dcmom

Tantrums- You need to go see Dr Rosario Triffileti in NJ. (I am formerly from NJ). He has a ton of pandas experience. He is a pediatric neurologist. He can help you diagnose pandas and/or any other issues. I am sorry you are having health issues at the same time- that is really rough. My daughter has pandas, and definitely had a big flair in symptoms 24 hours after recovering from H1N1. The best advice I can give to you, is not to waste time with docs who are not knowledgeable, or who don't treat pandas. Go see Dr T. Get your son on daily antibiotics with a possible steroid burst a bit later down the road. You will get him better...

Kelly- THANK YOU!!

Dut- You are exactly where we were a few weeks ago. My dd Julia came down with H1N1 a few weeks post plasma pheresis. About 24 hours after being fever free, I started to see a re appearance of pandas symptoms. I waited almost 3 days- wanted to be sure, before I used the steroids. She continued downhill those three days, so we started the burst. The first dose or two of steroids seemed to immediately halt the downward spiral, and by about 4 days she was almost back to 100%. She finished the burst (it was one week full dose, two weeks tapering off) a few days ago. While I don't know if she is the 110% she was post pex, she is getting close. She has been on daily zithromax non stop since August- I would keep her on daily zith (if possible) until she stabilizes. So my vote is go for it. My concerns now are: Is this temporary? How long until the prednisone is out of her system, when will we know if symptoms are just being masked by steroid, or have gone into remission? This is her second burst this calendar year. That is six weeks on steroids. What if she gets sick again? How often can we do this? I will see Dr Latimer this week, and discuss with her- but if anyone has any thoughts??

Hi Brooke, I am so happy for you and your little boy! It is so great to see them happy again. With pandas, my priorities really got put in order, and my main goal was just to make sure that Julia's days were as happy as possible. Keep in touch! Eileen

Megs mom- Can you elaborate on "inability to eat foods previously liked"- this is a big one here. With first pandas episode, dd all of a sudden would not eat any of her usual staples. She just said (or rather yelled) that she did not like the food- it didn't taste good. She only got back to eating a more varied diet post pex- although has limited a bit since the flu. It isn't the fear of choking. Any thoughts?

I put flax meal into anything and everything possible, and I do buy the omega 3 eggs.... Although, I secretly wonder if the omegas are a fad.... I have to re read what Marion Nestle says....

That was a great segment! So exciting for our kids! Hopefully the Today show will report on the results... I certainly think it is possible for someone to develop pandas at age 12, why not? My dd was 5- no issues prior. My other daughter, who might have an extremely mild case was 8. I am convinced it is a certain strain of strep (or a few certain strains) that gets this ball rolling. I know Dr T, he is thorough, and would not lightly give a pandas diagnosis. I am sure he did titers, if they were high, bingo, they don't need a case of strep ( I don't put much stock in titers, but he does test them)- that along with sudden onset. I am not saying the vaccines don't play their part though- it is just not as clear to me where that might fit in. I am positive vaccinations can damage kids, but that may be seperate and different than pandas?? Or like the perfect storm, could really rev up the pandas.

I agree about the yogurt, however, if Julia finds out I put it in- she doesn't enjoy her yogurt. Her preference is to get it over with. I take a small strawberry, hollow it out with a knife, and put the powder from the capsule in there. She takes it with a chaser of either another strawberry, grapes or a piece of candy. Alternately, if I have a brownie, I cut a bite size piece and hollow out the middle again... I started buying culturelle and florastor capsules. I don't know why, I like the pre pkgd dose, and we travel a lot. PS- she takes the steroid the same way- the pill crushed up in a strawberry... I have not been able to add anything else either. Her limit is a multi vitamin, once daily antibiotic, probtiotic. I wish I could get some omegas in, but haven't been able to...

megs mom- did you ever (I am sure you have...) try opening a capsule of probiotic and putting it in something yummy. Julia likes it in a bite of brownie or a strawberry. I do, however, find she has a limit to how many things I can give her a day (one with each meal is about it...)

Leslee- thank you so much for your post! We all need to hear stories like yours so much! Especially, that it did take time for healing- it is so hard to be patient. I do have a question for you: I know your son had IVIG, you had some immediate results (within a month), and other results that progressed more slowly. During this time of healing, was he ever sick, and if so did that seem to cause a temporary uptick in symptoms? thanks, Eileen

Thanks Buster! Julkia's relapse was caused by H1N1, that I know, the pandas issues started about 24 hours after her fever subsided. So I guess that is what may have opened the BBB, then the million dollar question is whether there were some residual antibodies still there, or whether the immune system memory made more of these bad autoantibodies. Obviously the first option would be better, the second option would indicate a chronic situation that will need ivig.

