dcmom

mommd- That is very interesting. I was wondering, is your new doctor thinking of monthly low dose ivig, or periodic high dose ivig? How long? Forever? through childhood?

My whole family (parents, siblings, aunts, uncles) promised to vote daily!

I really felt my daughter reacted once when my dh was sick. There is always the possibility of strep at school too. You just never know. The good thing is, if he is reacting because of exposure, it will hopefully go away when the exposure is gone. Hang in there.

Interesting... I have been giving Culturell and Florastor, alternately. Not really seeing a reaction one way or the other, that I know of. I would prefer to do the kefir, however. How much Kefir do you give daily?

Kayleesmom- I am in a rush right now- many will give you some input. Please let us know what area of the country you live, and what antibiotic (and how long) the prescription is for. Will reply later....

I hear you Stephanie. There is such a bias against mental illness out there, even if it is caused by biological. My very supportive, well meaning, SIL said something the other day that just sums up the perspective of SO many. I was saying how good the girls were doing, how insurance stinks, etc. I said I would get them PEX treatment every year if that is what it took to keep them well (I was trying to explain to her how straightforward the procedure was). Her reaction was: well that would be expensive, wouldn't it? (I am not sure if she meant for us or for insurance, but I am thinking for insurance because they are the ones who paid). Now I certainly don't compare pandas to all of these illnesses, but, if my child needed a medical procedure for any other reason (appendicitis, T&A, chemotherapy, etc)- no one would ever suggest that the treatment is so expensive- in a way that meant don't do the treatment. I just plow forward and consider people (including doctors) who make comments like this, ignorant. But really- I don't give a $%#* how much the treatment costs the insurance co (or me, as long as I have the $) - I need to help my child live a healthy, happy, productive life.

fixit- So you are seeing that allergies trigger exacerbation, or at minimum a ramp up in symptoms. In that case, I am not sure antibiotics will be of major help- although I do advocate staying on them. I have NO experience with allergies, but is he on allergy meds? Is there a possibility of doing a steroid burst- have you done that before? A month long burst might give you sustained improvement, and take you to a later date where maybe the pollen is lower? I do believe IVIG can help with allergies and/or asthma as well as pandas- so you may have a double reason to give it a try....

Worried Mom- I am sorry things are going downhill. But, as I am sure you know, you need to push forward. For my kids, who were not sick that long, antibiotics and steroids were not enough. We opted for pex and I couldn't have been happier that we did. It is not a cure, and like you, I don't necessarily feel that there is a cure. BUT- there is management. So- my advice would be to push forward for pex (or ivig- we haven't done that at this point- so hard for me to discuss). Hopefully with one, or two, treatments, he will be in situation where he is healthy, and if illness comes up maybe you can manage the pandas with steroids at that point. If we hope only for a "cure", it is easy to be disappointed. But if we look toward "management" (which is the case with so many autoimmune disorders)- I think it is really do able. We DO know what works: pex, ivig, steroids, abx, living healthy, etc. We DO have a handful of docs who will help us with this. So in a way, we are ahead of a lot of diseases. I agree it is devastating to hear of kids who were well, and relapse. BUT- the point is they WERE well, and they will be again. I would be happy to PEX my kids every year (not so sure about the insurance co, or my financial situation)- if that is what it takes. Because I KNOW how debilitating the disorder is, and how benign in comparison the treatment is. I obviously don't want to go that route (and at some point will try ivig, I am sure) - but I am just stressing that the cure and the reprieve is SO worth the treatment. I know SO well the depression that can set in with seeing your child suffer so much. DON"T let it take hold. Let those few good days be a reminder of who your son really is- and strengthen your resolve to get him there. We are all with you on this journey.....

Worriedmommy- I am glad you are getting a little relief. I am a HUGE fan of the use of steroids as treatment/management for pandas, not just a diagnostic tool. We have had several different reactions to steroids with my two daughters. I think it came down to where they were at time of burst, healthwise, and what happened post burst, healthwise, also. My doc prescribes a month long, tapering, dose. The doc has talked about treating pandas flares as you would treat an asthma flare. NO steroids are not for long term use, but I think a few bursts a year for a couple years is probably reasonable. During the tapering dose, at the dosage level for the last two weeks - it is so low there are no side affects at that level. I don't believe the steroid has ever worsened our situation in the long run- but we have seen a complete deterioration post burst, rather quickly, to pre burst levels. And then a continued worsening. But, we have also seen a burst provide immediate and lasting relief. I would continue following with 2 weeks of ibuprofin dosing to try to avoid backlash inflammation. I hope you get the long term relief...

Lisa- I have found, most of the times, when the exposure is gone, my daughter will go back to her current baseline in a couple of days. If his tests are really important, is there any possibility of a week off- to limit exposure (if you think there still is some in class) and let his system calm down?

yes- yes- yes! My dd starts to ramp up a bit for a few days, then I usually get an email that someone was diagnosed with strep. It has been really bad in her class this year, she has not had a break. She is on steroids now, to try to tamp down her reaction to heavy strep exposure. I think there must be a few kids that are undiagnosed or are carriers in her class. It started with about 10 kids having strep during a 3 week period (two of them twice), and since then about one kid every other week. Ugh!

