dcmom

It took my dd over 30 days on full strength zuthro to respond. My older dd, who had mild pandas longer needed more than antibiotics to see a dramatic improvement.

My two pandas girls had flare ups when they each lost two baby teeth in a week. For one the flare was mild and went away in 2 weeks on it's own. For the other, the symptoms were more significant, and we used a steroid burst to get things under control.

Both of my pandas kids had their tonsils out, both were large and juicy. One's tonsils had appeared unremarkable prior to T&A. It did cause a pandas flare in one of them. If your child is doing well, trending positive- I would not rock the boat . If your child isn't doing well, and you are considering pex or ivig- I would absolutely have the tonsils done first. I would get strong abx prior, iv abx during, and high dose abx for at least 2 weeks post. I would also have an Rx for a 30 day taper of prednisone on hand.

Dr L is the only doc that can/will do it all: try different abx ivig and pex steroid bursts in varying lengths as part of treatment She is flexible, and tailors treatment to what works for each child.

I also give my two girls melatonin for help in falling asleep. You should start at a low dose, and move up to what works. I give them only .5 mg, once they are ready for bed- then we do some reading, and they are asleep quickly.

My two pandas daughters have had symptoms flare due to losing teeth. For one, the flare up was mild and passes in 2 weeks. For the other, the flare was worse, but helped greatly with steroids.

Forjpj I totally agree. Prior to PANDAS I was really social. I have lost a lot of interest in socializing outside of my family (parents and siblings). I didn't really clue my friends in on the day to day horror of pandas. I am not interesten in sympathy- but it is SO hard for others to understand, and to tiring to explain. We are now moving to a new town, ugh, I just don't know if I have the enthusiasm or energy to put myself out there to make friends. I, too, am so glad for this forum. It is nice to know others feel the same

I will second Melatonin being a lifesaver for both of my girls!

Hi everyone- I am sure all of you are tired of my story by now We have two dd's- the younger one diagnosed with pandas within about 4 weeks- because she had overnight, debilitating ocd onset. Fast forward about 9 mos and her sister was also diagnosed with pandas, after onset at the same time as sister, but much milder- however a little more insidious- she functioned fairly well for those 9 months. About two months into diagnosis, she spiraled down thanks to H1N1. Sigh. So I will say, you are not being too paranoid. I think Meg's mom's ideas are awesome. OCD is definately accompanied by lots of emotions (panic, distress, fear, anger,etc)- a child's habit is not. However, when we were going through this- the mommy's intuition is the key, I think. It might be normal for a kid to develop a habit- but to develop a few things around the same time, while having a sibling with pandas is too much coincidence. I wish we had pursued my older one's symptoms (instead of thinking it was stress and tween issues) aggressively- maybe we wouldn't have had to go the pex route. Regarding the cunningham test- please remember that is just a portion of the diagnosis. My older one had her numbers done, about 5 to 6 months after her mild onset (still showing symptoms- somewhat improved on their own)- her Cam Kinase was only 109. This normal range # threw us off of pandas for three months- while she still suffered with symptoms. Finally, after reading Dr K's adolescent onset variation to my dh (who thought I was crazy at first) we both knew she had pandas. Thankfully our doctor pursued pandas w/o lots of classic stuff- although a few months later dd did have a dramatic spiral into pretty severe pandas- needing a rushed pex procedure. We just saw our doctor, who told me she puts more stock in cunningham's anti neural antibodies than the cam kinase. DD's antineurals were fairly high. I hate to sound doom and gloom- but I wish I had someone to say to me- I think your other dd has pandas. It was harder to see- even though I thought I knew so much about the disease. It was and still is extremely painful that both of my beautiful girls have to suffer like this. My wish for all of you is that these are flukes, and habits. There is no silver lining- although I do hope and think, that the fact my girls share this disorder does and will make them closer.

Someone must have a link, or google: school nurse news had an article on pandas that was very geared toward school personnel

I agree with TPotter, and would jump at pex. Both of my daughters had it. While I do not necessarily think it is a cure, it put both daughters in an almost immediate, 100% remission. They have had some minor symptom flares with immune challenges since, but mild and manageable. You will also need Dr T to help with agressive mgmt using abc and steroid bursts. I also, of course agree with thorough testing, and the need to rid of infection.

We need Meg's mom to give you an answer. Here are my thoughts- but I am not sure if it will help you. Weather fears would be ocd. Just as Rome was not built in a day, ocd fears are not conquered in a day- unfortunately. Sending a kid with major weather ocd to camp and a canoeing trip with thunderstorms lurking in the vicinity- if she hasn't worked up to this- seems like too much. I think one discussion of her fears, with you giving her the facts about what the real and not so real dangers are is important. I think you telling her the camp puts safety first, and maybe getting the camp director in on this conversation would be helpful. Beyond that, if she asks for re assurance, I would tell her that you have discussed this already. I also think she needs a plan. Maybe she has to go to camp- but if she really can't do the canoe trip- is there another option? Going to camp in a thunderstorm is likely a good step. If you luck out there may be no thunderstorm, or they will totally clear. I wish I could offer more advice, this is so rough, and I have been in this type of dilemma so many times- late at night wondering how we were going to deal tomorrow. If checking in on her at camp on an early lunchbreak is a possibility- that might help- we have done that type of stuff before. Good luck!

