dcmom

Michael- Our insurance pre approved pex for our daughter at our in network Georgetown U hospital. She had the procedure, it was miraculous for her in the sense that immediately we were seeing a kid we hadn't seen for a while, issues that we didn't even attribute to pandas were gone. She was in the hospital for 4 days, it was stressful but so worthwhile. Then the bad news- she had a pandas episode a month after pex when she had H1N1- this however was stopped in its tracks after the first dose of steroids, she has now been really good since Thanksgiving. I don't know what the future holds, but I do think the PEX got her back to baseline and we are so much better off for that. Now of course, our insurance company has initially denied (yes after they pre approved treatment) paying the 28000 pheresis bill. At best we have a battle on our hands, at worst we will have to pay some of that eventually. But frankly- we have our daughter, our family back. I know there is someone at Columbia that has done pex for pandas. If your son has been admitted to the psych ward, I would call this an emergency case. Call Dr Trifiletti- he has lots of history in NY- he may know who you can turn to. If your son has reduce immunity you would need to follow up with IVIG most likely. Please keep us posted- we are all devestated for you and your family. Eileen

Michael- I am so sorry. I cannot begin to imagine the agony you are going through. I am not that familiar with your son's history, but is there ANY way you could consider plasma pheresis for him? I know there have been mixed results, and many parents feel ivig is their preferred route. But, pex it immediate and I think is the go to procedure for extreme situations. It can within a day start to rid your son of symptoms. There will still be issues to deal with, possible ivig to follow it up, and of course longterm antibiotics. Of course Dr Latimer has it done at Georgetwon, but I believe Dr ELia at CHOP has had it done, and maybe a Dr Chiriboga at Columbia (in NY). My daughter has been through it, and I can tell you it pales in comparison to the agony of a pandas episode. I am not sure where you live- or if this is helpful at all to you...

tpotter- I would be really interested in a description of your experiences with pandas, all three docs, treatments, and how things are now- if you have a chance. wornoutmom- I know you are probably tired, and this is all so overwhelming, but I will give you my thoughts. Unfortunately this is new and unstudied science, these docs all do what they can to help- none have all of the answers. I think as a parent, to help you to decide who to see, you should figure out what you want from them. In other words, I think both docs will help you with diagnosis. Your son certainly sounds like pandas, and pandas is a clinical diagnosis, there are no absolutes. Dr K, I imagine, will put your son on antibiotics, and maybe try a 5 day steroid burst as a diagnostic tool. He will, I imagine move you quickly to IVIG. You will probably be able to get the IVIG in Chicago- but I believe you will have to pay up front and then get a reimbursement (if you are able) from your insurance company. I have not seen Dr K- so others may chime in here... Dr L would be interested in a Cunningham test I imagine. She would probably start your son on long term high dose antibiotics and a month long course of steroids. Depending on the outcome of this, she will then determine if your son should be considered for plasma pheresis or IVIG. Her office will work to get you pre approved with your insurance. It will be (I imagine) a bit longer of a process than pre paying with Dr K. (Of course, as we have found out pre approval is not a gaurantee of payment- but don't get me started) I have not had any issues (others have) with Dr L's responsiveness. If you chose to see her, however, I would plan on multiple trips to MD for the first year- it is a very complicated disorder, and certainly is better to follow up in the office. The other thought might be to contact Dr Bouboulis in CT. He is an immunologist (somewhat new to the forum parents I think) who is helping many pandas patients. He believes they need monthly IVIG (of course does a detailed immune panel to asess this). Possibly if you saw him for diagnosis- you could figure a way to have the IVIG done locally- if this is your goal. It is so hard making these decisions- as parents we can only do our best.

