dcmom

I will try to reply more in the AM. But- my biggest suggestion is that you need medical and psychological help. We had these type of issues also, it is not easy. Antibiotics and steroids were a lifesaver for my girls. With the help of a psychologist, we worked on a plan (with LOTS of rewards) to get dressed, bathe, etc. Teeth are a huge concern of mine, I admit I did a few forced brushings. Dental work can cause pandas to flare in some- so that was non negotiable for me.

Jag I so agree with you about time for healing. There is another thread about stuttering- when I saw it I said to dh- remember J used to stutter? She doesn't do that anymore! That was one of her minor, lingering symptoms- we didn't do anything about it, and we didn't even notice it BUT IT IS GONE

Hi Dan- If only we had a crystal ball.... We will not get any more vaccines. I would suggest to a family with one pandas child, to be very careful about vaccines for any of their other children (especially younger). Just look at the incidence in siblings thread. I have two pandas kids- as do quite a few of us. Some have seen vaccinations contribute to exacerbations and maybe even initial onset. I would err on the side of caution. My dd did get H1N1 last year within a month of PEX (worst nightmare-right?). She did start to spiral down into a pandas episode, but it was completely turned around with a steroid burst. So instead of vaccines, I would get a 30 day steroid taper (if your dd has responded well to steroids prior) Rx, and keep it in your cabinet if it is needed.

Hi- It seems like I have been here forever, even though it has been less than 2 years. There are so many new faces It always breaks my heart a little when I see another family suffering. That being said- unfortunately, for most, antibiotics are not a quick fix for pandas. If that were the case, there would be no need for this forum. My girls were initially (first episode- diagnosed fairly quickly) helped by antibiotics- but not a normal course- over 30 days of daily zithromax. Both of them initially remitted with this Tx. However for each, a subsequent episode was not helped by antibiotics. It took steroids and plasma pheresis. I think it may not be a factor of how long they have been sick (I do agree with Mom that some behaviors are sticky), but that lots of kids are not immediately responsive to antibiotics. Some kids respond to abx quickly, others have taken up to a year, some respond to ivig, others need multiple ivigs, etc. THis is the hardest part about pandas- figuring out what works for your kid (finding a doc willing to do that), and then being flexible enough to try something else if that stops working. This has become all about management for me. When they are good- I leave it alone. If something flares up, we increase the abx, add motrin, and do steroids if needed, if we enter crisis we try to get some serious intervention. Another thing that we don't often mention, but I think most of us agree on, is time. Time is a factor in the healing equation that I don't think can be removed. My kids had fairly agressive treatment, but it still is taking time to heal. (that being said- if the general trend is not positive, I don't think you have found your answer).

Thanks for the replies everyone. I have been doing a lot of thinking about this. Norcal mom- thanks for your reply. It was a bit of a reality check. You are right, why would I push to have dd in honors- when we are not even a year out from pandas. I was back on that train, that if you are not excelling now- your college career is ruined- the typical well to do suburban attitude. I got off of that train when pandas hit- and have no interest in being suckered back in. So- I am meeting with older dd's guidance counselor and younger dd's teacher next week. They know about pandas, but I am going to give them more info- and include academic issues. I am going to ask for help determining if any other academic areas have been affected (through teacher input). I have been doing research on dysgraphia- which thankfully Dr L wrote about in my kids school letters. I had thought it only referred to handwriting, but it is a lot more than that. Spelling is included. So I plan to make sure neither child is pushed, or penalized regarding spelling and writing. We are in a healing and being happy to be in school year. If things go well, I can work on getting a program together for the summer to work on the spelling and handwriting. It is a good thing, to be worrying about spelling, rather than worrying about whether they will ever be able to attend school again But, it is still hard, and a constant reminder of what pandas takes from our babies! I still have some work to do on acceptance that this even happened, it has been a hellish and non stop year and a half. But- it has changed me as a parent- and I need to remember to stick to my new priorities for my kids.

