dcmom

Chantal- You have been on a long journey with your son, and it sounds like you are an amazing mom- always there for him and keeping things in perspective! I think there are some on this board who have had kids that have maybe had PANDAS since VERY young- so hopefully they will chime in. My daughter's both had overnight onset at elementary school age, but with both, in retrospect, I DO think there was a mild onset prior to their debilitating onset. SO- the main thing to know with pandas is THERE IS NO BLACK AND WHITE, it is all shades of gray. Where do you live? My suggestions would be to get to a good doc ( if you could get to Maryland, Chicago, NJ or CT- that would be great). I would certainly suggest a thorough screening including: total immune panel, thyroid, Ingenex lyme test, maybe ASO and Anti Dnase- if you haven't had these done. I would also suggest your son do a researcher's blood test- which many of us have done, which tests for pandas (it is not definative- but the best tool we have now). This will give you a starting point (especially Cunningham's test). If these things seem AT ALL to point to pandas- I would get IMMEDIATELY to a pandas doc (Dr K, Dr L ) without wasting your time with anyone else. I think, the good news would be, that if he does have pandas, you should be able to get some relief.... Hang in there....

Mati's mom- I agree with Meg's mom.... We had this same situation with our 9 yr old. I was afraid to tell her we were concerned she might have pandas, after her sister had such a debilitating and dramatic onset. I DID however tell her, and just explained that there are many types of pandas: some very mild, and some more severe, and that we thought she might have the very mild version. She REALLY accepted that fine, and was relieved that we were adressing her issues- we found out that she was hiding a few ocd issues that we didn't know about. So in a way, it can be helpful to be honest (but very tactful). Good luck- two is twice as hard..

We struggle with this as well- and really pared down any afterschool activities since pandas hit- even errands, dr appts etc. I have also adjusted my expectations/priority around school. We do minimal afterschool activities- maybe one thing at a time. But, for me, for my kids, those activities are just as important right now as school. They need to be able to have other interests in my opinion. So for example- one does piano, one horseback riding. The older one, piano, she can handle her homework no problem. The younger one has a hard time being rushed- so if horseback riding (which is 1.5 hrs BTW) night is a tough one- we don't do homework that night, and make it up later in the week, if we can. We do swimming lessons during the summer. I try to do one playdate per week, on Fridays. I just try to be so careful about scheduling- and I do think it helps

Thanks everyone for the advice- need to re read and digest it. We are not in the total meltdown and rage stage. Thankfully, that seems to be behind us for a little while. During the worst, I let everything go- it was all I could do to get her to eat, sleep and not hide under her desk all day. As she gets better, I think I have to keep my expectations in check a little. So as far as asking her to clean up her stuff, I think I will pull back until school is over. I am thinking of treating it like ERP- and starting both kids with small responsibilities and rewards, and working up. Hopefull if they remain healthy, by the end of the summer we will have some good basic routines in place. Although she is doing great- and thankfully homework is easy for her- I think there is still a lot of anxiety and ptsd that she holds inside. Smarty- I am interested, and may get that book. We had the same issue this morning as you. So just some background- I know this is pandas. Caroline, as I said was always my rock. I could reason with her from about age 1. She NEVER had meltdowns, fits, ANYTHING. We were blessed, she was so easy (not a doormat in any sense- but just really smart, and reasonable). Here is a perfect example: this morning she gets dressed in a cute summery outfit. We are ready to walk out the door, and she decides it is too cold. Well, she also lost her North Face jacket a couple weeks ago. I wasn't too worried, as it HAD been looking like summer was close. Well now it is cold, and she only has a sweater. So she starts getting upset ( short tempered I guess you would say), and says she is not going to school until she finds a warm jacket (she doesn't have one). My typical MO is to stay relatively calm, try to help her solve the problem (wear this, try that, it won't be that cold, etc). I finally got tough and ordered her to go. That did work, but I also got some snide comments (can't remember exactly, maybe she called me mean and snotty). Sigh. So- I could have been trying repeating. She says "I am not going to school unless I find my jacket?" Me, "You are not going to school unless you find your jacket?", etc. As soon as I see she is going into a tizzy, stop offering solutions, orders, and just repeat? I will try it. I wonder if she will think I have lost it? Later today, I will have a talk with her about what happened. It is so sad, it must be so weird for her- as she NEVER was a kid with meltdown or temper issues, she is 9, so she kinda knows the difference in herself.

