Introduction

[matis_mom]

Hi all,

I just wanted to introduce myself. My 12-yo son has been diagnosed with PANDAS. It took a while to realize what was going on. It has probably been building for some time, but things got markedly worse last february after we all had a very nasty flu. He was never the same after that. We all recovered, but he seemed to lapse back a week after we were all well: high fever, ear ache, vomiting. I took him in and they said it was nothing, they totally dismissed it. After that he was always tired, had a hard time concentrating, and then we started noticing the compulsive handwashing. Along with that came other behavioral changes, like not wanting to go outside, and absolute fear of shoes (which in my house are all over the place -- seven kids!), not touching doorhandles or faucets with his hands (he uses his elbows), not wanting to use the hand towel or kitchen towel to dry his hands (that of course makes his skin a lot worse), not wanting to pet the dog. We went back to the pediatrician several times saying, "there is something wrong with him, he's just not himself" (although at that point we did not mention the OCD, because we did not think it was related to any of the other physical symptons). We were back several times because of fatigue, swollen wrist (she totally dismissed that one!), pain in the knee (she did do a Lymes test).

When the OCD got really bad, through God's grace, I heard a friend of mine talking about a friend of hers whose daughter had had similar issues and had seen great improvement after seeing a certain doctor. So I called this lady, feeling a little awkward about invading her privacy, and she was so willing to share and help.

So we went to the offices of Dr. Zachrison in Fairfax, VA. We saw Dr. Mian, who is the one who usually sees children. I gave her ds's life story, the swollen wrist, the lack of attention, the OCD, the fatigue, the upset stomach off and on. She look him over and said, "I think it's strep." She ordered a bunch of lab tests (17 viles of blood!!! the staff was so good --she tought we would have to do it two separate days but they were great and got it all done in one sitting, which was amazing because he always melted down anytime anyone mentioned needles), including x-rays of his wrists, a cardio consult, a gall-bladder scan, and stool and saliva tests. It felt so good to have someone take him seriously! The tests showed strep in the gut, elevated titers, adrenal fatigue, and some other issues. He has been on amoxicillin, cypro (after the tonsillectomy), amoxicillin again, and now his on cefuroxime and hydroxycloroquine. The last week he has not been doing well, he almost seems back to where we were three months ago. The doctor has been very proactive and always listening to our concerns. I sent an email saying I was worried the antiB was not working and they called from the office saying Dr. Zachrison (who is the big cheese there) would like to see him. So we are going there on Thursday.

Additionally, at the last visit they suggested we see a psychiatrist for some anti-anxiety meds to help him through this rough time. We are open to it but thought before we go that way we should get a second opinion. We got Dr. Latimer's name from PANDASNETWORK, so we will be seeing her on Friday.

Also, ds has been having bed-wetting and day wetting issues. This of course does not help someone who is concerned about germs... he has been changing clothes a lot every single day, it is becoming exhausting to deal with the laundry! But what can I do, he really cannot controll it. Does anyone have any tips on that? It seemed to get better after the tonsillectomy while was on Cypro + Nyastatin. I though it was the Cypro, but now I'm thinking it really is a yeast/candida issue and it was better because of the Nyastatin. I will mention this to the Dr. on Thursday.

Anyway, this is where we are. I am thankful we have a diagnosis and hopeful that this week we'll get some answers. I am just concerned that the antibiotics do not seem to be working (or maybe they are working and all the flare-up is just the beasties dying off and giving out more toxins?), so I will see if I can get them to test the antibiotics in vitro instead of on the child. He had yeast/candida issues even before we started with the antiB and I am worried about the side effects of being on them for so long. He is taking tons of probiotics and other good supplements, but they are costing us a fortune, and it almost seems to be money down the drain with all the antibiotics he is taking...

Has anyone here tried any alternative/natural remedies?

Thanks!

 

Isabel

[pixiesdaddy]

Welcome. So sorry you have to join us

 

There are lots of threads on here about natural remedies if you poke around.

