Question from a Newbie

[simplyshine]

I'm having a difficult finding the answer to one of my questions regarding PANDAS. Our pediatrician has not been willing to diagnose our 9-year-old son with PANDAS, however, she agrees that all of the symptoms which abruptly began after a bout with strep seem to point in the direction of PANDAS. After testing his titers, one test came back high, so the doctor decided to treat my son with a course of antibiotics, during which our "missing boy" seemed to re-emerge -- no more OCD behaviors, sensory issues or extreme agitation. My question is this: After the round of antibiotics, my son's PANDAS symptoms returned, however, some days they seem heightened and other days he seems back to his old self. What does this mean? Is there still strep present? Or is his brain still healing? What course of action should we take? The doctor refuses to do any more blood work until several months have passed. She wants him on Adderall and then for us to try Concerta to see if these help his symptoms. I'm not on board with that action at all...but don't know what to do.

 

[Chemar]

Hi and welcome

I am bumping your post up so others can respond

[peglem]

Well, I would think continuing antibiotics (which worked) is safer than trying psych meds, which is a real crap shoot trying to find one that works w/o side effects.

[MomWithOCDSon]

Since she seems to think that the antibiotics already did the job and wants to move on to psych meds, I would ask her to retest the titers. If they are still high . . . or even potentially higher than before . . . perhaps she will agree that a continued course of antibiotics is appropriate. Dr. Swedo has stated a number of times that it is the direction of the titers demonstrated by testing and retesting, as opposed to a single reading, that can serve as an indicator of PANDAS. Dr. Swedo also now agrees with longer courses of antibiotics (3 weeks to 30 days) as opposed to the shorter (10 days) courses she advocated for in the past.

 

All that said, many of us have found that much longer antibiotic courses . . . several months, sometimes even years . . . have been most effective in treating PANDAS in our kids. It is a rare "standard" pediatrician who will agree to that course of action, however, and Dr. Swedo has stated her own concerns about creating c-diff with such longer courses.

[chubbermommy]

Our 9 year old developed motor and vocal tics after strep. Our family dr referred us to a neurologist who diagnosed PANDAS and wanted to treat him for clonidine (for the tic) after the antibiotics (10 days) were done. We had convinced our family dr to give him an extra 10 days. After finishing the antibiotics, he got much worse.

 

I did a lot of research, asked for help here and spoke a lot with our case worker at the hospital (who is our liaison with the neurologist) telling her that I wanted him on long term antibiotics - she was okay with that but wanted our family dr to precribe them (I think she was following the standard treatment of treat the strep, then treat the tics). Finally, I wrote a letter to my family doctor outlining DS' cycle of ups and downs in his tic severity and referenced the pandasnetwork.org website and all the cases there which show that long term antibiotics are needed. Thankfully, she agreed to have him on antibiotics for another 30 days, reassess the situation and then more abx if necessary.

 

I found the pandasnetwork.org website really really helpful if you want some concrete evidence to show your doctor. Good luck!

Edited November 20, 2013 by chubbermommy

[nicklemama]

Dr Swedos slides from her presentation at the recent conference are available at the NE PANDAS parents conference site under links and resources. Copy it and present it to your doctor. It's worth trying to get your doctor on board but in the end, the majority of us have had to seek help elsewhere. I had to go out of state for two years before I finally found help locally. My son has been on abx continuously for three years. Any time we reduce it to prophylactic dose, he backslides so he's been on treatment dosing for most of,this calendars year.

 

Dr Latimer addressed C Diff in her presentation. She said she has not had a child with C Diff in all these years. She stated PANDAS kids seem to have something different about them in that they don't get c diff and most tolerate long term abx that rips many peopls stomachs up in a week or so.

 

I wish they all had posted their slides. A DVD will be made available of the entire conference.

[peglem]

Something else to consider- just because you found strep- it doesn't neccesarily mean that is the only infection- even if the strep is cleared, many of us have mycoP as well, which can also trigger PANS. So, if symptoms return when abx is withdrawn, maybe there's something else that the abx were fighting as well, that hasn't cleared yet. Just something to think about.

[qannie47]

Have you done another rapid strep test? Certainly your doc is willing to do that. It took 30 days of abx to wipe out infection. Also, there is a wax/wane pattern that emerges as kids are healing. One day good, one day bad, one day with 2 hours symptoms, etc...What you should see though is a continued progressive movement forward during the healing phase which can last several weeks to fully recover. If your child is less then 70% consistently better, then I would say more rounds of abx. The roller coaster ride of two steps forward, one step back is in my opinion the hardest part of this disorder to get used to. Get the rapid strep for sure.

