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My daughters ranged from age 6-13 when on their steroids & they each started at 60 mg (maybe the littlest one started at 50mg?). And it was 60 for a week-- then down to 40 mg-- we started seeing improvment at 10 days or so. So-- maybe we would not have seen the same improvement on a lower dose? Can't say for sure. If I were in your shoes, I would want to try them again and at a higher dose-- I think tpotter may have sons that are your son's age in similar presentation-- though I might be getting her (I assume everyone posting on here is woman-- sorry to offend any of you men out there!) mixed up with someone else.

I am agreeing with JAG10-- I think you need to see if Dr B will give you a longer course of steroids. If you started at 60 (for only 15 days)- that does not give very long on the highest dose, correct? I have 2 kids with PANDAS, and another with probable PANDAS. Between all of them we have done 8 "steroid months". A month = means a week at 60, a week at 40, a week at 20 & on down. Once our PANDAS doc (not Dr did 6 weeks of steroids for a particularily big crisis. We saw improvements at 10 days to 2 weeks with each one- though the sickest & longest affected kid did not show a whiz-bang improvement, except for the first time we tried the steroids. Also, the steroid improvement did not last more than a few months most of the time. Thinking of you tonight & I am glad you are on the forum. There are lots of people here with very sick, older kids.

Well- hard to attribute anything to one particular cause right now. she is one month post pex and just finished (today) one month of Clindaymcin. She has just started valium and riluzole about 10 days ago. I am so thrilled at how she is doing. To the average (read- non-PANDAS parent) there is much to be desired. We have very specific, quantifiable improvements. I am so hopeful. She did do riluzole about a year ago and I think it was helpful then. She only took it for about a week, though, and then refused it. I really hope the Namenda helps. I think someone on here (Melanie?) has a child who uses Namenda.

Anything about glutamate interests me. Daughter is on riluzole now. Any info you can expand on? thanks

HI dcmom! It was a rheumatologist who recommended Enbrel for my child, once we finished treating her infections (known lyme & very high EBV). This was even before we ever saw our PANDAS doctor. Our PANDAS doctor and another doctor who we spoke with (parent to parent, not as patient/doctor relationship) both think this is a great avenue, but as yet, no one really seems to go for it yet. I did see a youtube video by Dr Jory Goodman (I think that was his name) called the Evil Scourge of PANDAS and he mentioned interferons as treatment. Sounds good to me! momofadult-- your child (with the prednisone effect and worse than inital onset presentation) sounds similar to mine, though she is only 13 now & strep was not a known factor. My other child had clear strep onset & strep with exacerbation. Have you read about anti-NMDA receptor encephalitis? That usually progress to hypoventilation and seizures, but not always. Where do you live? We are a month post pex and we are seeing big improvements- my daughter is also on small dose valium BID and riluzole now. I have found steroids have been so helpful to my children. Best Wishes to you. Feel free to PM me if you want.

two of my children have had pex for PANDAS~ My daughters had their own plasma removed and replaced with a filler. They each had their plasma volume (based on weight) x 4.5 exchanged over 3 days. They each had central lines (one femorally and the other in her neck). IVIG as not done until 4 months for one daughter. She had been sick with PANDAS for only abotu 18 months when it started and in that very severe exacerbation for about 6 weeks. The other daughter had been sick for 3 years (& in severe PANDAS state for almost that long)It helped- but it took 4-5 weeks and then the success lasted for only a few weeks. She had her second pex 3 months after the first and IVIG was recommended 4 weeks post pex. She will be getting IVIG- but it will not be until 7 weeks post. There are several reasons for that- but our doctor does think IVIG post pex (and it was recommended monthly x 6) is key. As far as immune modulating therapies... sign me up! I have gotten little hints of drs wanting to try rituximab or cellcept-- but no one in practice yet- as far as I know-- for PANDAS, anyway. Autoimmune encephalitis- yes- but PANDAS, not yet! How long has your soon been sick-- it is clearly PANDAS?