 

Have you read Saving Sammy? The author is compiling a list of doctors around the country who will help diagnose or treat PANDAS. I'm sure she would love to have your doctors' names on her list if they have been instrumental. She is on Facebook, or you can contact her via www.savingsammy.net

 

 

Manda

[dcmom]

Mati's mom- welcome to our family (it really feels like one!) My heart sinks every time I see a new parent on this forum, although I know they have found the best place for help. I am sorry for what your son is going through. Dr Latimer is great, we see her. Hopefully she will be able to help. I know others will post- but it seems many here have had bad experiences with psych meds, so proceed cautiously.

 

I am interested you said he had strep in the gut. What was the test for that? How does one treat that?

Thanks.

[matis_mom]

Mati's mom- welcome to our family (it really feels like one!) My heart sinks every time I see a new parent on this forum, although I know they have found the best place for help. I am sorry for what your son is going through. Dr Latimer is great, we see her. Hopefully she will be able to help. I know others will post- but it seems many here have had bad experiences with psych meds, so proceed cautiously.

 

I am interested you said he had strep in the gut. What was the test for that? How does one treat that?

Thanks.

 

Thanks for the welcome! It's so good to have others out there who understand... not that I'm happy other are going through this, though.

 

About strep in the gut, the doctor suspected it because of some gastro-intestinal issues he was showing, but they really were not anything serious, just one more piece of the puzzle, and it turned out to be a key piece! They found it through a stool sample, collected over a couple of days. I would recommend to anyone who has had GI issues off and on to ask for it. Especially for those whose swabs keep coming back negative. The treatment is pretty much the same as for strep throat, I've been googling it and nothing specific comes up as to how to get to the gut. It's harder to erradicate, it seems. Lots of probiotics and a good diet help tons.

 

I am really hopeful this week's appointments will get us back on track. He seems in a very happy mood today, although still wanting to wash (or rather scrub like a surgeon) very often, but we have been limiting it and he is so cooperative, he's just a sweet kid. I am so thankful for that! He takes all his meds, vitamins, anything I ask him he will do. We are trying to do some Cognitive Behavioral Therapy at home, and we have talked a lot about why he feels the way he does. At his age he can understand things very well, and it has helped him accept where we are at now, and that we need to work together to heal him physically, but also work on other things that are just not cured with a pill....

 

I'd like to hear if anyone has any experiences to share that way. At some point we thought it would be useless to do BT if the problem is physical, but now we are attacking this from all sides.

 

Got to go now, thanks for this group!

 

Isabel

[faith]

Isabel,

what you say re the candida and Nystatin, I'm just thinking out loud that maybe that's why some people (over on the TS board) have reported good results with Nystatin, maybe not because it is actually a yeast problem that causes the tics or other symptoms, but as you say, the strep? somehow, maybe by treating the yeast, it gets rid of some of the strep with it and that's why some have been helped with Nystatin? I don't know this for any fact, just going by what I've heard. There is a Dr. Semon, I think, that had treated patients with tourettes with Nystatin and it seemed to help with the symptoms and tics. I'll post a link here.. don't know what it all means, but I'm just trying to say that maybe the candida issue and strep are not exactly two separate issues? .....

 

again, don't know if this pertains to any PANDAS kids, but here it is anyway.

 

http://www.nutritioninstitute.com/Tourettes_Syndrome.html

 

 

Faith

[sf_mom]

Welcome and so sorry to hear that your son is so ill but you are definitely heading down the right path to get him proper help!!

 

I would say the first thing you need to do is switch antibiotics to either Augmentin or Azithromycin and potentially up the daily dose depending on current strength. Have his CaM Kinase tested if you haven't already through Madeleine Cunningham. There has been great success with both IVIG and PEX for most children and due to your son's age it should be a consideration.

 

Often anti-anxiety meds are not recommended as PANDAS children often do not respond well. I think others on the forum can speak more directly to this issue as we never pursued that route.

 

Our son is on 250 m.g. Azithromycin per day, he is 5 1/2 years old, 45 Pounds, CaM Kinase 124, Failed 10 of 14 STREP PNEUMOCOCCAL ANTIBODY TITER, 4 weeks post IVIG, currently symptomless and had a sudden on-set June 24th.... we think he was probably sick much longer, approximately 1 1/2 years

 

Hang in there... I'm positive many more will respond this morning.