My dd's first episode- with positive strep- lasted about 12 weeks. She clearly needed a month of zithromax to clear (or hopefully so) the strep infection. After the twelve weeks, she was not at baseline, but very close. Her second episode induced by T&A lasted close to 8 weeks, appeared to possibly be starting to remit (on abx daily entire time), and then fully remitted with steroid burst. Her third episode from H1N1 was stopped in its tracks after 3 days with a steroid burst. She has had other shorter, milder flare ups from exposure to strep of classmates, which seem to last from 3 days to a week. Hopefully if you resolve your daughter's strep- Mati will settle down quickly. Would you consider zithromax for her- possibly her strep has gone intracellular? In our situations- I would not hesitate to give her a 30 day course of zithromax. I imagine Dr L will concur. Take care of yourself, with that little baby on the way

Do you need Dr Trifiletti's info? I wouldn't let her age deter you at all. There was an Isreali study (someone here can post a link) that followed four men that improved with ivig. If you could get daily zithromax (azithromyacin), I would do a long term (a few months minimum) trial of that. Along with that, could you get a steroid (prednisone) burst- which would be like 2 weeks of a treatment dose of steroid, with two weeks of tapering down. This would be a start. My daughter had plasma pheresis, and I can tell you, if you are at a top notch hospital, it is not a huge ordeal and the risks are low. Dr Elizabeth Latimer, a well respected US pediatric neurologist from the DC area, is speaking at the Autism conference in Chicago in April or May- possibly you can get a transcript of her speech. Dr Trifiletti did a post on here recently about pandas info, that he wants to include in an upcoming paper. It speaks about treatment. Maybe if you could get that paper to his associate Pavone and beg for some help in Finland.... I am so sorry for your struggle.

Debbie, Keep us posted. Strep does come with tummyaches, but I am not sure about throwing up. My dd did have a pandas relapse post T&A though (this remitted with a steroid burst), so I would consider upping the antibiotics if possible, and keep a close eye on the kiddos. I do think, ultimately, a t&a is needed for them, so you just have to make it through. Good luck. Eileen

Bat-sheva- I would consider contacting Dr Rosario Trifiletti in NJ. He has long term experience in pandas, and very much understands the science of it all. I believe he would be very responsive to speaking with docs in Finland, as he as worked with doctors in Italy before. I would also consider emailing Dr Susan Swedo at the National Institute of Health- she "discovered" pandas, and may have some experience with this. Best of luck to you...

wornoutmom- I have seen Dr Latimer and Dr Trifiletti (I have not seen Dr K). I have to say, I had a similar experience with Dr K, he returned my email immediately and told me my daughter had pandas and to seek ivig. I was very skeptical- but I have to say so many parents on this forum have had a wonderful experience with him- I just think he may be a bit unusual (for a doctor). Both Dr Latimer and Trifiletti are pediatric neurologists with excellent credentials and experience. Neither only treats pandas, and both will work to rule out other diagnosises. Neither take the diagnosis lightly, nor rush into un needed intervention. At this time, I am not sure if Dr T is set up to get IVIG or PEX- which is why I would suggest Dr Latimer, as she works closely with Georgetown University Hospital. She also works to help get everything covered by insurance (and Georgetwon accepts most insurances)- which is the reason I would recommend her over Dr. K- even if the travel expense is a bit more. That being said- your son's issues DO sound so much like many on this board's experience. Strep is only needed once- and many times it is missed because it is asymptomatic (the strep that triggered dd's pandas was one day home sick with a fever of 100.3- that's it). My daughter now reacts to other immune challenges. She had plasma pheresis this year- and the month after it she was a different kid- remarkable. She then contracted H1N1 and had a pandas relapse. Luckily with continued antibiotics and a steroid burst- she is well again. My advice would be to run (not walk) to Dr Latimer, because although she is busy, she is committed to getting these kids 100% well.

Peg- I have also noticed that during the illness (fever related) Julia doesn't have any issues- it is right as she is better- weird. Thanks for all replies. I was wondering this for a few reasons: I think I noticed some issues with Julia when my dh had a bad cold. Nothing major, just a little tired, dark circles, etc. Also: She has done so extremely well on the last two weeks out of school, and she looks great, and is eating great, and so energetic. I am curious to see if that continues, or if being at school (someone is always sick there I imagine) and exposed to so much more is a problem.