just another little chime in here-- maybe you do not need to hear it again... but April is way too long to wait. If st Louis is close to you-- can you call Dr K right away? I am on the east Coast and do not see him- but Chicago must be closer than DC or CT! There are other doctors elsewhere- look at the topic "doctors we have found helpful"~ I also have 2 daughters with PANDAS (both 10 at onset- about 14 months apart). Every kid obviously is different, but this path can truly be a train going downhill on icy tracks with no conductor! Keep that April appointment (or call and beg for a sooner one) but get a few PANDAS specialist appointments where ever you can in the meantime.

the links did not seem to work ( for me anyway). your description sounds similar to my child's movements. They were called chorea. Videotaping is a good idea! There have been several times when either for our purposes, (to compare changes in movements) or for doctors (whether for her diagnosis or for their research) have wanted to see video. Keeping a written timeline of symptoms/medications/changes/etc is also extremely helpful. You think you will never forget, but as things pile on-- you will!

Well, I have one child (125 lb 12yo) on 25mg. She is doing very well- we are also 10 month post pex & 7 month post IVIG. I wonder if she really needs it- but she is afraid to stop it yet. The other child was on clomipramine 50 in am and 75 in pm or something like that-- she was 11 at the time and much smaller- like 80lb. One thing to keep in mind with clomipramine- that our first psychiatrist did not do- but a second opinion at different university did- is that clomipramine metabolizes into two different things in the body. I cannot remember all the details, but they added something else to "Correct" the imbalance of these metabolites. I cannot remember all the details now, sorry! It was not an issue until she had been on it and high doses for several months. It suddenly did not seem to help anymore. They felt that this metabolism issue was the cause. I wish I had more details on this-- but I bet you can look it up. They did also add Abilify at one point to "augment"it. That may have also been the attempt to correct metabolites.

Not those specific symptoms--- but we have had some success with clomipramine.

IOCDF link At the bottom of the IOCDF donate page -- it states how you can specify what kind of research you want to support. It lists PANS/PANDAS. The letter I am referring to came in my mailbox-- the one at the end of my driveway HE writes: "Recently, I have become more interested in the increasing evidence that infectious causes of OCD are very important, and we see young children who develop OCD suddenly after an infection (now referred to as Pediatric Acute-Onset Neuropsychiatric Syndrome or PANS). The children are routinely misdiagnosed and mistreated when correct treatment could prevent a lifetime of unnecessary suffering. Hundred of children with OCD are stuck in their illness and missing their lives despite the efforts of very dedicated parents. We need to know more about this and research is the key." AMEN TO THAT!! I am looking for my checkbook now...

at least the plea in the first paragraph is! The letter was written by Dr Jenike. In case you normally trash your "junk" mail I thought I would point it out. I will say that I never trash IOCDF mail-- & if you are not a member- I would recommend you join. The support I have received from their website, the conference and the things my older children have read have been most helpful.

My 13 yo has at times given us a glimpse into her "world". At the times when she was doing her best (and she was struck with "only" OCD) she would tell her little siblings to not be afraid, the fever is coming. That is how she described it to them. She knew when the OCD was becoming too much. She would warn them, as the OCD required her to rub their hands and it was very frightening to the little ones- as she would frequently scream while she did it. Sometimes, now, she says that the her brain is not working right. She has described it sometimes as running miles at a time and other times like her brain is not "really there". She has short-term memory loss- like having no memory of being told of the death a family pet. She was told one day, reacted appropriately; 2 days later, she was truly surprised when it was discussed again. One of the things that I am so taken by- is the true remorse for her actions during and after the episode. That is so heartbreaking to me. It is one thing to pitch a fit in a temper-- but to feel so sorry about something that you have to do to hurt others-- guilt is not something that needs to be added to their plates. In reading about encephalitis lethargica, the juvenile pseudopsychopathia type is similar to what I see & read about many of our kids doing. They would commit atrocious, destructive acts and all the while apologize for what they were doing. That is so sad to me. However, my daughter has no memory of huge blocks of time- months even- when she had her worst exacerbations. Perhaps self-protective- perhaps neuro-based? Emmalilly, pandas16-- did you experience that? Maybe that is specific to my daughter and not to PANDAS....

