dcmom

Bump! Just want to make sure everyone who is interested has pm'd me. If you have a pandas frient who is not on the forum, but a patient of Dr L, please reach out to them and if they are interested send me their email. I am going to send out a letter about the project in the next two weeks. thanks! Eileen

We haven't had that issue. I give melatonin in the liquid form- but only about .6 mg for my dd age 10. Maybe try starting with a lower dosage.

Thanks for asking. Well it was definately a tic. The culture was negative, and I think she isn't doing the titers. He ended up with a rash almost a week later that she thought looked like Fifth's disease (slapped cheek- look). I haven't talked to her in almost a week- so don't know if it is gone yet or not. Will keep an eye on him- of course. Hopefully just a "transient tic".

My dd was 8.5 when pandas hit. She had a much milder case than her sister. Mostly, sleeping issues, defiant behavior (never had this before), eating issues, and a loss of interest in hobbies and going out. Overall, though, she still did really well in school, and functioned on the surface. Her Cam K was normal, but her anti neurals were elevated. She later had a drastic increase in pandas after illness, and received aggressive treatment. Now- when we look back, so many of her difficult behaviors and changes were due to OCD. She was good at hiding the real reason behind a difficult, prickly surface. So- I guess I am telling you to go with your "mommy instinct". From this post, and others, it certainly seems things are not right. The Cunningham test is an excellent piece to the picture- and if finances are not an issue- I would highly recommend. However- it is only a piece to the diagnosis. Good luck.

To all who want to be included- please pm me your personal email. I will be putting together a letter of request with some thoughts and emailing to everyone on the list. Please- even if I have your email- it doesn't hurt to pm it to me so I remember Thanks! Glad everyone is interested!

I am, as we all are, devestated by Dr Latimer's loss. Even before this, I have so wanted to thank her, for singlehandedly saving my children's childhoods. She has been an unbelievable advocate for our family. I am going to put together a book for her (via shutterfly). I would like to collect letters from her pandas patients (or their parents, or both) about how she has helped. Maybe a brief description of before and after, and the support she has given. I would like to include these letters, with photos of the children, poems, even drawings from some of the kids, whatever we can think of. A positive, beautiful book to show her the difference she makes to so many. The only reference to her son will be in the dedication. If you are her patient, and are interested, please pm me your email- and I will include you in the request letter I send out in the next week or so. Thanks! Eileen

Suzan- I totally relate. My kids are in a good place right now- and there is no better barometer for how they are doing than how they are eating. They both (ag 5 and 8) did not gain any weight in about a 9 month period- which for a growing child is akin to losing weight. They are both about 5th percentile for weight, and closer to 50 percent for height. It was a constant worry for us. I have found that the rules I had previously, I threw out the window. So- about 50% of nights (100% during crisis- now we are down to once a week) I would give them dinner (which was always the problematic meal) somewhere else: in front of the TV, in the playroom if they were in the middle of playing something fun, or outside. For them, with the distraction, they would (unconciously, I think) eat A LOT more. I wouldn't ask them what they want. I would take into consideration what they like and make up individual trays for them. (I have these school like lunch trays with about 6 divided sections) I would put "the family meal" on the tray, along with fruit, raw veggies, maybe a yogurt, etc. In this way, they didn't have to make any decisions- and there were different things to eat. These nights would take the stress out for me- and were easier for them. I know about preparing for different preferences. I am a vegetarian (aspiring vegan), my dh is a devout carnivore, and my kids are picky. I would allow them to be vegetarians: but there are two requirements for that: they must eat A LOT of veggies, and they must eat several servings of beans daily. They will not. So- if you think your daughter is serious about trying vegetarianism- and you want to allow her to try it- I would inform her that means lots of veggies and beans at each meal. If she goes for that- and has an interest in vegetarianism- it would be great- but there is no option to be a vegetarian and not eat these nutritious foods. There are some things you can make to accompany a roast or steak- that your daughter can eat as a meal. (ie: you make a roast chicken, in another pan alongside you fill with veggies, garlic and olive oil and roast those- toward the end you can throw in chick peas- your daughter can eat the veggies, chick peas, and whole wheat cous cous as her meal) If you double this, you have enough for everyone for two nights. If she is slightly obsessive, like my dd, I would challenge her to read up on vegetarian meals- and give you some recipes. In general, when my kids are involved in meal planning and prep- they eat a little bit better. I don't work- and I still find keeping up with grocery shopping and cooking a huge battle. Our food budget is outrageos because we eat as organic as possible. It is hard to keep up cooking so that I always have a good vegetarian option- many nights I end up with some type of wrap. I can totally relate to being tired of it- because there is no break- the shopping and cooking never ends. I can feel it in your post- but, you will get your energy back to continue.