[pixiesmommy]

I have read that Xylitol can help w/strep and am letting my daughter chew the gum, but also putting a heaping spoonful of the crystals in a smoothie at night for her in the chance it will also help in the gut. Just a thought- no idea of there is any validity to it!

 

Sorry I posted before under my DH's log-on. We're both on here.

 

Manda

[smartyjones]

yes, yes - i think somehow yeast and strep are related. not just through antibiotics for strep causing yeast. when my son started with symptoms, he hadn't been on abx for 2+ years. most of his symptoms were similar to autism descriptions from yeast, some ocd order symptoms. we were actually thinking yeast, he came back with high strep titers and + culture.

we treated with abx and nystatin. i don't have anything to back it up but just feel it was the abx that was the dominant treatment.

[mama2alex]

Isabel, welcome! You have found the right place for support and information. I agree that you should try a different antibiotic - Zithromax has worked for us, and I think Augmentin is another good one for strep/PANDAS. My son actually had his first full PANDAS episode while on Amoxicillan. I think most parents do a full-strength course to eradicate the strep, then bring it down to a prophylactic dose for the long term.

 

From what I understand, Dr. Latimer may suggest a course of prednisone to pull down the inflammation in the brain. We only did three days of prednisone (due to side effects) and saw very good results.

 

Also agree that doing the CAM Kinase and anti-neuronal anti-bodies testing with Madeleine Cunningham would be a good step for you right now. My understanding is the results are most accurate before doing (effective) antibiotics and prednisone. Here's her contact info:

 

Madeleine W. Cunningham, Ph.D.

George Lynn Cross Research Professor

Microbiology and Immunology

Director, Immunology Training Program

University of Oklahoma Health Sciences Center

Biomedical Research Center Room 217

975 NE 10th Street

Oklahoma City, OK 73104

Tel 405-271-3128

Lab 405-271-2133 X47455

FAX 405-271-2217

email: madeleine-cunningham@ouhsc.edu

 

You can email her directly and she's good about responding. Also, you can poke around the threads on Cam Kinase and learn a lot very quickly.

 

You may want to consider doing these steps before trying psych meds. There's a good chance you'll get great results and relief for your son without risking the possible bad side effects of psych meds.

 

Also, was your son generally healthy before this? Some on this forum have done immunological work-ups on their kids and found that they have immune deficiencies. Maybe Dr. Latimer can recommend an immunologist in your area who is familiar with PANDAS.

 

Hang in there! It sounds like you have appointments with some good doctors this week and you are well on your way to helping your son.

 

Best,

Jennifer

[matis_mom]

Thanks all for your replies! It is so good to have all this extra info before heading to the docs at the end of the week. I really feel we need to try a stronger/different antibiotic before trying psychiatric drugs. I also feel reassured in my decision to go see Dr. Latimer. I know as bad as it seems for us as a family, we can still manage him and lead a pretty normal life, so we have time. Part of me wants to save him the pain of going through all the anxiety, but I know even if we did find a med that works well, they are always tricky to get off of.

 

I will definitely try that Cunningham test... is that something Dr. Latimer would run, or do I just contact Dr. Cunningham directly? What exactly does this test determine?

 

Thanks for all the answers and support. I will post back this weekend to let you know how the appointments went.

 

Isabel

[matis_mom]

Oh, I forgot to add... about the Nystatin, I don't think it helps with the strep, I just think it helped with the bed-wetting, which is listed as a common secondary sympton of PANDAS, but it might very well be more of a side-effect of the intestinal flora being totally out of control.

I guess I'll stay up late tonight again checking all those links you ladies have sent. Thanks again!

[EAMom]

Welcome Isabel,

 

7 kids..wow wow wow! Unfortunately....I am going to recommend checking everyone (throat cultures) to make sure you don't have any strep carriers in the family. I would also rec. re-checking when anybody has symptoms (of course), if you get a strep notice in school (!), or if your son's behavior starts to go downhill. Our younger dd is an assymptomatic strep carrier and if she is positive our PANDAS dd will react (behavior change) even while on antibiotics. When our PANDAS dd was really sick Spring 08, we didn't start to see real improvement until 1) we were able to clear younger sister with Azith (augmentin didn't work) 2) we started PANDAS dd on Azith (plus advil)...the 4th ab we tried. Dh contacted Dr. Swedo (NIMH) who agreed that it is possible that our PANDAS dd is reacting to colonization (exposure to strep, even on abs) without necesarily having an actual full-blown infection. It's like these kids are really allergic to strep, and even a little bit can cause a problem.

