dcmom

okay, this is slightly off topic. But, I also saw Dr Latimer yestarday and had a great appt. We are taking a similar course as Dee: Cunningham test, steroids, proph abs. We are keeping our fingers crossed that this will do it this time round. She also asked about dogs and pets. We have none, but are considering getting a puppy in the near future. Pandas dd LOVES animals, and is begging for one. Any thoughts? I certainly don't want to bring strep into the house. Those that have dogs: have you had them tested? Maybe we could do prophylactic abs on the dog (my husband and vet will think I've lost it I am sure- this sounds ridiculous...)

ABC News is doing a primetime special on children living with ocd tonight. You can see info on their website. I don't think I will watch it, may be too painful. Especially because I doubt they will mention pandas. They mention one child is five. I am sure he and maybe more may have pandas (typical ocd doen't manifest that young, I don't think). The most painful part will be that these kids are probably not being treated for pandas. I sent an email to primetime telling them about pandas, and imploring them to look into it for the sake of these kids. Maybe if we all can send an email- they will notice. The most painful part of this is the time before diagnosis, and the longer that goes on, the worse for the family. I tried to find a way to directly contact the reporters, but couldn't. Let me know if any one is more resourceful than I, and finds something better than the form email.

Ok. I have always vaccinated my kids (naively trusting the system). They have all/most of the "important" ones. I don't think I will let them have any more for quite a long time. (one due to pandas, the other also having some medical issues). Does anyone know where I find the rights/requirements for my state (well Washington, DC actually). I am told to speak to the school nurse, but would like to know my rights before I do so. BTW, I think the only thing required of my kids this time round is HepB. Not getting it, or any type of flu/ swine flu vaccine. PS: My pandas dd had the flu mist about 2 weeks after a typical bout of strep throat. (This was about 8 weeks before onset of pandas). I don't know if there is a connection- but I think about it alot. Thank you.

I definately tend to believe Dr Cunningham. I am always suspicious when doctors are "sure" about something. Medicine doesn't really seem to work that way. When I had conversations with a great neurologist, Dr. T, he was much more open and honest about how much isn't known. IMHO the sign of a great doctor/scientist is the one who will admit we don't know much. When you dig with doctors about how strep manifests, how to test for it, etc., it is clear that we are just scratching the surface. I wonder about the different strains. My pandas dd had strep twice before her pandas episode. Both cases were much more typical: fever, sore throat, miserable, and absolutely NO unusual behavoirs. Thos past time she had strep, there was no fever, no sore throat- only behavoir issues that finally led us to a positive throat culture. Her older sister (non pandas) had strep once or twice and then had her tonsils out. She had no strep for a few years. She got strep from her sister (the time of pandas) and manifested it much differently. She tired and cranky, but no sore throat or fever. We had her tested because I now freak out about strep. She was left with something like IBS from that infection. Whatever the strain that went through here was, it ravaged my kids- but with very little typical medical symptoms. What does this mean? I don't know. But I do know there is one study (i think Pincichero & Murphy) that states that most of the pandas kids were presenting without the "typical" strep symtoms.

Vickie- Do you know why your doctor only reserved for worst case?

I am also interested, as we are seeing the neurologist tomorrow, and will be asking for a steroid burst. Please indicate if your child was at their worst point with symptoms, also. My dd is not at her worst point, but is still having some difficult symptoms that I would love a shot at getting under control before school starts. Thank you asaxon for a good topic.

Thanks Suzan, Unfortunately filtering chloramine is harder than chlorine. It will not dissapate on its own from the water (even if left overnight), and most point of use filters do not filter chloramine.

I would be interested! In fact with all of the discussion of chlorine as a trigger (my daughter does not have tics, but ocd and sensory issues) I cringe every time my kids take a bath. Our horrible DC water (which we do not drink or cook with) is treated with chloramine (chlorine plus ammonia). There is no easy way to remove this from the water beyond a couple thousand dollar whole house water purifier. (We plan to move in about a year so don't want to invest here...). I have read about vitamin C tablets as able to neutralize chloramine. But if anyone has any real info on the toxicity of chloramine or removing it- I would (I think) like to hear...

Hi everyone! When I first found out about pandas, I posted a request on my community forum for help from other parents of pandas kids. I received about 6 responses! All of them were different, some more positive than others. Many of us on the forum are in a current struggle, with our kids being rather young. Diana is interested in gathering stories from parents whose children are older, and have had treatment. I told her I would reach out to the forum. Please, reach out in your communities to find these parents. Ask them to write a synopsis of their child's onset, illness, treatments, and results. Please ask them to include email, address and/or phone number, and helpful doctors if they wouldn't mind. I will compile them and send them to Diana when somewhat complete. (She has too much going on with the website to do this now.) Email me at sroka2967@comcast.net Thank you!

