Curious

[MMWG]

Hi all-

My DS (4) was diagnosed with PANDAS in December by our awesome pediatrician who I love. Since then, he has been through 2 bouts of strep. He tends to present with stomach pain, leg aches, and intense behavioral changes--intense emotionality, fits, fight or flight, etc. We also noticed the presence of something we thought might be a tic--a mouth-sucking type noise that had begun about a month before the strep was detected/PANDAS was diagnosed, and totally skyrocketed in frequency after he finished his first round of abx, prompting the doc to do another round, and several weeks later, the tic went away completely, and he really seemed to bounce back. With the second bout of strep a few months later, there was no tic--but we caught it very early because we knew what to look for. Once again, the first round of abx was not enough--we saw an explosion of compulsion and stomach pain about a week off abx, and even though the strep test was negative then, the doc gave him another round of abx, and he immediately improved.

It has been 2 months since our last bout of strep, and a few weeks ago I began noticing the mouth noise returning. I wasn't sure if it was a tic--it was sort of random and not that frequent, but I recognized it. His behavior has been pretty normal. I took him in for a strep test this week just to be safe--my doc said to bring him in any time at all for any reason that had me concerned and they would test for it. Anyway, the test was negative, both rapid and cultured, but I got a call that the doc wanted him on antibiotics anyway, right away. He is out of town this week so I haven't gotten a chance to speak to him, but I am curious why we proceed this way. I am totally in favor of it--I wanted him on preventive antibiotics but my pediatrician doesn't want to do that right now since he responds well to a an extended course at this point (he is very young, and he is also allergic to penicillin, and azithromycin is not effective on his strep--so we want to be cautious about him getting resistent).

Anyway, I love that the doc is willing to have him on this--but am curious why--do you think it's precautionary, since the mouth noise was a very early sign last time he got hit hard with strep? Is it possible he has strep but it isn't showing up on the test? The doc is really adaptive about figuring out how this presents in my kid, and adapting our treatment accordingly, which I like.

[airial95]

I'm no expert, but from what our pediatrician has told us, the behavior changes/appearance of symptoms may occur just from exposure (which we've defiantely seen with our boy) and that a culture may come back negative if taken too soon. He may just be worried about a false negative and is willing to put him on a course just to be safe.

[matis_mom]

I think you've hit the jackpot with your pediatrician! I wish mine had been that on-the-ball when my son started with this. I would follow his recommendation and do the antibiotic even if the culture was negative. He could just be reacting to exposure (have you checked the whole family?), or it could be that it's a false negative (it is possible), or maybe the strep is not in his throat (could be ears, sinuses, gut, anywhere really).

 

I would just be carefull to treat for longer than ten days each time, rather than stopping, seeing it didn't clear, and then starting again. I think that is a resistant infection waiting to happen.

 

Consider yourself very blessed that your pediatrician caught this and that your son is responding so well to antibiotics. I know resistance is a concern, but you need to keep in mind your son's immune system simply does not know how to handle strep. I have yet to hear of a child recovering without further treatment (although some do outgrow it at puberty, your son still has a long way to go).

 

Thinking back on my son's medical history, he started with mild episodes years ago, and it just kept getting worse and worse. I don't mean to scare you, but just to get you to consider prophilactic antibiotics as a safer alternative than what many of use have had to put our kids through (repeated steroid treatments, IVIG, plasmapheresis, etc.)

[MMWG]

Thanks for the input. We have tested the whole family (which is just my husband and I) and we both had negative tests. I do love our pediatrician. I have spoken to him about preventive antibiotics, and he is concerned about resistance. However, so far I have found him very responsive to adjusting and adapting treatment as we figure this thing out. He was actually at a conference with Swedo once when we had a positive test, and when we saw him for a follow up we discussed the latest research. He spends a lot of time talking with me about it, and when I was looking into other docs we might see for more progressive treatments, he was great about calling me and talking about pros and cons considering our son's age, allergy to penicillin, and lack of responsiveness to azithromycin for strep.

I do worry about how often he seems to contract strep (twice since December), and the 4-6 week time window it seems to take our son to bounce back after he is treated for strep. I have talked with him about ways to be more proactive in protecting him, and that is part of the reason I am so pleased he chose to prescribe the abx even without a positive test this time. I trust him, and also think he will be open minded about what type of treatment will work best for our case, and is great about talking through how to weigh the benefits and drawbacks of different choices.

When we were thinking of going elsewhere to a doc with more specific PANDAS experience, he was willing to order any tests we needed, but also took several hours out of his day to do some asking around about the docs we were considering (we didn't even ask him to do this, but he did), and then called me and talked with me for over an hour about options. He talked about the use of IVIG and other treatments that might be recommended by other docs, and walked me through the published research, the school of thought about why it might potentially work for PANDAS but also the concerns that might exist, discussed with me the studies done at NIMH and offered to make some calls to see if there were any new studies we might be able to participate in.

The bottom line is that I feel he is above all concerned about what is best for my son. He has on several occasions heard my concerns, thought about them, and changed or extended our course of treatment. He is open minded, and I feel like he is open to the idea that he doesn't know everything about this yet (who does!) but wants to understand it as well as he can--both in general, and how it presents and should be treated in our case.

So yes, I do think we might need to go the route of preventive antibiotics sometime soon. We are all learning as we go here, and I feel so grateful he diagnosed my son when he did.

[airial95]

Our dr also prescribes mucriprin(sp?). It's an ointment typically used for skinstrep infections, but he also has us apply in the nostrils 2x a day when we suspect strep. According to him, strep can hang out there and won't be caught by abx. Actually, last strep infection, he recommended the whole family do the muceriprin just in case. Might be worth asking about...could be where it's hanging out.

 

Our pediatrician sounds a lot like yours, we love him! Always willing to consult and learn...

[kimballot]

MMWG and Arial - It sounds like you both hit the jackpot with your pediatricians! My son has had PANDAS since infancy, and I wish my pediatrician had been this knowledgeable.

 

I can understand your pediatrician's reluctance to put your son on prophylactic antibiotics. It sounds like he is getting sick often, though. Have you had an immune status panel run? You might want to ask for a full immune status panel, test for mycoplasma, ASO and DNASE B tests - also Western Blot lyme test.

 

At his age, it may be difficult to detect immune deficiencies, but you never know - you may find that he is truly immune deficient, and then you will have something to work with. At the very least it will be a good baseline. Fortunately, we did do immune status panels and mycoplasma tests on my son several times through his preschool and school age years. My son now has immune deficiencies and tests shows that he was exposed to mycoplasma and we are able to put the pieces of the puzzle together and have a better understanding of what has been going on with him because we had these series of tests available.

 

Also - remember that once a child has PANDAS he/she can have exacerbations with infections other than strep. It sounds like your pediatrician may be thinking that there is SOME infection in there (given the symptoms), even if it is not strep throat (or he may be thinking that it could be a false negative). Please look for other infections as well- ear infections, sinus infections, and skin infections are frequent causes of exacerbations.

 

Please keep posting and let us know how it goes!

[matis_mom]

I think I'm having pediatrician envy! Where do you live? I'm just fantasyzing (spelling please?) you are close by and I can switch to that practice! I am having to spoon feed info to my pediatrician who totally missed the diagnosis, and still after almost a year I get skeptical looks every now and then...