Just spoke to my dearest friend, who told me that out of the blue, her daughter has started pulling out her eyelashes and eyebrows: trichotillomania. Her daughter is 9. She is seeing the school counselor, but for the life of everyone around her NO ONE can see any signs of anxiety or stress. So, I know this board is full of brilliant, compassionat Moms. Does anyone know anything about this? I know trich can be considered a form of ocd. I wanted to tell her to get a strep test- but didn't want her to think I was out of my mind. It has been probably going on since prior to Christmas- the only thing her mom may have noticed is that she complained of being tired around the same time this started. I told her there is a strong possibiltiy the cause could be medical, not psychological, and that I would let her know what i find out. Has anyone dealt with this? Any thoughts or resources? THanks!

Both of my girls exacerbated after supposed H1N1 this year. I was NOT planning on the vaccine, but the flu went through their school abefore it was available anyway.

ajcire- that is right. The milkmaid grip is a choreatic movement, not a tic. My dr does the same test, it is not so much something you see, but something you feel. You ask them to squeeze your two fingers tightly (in a cow milking type position). The milkmaid grip would be if you feel the loosening and tightening- they are not necessarily aware of it. I never felt it (kids wouldn't squeeze my fingers), but my kids had it. The dr termed it "mild chorea". It shows some neurological involvement.

Brandy- I have no idea how people do it. My dh works a lot. I have been home with the kids since they were born. I was planning on going back to work last year, getting my resume together, when pandas hit. It has been a roller coaster of a year. Both of my kids were diagnosed with pandas, in major exacerbations, in the hospital with pex, since doing well, but taking off a lot of time when there is strep exposure or illness. We are in the process of moving back home, and planning on spending a lot less $$ on our house- with the knowledge that we don't know what the future may bring. At this point I can't imagine going back to work, ANY kind of aftercare, or not having the time to let the kids stay home when needed. Pandas puts so much stress on the household as it is. So- I don't know what to tell you. We are lucky enough to be able to lighten our financial load, and re prioritize our life- to accomodate what life may have in store. I will be REALLY interested in other's responses- as I would like to have something for myself in the future! Eileen

Peg- so sorry. We have typically done a month long steroid burst. If she reacts decently to steroids- see if your doc will consider it. It was like a week long dose, and then tapering off over the following three weeks. It has either helped us long term, or at worst given us longer term reprieve- to get you closer to the date where you can try the high dose ivig. I wish you could try pex- is there any way a local hospital could give it a try with light sedation? Hope you get some relief soon...

YES. My poor dd reacts to kids in her class with strep. I usually know a day or two prior because of her increased irritibility and "just right" ocd, then I get the email that so and so was diagnosed with strep, and she is usually better with in a day. She is on daily full dose zithromax. We recently had the situation where over 10 kids in her class had strep, and the whole other 1st grade class. I believe strep is still rampant in her class. We finally decided to do a steroid burst because she wasn't calming down after a week of this exposure. The burst is coming to an end, a friend in class was dianosed with strep on Friday, and Julia has been more irritable since. I have kept her out of school for at least 2 mos of time throughout the year. I will probably keep her home tomorrow. The ONLY thing I have found to help, is getting away from the exposure- which means staying home from school for a week (sorry). A question about the melatonin. I tried it once on my kids and it worked great. I am too afraid to use it because it has a warning for those with autoimmune disorders. It seems it definately interacts with immune system- have you talked to a doc that recommended/approved it. I would love to use it, but am so afraid of stirring ANYTHING up.

fixit- I will answer what I think you are asking, with our experience. PANDAS is still a clinical diagnosis. Meaning, there is NO definative test, the doctor needs to take into consideration all testing, and physical exam, and symptoms and their pattern. I have two daughters. Both have pandas. I have done their CAM Kinase one time, at the same time. They both had strep throat in 3/09 which caused pandas. Julia had overnight debilitating onset. Caroline, had overnight, but not completely debilitating onset (it took us longer to figure her out). I took their Cam Kinase in 8/09. At that point, Caroline's symptoms had been somewhat settling down, Julia's symptoms were mid level, due to a further exacerbation after T&A in June. Julia's cam kinase was around 160- definate pandas. Carolines was 106- "normal". (however all of Caroline's anti neurals were fairly elevated). This "normal" cam kinase threw us off the track for a couple months. Then, unfortunately, she got the flu (probable H1N1) and things went off a cliff (ocd). She responded beautifully to steroids, however that "remission" didn't last, she ended up having pex- and is doing really well now (fingers crossed). SO- in my mind, CAM Kinase is not a definative result, especially if taken when not in the midst of exacerbation. It is one piece to the puzzle. Look at the anti neural numbers too. Also- and this is my best advice- the evidence for pandas can be seen also in the success with treatment. Do what works, and don't worry about the tests- that is what we did... I can't stress how important I think it is to see a pandas doc, if it is AT ALL possible: in my mind that is probably Dr L or Dr K.