 

contact Dr. Cunningham's lab directly...it is closing for the holidays (Nov-Jan) so I don't know if you will be able to submit a sample in time (or if you'll have to wait until Jan). It will be worthwhile to e-mail ASAP to see if you can get a sample in "under the wire".

 

I don't know if Dr. Latimer can run the Cunningham tests for you (ie if she already has some kits/forms or if you need to get one from Dr. Cunningham directly)...does anyone else know?

 

FYI...amoxicillin (2mo. worth) and Cefuroxime (10 days worth) did NOT work for us either. I agree with SFMom...try Azith. (worked best for us!) or Augmentin (not as good as Azith. for us, but we didn't do the really high "Saving Sammy" dose). We have been on 250mg Azith. daily since June 08 (dd weighs 54 pounds). When we tried to decrease to 125mg/day we noticed a change....so we stayed at 250mg. With both Azith. or Augmentin it is important to be on a high enough dose. I understand Sammy was at the really high Augmentin dose for a year (maybe someone can confirm, I don't remember where I read this!)...then he gradually went down in dose.

 

Here's a link on amoxicillin failure in strep throat http://www.entrepreneur.com/tradejournals/.../169459644.html

 

I think many PANDAS kids have intracellular strep that is hiding out...Azithromycin is best for erradicating intracellular strep, high doses of Augmentin might work too?

 

BTW...it seems that lots on this forum have tried alternative/natural remedies...but it seems like the right abs at the right dose (long term) +/- steroids +/- pex or IVIG is what really helps the most. Also, Advil helps (but you can't do it at the same time as pred). If PEX or IVIG is done, it is also important to continue on abs long term to prevent an infection that could re-ingnite PANDAS.

[Megs_Mom]

Mati's mom- welcome to our family (it really feels like one!) My heart sinks every

I am interested you said he had strep in the gut. What was the test for that? How does one treat that?

Thanks.

 

About strep in the gut, the doctor suspected it because of some gastro-intestinal issues he was showing, but they really were not anything serious, just one more piece of the puzzle, and it turned out to be a key piece! They found it through a stool sample, collected over a couple of days. I would recommend to anyone who has had GI issues off and on to ask for it. Especially for those whose swabs keep coming back negative. The treatment is pretty much the same as for strep throat, I've been googling it and nothing specific comes up as to how to get to the gut. It's harder to erradicate, it seems. Lots of probiotics and a good diet help tons.

 

I am really hopeful this week's appointments will get us back on track. He seems in a very happy mood today, although still wanting to wash (or rather scrub like a surgeon) very often, but we have been limiting it and he is so cooperative, he's just a sweet kid. I am so thankful for that! He takes all his meds, vitamins, anything I ask him he will do. We are trying to do some Cognitive Behavioral Therapy at home, and we have talked a lot about why he feels the way he does. At his age he can understand things very well, and it has helped him accept where we are at now, and that we need to work together to heal him physically, but also work on other things that are just not cured with a pill....

 

I'd like to hear if anyone has any experiences to share that way. At some point we thought it would be useless to do BT if the problem is physical, but now we are attacking this from all sides.

 

Got to go now, thanks for this group!

 

Isabel

 

 

Wow, hey _ you may be new here, but I just learned something important from you! I did not know there was a way to test for strep in the gut! I don't think we would be positive now, but as soon as another episode starts, I am doing this! Meg always gets horrible stomach aches right as the OCD starts - and this time, she ended up with Peptic Ulcers. So this is so interesting! We have a GI, and he has not suggested this - and I saw him today .