done- let us know if this changes

Colleen- SO sorry your baby is going through this! Just want to throw this out there. When my girls were early on in diagnosis, I discussed antibiotics with Dr T and a pandas believing ID doc at Gtown. I, of course, was/am concerned with having the kids on long term abx. They both thought that possibly the zithromax would be easier on the gut- because it can be done every other day, or twice per week, and not daily like amox/augmentin. Just a thought....

Mati's mom- OR maybe you will be lucky? My dd had pex in October. She had a complete and immediate remission of symptoms. She got H1N1 in November, and within 25 hours of fever subsiding, was deteriorating fast into another full blown episode. We got her on a month long steroid burst within three days, which totally stopped the decline by the second dose. She is now stable. I would say we haven't gotten back to the 110% immediate post pex level, but she is probably at 95%, which we are really happy about. She does have flares if she is exposed to strep. Thankfully- she hasn't been sick since. I will be a basket case next time she is sick, but plan to have steroids in the closet to tamp down any immune overreaction. Sigh.

Jayjay- I totally understand where you are. We went to the hospital $25K in hand (thanks, Dad!) to get PEX for my daughter, as we couldn't wait for the insurance company to go through their appeals process- she was in crisis. The good news is- in the end they approved it (after dd was home and recovering for a week). Well the insurance co reimbursed us the contracted rate of $5K, so now I am trying to get the $20k back from the hospital....Have to get of the net and go call them again. I have to say, having to fight with the insurance co, and figure out where to get the cash- DOUBLED the agony of having a sick child. Instead of being able to focus 100% on her, her sister, and keeping myself from going insane- both dh and I had to spend hours on the phone with insurance co and doctor. Needless to say- it has left me pretty angry (and I am usually not an angry and bitter person). But- you are totally doing the right thing. Your child will be in recovery by the time the insurance co gets it figured out.

Congrats!!!! Question on the steroids, what type dose and duration have you been doing, and how often? Steroids have worked really well for my kis. Thanx!!

YES for us too DD was in the early to middle of K when pandas hit. Just learning/working on numbers. I thought she had a huge math issue (didn't realize this was part of pandas at the time) because she wrote all of her numbers backward, mixed up the teens, and just could not get down counting over 20. Once she was treated with plasma pheresis- overnight- she could write from 0 to 100 perfectly- AND enjoyed doing it! This year she tested advanced in math! It will come back with treatment!

Pam P. I am sorry for what you and your daughter have been through. It is hard to find a doctor who believes in pandas (as you know), but then sometimes even if they do, they don't understand the incredible toll pandas takes on the child (not to mention the family). I always think: if I took my kid to the doctor, and she was having trouble breathing, they would do EVERYTHING in their power (so called risky, or not) to make sure she could breathe easily, and not have this problem again. Most conventional medical docs have no experience with any mental illness, they do not realize that this crippling ocd, anxiety, anorexia, rage, depression, etc is equivalent to not being able to breathe. So- what I say to everyone- Don't waste your time with these docs, get to a pandas doc, immediately. You need a doc that will do what your daughter needs, and that may be antibiotics, steroids, ivig and/or pex. I would suggest Dr L or Dr K, asap. While waiting for the appt, I would get the cunningham test, if you can.... Medical treatment always looks at the risk of treatment vs the risk of no treatment. Unfortunately, most docs don't understand the risk of no treatment- so I do not believe they are qualified to make that decision. Good luck- I am sure you will get more advice. My suggestion of treatment is not to waste time: one month of full strength antibiotics (maybe zithromax) followed by a month long steroid burst. At the end of those two months re evaluate, and consider if needed- ivig or pex. Those treatments are nothing compared to the agony for these kids.

norcal mom- to answer your question about treating with normal cam kinase- yes. I have two daughters. Youngest one, classic overnight onset pandas with strep a year ago, March 09. Sister also had strep at the time, with (we weren't sure at time) mild onset of pandas. Summer 09 had both kids CamKinase tested. Young one (classic onset) was around 160, treated aggressively. Older one (mild onset) was 106, bit with high anti neurals. This threw us off course, for a month or two. She then, unfortunately, had a more classic crippling onset after H1N1 and a cold. Never did the Cam K again, but ended up with antibiotics, steroids, and plasma pheresis. The proof is in the pudding, the treatment worked. So- I think the Cunningham test is great- BUT I definately believe it should only be one piece to the puzzle in a clinical diagnosis. I also think the anti neurals should probably be given as much weight as the cam kinase. Both girls are stable and (hopefully) healing, now.

