wornoutmom

Had our ENT appt today. He gave ds a 30 day script for Omnicef 600mg (thank God!!) and recommended sinus surgery (forget the exact name but amounts to a clearing or tissue and putting in "windows" for drainage). He also did a nasal swab to see what kind of bacteria is in there and if perhaps we should have those results by Monday. He may prescribe a different abx if it is indicated. I am SO interested in that result. I did not schedule the surgery, as I want to do some thinking about it before signing on, and wondering what Dr L will have to say about that. If we decide to delay surgery, ENT will keep him on antibiotics should he flare up again after 30 days, but won't do it indefinitely. Meanwhile, we've got a script and another chance to document behaviors before seeing Dr. L. Most of all, his suffering may abate soon. (and I have this uncontrollable urge to run to the pediatrician's office and stick out my tongue at her "virus"). Do any of you have thoughts on this surgery? If PANDAS responds to long term abx and Dr. L is willing to go this route, maybe the surgery will be unneccessary? Or if this is where the bacteria is hiding out, maybe this surgery could lead to remission/recovery? Seems like this will be a shorter term fix, with the longer term issue of the immune issue should he be exposed to bacteria in the future. For those of you on long term abx, what have the docs told you about the complications of long term use re: immune suppression and becoming resistant to antibiotic classes in the future?

With the encouragement of you all, I have made an appointment to fly to DC to see Dr. Latimer. I was thrilled by how fast we can be seen (appt Feb 2nd) as I had expected to have to wait a few months. I am determined, but also terrified that it will go the way of my phone consult with Dr. Nicolaides. Since that consult when Dr N said she wasnt convinced this was PANDAS and she didn't hear the OCDin my description, just mood swings, I am wondering how I get across that these meltdowns are anxiety/obsession based. My son has been diagnosed with OCD since he was 7 by his psychiatrist. Since that time he has seen 3 different therapists, had 2 consults at UofM, and been hospitalized twice. Everyone of these professionals diagnosed OCD (along with Depression, Panic disorder with agoraphobia and GAD). I updated my psychiatrist via phone yesterday that my son has had daily anxiety meltdowns/rages for the past week along with school refusal and recurrent illness again. His response was that he wanted to do some lab work and try Depakote. In 7 years he has never once mentioned bi-polar disorder. I am guessing this is coming from the consult with Dr. N. Today I printed off Dr.T's protocol proposal and delivered it to our psychiatrist, along with a letter directing him to this website for any research paper he'd ever want to read, and firmly told him it was time for antibiotics. My husband and I are in agreement that we will not try Depakote, unless Dr L. assesses this is not PANDAS. Again, I am terrified. Does anyone have any recommendations about how to present all this history to Dr.L in the best, clearest way? I have written a 10 page history on my son with dates of medical tests, lab results and exacerbations, medications etc. I'm wondering if it's too much? For anyone who has seen her, what is she looking for as far a presenting history? Just an aside, but I have been giving ds 400 mg Ibuprofen 3X day for the past 6 days as he complains of headache/sore throat. Each meltdown has occurred around the time you would expect the Ibuprofen to have worn off (5-6hours) or not kicked in yet (seems to take around 45 minutes or so). Do any of these docs say anything definitive about Ibuprofen's effect or is this just because the pain is coming back he's feeling more vulnerable to the anxiety?

I definitely see this in both hands during meltdowns with my son. The fingers are not moving independently like a piano, but as you described - like on the way to a fist. Often times he has them up by his head - like he's wanting to scratch the "ick" out of his brain (all the while screaming "help me! my brain!" )

Can I ask how you follow up treatment with a dr who is so far away? The draw to see Dr K is that it is a 4 hour drive and we could follow up. But I'm sensing from responses that Dr L would be the one to head to given her expertise and probability that we could find a way to get insurance coverage. Does that mean flying into DC on a monthly basis then? Having seen Dr. L and Dr. K, do you see any drawbacks to either?

That's a toughy. The short answer is that certain strains of GABHS (notably emm-type 6 and 19) can go intracellular -- but that was a relatively recent finding (2004). Intracellular strep appears resistant to amoxicillin -- not because it is, but because the amoxicillin can't get to it. There's anecdotal evidence that kids with intracellular strep have elevated CD4 to CD8 ratios (these are particular receptors on T-cells that determine whether the T-cell is looking for extracellular bacteria or will kill infected cells). Lots of things can cause elevated CD4/CD8 ratio but one is that the immune system is misfiring and activating more Th2 than Th1 cells - i.e., it's looking outside for stuff that is inside. So the short test is trying a macrolide like azithromycin -- the longer test is getting flow cytometry. Hopefully that short explanation helps. Buster What is "flow cymetry"? (and I just have to ask - what is it you do for a living that enables you to understand all this chemistry?!!)

More questions: I also have read here about strep hiding out and intercellular strep. How do you determine that? Is there some type of test that can be done?