We have had school refusal during exacerbation for both daughters. We made different decisions for each- and if I had to do over, would do the same. Younger dd, in K and 1st at the time, had VERY hard mornings, and a VERY hard time seperating. We accomodated a lot of stuff, but MADE her attend school because she enjoyed it and did well once she was there. We accomodated the morning routing by only requiring the minimum at home (let go of mathcing outfits, brushing teeth and hair, etc). All she had to do was eat breakfast and get dressed, if she did this, as we left the house, she got a small prize. I walked her in to class, and waited to leave until she put away her stuff, one of her friends and the teacher came, and we did a nice hug. If it was a particularly hard morning, I would offer to come see her at recess, and if she wanted to come home then she could. This worked well with her, because it got her to stay, and she loved recess (and school) so she never wanted to come home (plus I was available to do this). This was a suggestion from our psychologist, and it saved our year! Her biggest problem was in the separating from me. My older dd got pandas the following year. Joy. She started with major school refusal (among other issues). We initially forced her to go- but one day I was in the classroom- and saw a different child. My former outgoing, happy, school loving kid, sat there stiff, pale, quiet, non social, and staring out the window. I could see this was not in her best interest at all. We made the decision to keep her home after that- while awaiting PEX. She did better in the comfort of her own home, and when she was "healthier" post pex, actually begged me to let her back to school sooner- and went back with NO issue, and picked right up where she was pre pandas (socially and academically). I think it would be helpful to determine if once your daughter gets to school- if things are good for her. IF that is the case- I would force it as much as reasonable possible- and reward attendance of course. If she is all out miserable while in school- you may want to look at your options.

Hi everyone! Thankfully, my daughters (age 10 and 7) continue to do really well post pex. This is not to say, however, that they are 100%. As school has started, I am really thinking I may need to do IEPs for them. There are not many issues, but who has a chrystal ball? So, firstly, my main concern is actually my dd who just started middle school. We have also moved so we are in a new district. The school seems to have a fairly strict absence, late and homework policy (like many middle schools). This scares me a bit. While I am planning to really push her to school every day (school refusal was part of the last exacerbation)- I like to have the option to pull her out if there is a lot of illness, sometimes if she has a minor uptick in symptoms and is exhausted, etc. I hate to have to get a note from the ped (meaning a trip to the germ filled office) every time. I also have liked to have the option (although she usually hates to go in late) to send her late if I feel it is needed for her health. Basically- she does really well at school- but my number 1 concern is her physical and mental health- and I don't want to be stressed if I need to make a decision about keeping her home. Both the school nurse, and the guidance counselor did not seem to know if an IEP would cover absences and lates- who do I need to talk to- I guess the principal? Ok- the next item. DD has always been an incredible student- school has always been too easy, no challenge. She has excelled in spelling, and even had a couple teachers make up harder lists for her (and a couple other students) than the rest of the class. When pandas hit, she continued to do well in school- and frankly, I didn't pay much attention to school work because we were dealing with so much other stuff, and the teachers said things were great. As things improved, the very end of last year, I did notice she wrote sloppily, mis spelled a ton of words, and had forgotten a lot of her multiplication tables. Her grasp of concepts (math and language), her vocabulary, her reading, etc were not affected at all. Just these (somewhat menial) skills were affected. We have been able to brush up on multiplication tables- which are pretty decent now. But- the spelling and handwriting is not great. I mean she used to be WAY advanced in that area- so now is slightly below avg (I would say). SO- the new school offers honors Literacy- which she should be in. They start all new students in regular, and move them up if needed. (BTW 30% of the students are in honors, so it is not an extremely selective group). I emailed her teacher this week to see if she was considering moving dd up. She is going to call me Friday- said DD was doing great and is lovely- but that spelling is a challenge for her. So- I guess this could be grounds for an IEP. It is not that I don't think spelling is important, or that we shouldn't work on it- but it is clearly an inflammation issue- which will heal (or not). To me, I don't think poor spelling (unless that is their main focus in 5th grade) because of a brain injury, should hold her back from honors (if she should be there). I also hate to see (not sure just anticipating) her penalized for poor spelling on writing assignments. Help- any suggestions?

