augmentin and Azithromycin are more clinically effective in clearing GABHS than Amoxicillin. Some strains of strep can go intracellular (where azithromycin is more effective) and some strains are macrolide tolerant (where augmentin is more effective). Often a parent will try 2 different antibiotics over a period of 2 months to find one that seems to work.

 

The FAQ has a few more Q&As about abx you may want to look at as well. Here is a direct link to the FAQ:

 

http://www.latitudes.org/forums/index.php?showtopic=6266

 

We started on Omnicef with my PANDAS daughter last Feb. It works extracellularly. It helped a little. But the Zithro we stared 6 weeks later is what really made a difference.

 

Good luck!

 

Kara

Edited December 19, 2010 by KaraM

[kimballot]

kbossman - my very dear retired doctor used to smell my breath when I had a sore throat. If it smelled like strep he prescribed ABX. If it did not, he did a throat culture. The smell is very real.

[EmersonAilidh]

When all else fails, CareNow. Depending on your insurance it can be a little pricey but if you're as sure as you are that your kids have strep, it's probably worth it. It might just be the one around here but they'll give you antibiotics without having tested positive for anything. The past two times I've been up there my rapid strep has been negative (Only two negative swabs ever. One negative titer.). The asked if I wanted to do a three day culture, to which I responded "Will it even change the antibiotics I get?" & they've told me no. I've walked away with Azith & Z-Pack both times. Sound like some kind of junkie, God. -____-

 

My advice... DUMP THE PEDIATRICIAN! Sure, more doctors need to be educated about P.A.N.D.A.S., but there's not much point fighting & arguing with a doctor who obviously doesn't WANT to get it! Because, God forbid we're right. It's just not possible. I mean, come on now. A patient knowing better than a doctor? Pffft.. You must be crazy! Have you tried finding a specialist in your area? Even if you have to travel a bit, an appointment far away ever six weeks or so might be worth it if it's a doctor who really understands & knows what he's doing!

[matis_mom]

Man! That stinks. Yeap, you definitely need to move on... I agree maybe if you go to Urgent Care or even just to a Minute Clinic they might be more helpful. Like Vickie said, make your point and politely threaten them with negligence if they don't do something.

 

Our pediatrician is no PANDAS expert, but she has been very helpful and proactive on getting on top of things, bless her soul! She has, on more than one occasion, put ALL my kids (yes, 8 of them) on antibiotics. She is an Omnicef fan (broader spectrum if I understand correctly), and it seems to do the trick (until we get strep again!).

 

Also, did they check their ears? Once I had some kids just feeling off, no fevers, PANDAS ds acting up... I took them all in and we had 4 with positive rapids, and 2 with ear infections (incidentally, my PANDAS son and his sister who now turns out to have PANDAS too --and they both have Lyme, but that's another post altogether). Now keep in mind NO ONE HAD ANY OF THE TYPICAL SYMPTOMS, NOT EVEN EAR PAIN. They all got treated, even the one child who did not have anything at all, just because everyone else had it, it was safer to treat him too. So I really don't get that doctor that will not treat or do anything when your kids are having symptoms. How did the throats look? Anyhow, my point is, make sure they check the ears too. That's why I never just make a nurse appointment. If I'm going to take everyone in and pay 8 copays, I want to see an MD and have them check everything. They ALWAYS do a culture, no matter what, so also insist on that.

 

Welcome to the PANDAS mommas club. You'll have to develop some very specific skills to deal with some of these docs. With our dear pediatrician, putting a sad, desperate face and looking like I'm about to cry works! I just play the "oh, poor me, help!" role and it works with her, but with some other docs I've had to be pushy. You do whatever it takes to get your children treated! It stinks, though, that on top of dealing with sick kids, we have to deal with stupid doctors sometimes.