Nancy, Everything you have said makes sense. What type of testing do you think is helpful to isolate the cause of pandas. Do you think it is possible to minimize those causal factors to help to reduce the pandas symptoms? We just started seeing a DAN. He has ordered a stool test, and we are doing a temperature test (Wilson's thyroid). What is an immunological work up? I assume it is bloodwork. Is it helpful- even if the immunologist doesn't believe in pandas? PS: Thank you to everyone on this forum. It is so helpful to my state of mind to be able to have meaningful and understandin conversation about this. Even the most well meaning family members just cannot understand this...

Vickie- It is hard not to look back and think I was in "la la land". I find pandas SO frustrating. Although I certainly count my blessings, daily, now- since dd is relatively healthy and for the most part happy. There is almost no history of autoimmunity, psychological, and/or chronic health problems in mine or my husband's family. I can trace my medical history to my great grandparents for the most part. I really feel that pandas (for my dd) is somehow connected with chronic constipation which she has had since she was in diapers. Sadly, I was naive, and the doctors only tried to "manage" it, not find out the cause. It seems many disorders (autism, ms, etc) are making the gut- brain connection. Maybe food insensitivities? I am also eliminating any toxins from our diet, and next, our home. We always ate a rather healthy home cooked type diet, but now we are completely organic. No artificial anything in the house. I definately feel the increase of artificial ingredients, gmo's and pesticides are not helpful.

I was wondering if anyone had been to this doctor, she is a DAN doctor. See this link for some interesting information on pandas (confirming what many of you already know): http://drohara.com/information/documents/N...er-Fall2007.pdf Dr. Nancy O'Hara in Connecticut.

Erica- You are not crazy. A mother knows her child, and if something is not right, you need to push the doctors (and your husband) until they are on board. My husband was a little slower than I to understand the seriousness of pandas. I started printing out studies and posts for him to read- that was helpful. He sometimes will still suggest that I attribute any of her problems to pandas. But, I know the child I had before, and the child I have now. She also has an older sister, so I am somewhat schooled on the phases of growing up. Some things are different: sleeping issues, anxiety, short temper, etc. My dd is on zithromax 400mg per week (she is 40lbs), that is a prophylactic dose (and I am not sure it is enough at that). It took her 20 days of 250mg/day to see real improvement, initially. Don't panic, if it is pandas, the most difficult step is connecting the dots, which you have done. Stay strong, and be glad your child is happy, and at a low symptom level. Shaes Mom- thank you for your post. I am so sorry for what your family is going through. It does (somehow) comfort me to hear we are not alone. Pandas has been so difficult for all in our home as well. It has been devestating for me, caused friction at times with my dh and I, and been very traumatic for pandas dd's older sister. I even considering counseling for her. She is 9, and although I have explained it to her- I also don't want to scare her. She is angry with me, and her sister, and at the same time worried sick about her sister. I just hope we can all get a handle on all of this soon.

Dr. Elizabeth Latimer, neurologist, in Maryland is compassionate, knowledgeable and helpful. Dr. Rosario Triffileti, pediatric neurologist, now in Middletown, NY (as of Fall '09) Dr. Susan Perlmutter in Northern Virginia is knowledgeable, very helpful in diagnosis, limited medical intervention available. Dr. Julie Lewis, The Ross Center for Anxiety, psychologist, very helpful in devising strategies to work with Julia. Helpful with the school as well.

mommd- Thank you so much for your detailed post. It offers me so much hope, with a disorder that is so difficult, on a forum that has amazing parents- but not always such hope... How lucky your son is to have you! I am so glad the results are great, and wish him continued health. Please keep us posted! We will be seeing Dr Latimer in early august. If we consider pursuing ivig, or pex, I will email you for your thoughts... Did Carter do a steroid burst at all? Best, Eileen

We are seeing dd's neurologist early Aug, and considering doing a steroid burst. I have the same question. I know steroids have issues, but would it be safe and reasonable to use proph antibiotics to prevent infections. Then, assuming (maybe this is naive) that the child averages one flare of symptoms that doesn't remit with antibiotics- treat with steroids. How often is it safe to use steroids? ( I have yet to research this)

Just to agree with Lisa: We were seeing a great child psychologist who specializes in anxiety, ocd, etc- although she did not specialize in pandas. She was in complete agreement that there is a huge difference in the typical ocd she treats, and pandas ocd. With my daughter it came on overnight, therapy was only slightly helpful, obsessions/ behavoirs seemed to change between sessions, and she made a complete turnaround after a month of antibiotics. The psychologist was a HUGE help to me, but really felt we needed to push the doctors on a medical approach. (to which I agree...) I do think, however, that it is possible for untreated pandas to manifest as permanent ocd at some point. I hope that with treatment of antibiotics, etc we can prevent that...

