dcmom

worried dad- What is Dr K's take on why your son didn't respond to ivig? My girls have done pex, one is improving, and one doing well. Neither is perfect. I am considering IVIG, although will wait until at least the 1 year mark from pex, but just need to see that it REALLY works for more people.

ShannonOtown- Are we living the same life? I also need knowledge to feel a bit of control. And control is really hard to feel with pandas. I don't think that is ocd for me- more of the typical oldest child syndrome. I am lucky enough to live near Dr L, and try to see her frequently. But, frankly, this is a disorder where I think the parent needs to know as much as the doc. My family is VERY supportive, but knows nothing about pandas, ocd, autoimmunity, etc- so no help in that sense. (although my dad did just give us the $26k to get dd pex- which was awesome) My husband is totally on board, but does no research, (chides me a bit for being always on the forum), doesn't read any books I give him, and is happy just to go along that way. I also haven't confided much in friends, because not long before this happened we moved to a new city (where I knew no one, and didn't have the chance to make any really good friends) and it is a hard thing to talk about on the phone, to someone you only speak to every few weeks. AND, just when I was starting to breathe easier that dd, Julia, was going to be okay- her older sister had an acute onset of pandas! I am sorry you have a second child with symptoms. In some way, that was so much harder for me than the first. Maybe because I knew right away what it entails. Maybe because I was already tired. Anyway, it is good to know I am not alone (even though I wouldn't wish these troubles on anyone)....

Monarchcat- Titers mean very little. My daughter had textbook overnight onset debilitating ocd. No other complicating health issues. After four weeks of this, we figured it out and she had a positive strep test. Immediately went on antibiotics. After about 8 weeks on antibiotics, she had her titers done, and they were normal. Never bothered with titers again for either girl. I was told by a colleague of Dr Swedo's- don't bother with titers and MRI's. She felt they were not indicitive of pandas, and only muddy the picture. The only possible reason to check titers, would be to try to see/prove a recent strep infection. Positive titers would indicate a strep infection in the past, negative titers really mean nothing. I do not allow titers to be taken. My girls hate the needle, and there really is no point. Don't let this get you off track... Unfortunately, pandas really is a clinical diagnosis.

No- pandas struck mildly about a year ago, and debilitating in January. Her play is back to what it was about 4 years ago! It is not really a bad thing, just worrisome as a mom.....

Thanks everyone.... It is definately different- I know the transitional phase- that is where she was before pandas hit. She is now really playing (and sometimes acting) like a 5 year old. Sigh, it does bring her some peace and happiness, so we just go with it. Gats mom- thanks a million times, again, your longer term perspective is REALLY helpful. As I said, it is a minor thing to complain about, just that I can have some confidence that it will resolve in time.... Fixit- Ha! Well we had to pay for the plasma pheresis up front because our darn insurance company was giving us a problem (we had our other daughter pex'd in october and insurance co was refusing to pay after the fact), and we didn't want to wait as we were in crisis. We had to pay, gulp, $26k, and were potentially on the hook for $25k for other daughter. When she was released, the insurance co came through with approval. (But I am seeing for previous daughter they are only paying hospital $6k). Now I have to see if I can get our money back from the hospital. So, much more costly than IVIG, and I think similar difficulty in getting approval. It is a lifesaver, though.

Hi all! My 9 1/2 year old had plasma pheresis a week ago, she was in the midst of a really horrible episode. The good news is, thanks to the medical intervention, we are out of a total crisis. She does however still have a lot of healing to do. The rages and total depression are gone. A lot of the panic ocd is gone. She is left with separation anxiety, lots of general anxiety/ ocd ish thoughts, emotional lability. The other thing is this regressive behavior. When she got really bad, and was homebound, I noticed she played a lot more than she has in the past year and a half. She had been kind of growing out of lots of toys- and given most of them to her little sister. At the time, I was happy for the resurgence in play- because it kept her busy. Now though, I have to admit it is really bothering me (its the difference in her- from a really mature 4th grader with maturing interests, to a girl that is excited about stuff she hasn't cared about in 2 years). I know this seems petty, and I do not discourage her, as I only want to see her happy right now. But, she is in fourth grade, and she plays like a first grader. She is so excited over this new Polly Pocket toy she ordered.... Again, I am thanful for any happiness she has- but these dramatic changes are scary... So, I wondered if others have seen this? And, did it go away as their symptoms abated?