Laure- I am sorry. I think most of us have these issues. My dd was great with needles until pandas hit- the anxiety and panic is definately part of the lovely pandas package. My dd, 10, has had several panic attacks: vomiting, near fainting etc. I would definately NOT opt for a straight jacket. This is a teaching moment- you need to use it to develop trust, and teach them they CAN do it. It is not going to be easy, though. Here are a few thoughts: can you get some type of light sedative from the doc if really necessary, use the emla creme to numb the area, bring her to a comfortable and kind lab (and maybe try to be their first appt of the morning), teach her some calming breathing exercises to use and do them with her, stay calm, kind and strong yourself, have her lay down and not look at the needle or blood, put a cool washcloth on her head and maybe have her bring her Ipod and headphones with calming music, tell her prior to the appt- but not too far in advance, maybe that morning. Tell her there is NO option, you would never put her through something harmful, you understand her anxiety. Then, after that don't get sucked into constantly reassuring her (it actually seems increase anxiety in our case). Offer a nice reward afterward. As far as the meds- my kids are somewhat resigned to taking them- but they push hard against me adding something else (which I am about to do). There is NO option for them- I don't discuss it- either they take it- or the doctor can give it to them through a needle (this is the time when the fear of needles is helpful). We are working on swallowing meds. I do try to limit the bloodtests for them, though. I do understand their angst. I think it is important that they learn they CAN do it- but we do limit blood tests to only testing if it will change the course of treatment- not to make the doc feel more comfortable Good luck!

Here is my 2 cents: Both of my girls had pex. I kept them both home for 2 to 3 weeks after- that was much longer than the doctor's recommendation. It is impossible to protect them from everything- you will drive yourself crazy. In the end, one did get sick a few weeks after pex- from her sister. It was not the end of the world for her- she did start into an episode- we immediately did a steroid burst, and she was well again. BUT- if you are going to the trouble of keeping him home- I absolutely think you should change teachers. Even for your sake, you will not be able to relax at all if you are worrying about this- you have other stuff to worry about. I have come to the realization that- to protect my kid's health- I have to be a constant, outspoken, advocate- and completely shed my normally nice, calm personality. This way- I do the best I can for them- and I don't stay up at night thinking I should do things another way. I don't worry about hurting other's feelings- this is my child's well being. It sounds like you will be stressed with this teacher around (and your son may have increased risk of exposure)- do what you need to do for your family.

I would just like to add our experience to the thread- although I don't think this is Meg's issue, but maybe others with stomach aches... My older daughter initially presented with pandas as daily stomach aches, which turned into fear of throwing up, refusal to eat out and eventually go out, and very restrictive eating. We did GI testing, up to the scope- we didn't do that. The ped GI kind of gave up and gave her a possible post infectious IBS diagnosis. This wasn't correct- because she didn't actually have stomach problems (no real constipation, loose movements, vomiting etc). During a routine physical a month or so later- I mentioned to an older (and wiser) ped about our dead end on the stomach ache issue. He knew what it was immediately. He demonstrated how she had heightened sensitivity to his examination. We discussed the stomach ache pattern, and found she was over sensitive to any activity in her gut. (he actually corrected me that it wasn't really her stomach ) She had the ache when she was : hungry, digesting, right before, and right after a bowel movement. She had NEVER had heightened sensitivity to anything before (no issues at doctors- no issues with needles). This was my lightbulb moment- I immediately brought her to her pandas doc. After a month on antibiotics the stomach aches were just about gone. After a steroid taper there was almost no memory of the stomach aches. Her next exacerbation included major fear of vomiting- but no stomach aches. So- for those who don't actually see ANY physical symptoms other than the complaint of a stomach ache: try to look for a pattern, consider the possibility that it is heightened sensitivity (especially if you see that in other areas).

