dcmom

My suggestion, based on my daughter's experience with the flu, is that you let the virus run it's course. (hopefully the body is strong enough to fight it off) Once the child is over the virus, I would consider a steroid burst immediately to help with the pandas symptoms. Maybe if you get it soon enough, it is enough to damp down the immune system from producing the autoantibodies. I would also increase, or add daily antibiotics at that point to help with immune modulation and reduced immunity. EBV must be tough, because I know in a healthy child it takes something like 3 weeks. So- I think we all need to know if our children are immune deficient.

Debbie- I do just want to add that there are no guarantees. Before dd, 9, went for pex, I was in a panic, and felt if she was not 100% then we would go for IVIG. Then I started thinking, with pandas, one has to be really cautious about everything you do. My little one sounds like your daughter. Doing great, with some minor pesky ocd, that doesn't affect her participation in life, or happiness. I could never justify the risks of ivig right now- not only because of the donor issue, but because of the possibility of stirring up the pandas. I do think lots of the IVIG kids also have some residual issues- so it may be really hard to get them completely back to where they were before pandas.

Thanks Dr T- that is reassuring. Debbie- I know where you are coming from. I do think Dr K knows his stuff- just from reading his right on pandas symptoms descriptions. I also have a 9.5 year old daughter with pandas. We just did plasma pheresis on her last week. I am hoping to keep pandas in remission without the exposure to ivig- however if I really think IVIG is the only way- we will do it- I wouldn't want to sentence any child to living with pandas. I have that constantly nagging me- the puberty issue. Pandas actually hit my younger one harder first, and she had plasma pheresis. I have been so grateful that puberty is way off for her. We have the luxury of time. Please keep me posted on what you find out! Eileen

Susan- I think the workbook will really help you and your daughter handle issues. Meg's mom has given me so much direction with the ocd. I have realized I had to change my parenting decisions in what to accomodate, and when to be tough. I do try to anticipate, but not to avoid the situation (like I used to), but to maintain calm and help her anticipate her stress, and come up with ways to deal with it. I have to say my little one is so strong and creative, she will make up a compulsion, and get through anything. The older one uses avoidance more- which is a bit harder to tackle. A funny note- they BOTH now have bathing/showering issues. It is that they don't like the feel when they get out of the tub, until they are completely dry. (This was NEVER an issue before pandas). The older one avoided bathing for a month- she is now back to it and doing well. The younger one came up with a complicated routine of getting dry. I was telling my dad about this, and he (as I might have done before learning about ocd) suggested getting a small heater for the bathroom because maybe they are cold. I had to give him a quick ocd "lesson", that I would be enabling their compulsions. I said in this case, they just have to "get used to it" (guti- a term we use a lot). So in that sense, I am learning to be tougher on not making everything better for them. On the other hand, I have learned to let go (a little bit) of always being on time for stuff, always getting all the homework done, beds being made in the morning, etc. It is just that they need different boundaries than they used to.

Suzan, We totally get this kind of thing when there is strep in the class. Last week I actually kept her home the entire week because 5 kids in her class had strep. It was the best decision- she was happy and healthy all week, and we did the school work at home. She went back today, and I am crossing my fingers that most of the strep has run it's course. This is my plan for the future, for both girls, until they are less reactive. I understand that it is not always feasible to do this, though. If she is reacting to strep, and you can't keep her home- I would try for some accomodations until it passes: no homework, and arriving at school late. Tamar Chansky talks about these accomodations specifically for pandas in one of her books (if you need something to back you up with the school). I think during exposure, the less stress, and the more r&r, the best. Good luck- it is so hard!

I do want to add one thing here. We had/have major morning problems when my dd is in an episode. When she is healthy, we really don't. While I agree you should address this psychologically at the time- you definately want to look into the medical cause behind this. Now, whenever we have a bad morning, I am pretty much gauranteed that someone in the class has strep.

I feel for you- as I am on the edge as well. In fact, I am supposed to be taking a break from the forum- but haven't started yet I think you have to go with your gut. What, down deep, do you believe? Then go to the doc that agrees with you, and pursue that course to the end. While at the same time, keeping an open mind. In other words- you have to do the impossible. If you think it is pandas- do you remember a time when your kid was not like this? Were there strep or illness triggers? You have had it suggested by a couple docs. If you think it is pandas- then maybe you need to get to Dr K. Do IVIG. Hope it works. I think Dr L didn't think it was pandas. Why was that? Do you agree? Did you pursue her suggestions? I am sorry- I am feeling wornout these days too.