Hi, I live in Washington DC. My 36lb dd is on 200mg zithromax per day. When she was first diagnosed, she did 20 days of Cephalosporin, and then 20 days of Amoxicillin. This may have stopped her downward spiral, but that is it. New doc switched her to daily zithromax, and after 20 days she had improved about 85%. If you have already done 30 days of amoxicillin, I would consider a trial of zithromax, daily, for at least 30 days....

In our initial episode, dd cleared her pandas issues after 30 days on daily zithromax. Although, it has not been as clear cut since then, in my opinion (and many others here) daily zithromax has definitely helped to keep this under control. I believe it is key. My dd is 36 lbs and on 200mg of zithromax per day. Amoxicillin did nothing for us. I really think you need to get to Dr Latimer or Dr K asap. They will give you the antibiotics your son needs- while we see Dr L, I believe it can be said for both that they are responsive to the changing needs of our kids- and willing to "experiment" with different doses and different antibiotics, as well as pex and/or ivig- until you get results. My thoughts are with you and your family. You have been through so much....

Hi Mommd- I unfortunately also think it is the memory thing, and I guess that is why this becomes chronic for a lot of our kids. But I also want to throw something else out there- Carter's numbers (I assume are ASO and AntiDnase?) could also come from an underlying infection. These are not thought to be the antibodies that attack the brain, right? Was he on full strength abs the whole time since pex? Either way, the IVIG will help that also. Right now, Julia is pretty good- eating, sleeping, doing homework, dressing, bathing, no rages, etc. However, she is still struggling with "stuff" that was not there before pandas, or post pex (before the flu). For example, this morning when we got to school, she almost couldn't go because a tag in her tights was bothering her-however unlike in full blown pandas, she did get it together and keep the tag (without any prompting from me- i told her I would take her home to get changed). So there are low level issues there. She still has two more days of 1/2 tablet of steroid left. I am hoping she holds steady after the steroids. I am hoping to avoid IVIG- as long as everything holds, we will re evaluate in January with probable trips to Dr T and Dr B. Please keep me posted on Carter's progress.... Eileen

Hi all- I am certainly tempted to homeschool- but my situation is complicated by the fact that she has an older sister. Her sister had H1N1 first, Julia caught it from her. Also- I don't think I would be ready to homeschool both- so right now it is a wait and see..... I don't know why the relapse after pex. Two thoughts: either unfortunately her immune system has "memory" from those autoantibodies, and they will be created anytime her immune system is activated- in which case IVIG will be our next step. Or, since she only had 3 rounds of pex (Swedo did 5 rounds) ALL of the bad antibodies were not removed. Buster? Eileen

pandamom- I am so sorry for your son and family. Yours is certainly a story that shames the medical community. Do you have a good pandas doc now? There are only a handful. Would you consider taking a trip to see Dr Latimer in Bethesda, MD or Dr K in Chicago? Your son probably needs plasmapheresis and/or IVIG along with full strenght antibiotics long term. Please fill us in on your son's current details and treatment.

I also got an advertisement from this poster. Please know that you can block private messages from her on your messages page. I also sent a message to Chemar to find out if there is anything else that can be done....

Just a quick update: At the time of my last post in this thread, Julia was about 110% improved after plasmapheresis. Unfortunately she came down with probable H1N1 the next day. Luckily, I was in touch with Dr L, who prescribed tamiflu. This took care of the flu about 12 hours after it started. About 24 hours after that, we saw some pandas issues start to come back. The next few days continued in a downward spiral. Symptoms were: emotional lability, tantrums, irritability, pale, glassy tired eyes, school refusal, quick to cry, somewhat depressed or cranky. (Julia is 6). We waited about 24 to 36 hours after these issues started, just to see if it was really a pattern. At that time we started a steroid burst. (15 day) The steroids stopped the downward trend immediately, and after approx 4 days we started seeing improvement. She now has two more doses to complete the fifteen days. At this point, she is much better, although not the 110%. I am hoping to see continued improvement, although constantly worried that she will backslide when off of the steroids. It has been a rough school year for Julia, minus the pandas and pex, she has had a stomach virus, the flu, and now a cold. I am concerned about how frequently we can, or want to, use steroids. Julia is VERY tiny for her age, that she really cannot afford not to grow for a few months of the year regularly. I am considering pursuing IVIG, but am waiting (while things are calm anyway) until the new year to do anything more. Rest, and calm environment, still seem to be key in keeping her well. School is such a grind- but I would like to keep her there. We see Dr Latimer next week, for another follow up (I think we will continue to see her bimonthly for now- this is such a luxury for us), and may discuss some possible school accomodations for julia. So it is a mixed bag post pex for us- it is wonderful to get a glimpse at the true child (so I know I am not crazy), but painful to have that taken away, yet again. At this point, I am hopeful that we can just keep her at this 90% well level for a longer period of time.... I would be interested to know how others are doing post pex....