Hi everyone. The girls continue to improve. We have one lingering issue (well a few, actually- but this is the most troublesome right now) with dd, age 9. She was always my "easy" kid, my rock. She was always responsible, respectful, helpful, etc. So- I know what we have here is thanks to pandas. I just don't know what it is, or what to do about it. She is difficult. If she is told "no" to something (you can't have ice cream right before dinner, I won't carry your backpack, etc) , or asked to do something (tidy her desk, pick up your clothes, etc) she will have a "fit". Luckily, most of the day is smooth- she goes to school, does her homework, practices piano, etc, nicely and independently. But about once a day, we come to one of these issues and she just lashes out. She will get angry, yell, talk back and be really disrespectful. If we don't REALLY diffuse the situation (usually by almost giving in- some sort of compromise) it will really escalate. I can't seem to find a pattern (time of day, certain issue), and do not always see another stressor going on at the time. Is it regressive behavoir? Is it stress overload from dealing with the anxiety/ocd (which is improving- but not gone)? How do we handle it? I feel like she just has to get her way (or almost get her way) or the whole day will be ruined because she will have a fit, take a long time to calm down, then be moody or depressed, etc. Thanks for any insight! BTW: since pex it has seemed like she is on a constant trend of improvement, but maybe along the way we have seen mini explosions of past behavoirs. I am hoping maybe that is what we are seeing here, and it will calm down in the next couple of weeks...anyone have an experience like this?

Faith- that is too good for words

Andrea- My daughter reacts to strep in the classroom. Usually, once the exposure is over (kid is diagnosed and absent/treated), she will be back to baseline after a couple of days. I do have to say, that she had a really rough winter with nonstop, heavy exposure at school. Her irritibility, and ocd ramped up (not like an exacerbation, but definately and uptick) and just would not go away. This lasted a few weeks, and then we put her on a steroid burst- and that has calmed everything down. Good luck! I hate strep! DON"T even mention sore or scratchy throat around me- or I completely panic

Thanks EA mom! We promised the girls a puppy this summer- so it is nice to see that research. I think animals are SO important for our kids. Pet therapy!

Hi Sadie- Just wanted to chime in. We are all married to the same men! My dh is also really supportive, he believes in pandas, doesn't care how many doctors I take them to, etc. BUT- I do all of the research, if I print it out, he doesn't read it, if I get a book on ocd and leave it for him, he doesn't read it. But then, when I act like I know the better way to handle some ocd issues- he balks like why do I know better. He gets annoyed that I am on the forum all of the time. He gets annoyed that I am worried, or want to talk about pandas a lot. He doesn't have enough patience with the kids. This has all been very isolating for me (although, I am so lucky, my Mom has been a rock for me)- and tough on our marraige. But- when my older dd was severely going down hill, and we were battling the insurance company- I have to say dh really stepped up. He took the week off of work, handled dd really well, and fought with the insurance company on the phone everyday. So- I guess what I am trying to say, it seems for many couples, one is the researcher, the advocate, the worrier. The spouse may have a different personality type. And this can be hard on that person. But your dh is there, he loves his boys, and when you REALLY need him- I bet will be there.

Ditto the above, and I make sure I make a list of questions... I do not leave the office without all of the prescriptions I need, answers I need, and the game plan, until the next time I can see her...

Enjoy your kiddos! And do something for yourself

tpotter- I have heard of two type of bursts. Dr L gave my girls a month long tapered burst. They both did 20 mg/day for a week, 10 mg/day for a week, 5 mg day for a week, and then 5 mg every other day for a week. My girls weigh 40 and 60 lbs. Dr K, I believe does a 5 day burst at a much higher dosage per day. No tapering. I believe, steroids must be tapered if you do them for more than 5 (but it could be 7) days. Hopefully a more knowledgeable parent, or one with bigger kids, will chime in. Maybe you could ask the doc for a month long tapering burst?

Titers ARE NOT a test for pandas. The only thing they indicate- AND ONLY IN 30% of cases- is a recent strep infection. I don't allow titers to be done, most pandas docs are NOT hung up on titers. You need to treat the symptoms. PANDAS is a CLINICAL DIAGNOSIS. If your child is having symptoms, they need treatment (abx, steroids, ivig, etc). Once strep activates pandas, it becomes an autoimmune condition, and many kids will have an episode triggered by strep, illnesses OTHER than strep, exposure to strep, exposure to illnesses OTHER than strep, dental work/issues, allergies, vaccines, and basically anything that engages the child's immune system. During healing, there will be blips due to exposure. If the exposure is prolonged, and the blip does not settle down, it is time to treat. I would STRONGLY advise a pandas expert...

Hi everyone- I just want to add another point of view for those who might be reading this thread.... I have always really limited my girls tv time since they were young, and we have no video games. Maybe because of this, or probably because of personality type, they are not that interested in tv. We don't even need rules, really, as they may watch one tv show per week. BUT, during both of their most severe points of exacerbation, TV was a lifesaver. It was something where they could sit still, and forget about their thoughts or worries, actually eat, and sort of even be together. It did not seem to worsen anything for them, and I could actually get a few things done, or just get my head together. I did mostly movies with them (I liked the over 1 hour amount of time). Once they were getting better healthwise- they lost interest in the tv again....