Susan- I haven't read the book- looks like something I should get. However my younger dd had MAJOR clothing and morning issues with pandas episodes. We tried to avoid issues by: laying out clothing and packing backpack the night before. That really helped. I, at some point, let go of my "you have to be there on time" issue. If she was having ocd issues, and it didn't look like they were wrapping up to get there in time, I would just tell her that she'd either have to deal with it, or be late (it didn't matter to me- and I didn't make it a success or failure- or stressor). Sometimes she would just deal and go on time, others she would arrive at school 1/2 hour late. In the end I would praise her for getting through it. She was late often during her episodes, but when not in an episode is only late maybe once every three weeks or month. The hardest step for me, was to let go of the fact that if she was 1/2 hour late, it really mattered. Once I let go of that, my stress level was much better, which helped her stay calmer. Good luck!

What are your son's gastro issues? I only ask, because the start of my daughter's pandas was abdominal pain. She had no other physical symptoms of gastro issues (she was regular, normal stool, etc.) The gastro thought it might be IBS (we did lots of tests with him). It turned out to be pandas/anxiety and resolved with antibiotics. This of course is not the case for all.

Hi everyone! Thank you for your help! Luckily, the insurance company has overturned the denial of BOTH of my daughter's pex treatments! We are home from the hospital. It was a stressful week- but not as bad as the few weeks prior when dd was doing really badly. She is relieved to be home, and we are trying to be patient in our expectations for results. I will keep the forum updated.

Ditto to the potter stuff- now we are on to The Ranger's Apprentice and mythology- not as obsessive about it though:)

We are in the hospital now. We ended up going self pay ( which sucks), but we are still appealing with the insurance company. Apparently they look at whether other companies cover procedure as part of the appeal. I am providing some of this info as a courtesy

Hi Gina The zest for life is what I miss SO much for my 9 yr old dd. What you describe is so similar: withdrawl from activities, waning interest in school and friends, food issues. We found that below the surface the issues are really OCD and anxiety. She also has become mildly obsessed eith a couple book series (Harry potter is one)- I think for her it is an escape, something to keep her mind busy. It took both of my kids 30 days of antibiotics to really see a response, and for both we ended up needing more aggressive forms of treatment.

Is it possible he is reacting to strep exposure?

We are having insurance issues.... My dd is having pex now, and our insurance has denied it. It is being reviewed by a third party. They look to see if there are other insurance co that pay for this. Those who have had pex, if you don't mind pming me the name of your insurance- I would love to give them a nice list. Btw we have UHC, and I hate them, now.

pixiesmommy- uugghh! I am so sorry. My daughter had the flu (H1N1 probably) after she was doing so great post-pex. Once her fever subsided, 24 hours later she started into an episode. It was clear it wasn't a mild flare, she spiraled down over 2.5 days. At that point we started a month long steroid burst. It stopped her exacerbation, and brought her back. She has remained great for 4 mos. It was a bump in the road. I know Dr K only used steroid bursts for diagnostics (I think)- but if steroids have worked for pixie in the past, you may want to consider..... Will be thinking of you...

It was on the Diane Rehm show- you can get a podcast on www.WAMU.org. She is my favorite host- but I missed the show as I have my girls home today.

We need a good immunologist here. I would imagine the immune system gets primed and ready to go when it encounters illness- but I am not a doc, I don't know. My dd, Julia, has had small 3-4 day flares in pandas when she has been exposed to strep and lost a baby tooth. Her sister had a bad episode (that she is still in) after a bad cold. Antibiotics (for many) do not cure pandas. Nor do they necessarily stop an episode or a flare. What they do is hopefully prevent strep, and maybe help modulate the immune system, so flares are milder and shorter. I need Immune 101- what and how do things engage the immune system....

smartyjones- I totally understand your thought process. I really think PANDAS is an autoimmune disorder that has been turned on in our kids. They will now, with immune challenges, have flare ups of pandas. I think it stinks, but I continue to think and hope it is manageable (would be more so with the help of the medical community at large). I really think, for most of our kids, this is the case. Certainly (there was a study on this), the more tests you do, the more you will find. Certainly we can search (even if only philosophically) for the underlying cause of pandas. But, like all autoimmune illnesses, there are ups and downs, long term remissions, and difficult flare ups. Of course, some may have co morbid conditions. If a pandas kid has chronic lyme, I would guess that means his/her immune system is constantly challenged, therefore chronic pandas. If your child has a flare up with an illness, I do not think this means there is strep, or some other "suspect" than what we see on the surface. I don't know that I am right- of course. This is just what I think. My kids were 100% perfect until pandas hit (our life was easy)- so I guess I have a hard time believing/accepting that now it is suggested they have a whole host of issues. I am looking forward to the input of others here, as well....