 

In terms of the CBT side of things, we actually were told so many times that she did not have PANDAS - and her OCD was so severe, that we managed it with ERP therapy for all three episodes - until we finally found the miracle of Azith. But that only took us most of the way back - so far, we are still doing ERP for very very very mild OCD. I agree with your approach - of attacking from all sides. The worst case with ERP is a waste of time - but even if you cure the OCD with anti-biotics, you still empower the child. Meg does not know that she has PANDAS, just that she has OCD. We were talking about why she has to do more testing the other day, and I told her that there was a chance we could cure her OCD and it would never come back. Her response was "duh, mom, when it comes back, I just have to do my ERP. I can do it myself". I don't think this is completely right, but I love that she feels so empowered about it.

 

Our book recommendations are - the workbook for kids - "What to do When your Brain Gets Stuck" and for parents - What to do when your Child has OCD: Strategies and Solutions - by Aureen Pinto Wagner. We are pretty deep into the OCD community, as her OCD is so severe and debilitating when it arrives overnight. Even at a very high level of OCD, she can still manage it enough to get through the day without missing out on much. And she feels like she has some control.

 

To give some perspective, when OCD arrives for Meg, these are some typical symptoms: Cannot sleep alone, thinks did not wipe well on potty, thinks all sugar will make her sick to the point that she can barely eat or drink, cannot eat food with any "spots" on it, checks all food and drinks, washes hands and body incessently, spits constantly to point of face and lips bleeding and clothing soaked, wipes germs, coughs back if hears a cough or sneeze, has "magic sayings", cannot wish anything (cannot do anything such as saying pledge of alleg, as she has to put hand over heart), could not do certain motions in ballet, had scrupulosity & confessions, needed constant reassurance, had to say sorry God, thought she was cheating, had to tell complete truth and never thought she acheived truth, could not play with friends due to germs, could not swim in pool due to germs - and more.

 

If you want any specific ideas - PM me your email & I'll be happy to send you some example files from the program we used.

[matis_mom]

Meg's Mom,

 

Thanks for your post, it seems we have a lot in common... About the GI issues, have then run a complete stool panel. Mati's tests where sent to a place called Diagnos-Techs, Inc. They did a "Expanded GI panel". They checked for Fungi, Parasites, Bacteria (that's where the strep shows), Toxins, Giardia, Roundworm, Tapeworm, well... you get the idea, nearly anything that could be wrong... So at least we know there are no other issues besides the strep That's one thing I appreciate about Dr. Zachrison's practice, they look at the overall picture, not just one thing.

 

As for the BT, yes please I'd love to see what you have been doing. How do you PM someone in this list? And, what is ERP?

My brother-in-law is a psychiatrist AND a neurologist, he recommended the book "Stop Obsessing" which is pretty hands on, but is really written for adults, so even though it has helped a lot (it really helped us identify how much the OCD was limiting his activities), I think we all would greatly benefit from your book recommendations. Your dd's symptoms are very familiar to my son's, except his are not so severe, my heart goes out to you. My oldest went through a scrupulous stage, but that has resolved on it's own.

 

I will definitely insist on a higher dose of abs. and ask for either Augmentin or Azith. What he is on right now is not working, and I am really concerned about his joints, as they keep swelling and hurting off and on.

[matis_mom]

EAMom,

Yes, I was thinking of that last week when the toddler was all out-of-sorts and ds started to go downhill... I just don't want to face the pediatrician... I guess I can just go to the Minute-Clinic at our local drug-store and have them run a strep test. Fortunately, we are homeschooling, so that cuts down a bit on the exposure, and I have to let everyone in our homeschooling group to please watch out and let me know asap if there is strep (or anything else) going around.

Very interesting concept about them reacting to colonization... it will not be easy to keep everyone checked and clear.

 

Thanks for the tip about Dr. Cunningham's lab... I'll get on that ASAP, I don't want to wait three months!!!

 

Also, it seems some of you have more than one PANDAS child, is that common? Thank God our second oldest is the only one with issues at the moment, but I wonder if we will run into this again in the future.

 

All your responses give me great hope but also a realistic approach... it seems even on the right ab it takes time, and then again some kids need IVIG or PEX. I just want to know exactly what will it take for him to get well, and go straight for that. But I guess things are not so simple, and I am grateful we are already ahead of the game by having found the right docs.

 

Thanks so much for all the help!

 

Isabel