I am wondering: how does PANDAS develop over time into PITANDS? And do docs really legitimize PITANDS when there seems to be no research that's been done on it? And would antibiotics treat that? It seems like antibiotic treatment all seems geared towards eradicating strep.

Faith: By the best of my recollection, he went off of Prozac when the panic attacks started in 6th grade. The pdoc had been slowly raising it in the fall as his school anxiety was getting worse (the period where he complained of GI pain). He then pulled him off it cold turkey to see what his baseline was and things went from bad to worse. Since that time my son has been on a mix of SSRI and/or antipsychotics and there were tons of med changes that year due to hospitalization etc. Last year was more stable on Celexa and Abilify. He is now on Luvox CR and a small dose of Risperdal. My son is a walking science experiment of chemicals...sigh.. The vacinnes were for tetanus, 2nd booster of chicken pox (is that varicella) and I dont remember the other, but it is the routine, last of childhood one I believe. I'd have to go back and look to know for sure. As far as behavior before and after, the only indication I have is that I can't remember anything remarkable before from that summer(july/aug). I do remember that in the early summer he made a new friend and was riding his scooter a lot with him. He seemed happy. He is always worried on some level, but I'm pretty sure things seemed ok. We got the vaccines, went to florida the following week for vacation, and he got sick with the tummy bug a day after we got back and missed the first week of 6th grade, and then all ###### broke loose. I actually emailed Dr. K a few months ago. We live in MI so not too far a drive. His immediate email response actually scared me, in that he was advocating IVIG immediately due to my son's age. That he wouldn't even consider antibiotics at this point because he is entering puberty and it may be too late for full recovery, even with IVIG. Somehow this seemed off to me, given that he hadn't actually seen my son or reviewed his medical history (just read soemthing similar to whatI posted above) , and I don't have the money to pay for this (my son weighs 120 poundsX $1000 per every 10 pounds= $12,000 per treatment). Maybe he was just trying to light a fire - the "run don't walk thing". I guess my biggest fear is that by going to see one of the big 3 (Dr L,DrT,or DrK) is that they already have a bent to PANDAS, and sometimes I wonder if I describe this whole thing with a bent to PANDAS. For those with experience, would these docs be honest to say "no - your son doesn't fit the profile - I don't think he has PANDAS"? Or would they be able to say definitively "yes - despite the lack of strep currently, he does have PANDAS". I don't know which answer I'm more scared of...Other than distance, how do you decide which doc to see?