Kayanne- I agree. SF mom's post seems to indicate that it would supress all antibodies, not just auto antibodies. That being said, while it would inhibit antibody creation, I have been told by our doc it takes longer than a 4 week taper to really become "immunosuppressed". I would think timing is important. I think it might be best to wait until she is recovered from the illness- but not for long. My younger dd had H1N1 for which we did Tamiflu. Tamiflu really halted the flu. Twelve hours after her fever subsided, she was spiraling down into a pretty severe pandas episode. We waited for 2 days to make sure we weren't jumping the gun, but it was clear she was going off of a cliff. We then started the month long pred taper- so that was about 3 days after the fever was done. It worked like a charm. Don't you always feel like you are walking a tightrope? My older one has a bad cold now, I am afraid to get her up in the mornings, for fear of pandas resurfacing

Tantrums My older daughters story starts the same as your son. Pandas had been started for her, but very mild and we didn't know it. Nov 2009 she had h1n1- and she started going downhill. Dec we did steroids and abx, she was perfect. Jan 1, done w/ sterroids but still on full strength abs. She gets an EXTREMELY mild cold, goes off a cliff. Within a month she is out of school, agoraphobic, anorexic, aggressive, depressed, refusing to shower, etc, etc. We do steroids again, they do not help. We then did PEX, which gave her an immediate80% reduction in symptoms, she continued to improve. So- not responding to abx and/ or steroids does not mean it's not pandas. Could you try a month long steroid burst again? Could you try zithromax? Hang in there, he will get better...

I really don't have answers for you. My dd was almost perfect this spring/summer post pex. Then, she lost two teeth in two days and it started a fairly substantial downward spiral. We did probably a too low dose, 30 day steroid taper. It did really help, although not to 100%- she is improving with time, however. So- I KNOW teeth can cause an episode (younger dd had this also). I think sometimes the 30 day taper is needed as compared to 5 day burst- which did you do? And lastly- we have had times when steroids were less effective- but in the end it was actually that the episode was worse, and the steroids were helping, just not to 100%. Hang in there- we ALL share your frustration.

Ok- I just need to vent a little here. I only ran into this with one doctor- the others we went to were really compassionate. If a doctor really understands PANDAS, and cares, they would not make you wait 9 months to a year for an appt. Even the darn criteria that we all get so mad about states an overnight, dramatic onset of ocd (and tics, etc). WHO would ask a parent to wait a year for proper diagnosis/treatment- give me a break. We all know which docs see the most pandas patients- and they don't ask you to wait a year for an appt. Heck, if the dentist can fit you in for an emergency toothache- If these docs want to "focus" on, or care about, pandas kids- they have to do better. MANY specialists can fit you in for an emergency quickly- don't tell me that neurologists cant. Some docs really don't get it.

Fixit- I am so sad for your child, reading all of your posts. Hang in there, things will get better- I know you are working SO hard. I am sure this is your plan- but just a reminder... get the T&A prior to PEX maybe try either Clindamycin or zithromax plus rifampin (some on here have had luck with these) to try to clear infection prior to T&A. REALLY try to get IV antibiotics during t&a, and i would consider having a steroid burst in the cabinet for after (if you have had good luck with this before). From our experience- an episode does not just go away on its own when infection is cleared. We really think in most cases we have cleared the girls of infection- but certain episodes needed steroids to clear up- my older dd had an episode that two steroid bursts and antibiotics did not clear up- but pex did. I am not sure if I am in the minority in thinking this way- but for my kids, sometimes once this autoimmune process kicks in- we need intervention to help clear it up .