Wornoutmom- Welcome and ((hugs)). Your screen name made me so sad. I am so sorry for all you and your son have been through. I will get right to it. You need to go see Dr Latimer. She is a pediatric neurologist in the Wash DC area. (where do you live?) She is the only doc in the country that can/will offer your son all of the treatment he needs. He should immediately be on daily antibiotics (my kids do well on zithromax). He should do a one month steroid burst. After that you can consider further intervention like PEX and IVIG if you need them. My kids haven't been going through this anywhere near as long as you (we are lucky to live by Dr L)- but I can tell you it is autoimmune- so your son had many relapses with illnesses- we have the same. You may need to get your son in a healthy place with IVIG or PEX and high dose antibiotics, then I truly believe this is manageable with antibiotic therapy and steroid bursts during post infectious relapses. The parents her are like a family. Lean on them. Ask them for help. I hope you will find the answers you need...

Thanks everyone! We did visit family for Christmas. One cousin had a documented and treated strep infection 4 days prior. My SIL was kind enough to treat all of the kids prophylactically. Her kids all looked robust and healthy. It didn't cause any issues for my kids. I lost a night or two of sleep. Caroline came down with a cold over the weekend. She is on daily zithromax. She definately had moodiness, depression, and loss of appetite- culminating in a meltdown Monday morning. I did take her to the ped for a check- its just a cold. Last night, she seemed to be coming back; ate and was cheerful. Hopefully it was a minor blip due to the cold. Again hopeful for the new year!

for my daughter (and I believe MomtoT) it was a behavioral or psychological response to strep (pandas). It was ocd and/or sensory related. There was no wetness (or no more than normal) after wiping, and certainly nothing in the underwear (although she would change the underwear constantly). It you find wetness in the underwear (I would say more than a drip- which could be normal) then it it something different than my dd had. BTW, I think this is very common, it was mentioned in a pandas study where kids had urinary frequency and exessive toileting rituals...I have to see if I have that and link it. For us this was the MAJOR and first symptom of first episode- that ped totally missed. Oy.. Let me know how it goes Suzan...

Susan- That is it. It is like after urinating they continually feel wet and need to wipe again. It is really ocd I think (maybe prompted by some sensory stuff also). My dd had this really bad during first exacerbation, she got to the point of spending 45 min on the toilet wiping after urination. It started "overnight". Then she started avoiding urinating at all costs, untill she would have an accident. Thankfully that cleared up after first episode, and hasn't come on as strong since. I do notice she still wipes slightly exessively, and once and a while she will have a few days where she runs back to the bathroom after urinating. It is frustrating. Another girl on this forum (momtotaylor) had the same exact thing. For her, also, it was one of the most stubborn things to overcome. Try to approach it with an ocd tactic- (Meg's mom is the pro)- like: wipe with two balls of toilet tissue. After that, if you still feel wet, it is ocd (substitute whatever word you use here) and you have to ignore it and get involved in an activity, and the feeling will go away. Our psychologist used a term guti (dd hated, but understood) which meant get used to it. It was from a game they would play ... If your daughter starts struggling with this, definately email Meg's mom for some strategies to move her through.

Peg- I wish you the best with your trip. It will all be okay, and will be worth it if you can get some help for your daughter. Since she has had it so long- I would push Dr L to consider something like: IVIG, then PEX, then maybe a term of monthly IVIG. Just a thought... I will be thinking of you! Where are you staying? Will you be able to do any sightseeing? Eileen

Time, antibiotics and steroids seemed to help my older daughter in the tummyaches dept. They are not/ were not ever gone- but it has reduced mostly to a minor complaint at bedtime (which is also when she usually has a bowel movement). For her I have come to the conclusion that she has become hypersensitive to what is going on in her digestive track. Initially, her tummy (actually abdomen) bothered her anytime something was going on down there; hunger, during eating, after eating, before and after bowel movement. It was terrible. Time from onset calmed things (a good 5 months), and then steroids and antibiotics continued the improvement. I think for her it may have started with stomach problems but has morphed into a sensory/anxiety thing. This is going on a year. We had lots of testing done, but stopped short of endoscopy (the doctor didn't think it was indicated- and I agree). This all started a week before a postive strep culture. Sigh.