This seems like a typical media scare story. There has always been antibiotic resistant bacteria. And, we have continually come up with stronger antibiotics. This is based on the bacteria that was discovered and talked about all over the media recently. I am sorry- do you remember the panic the media caused with H1N1, the bird flu, SARS, now whooping cough, and oh soon we won't be able to use antibiotics. IMHO, we have enough to worry about- I would not put this on your radar...

Hi all- I just want to add my 2 cents. I have the utmost respect for all parents on this board. We are all fighting for the same thing, to get our children well, and when they are well try to understand WTF happened, and to spare others from traveling the same long road. In the end, you are all right. It is important to have healthy debate, and show all sides of the story. IVIG is not the answer for everyone (I think we have seen that), Lyme is not the answer for everyone. I am sure there are some kids who are diagnosed with both pandas and/or lyme, who do not have it. That is just going to be the case. Some specialists may look through "colored" glasses, depending on what they have seen. I know I do. I DON"T think all of our kids have lyme, and some may not have Pandas. Lyme and pandas are two sepearate things, that may look the same sometimes. A child may have BOTH- and that may be why they do not respond well to treatment for one alone. While I love all of our specialists- they do not know it all- even if they think they do. We, the parents, know the most. The pandas docs, and I am sure the lyme docs are fallible, and are in uncharted territories. Thank God for them- but that doesn't mean we shouldn't challenge them. Wendy and Pmom are awesome contributors to this board, I do not want to see either leaving this debate with hard feelings, or feeling they cannot express their opinions. We all have to look at the board for ideas and inspiration, and answers, sometimes. But- we all know- it is important to verify and evaluate all info looked at online ourselves. I am always overjoyed to see a child is doing well- but I always ask myself- how long has this child been doing well? Until a child has at least one good year of remission, cure or successful management- it is just not enough to go on. Our kids get better, and they get worse- and it sucks.

Sf mom did you test your Kids for Lyme while on antibiotics?

Hi Meg's mom My daughter Caroline (about the same size as Meg) is on 300mg of zith per day. So far (5 mos) she has only had two flare ups. One lasted about 2 days and was linked to strep exposure, and one now that I am linking to the loss of two teeth. I haven't noticed that increasing her (or her sister's) dosage of zith has helped the flare ups. I do go for the pred if needed. Due to Coco's post, and our recent experience- I plan to ask Dr L about the possibility of trying shorter doses of pred for these flare ups. My younger daughter Julia is on 200mg/day. She is smaller. She has been in "remission" for over 10 months with some flare ups along the way. These have always been linked to strep exposure, and one time to the flu. There is no other pattern. I have increased her to 400mg for about 4 days with no clear improvement. The flares due to exposure go away quickly once the exposure is over. We did prednisone for the flare up (which was looking more ominous) after the flu. It is all so confusing, esp since even the docs don't REALLY know what is going on. It certainly couldn't hurt to experiment for a few months at the higher dose and see if that stops these breakthroughs. I also like the idea of a few days of pred- would that be every other month? And if that would bring her to staying at close to 100% consistently- I think it is worth it. Good luck- let us know what you decide...

Hi Meg's mom My daughter Caroline (about the same size as Meg) is on 300mg of zith per day. So far (5 mos) she has only had two flare ups. One lasted about 2 days and was linked to strep exposure, and one now that I am linking to the loss of two teeth. I haven't noticed that increasing her (or her sister's) dosage of zith has helped the flare ups. I do go for the pred if needed. Due to Coco's post, and our recent experience- I plan to ask Dr L about the possibility of trying shorter doses of pred for these flare ups. My younger daughter Julia is on 200mg/day. She is smaller. She has been in "remission" for over 10 months with some flare ups along the way. These have always been linked to strep exposure, and one time to the flu. There is no other pattern. I have increased her to 400mg for about 4 days with no clear improvement. The flares due to exposure go away quickly once the exposure is over. We did prednisone for the flare up (which was looking more ominous) after the flu. It is all so confusing, esp since even the docs don't REALLY know what is going on. It certainly couldn't hurt to experiment for a few months at the higher dose and see if that stops these breakthroughs. I also like the idea of a few days of pred- would that be every other month? And if that would bring her to staying at close to 100% consistently- I think it is worth it. Good luck- let us know what you decide...