I have been reading this forum for many months and have gleaned SO much helpful information, I decided it was time to post my personal questions since so many of you have so much knowledge and insight. I actually remember coming to this website many years ago when Chemar and Ronna were a few of the only members. I rediscovered this much more active site in October. My son is 14. I suspect an undiagnosed strep infection at age 3, when I returned home from giving birth to my youngest son to find my oldest with a fever and sore throat. Took him to urgent care a few days later where they ran a negative rapid strep test and sent him home with a "viral" diagnosis. He had had some signs of extreme tantrums prior to this at age 2, but things went from bad to worse after this illness. I was told it was adjustment to the new baby. About 3-4 months later his first tic appeared - eye blinking. Fast forward 3 years - tantrums/rages had gotten so bad we turned to psychiatric/psychological help. He was diagnosed with GAD with OCD features. We started him on Paxil after many months of fretting about meds, because things seemed to be getting worse. The day after we started him on a VERY low dose of Paxil, he exhibited handwashing, strange intrusive thoughts and uncontrollable anxiety - could not get on the bus to go to kindergarted (after 6 months of going no problem). We thought it was the meds, but 3 days later he was sick, and diagnosed with strep. Over the next 9 months, he had 6 positive strep tests. We discover his high pitched scream was actually a vocal tic. He also had a nose scrunching and chin licking tic. During this time, our psychiatrist diagnosed PANDAS, after attending a lecture by Susan Swedo. Our pediatrician got on board, tested the family for strep carriage (all negative), treated it with Clyndamycin (which seemed to finally eradicate it) and he had his tonsils and adenoids removed at age 8. Strep titers went from 800 to 160 after treatment. He also received excellent ERP at this time. We saw a great recovery in 2nd grade, and thought it was behind us. 3rd grade saw the OCD return in form of manic list making. We put him on Prozac and it abated. His handwriting had vastly improved, his reading had recovered to above grade level. 4th grade we saw some return of meltdowns but not frequent. Fast forward to spring of 5th grade. Anxiety increasing mostly surrounding school. Throwing horrible fits about homework and seemingly couldn't understand novels he tried to read anymore. Meltdowns/rages were coming almost daily. Brother caught strep so I brought my oldest (physically symptom free) in for a culture as well - bingo! He was positive. Treated him with 20 days of Omnicef and life improved. Several months later he received 3 vaccines at once - and passed out cold in the docs' office 5 minutes later. A week later he developed a stomach bug (fever, diarrhea) the first day of 6th grade. His downward spiral started there. Constant GI pain for months (the only thing they found was constipation via xray despite CBCs and stool tests and trial on Prevacid). School anxiety became uncontrollable, he developed panic attacks, suicidal thoughts and eventually school refusal. When things got to their worst, our therapist recommended psychiatric hospitalization. We got him to the hospital, only to have him wake with a 102 fever the next morning. Blood work showed 200 ASO, but positive for Influenza A. They sent him home with Tamiflu. No improvement - re-hospitalization 1 month later. We instituted an IEP and behavior plan with a new therapist, and got him back to school. 7thgrade saw improved physical health, improved mental health and forward progress. Started decompensating in May/June with violent rages - pediatrician runs negative strep culture, diagnoses with sinusitis and give 20 days Omnicef. Improvement till August. I went away for a week for work, and when I came back all ###### broke loose. He had complained of not feeling well while I was gone,but no definitive physical symptoms. He spent the entire month of August either raging or hiding in the couch, sleeping excessively and freaked out about starting school. The first week went well, until he complained of not feeling well again. Back to the ped. who diagnosed sinusitis again, gave 20 days Omnicef and sent us for allergy testing (all negative as well as normal immunodeficiency blood work and normal ASO AntiDnase titers). 17 days into the Omnicef he contracted the H1N1. Meltdowns lasting 4-5 hours including violence and trying to pull own eyebrows and eyelashes out started after off the Omnicef for 3 days. A couple weeks later we're back to the doctors with another sinus infection (per xrays). 20 more days of Omnicef. Best 2 weeks he's had in months behavior/worry wise. 5 days off antibiotics its all coming back and then he feels sick again. Doctor says its viral and refuses more antibiotics since latest sinus xrays are clear. More blood work finds low iron, and a positive antibody for past EBV (we never knew he had). I am desperate and take him to redicare where they give him 10 more days of antibiotics. Again, he recovers. 5 days later meltdowns start- has 3 violent rages in 3 days. Has severe headache, sore throat . Calm while on Advil until about 6th hour when it starts wearing off and then starts to ramp up again. Back to ped. (substitute - ours is out of town) yesterday where she says its just another virus and thinks I am peddling for abx. We have follow up with ENT Friday, and if that seems to go nowhere, the immunologist/allergist will do more blood work for ability to produce antibodies (which it would seem he has given positive result for EBV antibodies?) So here come the questions...After reading Dr.T's protocol posted here, it would appear my son fit into the Type 1 PANDAS category when he was 7-8 years old. But if you did that testing now, he wouldn't fit. Does having PANDAS Type 1 effectively change the brain so that other virus and bacteria can set off the same reaction? Is there scientific (rather than anecdotal) documentation of this? Everything I read is focused on strep. If looking at Dr Ts protocol now, my son would seem to fit into the Ideopathic Responsive to Antibiotics category. But the pediatricians are not wiling to treat with abx without true evidence of a bacteria, for fear of weakening his immune system further and setting him up for antibiotic resistance. And of course I get the reasoning that he is just less able to cope with his OCD/anxiety when he is feeling sick. Our psychiatrist is open, but uncomfortable prescribing abx as he has never done so and is unfamiliar with them. I gave him "saving sammy". He suggested I get a 2nd opinion on his PANDAS diagnosis. We had a telephone consultation with Dr Nicolaides (of Saving Sammy) who said she could not definitively say this was PANDAS, and suggested weaning him off SSRIs and putting him on a mood stabilizer. Then if that didn't work, perhaps try abx for 6-8 weeks to "see what happens". He has been weaned of Celexa but not his Luvox CR, and is on .125 Risperdal three times a day. This regimen is not working so far. We took our son to University of Michigan to consult with a psychiatrist somewhat familiar with PANDAS last week. She said they treat PANDAS kids just like other kids with OCD since right now it is just a "theory" and there is no treatment, but she would not be opposed to trying abx. But we left without a prescription of course. Just a letter of recommendation to the treating docs. Where do I go from here? Am I crazy to be going down this PANDAS path in light of no current or recent strep? If not, how do I get this across to the doctors involved? Our psychiatrist says he's "still in the game" but is awaiting result of our CamKinase (they don't open back up till 1-14) and results from the ENT and immunologist before proceeding further. I feel like every test and every person I talk to gets me further away from a PANDAS diagnosis. Honestly, I had given up thoughts that it was PANDAS given that so many seem to say it abates with puberty, while my son actually got worse at puberty. But then I read "Saving Sammy" and how old Sammy was when he received treament and it started me down this unending path again. Am I too late anyway given his age? Is this just something I have to learn to accept? There are days I really feel like I am going crazy myself. I am sorry for the long post but am truly looking forwarding to reading any responses the parent "experts" may have.