Mommd- Hang in there! I hope (we all hope) this is the answer for your son. You have been so brave. I admire how fast you have worked, your son is lucky to have you! Please keep us posted, and at some point, tell us about the whole experience. I am considering pex at Gtown with my daughter, at some point...

Falling apart- I am so sorry for what you are going through. Your daughter sounds alot like mine. My dd (almost 6) started pandas behavoirs mid January. She worsened for 4 weeks, until we figured out what it was. Overnight, ocd, sensory, urination issues, temper tantrums, difficulty sleeping and food aversion. We tried cephalosporin and amoxicillin. These somewhat improved her, but not much. We changed her to zithromax. I was so hopeful for a big change. It took 20 days on full strength zithromax, and we finally had a breakthrough. At that pt we switched to a prophylactic dose. She continued to improve every day(with one small 4 day setback), and was back to about 98%! We are now in a relapse, after a tonsillectimy Give the zithromax time. I do think (unfortunately) time is part of the equation. I would try the steroid burst (we haven't yet) if you don't see improvement in a week or so, it can help "jumpstart" improvement. There are many parents on the forum who haven't had a positive strep (or titer) test, as well. We haven't done it yet, but there is a new blood test by a Dr Cunningham that is more of a direct test for pandas. There is a thread on that, and if you email one of the parents, I am sure they will give you the info. We did see a psychologist for a while, and although it didn't really solve anything, it was a great help and comfort to me. As a mother who has always felt confident in my parenting skills, these issues have completely thrown me. It was great to have someone to brainstorm with about how to approach her issues, and coax her. Ultimately, though, it was the zithromax that improved her.

Does anyone have chlorine (actually I think we have chloramine) in their household water? We don't drink (or cook) it, but dd bathes in it. Has anyone installed any kind of filter- do you have any recommendations?

Does anyone notice OCD, anxiety or other mood issues, alone, increasing with chlorine? I am still trying to figure this whole thing out. We live in the city, and our bathing water (we don't drink it) is chlorinated. I am contemplating a filter. (My daughter has never had tics, but struggles with pandas ocd and other pandas induced behavior issues).

Hi Swim, I can just tell you what we have done: We dabbled with other antibiotics, that had some effectiveness, before we went to a 20 day treatment dose of zithromax. At that pt dd was at like 90-95% better. She then went to 400mg per week (she is tiny, like 40lbs). That was working REALLY well, untill she had her tonsils out (now we are having some symptoms again). This advice is coming from a great and interested neurologist! We are trying to avoid yeast issues, as per advice on this forum, with 1/4 cup of kefir a day (mixed in a yummy sorbet/ frozen fruit smoothie). Hope this helps a little....

Michelle- You definitely need to talk to your do, but: There are MANY docs doing IVIG, just not for pandas. It is not an experimental therapy at all, it is only "experimental" for pandas because there haven't been enough studies.... (and unfortunately there may never be...)

Hi Mommd, I know a family who had pex, for pandas, at Georgetown, prescribed by Dr latimer. They were absolutely impressed with the hospital and doctors there, and mentioned that at that point Dr Latimer was hardly even involved. They said it was intimidating having the central line, and that the pex machine was noisy, but that the doctors and nurses was top notch and at their side the entire time. I wish you luck, and please keep us posted. We are biding our time, but will probably end up doing either pex or ivig at Georgetown in the future (we are luck enough to live in DC). A question about the Cunningham test: I dont necessarily feel I need proof of pandas, since dd did have a positive culture and sudden onset of symptoms within the same month. But if I am considering pex or ivig, think it would be worthwhile- since they are a big step, and dd has "only" had one episode. Will the test still come back positive if she is on abx and not in a flare of symptoms. I mean, many of her issues are still there simmering and surfacing when she is tired or stressed, but she is in no way like she was at her worst. I only hesitate because she is 5, and lives in fear of doctors and needles....

Recap. Five-yr-old DD had her first pandas (very clear cut, textbook case) episode this winter. It took us 4 weeks to get a diagnosis. After 20 days on zithromax, she was 90% improved. We just had a T&A. She does not have a history of recurrent strep. Currently she is on 400mg of zithromax per week. Question, assuming she doesn't currently need the zithromax for immune modulation, would it be sensible to take her off the abx (at least for the summer) and be vigilant about watching for signs of another episode (I think it will be a long time before I relax, anyway)? Are most of your pandas children on abx? Has it totally prevented strep? Does anyone only use the abx if symptoms flare? Or by then is it too late, and do you need another month course? Should I consider switching to a more narrow spectrum abx for prevention? As a side note, she definitely has a slight uptick in pandas behaviors when she is overtired (I guess the weakening of the blood brain barrier thing?). Can this be cured (theoretically) by IVIG or PEX? Thanks for any insight or experience you can offer...