Wow- I am sorry... I would add a few things, as someone from the outside looking in. It sounds like your daughter has had health issues a lot- have you done an immune panel on her? Is it possible she has an immune deficiency in addition to pandas? Dr L is a very thoughtful, doctor. She has saved my kids- I totally trust her. I don't think she proceeds hastily AT ALL into treatment, but at the same time will take action when needed. You need to go with your gut- but I would listen to her with an open mind. I don't know much about c dif. I would imagine you can treat it, and eventually your daughter will be able to do antibiotics again with careful monitoring- hopefully someone else will chime in. I think the fact that the Augmentin made such a change, is a helpful indicator that IVIG might work. And in the absence of antibiotics I think you need to do something. I wouldn't let the Cunningham test outweigh the other indicators in your clinical picture. My dd had the opposite, normal cam kinase and very high anti neurals- she eventually had pex and is doing really well. Good luck!

That is a great story about the poop. We have stuff like that happen, here, as well. It is tough balancing two kids, mine both have pandas, but have exacerbated at different times (thankfully). In a way, it gives them a little more understanding of each other- sometimes. I feel very strongly about being as honest with kids as possible and appropriate. (of course age is a factor). My kids were 5 and 8 when they started with pandas. As soon as we had diagnosis, we explained it to both of them. They both understood it. For them it is as simple as, when kids with pandas get strep throat, some of their antibodies (we call them fighters- fight infection) get confused and bother their brain instead of the strep. This is what causes ocd, separation anxiety, etc. They were both relieved when they received diagnosis (different times)- because they knew something was going on. It was a relief to them that it wasn't their fault they were suddenly afraid to do things a toddler could do. Now they are in recovery, and we talk about it a lot. I tell them about other kids on the forum and some symptoms they have had, especially when it is what they suffered. They really seem to like hearing that. They know about the pepsi grant contest, and want to win. We talk pretty openly about ocd, also. The only thing I haven't been really up front about, is that there is a chance they could have another episode. They know if they get strep it is a big problem, or if they are around it - it will bother them (I use the allergy thing)- but don't know other illnesses could be a trigger. I don't want to put that worry on them- we'll just have to see how it goes. I don't talk about it coming back..... They are annoyed that they had to get pandas, take medicine and be in the hospital. But, my dd,9, has a diabetic friend, who takes insulin, and is also allergic to a whole list of items....so she says she would rather have pandas than that. So, for kids, they are able to keep it in perspective.....

Thanks for the info everyone! My sister took him to the doctor last night. No asthma, allergies or infection. The doc thinks it could just be habitual. She did give him a strep culture and Rx for titers, though. Hopefully, something temporary...will keep you posted.

Hi- Would like to hear from those whose kids have tics. My nephew, age 4, had a cold a couple of weeks ago. My sister has recently noticed he is frequently clearing his throat. She has googled this, and thinks it might be asthma, as throat clearing is often a first symptom, and her BIL has asthma. I told her and my mom that throat clearing can be a tic- and she should get a strep test. I just said it calmly- as in an extreme precaution. I try to remind myself that all kids don't have pandas:) Am wondering if any kids have had this throat clearing tic- if so- were they checked for asthma? How to tell a tic from asthma or actual nasal drip, etc. She thinks it could be a habit now.... I am thinking- my kids never have cleared their throats even with a bad cold- and certainly never had a habit of this. I don't want to alarm her- but wish I could understand if there are any tell tale signs of whether this might be a tic or something else. She cannot establish any pattern to it, sometimes it is frequent, and then he wont' do it for an hour. He doesn't seem to do it at night while sleeping (which seems to somewhat rule out nasal drip). Lastly, have any of your pandas kids had something like this when young, that just went away- and then at a later point developed pandas. I just want to know how concerned and closely I should watch him.... thanks!

Hi everyone! Since Tmom and I are the locals- we would love to get all of the pandas families together at some point, probably Friday night. Please PM me your email if you think you might be attending, and we will keep you in the loop... Eileen

Kay- I totally agree. When my dd's were in their severe episode- forget it. They would not be able to get themselves out of panic mode. Now, when she tries things that made her panic before- she is nervous. But her nerves seem to be about her fear of panicking like she did last time, and in the end, when she does the thing- it is actually NOT THAT HARD- it is more the nerves before. So once you have treated them medically, it just takes a little work to move past the fears.