Sorry Worried dad- should have included you (and Alex) in my exception

Mati's mom- (Buster excepted) Aren't the dads always the last to see/admit it? It was that way for us both times...Luckily, he is FULLY on board now. While I certainly agree with Lyme testing- remember that strep titers are relatively meaningless when diagnosing pandas. Very likely she had strEp when Mati did.... For all with siblings- I would push it with the docs. We have two, and while in one sense it is really depressing- it is very helpful to KNOW what you are dealing with, and of course treat it. I think the longer they go untreated the more chance of some of the issues becoming learned, and needing more therapy with medical intervention.

oh Smarty- I was thinking about posting today. We are having similar scale issues, over different things. My older dd had been doing fantastic post pex. Then the loss of two teeth set her into an exacerbation that was calmed with a low dose of steroids. All of her really big, life interfering issues disappeared. BUT- we are left with this oppositional/defiance/temper tantrumy/explosive thing- which for the most part I think is rooted somewhere (although i cannot always see where) in ocd. It is really difficult to deal with, because for the most part she is great. School is going well, she is eating, sleeping (well, with melatonin), bathing, etc. BUT we have one MAJOR blow-up every afternoon/evening. I will tell you that I KNOW it is pandas. We are lucky enough to have had her healthy for her first 8.5 years, and then again a fairly full remission this summer- we NEVER have issues like this when she is well. So- for example- this was the issue last night. She thought of a project she wanted to do and was all excited about it. Then she couldn't find her old binder- which was an integral part of the plan. So what happens is she gets extremely upset- WAY out of proportion to the event. She ends up hitting me or her sister, yelling, throwing something because she is so mad. Then (and this is the part of the ocd I know about) when she gets reprimanded and/or sent to her room (or whatever)- she loses it. I know that ocd tells her something like- "when she gets in trouble, everyone hates her and/or no one will forgive her, so she should do another bad thing (I guess to deserve it?)". She did explain this to me recently- doesn't know why but she feels she has to... We have been navigating this for a couple of weeks now- it is draining. I so know the other poster's feelings when they say they don't like spending time with their kids. Right now, it is really tough with her because I am walking on eggshells- and if you look only on the surface, the issues just make her seem like a spoiled brat- but at least I do know, that is not what it is- and although I don't/can't let it slide- I do try to treat it differently. Last night I tried my best to use my best "psychologist" personality, stay calm, and engage as little as possible- while also trying to help distract or divert. It was A LOT of work for me- but we did have a much better outcome. The repeating technique of yours- is a huge help. I stayed totally calm and cool- as MOM said- I didn't engage in any discussion (she wanted to go to the store immediately for a binder- I said no once- then reminded her of that once- then repeated)- while all of this calmness and technique did not totally solve the situation, it did diffuse it- and I didn't end up getting emotionally exhausted from reacting to her, and she didn't end up in her room for the night. I am also interested in insights from other parents, thoughts on techniques and/or possibly supplements that could help us here. After pex, this sort of thing slowly resolved- so I am hoping it will soon. I am doubling the zithromax, and dosing with motrin for the whole weekend- to see if we see a difference. Ugh!

Bump

Hhhmmm- I think there is a doc at Tulane who might be helpful to pandas. Could you get there? Otherwise, truly, you might need to go to DC or Chicago. Hopefully someone else will post with doctor ideas.

I am doing a happy dance for you!!!!! PM me your email, I have a story and photos of my daughter's pex (if you are interested). Eileen

I am not running this group- but will be attending. JFK Medical Center PANDAS PARENT SUPPORT GROUP Parents and caregivers of children with PANDAS are invited to share their knowledge, experiences, triumphs and concerns through the monthly PANDAS support group meetings. Members meet the second Monday of the month at the JFK Medical Center 7:15-8:15 pm. Schedule for 2010 September 13 October 11 November 8 December-no meeting Meetings will be held at 65 James Street, Edison, NJ 08817 For more Information and to register, please contact Audray at pandashelp@hotmail.com Approved for posting by ACN moderators