Debbie- Is she on steroids? I think they can cause heart racing... My daughter has something (maybe keritosis pilaris) on her knees. She hasn't always had it. It looks like small white (skin colored) bumps. They are not noticeable from a small distance. My dh thinks they are nothing... Is this what your dd has? Eileen

Hi Brooke- I really don't have a ton of advice. Make sure they administer IV fluids in the few hours preceding the pheresis. Ask the nurse, if they can do the vitals at 9pm and then not until morning. The first two nights, they woke Julia up twice in the middle of the night. Finally a smart nurse changed the orders, so she could get a night's sleep! Be prepared that they need a blood sample each early morning- it cannot be taken from the central line. The pheresis nurses really know what they are doing, in our case- more so than the doctors, so listen to them. Don't be alarmed if you have to skip a day between treatments- it seems many of us have had to do this for different reasons. Since you are local- if your son is picky, bring some favorite foods and snacks from home- I did that, and it was very helpful, esp the first day. Be on top of ordering your son's meals, and don't hesitate to ask for something special. Make use of the child life specialist to bring crafts and games to distract your son. Keep up the daily antibiotics afterward. Keep up on dental visits to avoid any dental work. No vaccinations of any kind. I would set an appt with Dr L for about one month post-pex. I think it is important to have her document any changes. At that time she also gave me a steroid burst prescription for just in case- which we ended up needing. If I were you, I would consider keeping him out of school until January- if possible. It is a stressful few days, for sure. Hang in there. Julia really had unbelievable improvement, although keeping it is what seems so hard. Feel free to call me.... Good luck, and definately give me a ring when you get home. You, I and Tmom will get together in January... Eileen

Someone just posted a news article on the TS board about the "sneezing girl" going to see Dr Triffileti! Go Dr T!

Okay, I am frustrated. So, would there be any way to get a few docs in a room together? I am thinking: Dr Latimer, Dr Triffileti, Dr B (from CT), and Dr Nicolaides- possibly Dr K, together at a meeting in NY? I mean all have lots of clinical experience, but somewhat different paths. If we could get them together to have a few hour conversation.... Maybe even a conference call? Does anyone have any ideas or experience with this type of thing?

mati's mom- Hi- we are on a steroid burst now, so I thought I would chime in. I think, unfortunately, both docs might be right Like many are starting to think about pandas kid- maybe your son does have an underlying infection. So- of course that needs to be treated. While I am all for the natural, do no harm way of treating illness- I can't help but think this is a situation that seems to need antibiotics. I mean, I think the invention of antibiotics revolutionized medicine for the good- they are definitely needed sometimes, not all things can be cured with a more natural route. So, I think there might be more harm in not trying antibiotics. Secondly- if there are no tics, I would consider the steroid burst. While I agree it may be a bandaid that only lasts a couple of months (but hopefully not- some have found more lasting results)- wouldn't it be nice to have that symptom free time, while you are addressing the underlying infection? Of course, check with Dr L about lymes- I know nothing about that. My dd is on a steroid burst now, after a flare up post H1N1. It stopped the flare in its tracks. Now we are tapering off, so we will have to wait and see how much time that has given us.... These decisions are so hard- best on whatever you decide- only you know your child, and I think you have to go with your gut....

MomMD- It is in the eyes. Julia is also coming out of an exacerbation post pex, and on steroids. I can't tell you how many times I have said to my dh " but look at her eyes.." It is heartbreaking

chap- that is great about the zithromax. We started with a two week course, when it just about ended I called the doc and asked to extend it two more weeks- by the end of that course we had seen pretty decent results. Hang in there and be persistent with the docs ...