I am also interested in more specifics on the different dosages you have done. My kids are really great steroid responders also. We have used them several times (and doing a burst now) to tamp things down after illness or a lot of exposure. The only Rx we have done is 28 days. It started at 20mg day for a week, then 10mg a day for a week, then 5 mg a day for a week, then 5 mg every other day. It has worked tremendously- but it leaves them on the steroid for a full month. For some issue that may be overkill. Have you done the 5 and 7 day burst with no tapering? What did you do that for? Did it result in remission from that flare up? Any details would really help- my doc is really open minded! Thanks

coco- thank you for your story- and hooray for your girl. I know only too well the pain of having a ten year old with these issues. I have one question- can you describe your steroid dosing? We are hoping we are to a place where we can "manage" pandas flares due to immune challenges. We have only so far done the month long tapering burst- which has worked wonders- but this does potentially put them on steroids for a good percentage of the year if they get a few illnesses. I am wondering if you have found luck with a shorter term in tamping down a minor flare, and if so if you would share the type of Rx is was... thanks!

EA mom- My girls are 7 and 10 also! My little one started with PANDAS and sensory issues She snowballed into crisis REALLY fast, though. We were late to school every day, sometimes VERY late. Eventually, she wore her PJs to school- and didn't wear panties for more than a year. (we settled on Gymboree bike shorts with soft dresses). I have photos of her when she is 3 and 4 in jeans.... I hope you find your little one doesn't have pandas- it is so impossible worrying about this with two kids- but all too common. Because of our therapist- we use the wort GUTI (get used to it). We would practice with clothing, etc- but she really made very little progress on this front until aggressive pandas treatment. Like all of the kids, I guess.

Just wanted to get everyone's input as we are seeing Dr L next week and will address these issues. 1. antibiotic dosage. My girls are 40lbs (and on 200mg zith daily) and 60lbs (and on 250mg zith daily). Any comments on dosage? Is it enough? Are you doing more? Symptom wise they are doing ok (one is having minor blip), we are not ready to lower it, they are still very reactive to immune challenges. 2. Does anyone know definitively if an IEP can cover for excessive absences? The only accomodation I forsee is frequent absences, and want to request IEP if it will help. 3. Vaccinations: at this point, I plan on holding off on any and all vaccinations (at least this year). I don't know if/what they are due for. Should I ask Dr L for a letter stating this? Will this do for a medical excuse? Will this appease the ped? (starting with a new ped in nj- no idea what their opinion will be- my ped here was easy) Thanks!!

Dosage- my girls are on 200mg/day (40lbs) and 250 mg/day (60lbs) They have had no reaction to the red dye- but I think you can ask the pharmacy to make it without We have not had stomach problems due to zith (do give probiotics in the form of culturelle and florastor: regularly, not religiously) Pandas itself caused stomach aches and problems for one of my kids, though

Well at least we know we are not alone: my poor dd had (still has minor) ocd about germs and sick people but- if she gets sick she could have another episode (which I don't really tell her) so- we work on not worrying if kids around her get sick, and encourage her to touch public door knobs, handrails etc and I try to hide my constant sanitizing of our house, and constant fear of her being exposed to illness I am now extremely neurotic about them getting a full night's sleep, and not overdoing our schedule so much so that if we are out- once 7pm rolls around I get really agitated and want to get them home I worry about what they eat- we try to eat mostly organic I worry about the chloramine in our water if the girls so much as look at me the wrong way, I worry that pandas is coming back even my dh has started secretly diagnosing those around him (coworker's kids, etc) with pandas Sigh.

Thanks for the discussion Vickie! Well- I am pretty anti vaccine these days. I really don't plan on doing any more for the girls, being age 7 and 10, they are both just about fully vaccinated anyway. I don't plan to do boosters- will test titers on something if I think it is important. I plan to evaluate each suggested vaccine in my own time, weighing the risks. We didn't do the flu or H1N1 vaccines last year- and frankly I can't imagine sitting there watching the doc inject them- wondering if it will cause a pandas episode or blip. The only concern I have, is that last year they both DID get probable H1N1. It put them both in a tailspin- the younger who was being treated aggressively at that time for pandas spiraled quickly down into an episode that was luckily stopped with steroids. The older one who was being watched and evaluated for pandas also went into an episode that ended up with her in the hospital for pex. S0- it is not a simple decision. At this time I do not plan on getting the vaccine- but I will be completely stressed once flu/sick season starts. If only I had a chrystal ball....

I have been touched by all of the stories about lyme. Right now, I think this is not the case for my kids- but I strongly think that anyone just starting this journey, or anyone who has a child not responding to pandas treatments, needs to seriously look at lyme. Like pandas, you probably need to see one of a small list of experts. I was struck by how this sounded exactly like pandas: http://www.canlyme.com/goodh.html