JAG10- I am totally with you. I find, that when my kids get better, I am oh so better. We are in the midst of pandas right now (with the second child afflicted with this disorder). I can say that a decent book is my only escape....need something to occupy the mind.

I agree with Vickie's advice. We did a steroid burst while on vacation last year. But, we did this because my dd was in a bad place, and not improving. We did have great luck with it- but she responds very well to immunosuppresive type therapy. There are SO many more challenges for these kids on vacation- so it is not a good time if you are using it as a diagnostic tool. For us, it has also worked as a treatment- but I think it is a good idea to reserve for a bad time then also- because you don't want your child on steroids frequently, and it does lower the immune system (so puts them at a little higher risk for illness, I think). I am sure Dr K will be very opinionated on what you should do- so don't drive yourself crazy before you meet him. He is also well aware of the ups and downs of pandas, so just enjoy the fact that your son is well. I am a big believer that it is important to have a pandas doc already in place, in case you really need them down the road. You are doing the right thing- trust in Dr K.

Pathfinder- Sorry you have to be here. My best advice to you is, if you really think pandas is a possibility, get to an experienced doctor asap. Can you get him to DC, New Jersey or Chicago? It really is not worth wasting time with a doc not familiar with treating pandas.....

I am really interested in the melatonin losenges. Does anyone use them for young children (mine are 6 and 9) I looked on amazon and the first thing it said was anyone with an autoimmune condition please consult a doctor first. Any thoughts? My little one slept until 10 am today (let her stay home from school).

Judith- My daughter always shows an uptick in symptoms (usually mood issues) when exposed to strep at school. Once she is away from the exposure (either the child is treated or dd is pulled out of school) the increase in symtoms typically resolve in a couple of days. This may be what you are seeing.....

I agree with most of the replies. If this working definition is to be published, I would agree that somewhere needs to be an exhaustive list of possible neuropsychiatric symptoms. Many doctors are not well versed on the ways ocd manifests. My major concern is the quick response to antibiotics. Unfortunately, I really don't think this should be used as a criteria. My younger- classic Swedo-type pandas, only responded to antibiotics after 30 days of daily zithromax (which followed about 30 days of amoxicillin). I don't think anyone would consider this rapid. After this initial episode, she had another episode which did not respond to antibiotics, but did respond to steriods and finally plasma pheresis. My second daughter had a milder onset at the same time, she went untreated for much longer. She did not respond to antibiotics, however did respond to steroids. I would hate to see a bunch of these kids turned away as pandas, if they don't respond quickly to antibiotics. If most of our kids did, this forum would not be so busy! Thanks Dr T!

Yes- Iowa Dawn- My nine year old initially manifested exactly as Dr K's adolescent variant. Nine months later, post H1N1, a more classical pandas hit

My dd did not have cyclical vomiting. She had daily (sometimes 3x day) stomach aches- but no other physical symptoms (throwing up, constipation, etc). For her, we think it might have been somewhat sensory/ anxiety with a dose of ocd. They are completely gone (fingers crossed) for now.

Don't know if it is a physical, ocd, or anxiety thing. My dd had daily stomach aches post strep for 9 mos. We did gi testing- came up with nothing. The stomach aches went away once we did full dose zithromax (counter intuitive right?) I wish I had seen this in black and white when we were pursuing only the GI route- waste of time...

LLM- I have been forbidden to say the G- word in Julia' room! He he he. (but, she is doing well- she now usually makes herself just get used to stuff).

That is awsome, and much appreciated!