[simplyshine]

Thank you for your helpful comments and suggestions. I feel like I'm floundering around in all this pandas information and trying to process as much as I can. Meanwhile my ds is walking around the house with crazed eyes, lots of broad body movements (is that a pandas thing?), and an absolutely inflexible and angry attitude about anything and everything. I'm concerned that if swabbed for strep, it will be negative...and then what? The problem behind the doc's reluctance to test and treat him is because at our first appointment we told her that our son was a bit unfocused since he was young, and I think the doc took that info and ran with the adhd diagnosis . When I told her that his symptoms lined up perfectly with pandas, she actually said, "I feel bad because I put an idea in your head." She keeps pushing us to try the Concerta and asked my son very leading questions that made it look like he loved being on Adderall & that it was working great...so frustrating as I sat there looking like a crazy mom. I'm taking him to get a swab today...but not hopeful...

 

[cara615]

My son had tics and some mild OCD/ADHD long before he had what I think is a PANDAS flare (around 3.5 years old and he is now almost 6). My son also has food intolerances and inflammation caused by such food intolerances. He also had yeast and poor methylation. i think that these underlying issues caused the initial onset of the behaviors and tics but the true PANDAS episode did not show itself until this past May. We did not test for STREP in May, instead i worked on healing his gut, thinking he has Tourettes/ODC and ADHD. I would not put him on meds and went completely holistic. i was able to resolve the OCD and ADHD and get his tics down to 95% just through diet and supps alone.

 

Then in Nov he flared out of nowehere. Within 2 weeks all his tics were back and they were constant. On a whim, i decided to get a STREP test and BAM! it was positive. He has been on amoxi and now cephalexin with improvement day over day. Are we convinced its PANDAS? 80% convinced. Our doctor tested his titres and we get results tomorrow or Monday. She wants to see elevated titres, not sure why because we had a + STREP test and he is improving on abx! If she won't give us what we need, then we have other doctors that will.

 

The thing is with prophylactic abx or even full dose abx, you need to maintain the gut flora and continue to keep the yeast at bay so a strong probiotic and natural antifungal are a must. We give Ther-Biotic by Klaire Labs and do grapefruitseed extract to kill yeast.

 

i would not stop until I found a doctor that agreed with me and was willing to give abx a try. Millions of kids across the globe take abx every day of their lives to keep Rheumatic fever at bay. These kids do just fine. If it keeps the kid functioning in life then to me, its worth it.

[rowingmom]

Something else to consider- just because you found strep- it doesn't neccesarily mean that is the only infection- even if the strep is cleared, many of us have mycoP as well, which can also trigger PANS. So, if symptoms return when abx is withdrawn, maybe there's something else that the abx were fighting as well, that hasn't cleared yet. Just something to think about.

 

I agree with peglem. I only found out about PANDAS because our daughter's symptoms responded so well to strep treatment and reemerged after abx withdrawl. Our ped psych suggested PANDAS, but couldn't treat properly with long term abx and IVIG because we live in Ontario. We eventually found the culprit to be a Bartonella hensalae infection. Antibiotic treatment took 2 years.

[jferinga]

How did your child do with the antibiotics in relation to alleviating the symptoms? Our daughter had an acute onset less than -days ago. I managed to get our daughter accepted into a study on PANDAS. Our doctor refused to prescribe antibiotics until she talked with a doctor from the program. The dosage is 2000 mg per day which is extremely high for her size. I am curious since you mentioned similar symptoms than our child.

[FLmom]

What is C-diff?

 

Simplyshine, what was the results of the swab?

[LNN]

C. Diff is short for clostridium difficile, a bacteria that can cause antibiotic-associated diarrhea and gut issues, along with malabsorbtion and serious dehydration.

 

FYI - there's a new PANDAS overview book on sale at the Latitudes bookstore

http://latitudes.org/store/

 

It's intended to be an intro for newbies, not for old-timers. It's an e-book, downloadable at time of purchase.

Edited November 27, 2013 by lmatheos

[simplyshine]

The strep tests came back negative, and since our doctor wasn't available, we saw a brand new PA who had little if any knowledge of pandas. Needless to say, the appointment was less than helpful, however we have seen some good things lately. I don't think I mentioned that we had been trying Adderall. The day before his recent strep test, and since he didn't have school, I took him off the Adderall. It's been fairly amazing to see that the OCD and hostile behaviors have diminished significantly and continue to stay at a low level. My thoughts are that either it was the Adderall that was triggering and/or exacerbating the pandas symptoms or that being in school itself causes those things (Thanksgiving break was almost a week and the last time he took Adderall was on the school days). Not sure if I'm making any sense:)

This week will be a good test if it was indeed the meds that caused the behaviors or if school triggers the symptoms (they'll come out with a vengeance after school and in the evening). If he remains "settled", then I'm thinking that the antibiotics did help and that the Adderall was the problem during this last few weeks. Thank you so much for all your support. I've never done a forum before (and it probably shows:).