I am afraid that I agree with you- wornoutmom. I think all parents should be encouraged to fight pandas as quickly and aggressively as possible. I don't believe there is any solid evidence, nor has much follow up been done on the effects of puberty. Frankly- someone gave me the " we think they grow out of it at puberty" thing when my dd had her first onset at age 5. Thank you, but no thank you- I do not want to wish my kids' childhoods away!!!

for us it was different every time: DD, 6, first burst, improvement seen on 4th day 95%, lasted entire burst (4 week prescription), went downhill after (know exposure to strep) DD, 6, second burst (post pex- after the flu), stabilization seen on first day, major improvement within 2 days 95%, she has been good for 4 mos Doctor said she reacts unusually fast. DD, 9, first burst, improvement not seen untill at least two weeks in 95%, lasted until she came down with a cold 1 week after burst was over DD, 9, second burst, immediately after first burst- because of regression with cold, no noticeable improvement, in hindsight, maybe it stabilized her for the duration of the burst, because once the steroids were over she nosedived. Awaiting pex. All of their bursts were 1 week 20 mg daily, 1 week 10 mg daily, then 2 weeks of 5 mg every other day. They weigh about 40 and 50 lbs. Maybe the little one reacted quicker since she is much smaller and on same dosage? I don't know.

kcdc3- Both of my daughters have done steroid bursts twice. Each of them had a worsening of symptoms after the burst was over 50% of the time. The younger one, was exposed to strep the week the burst was over- we attributed her worsening to that. The older one had a surge of symptoms after a cold, we did a burst then, mild improvement (or so we thought at the time), then when the burst was over she dropped off a cliff. It is really hard to know what affects these things. I think where in the exacerbation they have the burst, may play a part in how they do after (maybe the best times are very beginning, or toward the end?). My younger one got a burst within the first few days of exacerbation after the flu- and it really stopped it, and she stayed improved. The other 3 bursts my girls did, the effects were temporary. (We have ocd, no tics)

Kayanne- that stinks that your other kids got strep! The one benefit of having all kids in the houshold be pandas, is having them all on antibiotics- I guess. Julia has a three day weekend- and is doing well- so I will probably send her back on Tuesday. It is a tough call, she hates to miss school, and of course- I hate her to miss, as when she gets out of the habit of going to school, I feel that could be trouble. I guess I try to use her behavoir as a guide- but I am always over scrutinizing and second guessing! I will tell you, I get nervous when she has an uptick due to exposure. But, when she was relapsing after the flu- it was very different. We waited about 3 days (to be sure) to start the steroid. Each day was significantly worse. First day: totally irritable all day, Second day: irritable, separation anxiety, some ocd, Third day: extreme separation issues, zombie like look and mode, extremely pale and sickly looking, tons of anxiety. The good news is, the first dose of steroids stopped the downward spiral, and by about the fourth dose she was 90%. It was an unbelievable turn around. My older one, has had a pretty big exacerbation due to a cold You never know what is going to get them. How are things with Rebecca now?

faith- You may never find the strep link- which stinks. Have you done the Cunningham test? I think that would be really helpful for you to see what is going on. It is not an absolute- but it is helpful to see... If pandas is an autoimmune issue- so many things can be triggers, I guess depending on how sensitive the child is. Do your kids have tics or ocd- or both? If ocd- I wouldn't think twice- I would do the steroid burst. It is so helpful to see the improvement it may bring. If there are tics involved, the cunningham test may ease your mind (if positive for pandas) about trying the burst. Wish I could help you. Pandas is so frustrating! I am the type of person that wants anwers, and absolutes (esp where my kids are concerned). I can only say, that, in our case, in my gut- I feel like we have eradicated infection (of course I have tons of moments of doubts). I think this is as simple as an autoimmune disorder has been turned on in my kids (which sucks). They create these autoantibodies, and I guess like other autoimmune issues (which I think I should start studying) there are many known triggers, and probably lots of unknown triggers. My kids suffering did not stop on antibiotics alone. I hope this doesn't seem depressing (I am in a bit of a bad spot right now), because I am hopeful that this disorder can be successfully managed. Unfortunately health insurance, financial issues, and some doctors stand in our way. You will find the correct path for your kids....

I am certainly not a doctor, but will just say a few things based on my experience: antibiotics are needed (full strength at least initially, to rid the infection) antibiotics are helpful to prevent future illness (though certainly not 100%) there is also thought to be an immune modulating effect of antibiotics BUT: antibiotics are not always enough to calm the autoimmune aspect, and quell the brain inflammation this is why we are all here- really. If antibiotics did the trick, it would be oh so easy. For my dd,6, antibiotics worked on her first episode! They were not enough to calm her relapses. For dd, 9, who has had this longer- the antibiotics calmed things, maybe, but not enough. You certainly could try a different antibiotic, or two antibiotics at a time. You certainly should look for infection if that is what you feel. However, I will tell you, my daughter looked fairly healthy when she had the flu. The day after she recovered, at the start of a pandas relapse- she looked HORRIBLE; pale, dark circles, in a daze. She started steroids after a couple of days of this, and within a couple of doses- she looked healthy again I believe pandas episodes, alone, can make your child appear ill. The next step is steroids. Then IVIG or PEX. The cunningham test is a really good idea!