Susan- I am sorry. My daughter can get this "wetness" issue sometimes. For her it is the feeling of not being able to get a dry feeling after urinating. Could it be something like this (ocd/sensory) and not vaginal strep? I guess I would up the abx if you have them...

Thank you Angela! I am sorry to hear you are having a rough time as well...

SF Mom- ear infections are many times caused by strep pneumonai. This is not the same as GABHS. I know you are trying to connect dots... have you been told by Dr Cunningham or others that strep pneumonai and GABHS are related? Is it possible that either of these can jumpstart pandas? I often see you use these two bacteria interchangeably- so I am wondering if there is a reason? Thanks!

Hi all. Julia, pandas, age 6 continues to do really well. Whew! Her sister, Caroline, age 9, has been under pandas suspicion for a while. She had strep at sister's intial episode, and since, has had daily abdominal pain, emotional lability, slight depression, lack of appetite, loss of interest in extra curriculars, irrational fear of illness, a few ocd like panic attacks. She is on the last couple days of a month long steroid burst, and daily zithromax. Just a few days ago, dh and I discussed how well she was doing: appetite back, more energetic, happier, no temper tantrums. Well of course, we spoke too soon. Over the weekend she came down with a cold (seems fairly mild). Saturday and Sunday she seemed depressed and did some crying because she was sad and didn't know why. She wouldn't eat much yestarday and she barely slept last night. This morning she had a full out melt down yelling, crying (even giving me a shove) about not going to school. (and I wasn't even engaging). In all of her years, she has NEVER given me trouble going to school. So anyway- she is home. Taking her for a strep test today just to rule it out. Have your kids had these type of reactions to colds? How long did they last- as long as the cold- longer? Thanks. (I was so looking forward to a great start to the new year...)

Mom2pandas- most of your post went over my head- I will need to re read a few times.... but YES to everything you said! The sensory and emotional issues for both dds have been more on than off since original episode, but the true ocd has been more limited to clearcut exacerbations....

Julia is doing really well. She has had a few blips here and there, but her overall trend is improvement. I think being out of school the last two weeks (for holidays) has been helpful. I have noticed/ wondered that possibly some of her blips have coincided with being around others who are sick, not with strep, but maybe colds or whatever... Has anyone noticed this? Does the immune system get activated when in contact with someone who is sick? I do feel she has an increase (sometimes very slight) when her immune system is activated. I wonder what types of things cause our immune systems to activate? Thoughts?

Buster- looks like our kids are the same. I am assuming my dd has an over active immune system. All of her bloodwork has come back perfect (although the one number we haven't done yet are strep pneumo titers). She has always been a healthy kid: no ear infections, not alot of strep, etc. We only did the strep titers once, about a month into antibiotic treatment- they were normal. Her cam kinase was 161 when she was coming out of an exacerbation. She has reacted to siblings and classmates with strep, losing a baby tooth, and H1N1. She has been helped dramatically with steroids. What could this mean as far as treatment? Eileen

Wow- you are an angel Dr T, and a true doctor! Trying to figure out what subtype dd would be... If a child is very responsive to steroids, then I guess pandas type 1 would be it? Must make appt

Thanks peg- I am just wondering if that is enough. I am starting to feel like we have been through too much this year, and things are pretty decent right now- is it worth jeapordizing. I mean- lets say I dont' think she will get strep- but if its like the peanut allergy thing it could cause symptoms. Sigh. DH won't want to cancel...

So- we live out of town, and are planned to drive home and see the whole family: cousins, aunts, uncles, grandparents on the day after Christmas. Realistically it is the only day. My SIL just called to let me know that her daughter was diagnosed with strep yestarday (she has two sisters), everyone else feels fine. She is on amoxicillin and feeling better. Do we go? I personally would cancel, but this is my inlaws, so it isn't only my decision. My SIL said she would put all the kids on amox prophalactically. This stinks! It will be kind of a big deal if we don't go- but I hate to chance any exposure (or even reaction) by my pandas dd (not to mention the other one). Advice? Have you dealt with this before? Thanks, and happy holidays