I just want to mention a couple of things. I don't have a teen, but a 6 and 9 yr old with pandas. The nine year old had untreated pandas a little longer (about 9 mos), and is doing great post treatment- but- it has been a little harder for her to let go of anxiety/ocd than the younger one. Unfortunately, if you live in anxiety for a year, your brain learns from it-and maybe the older ones learn "better"- so it may take a little longer, and a little more hard work to unlearn. I think Peglem may have this....but there was a study done in Turkey with young adult males with ocd- who were treated (I think) with plasma pheresis, and responded very well. It is never too late. If it were me, and my kids were older, I would accelerate my pace and aggression of treatment. I would probably listen to Dr K and get to some serious medical intervention immediately (pex, ivig). After that- all problems may not be solved- but from what I have seen, they are in a very good place to at least make progress on their "issues". It is so hard- the older they are the harder it is. But don't give up!

Hi Karen, I sympathize with your stress. I can tell you that I know a PANDAS parent can be a very lonely place to be. We moved to our new home from a few hours away (where all my friends and family lives) about a year before pandas hit. I was just starting to settle in and make some friends. Once pandas hit, I found myself really pulling back from our new community. I haven't made many close friends here in part because of pandas. Most parents don't know what my kids are going through. I really only discuss it with immediate family. I have also not discussed it much with good friends via phone- they know what is going on, but how do you explain, and who wants to go into detail on the phone, about our daily issues. For outsiders I really talk about pandas as an illness. I say, very matter of factly, that they were diagnosed with an autoimmune disorder that was triggered by strep, and can cause neurological symptoms. I say it with authority, frankly, because we were lucky enough to have quick and confident diagnosis. I haven't had an eye roll (that I have seen)- not sure how I would react to that. I live in a very liberal and educated community, maybe that is why- and when you really start talking to people it is amazing how many kids have issues: adhd, allergies, etc. I think you should consider buying a bunch of copies of Saving Sammy, and hand them out to those who are annoying you. I think you should gather all of the love and support that we all have for each other on this forum for yourself. Surround yourself with positive friends and family, and keep at arms distance those who are not supportive. We need to say, OUR CHILDREN ARE SICK. That is the bottom line. It is like anything else: they are sick, and as a parent we will do what we have to in order to get them healthy. Period.

I have to say I agree with SF Mom. My daughter attended school until age 9 1/2- not one issue in all of her years. Pandas hit her like a Mack truck, and within a few weeks she refused to go to school. We did make her go one day- and it just made her worse- she was a mess at school- a shell of her former self. She really was just too sick to go. She had every symptom in the book: ocd, anxiety, hyper, depression, anger, not eating, not sleeping, etc. We decided to keep her home, and treat her as if she was sick. We told her she was sick, and that when she got better, she would have to go back and make up the work. She wanted to go back (in the future). Once we did some serious medical intervention (pex), she went back with only minor anxiety for the first few days. She ended up missing almost two months of school. She has been back now for two months, NO problems. We do seek therapy to help her work through the anxiety/ocd issues that she has- it is not that I don't believe in therapy- but for my kids, there have been times when they were just too far gone for that. With my younger daughter, we did work really hard on keeping her in school. But for her, she was happy at school, once she could get there- so it was in her best interest to do the hard stuff to get there. I really feel, that in their time of serious crisis, we need to treat this as a medical issue. When they are in recovery, or have a flare, that is the time for therapy and working hard. The answer really lies in what your "mommy instinct" tells you. I find with pandas, this instinct is the BEST guide to helping my kids.

Tantrums- I think you should try more. My kids are clearcut pandas. TOTAL overnight onset, both OCD- not tics- totally helped by pandas treatments. But I have to say this for everyone FOR SOME PANDAS KIDS, ANTIBIOTICS ARE NOT ENOUGH. For both of my girls, their first episode remitted with antibiotics. But, since then the antibiotics do not cut it. We moved to steroids- they help tremendously- but we ended up with pex because we couldn't maintain the improvement. If antibiotics dont work, it does not mean it isn't pandas. Also- ibuprofin has never really had a noticeable effect on them either. I would suggest you consider doing the Cunningham test- as part of your clinical picture- and then seeking the advice of a REALLY good, pandas knowledgeable doc (Dr L or Dr K)