I haven't read the out of sync child- but just want to comment (add confusion) on sensory issues: both of my dd's seem to manifest sensory issues in different ways. For both, the sensory issues started when pandas started. And for both, the sensory issues seemed to trigger, or be wrapped in ocd. DD, age 6, started with tags, socks, shoes, no jeans, only soft clothes, etc. Some stuff, I believe, really became uncomfortable. But, then her ocd focused on it, and she obsessed that nothing fit. Now that has calmed into more of a just right ocd, surrounding her sensory issues with clothes. I truly believe they are not comfortable- but then she also obsesses on it. DD, age 9, became over sensitized to activity in her tummy (her ped gave me this aha moment), therefore she complained of stomachaches, but this then was surrounded with the ocd of she was afraid to go out, afraid of getting sick, etc. I think she also became sensitized emotionally- and if anyone (me, dad, kids at school) say boo to her, she thinks they are being mean. I believe my kids have mild sensory issues, that are made much worse when their ocd focuses on it. Does this make sense? smarty- could your son be exhibiting signs of adhd? I know that can come with pandas, and could be the reason he can't sit still, etc. I think it is really good news that he is happy and enthusiastic at school. I would want to make sure you and the teacher can channel his energy, rather than squash it. So much depends on the teacher. I would explain to her that pandas can cause adhd, and you are exploring that, but that it should NOT be looked at or treated like a behavoir issue right now. She NEEDS to have the patience to work with him.... Is there a good counselor at the school, or do you see a therapist with him? Oh and btw, knowing you have been having issues- that is SO annoying that she waits to spring this on you at a conference. This is something where she should be communicating with you daily! (Just thinking, maybe you could start some sort of reward program for him, that you work in conjunction with the teacher, focusing on good behavoir?)

pandaschicago- Can you give me an idea of the success of your son's ivig? Did he have ocd or tics? How long did it take for healing? Did ALL of his symptoms resolve, or was he left with any residual issues?

How does the doc diagnose Myco P- blood test?

Dut- does the child have ANY symptoms? Is he quirky? shy? anxious? Really, you wouldn't do anything if there are no symptoms.... but, you could have a consult with your pandas treating doc. I would get a doc on board to prescribe antibiotics and a steroid burst (as long as no tics) immediately, if you see him have an issue post illness in the future.

Just want to add a little: Remission or cure- I think that IVIG and maybe pex have the potential (but I am not totally convinced) to "reset" the child and immune system back to where they were prior to triggering strep episode. To me that would be enough of a cure to warrant the risk. I think the prophylaxis is separate- because if there is a genetic vulnerability- there is probably no cure to that, and pandas could potentially (but not necessarily) be triggered with a future strep. My question is are the kids really reset with ivig? My dd had pex- and initially she was 110%. She got the flu, which caused a relapse that we "managed" with steroids. She is now holding at 95%. She does hit minor bumps for a couple of days when exposed to strep. Will she continue to improve over the next year, so that I can finally say she is 100%? Would she get to 100% with IVIG? I am not sure. Where are the parents whose kids are 100%? I mean, we are thrilled with Julia's progress, and she is happy as a clam- but I would have to be up front to other parents and say: some of that darn ocd was sticky... She hasn't developed any new ocd issues, but a few of the ones she had, are still annoying to her. This may become clearer to me with my older dd. She was absolutely NOT hit with pandas until she was 8 1/2. So much of her (former) personality was the opposite of pandas junk. She just had pex. Since I had so long with her healthy, I will really be able to see what lingers post pex. Since she is the older one- if we feel she is not where we want (or headed there), we will seek ivig with her. I agree with you, Alex. It is really impossible, as a parent, to sit by and not let them live to their potential. Life is hard, anyway, they don't need ocd, and anxiety to make it more difficult for them. PLEASE- keep me posted on how your son is doing post ivig (I really hope you can be thrilled with the results, and are able to relax and live with less worry)- we may be there in 6 months if we are not happy on the progress she makes...

I am also wanting to hear from those who have had IVIG, and are truly 100%. Are they here?

Susan- Have you read the book cover to cover by yourself? I think it takes a while, as a parent, to see where it is going. I loved the tools it teaches for when ocd comes up ie: delay, give it a limit, do the opposite, etc. This gives you ACTUAL concepts to discuss with your daughter before, during and after and ocd issue comes up. SHE can choose the tool that she is most comfortable dealing with first. Give it a limit was a huge help for some of our issues with older daughter. Younger daughter and I are still working daily on a residual ocd issue she has. At one point (when I was getting a little zealous) she had to even hold me back, by saying "But Mom, doesn't the book say to start with the easiest one (obsession) first, and then work up to the harder ones?" "Why yes, dear!" She is six

Debbie- The other thing I have considered for my little one- is another steroid burst once the summer arrives. I was set on doing that as of last month- now however, I am in a very cautious mood. Not wanting to mess with the relative peace she is in now. I also think- it takes the brain about a year to heal, so maybe it is possible that you will continue to see small improvements as time goes on.