Fixit- I am right there with you. My only answer is that the Cunningham test is a study- we have no conclusion yet. I have 2 daughters. Both had strep last March. One had major, overnight, debilitating ocd onset. The other had mild, but overnight onset of anxiety and stomachaches. Finally tested both Cam Kinase in early August. The one that had debilitating onset was around 160ish. The other was 106ish (which threw us off of pandas for her for a couple months.) BOTH had very high anti neural antibodies (from Cunningham). Second daughter ended up becoming debilitated with ocd (pandas) after the flu (H1N1) and has responded very well to pandas treatment. SO- does this mean cam kinase is NOT a great indicator, or does it mean when my dd was tested, she just was not so bad off. We haven't tested either again, and probably wont for a while(due to financial expense). I think the test needs to be taken as one piece in the puzzle of a clinical diagnosis.

My girls both had plasma pheresis done at Georgetown University this year. Are they really the only hospital doing pex for pandas? Has anyone had (or heard of) pex being done for pandas anywhere else (in the us)? And if so, do you know the treating doc? thanks.

This is tough. I would also consider the reason in my response- is it rational, or more defiance/refusal? My 9 yr old gripes, but is pretty compliant when she knows the doctor has prescribed the med. My 6 yr old is tougher- but still small, so I have more power. I do take a REALLY tough stance on the meds I have to say. I will give them a break from supplements here and there if they gripe a lot, but I take a very hard line on the antibiotics and steroids (when on them). I don't really give them an option- when they sense that, they seem to cooperate. If they were really being difficult- I would get them to the doc, so the doc could have a word with them (we never had to go that far). That being said- each time they take their med- they get a "treat"- like a rolo or a hershey's kiss.....

I am a 100% advocate for treating pandas, medically, first and foremost. But- our psychologist has been a great resource for me and my girls. If your son is not seeing a psychologist- you may want to consider one to help discuss coping strategies for the anxiety, and other pandas symptoms.

peg- I just saw the same thing when I voted- could this be correct?

Just to add, agreeing with simply gina's post... We have had irritibility, from MAJOR to milder. It REALLY depends on the status of her pandas. When she is healthy we see a really happy easygoing kid- when she is having an uptick in symptoms this carefree attitude disappears sleep healthy food and lots of healthy snacks routine not overbooking our days me maintaining my calm lots of down time, playing, watching a movie, reading artwork horseback riding limiting chores and homework on school days (too much is too much) I have REALLY had to change the way I organize our days. We don't do stuff last minute, or on the run. I let homework go in favor of playing outside, or watching a movie if needed. A more healthful, calm, organized way of life helped us get through the rougher (not the roughest) times. Had to take a step back from the extremely active, overbooked life we enjoyed prior to pandas. Limit late nights and exposure to illness if at all possible.

MomMD, We had the SAME thing happen with pex- but it was in the end covered. We ended up going through three levels of appeals. We enlisted the help of the HR person at husband's company who dealt with the insurance company. I called the insurance co every day. And we had our doctor send some studies, and write a letter along with medical records that stated that the insurance company was putting our daughter's health in jeopardy by delaying treatment. They took their own sweet time, and went through their slow as molasses process. But we were approved. I hope this is what happens for you....

YES! We get irritibility. For my younger dd it is her tell tale first to appear and last to go away symptom. She also gets irritible as her main symptom when exposed to strep. We have had good success with a steroid burst- don't know where you stand on that...

Hi Pat, I am so sorry to hear about the long struggle you have been through. There are many parents more qualified to talk to you about dealing with pandas in an older child- but I wanted you to get some response quickly. My dd's both were diagnosed with pandas this year, after an overnight onset. We have been very fortunate to work with a great pandas doc, and get immediate medical intervention. Even though we caught this right away, antibiotics were not enough. My biggest advice to you would be to do whatever you can to get with a pandas doc (dr K, or dr L). My children also had rages and some agression, which subsided immediately with serious medical intervention. (they had plasma pheresis). I am sure others will chime in. You have come to the right place for support in your efforts to get your child well.

I have a few things to add.... First- my dh and I always have the disagreement that you are having about behavioral vs pandas. While I certainly agree you must have some expectations regarding behavoir, and try to calmly give the more reasonable way to think about things- I always think when my kids are really healthy- I never have these type of meltdowns..... My dd has A LOT of just right ocd. For her it is more about her stuff, doing things a particular way, etc.... We do get the meltdowns around stuff that I don't really think is ocd- I hope someone can more eloquently state this analagy that I have heard her before (been wanting to share with dh)- it is something like our kids are like a glass of water, all day they have frustrations and stress (due to ocd) , this is more water being added to the glass. By the time they get home from school, their glass is full- so if one more thing goes wrong it spills over into a meltdown.

Hi there- I am so sorry about the strep again, it is rampant from age 5 to 10. Have you considered prophylactic antibiotics, if only during the worst months in school. He has a lot of years and strep exposure to go. I don't know if this will ease your mind or not- but- with my dd I also worried about her behavior and academic issues, but we did find, when she was "healthy" ALL of her issues resolved. It takes treatment, and then it takes time to heal- but EVERYTHING improved. So I would think your son still needs time to heal. I would HIGHLY recommend working with a pandas doctor.