LLM- I am sorry about your sister That must be tough. My older daughter had MAJOR depression with pandas. PANDAS hit her mildly, for about 9 mos. After H1N1 it hit her like a mack truck- major episode. She was 9 at the time, old enough to know she lost herself- but not being able to do anything about it. The depression was very scary. It went away immediately with pex. Interestingly- LLM- my dd definately does this thing (like you describe with your sister) where she pushes and picks at me, her dad and sister. She is oppositional, starts arguments- and I think a lot of what is behind it is she is afraid she is a bad person, and that people won't forgive her- so she does stuff to make things worse. We are going through this right now, as she is (hopefully) recovering from a recent pandas episode. This is definately a pandas thing for her, as it was never present before, and goes away completely when she is "healthy". I do think it is an underlying ocd issue- that is buried beneath a prickly exterior. The bipolar list that EA mom posted- perfectly describes my kids symptoms. They are not bipolar. These symptoms came on overnight, triggered by infection, and snowballed for several months. ALL symptoms disappear with proper treatment, and when healthy. There are only about 4 symptoms on the list that one of them hasn't had. Both of them probably had at least 75% of those symptoms at the same time, during the worst of it. I just think, if this is a list that docs are going off of for bipolar- lots of pandas kids (and teens) will be misdiagnosed. I am not saying there is no bipolar (I really know nothing about bipolar and/or its treatment and diagnosis)- I am just saying that this list pertains exactly to what my kids went through with pandas. Maybe the only difference being the overnight change (although with older dd- this overnight change may have been a bit harder to see if we didn't have her sister). I strongly suggest to redhead that you look at pandas. Maybe it will be a dead end- but you won't know until you try. You really need to get to Dr K (chicago), Dr B (Connecticut) or Dr L (Maryland). They are the only three that seem to really have a handle on this thing. Don't waste your time mentioning pandas to another doc- they dont' get it, and won't treat it aggressively. You will have to travel- I am sure- but in the end- whatever the diagnosis- it will be worth it.

Wow- EAmom- between my two pandas girls we have had almost all of those symptoms at some point. Makes me agree- those are signs for pandas- not bipolar! I mean- bedwetting? that is classic pandas! Redhead- I would strongly urge you to see one of the docs that TREATS pandas- where do you live?

I will add our experience with pandas "cognitive fog" which for us comes with a lack of short term memory, also. My youngest ut daughter started with pandas halfway through kindergarten. She rec'd antibiotics, which helped- but relapses and low level symptoms remained. In her worst- the cognitive fog was visible- she would appear daze-like, and all she could do was watch tv. In her better moments, things appeared normal, but homework was a MAJOR chore, she could not write her numbers from 1 to 20, she could not recite the days of the week, and she was VERY resistant to reading. Honestly, since pandas hit her so early in school- we did not know how much of these cognitive difficulties were her, and how much were pandas. So fast forward to October of first grade. She rec'd plasma pheresis for pandas. Literally, the day after she came home from the hospital, she read my mom a stack of six books (for almost an hour- HER IDEA), she wrote her numbers from 1 to 100 perfectly with no help, and I said the days of the week to her once, and she learned them. SO- while it sucks that all kids can't get plasma pheresis- it really proved in my daughter's case that this "cognitive fog" was completely pandas. The day she returned to school they pulled her out for the yearly testing (I was furious!) and she tested advanced in math! So- to give everyone hope- I really believe the cognitive fog is all pandas. When the pandas gets under control, it will clear up. AND- it seems that my daughter was actually learning everything during that foggy time- she just couldn't get it out onto paper (or verbally)- because she didn't miss a step in school after having been in a fog for half of kindergarten and two months of first.... LLM- I am SO sorry your son is going through this, how I HATE pandas. I am hoping the lyme treatment offers you some help- but also wonder.... you know both of my kids have had pheresis with pretty good outcomes. BUT both have had some symptoms that lingered longer- but that time has helped. So I think you can still hold out some hope that this will clear up?