Peg- I am so happy for you and Allie. I hope this is the answer for you. It is amazing how some docs make things so easy, and others, well....

I am not sure- but will relay our experience: My dd 9, had pandas inducing strep last year. She had literally 2 days with fatigue and mild loss of appetite. Because of her sister (pandas), I freaked and brought her to the doc for culture- positive. She did a course of amoxicillin (I know- what a mistake- I was green at the time). I called the doctor halfway through the course saying that she was just not feeling better. Fatigue and stomach aches. She went back to school for a week, and then was out again for a week of not feeling well. Took her back to the doc insisting she was not right. They tested for mono (negative), strep (negative- but on antibiotics at the time) and WBC (normal). So they surmised she had nothing serious. Well, in the end, she had pandas- and all of their testing neither helped confirm or deny that. The only proof was in the treatment (abx, steroids, and pex)- and that it worked. SO- in the end, I don't put much stock (unfortunately) into tests. Frankly, the deeper you get into pandas, the more you realize how little docs (and the science community) really know about bacteria and our immune system. I am with Dr L, and this is what makes her a great doc, she told me "we just have to do what works."

Colleen- I am SO sorry. I am so MAD you and your child have to go through this. I would (and have) lie! You know you have to be the advocate. You know YOU know so much more than these docs, and YOU know what to do for your child. I would say what happened, but add the sweet little lie that four other kids in his class have strep now, and you INSIST on a prescription of antibiotics AT LEAST until they get a negative culture and prove to you otherwise. You are in VA? Have you seen Dr L? Who gets you the antibiotics for your other kids? Keep us posted- stand your ground- go in with the plan NOT to leave without antibiotics. (Worst case scenario- do you have enough from the other kids to "share" a little with their sibling while you wait for the test.) The other thing- if it is not strep, does not mean it isn't pandas, unfortunately, but I am sure you know that. I wish you the best of luck this afternoon- let us know how it goes....

I would recommend seeing an allergist immediately. With pandas, you NEED the option of antibiotics. My daughter has had similar issues during her life, at one time or another has reacted to omnicef, amox, and zithromax. As soon as we suspected pandas we went to the allergist. He explained there are several things which could be happening: first, a rash can be from the illness, second, these rashes can be side effects from the meds- that some people experience, and third and least likely for my dd it could be a true anaphylactic type allergy. If you can remember, document exactly when, to what, and appearance of rash. If it is side effects- your child can be treated with the med- if necessary they can give an allergy med to ease any discomfort. My dd now takes daily zith. My allergist made a list in preferential order of what antibiotics she can have. He said it is very rare to have a life threatening type of allergy to zithromax. She is doing fine- no rashes. We plan to test her in the future for penicillins- those are the most likely for people to have a life threatening allergy to- so we will stay away from them for now. If he is back to himself right now- that is great! If it were me (but I have been through a lot), I would want to consider prophylactic abs for a year. There is not a lot to lose in doing that. If he gets strep again, the episode could be worse, and there is a possibility he would need more than antibiotics. The decisions with pandas are SO hard, and, they are ALL on you as a parent- there is not enough research. THE best we have, really, is our collective experiences on this forum. Good luck!

Totally agreed- both of my daughters have an easier time writing down some of their ocd issues for me, rather than telling me. It usually brings them so much relief....

HeeHeeHee! "whole paycheck" that is really cute! I shop there weekly, and can't bear to price compare because I love it so!

monarchet- I am so sorry. We have two pandas daughters- so I know the pain of having to go through this all over again. I don't really remember the story of your other child, but if at all possible I would get to Dr Latimer. She has quite a few families with pandas siblings. She was very open to exploring the possibility of pandas with my second child. I am not sure what the titers will tell you. You know she had strep. Both my kids have pandas- I am not a big fan of titers, if you had documented strep, I don't know what titers will tell you right now. The first thing I would do, if she is off abx, is a throat culture. You want to be sure you cleared the strep. I would then try to get at least a month of daily antibiotics. This is how we proceeded with second daughter. After we saw some calming on abx for 30 days, we did a month long tapering steroid burst- which brought her back to herself completely. (This didn't last, but for some kids it does). I don't believe there HAS to be and active infection for her to continue with pandas symptoms. I DO think you want to address this right away with Dr Latimer. Our second daughter had pandas for about 7 mos, but at a much more functional lower level. Then, she got the flu, and went off of a cliff. If I had been more prepared (doubled up abx, did tamiflu, did steroid burst immed following flu recovery) maybe we could have avoided the acute episode. If, financially, it is an option, I would consider the Cunningham test, also. My heart goes out to you and your family. Please keep us posted.