MELANIE!! PLEASE DO NOT panic yet! Both of my children had pex. One saw results at 5 days. The other did not see results until 4- 5 weeks. I know you are dying inside, but please, dear.. try to hold out a little longer. My 4-5 week improved child- she remained improved for only a few weeks. she repeated pex recently and we are seeing improvments now- going into week 3. Go ahead into other treatments, too-- namenda, IVIG, whatever-- but please know that it takes time. Our doctor told me that another PANDAS researcher said that it takes 21 days for the basal ganglia to "calm" after the plasmapheresis. I have no idea if this is "written" anywhere- but it helped me put thing in perspective.

cannot say 100% but if i recall, i think MGH is not a great PANDAS place to go-- I think I remember reading that more than once on the forum. that amount of money you mentioned would go quite a ways with Dr B (or any PANDAS doc, really!) there is a recent thread on the forum about Northeast Docs-- search for it and hopefuly that will help. Also, my daughter developed grouchiness & sensory disorder after strep. the OCD did not start until her next strep--7 months later.

in some states, the lab is not required to (or maybe not even allowed?) to give you your results. i am in Virginia and I have not been able to get labs straight from quest or lab corp. I researched it once and I am pretty sure it is state law issue. personally i think it is riduculous. but, no one asked me, i guess!

Alex-- the one who relapsed did have her tonsils out over 2 years ago(per pex) The one with the strep exacerbation and who is doing great- still has her tonsils. So, I do not think that is the problem here. At georgetown they do the equivalent of 4.5 exchanges, but doubled up= so you are there three days. I think some one somewhere said that the original pex study did 5 exchagnes over 5 days-- so a little more time was involved. I wonder if that is better? But I imagine it is a cost issue & as i told our doctor, I am so thankful that I have been able to get pex at all-- much less heading into our third time (with 2 girls). I am very aware that there are people here who would do anything to get pex once. one daughter had central line in femoral vein & the other had it in her neck. It was second choice position (neck) but they had difficulty getting it in her groin. At the time my girls were about 5 ft tall & one weighed about 125 and the other closer to 150lb.

I know that somewhere I have read (on the forum) about docs at UPenn, not being PANDAS-believers- that part is not my concern... I am really wondering if one of my daughters does really have PANDAS-- I really feel like there is something more going on here. We are having some more testing and PANDAS treatment done (which is the same kind of treatment for any kind of autoimmune/paraneoplastic encephalitis)-- but I am thinking about going there for an evaluation-- to neurology, I guess. I have found case reports of multiple NMDA case reports that sound eeriely like our own. any one been there?

Hi Melanie, both of my daughters have had pex. they were 11 & 13 at the time. One has been is sick (severely disabled by PANDAS/PITANDS) for over 3 years- Pex was not until almost the 3 year mark & 2 months post IVIG. She was improved by 60% by week 4 or 5, but she has relaped and we are looking at repeating it & doing monthly IVIG after this plasmapheresis. My other daughter was about 18 months into moderate (with severe, though remitting, strep-associated exacerbations) PANDAS and about one month in to an exacerbation that was not letting up. By one week post- she was so much better. It was amazing. By a month- to our eyes- she was almost 100%. she still had some internal OCD. She started to decline about 4 months after & had IVIG. We are 10 months post pex & there have been blips- but besides school issues- she is doing great. I think pex & steroids are the thing for my girls. I have another child with mild PANDAS-symptoms. If she started to "go down that road", I would do it again in a heartbeat. It was so helpful for both my girls.

My daughter had this significantly -all extremities and her face, very dark purple lacing. It developed during IVIG and lasted a week- she also developed hemolytic anemia as a consequence to the IVIG. I do not know if the livedo reticularis was a "sign" of the ultimate reaction that was hemolytic anemia- but I think it is an outward sign that her body was reacting to something. I know that is a different situation than you are dealing with. I bet the increase in abx helped! Hope the improvement maintains and even continues!

I would go ASAP! Sooner you get labs, (maybe) the sooner you get treated.

I see where it could help specific joints,and systemic auto-immune sufferers think it maybe helpful to them- that would pretty neat if it worked for PANDAS! The thought of getting my kid (especially one with OCD!) to stand for a bee sting would be unlikely, unfortunately. and this from the mouth of a beekeeper & bee-lover

There is one. Pandas-syndrome.webs.com It is kind of quiet and apparently there is kids Pandas facebook, but we do not do facebook. My daughters use the page I listed above. You cam Pm. Me if you would like

Encephalitis Lethargica powerpoint In case any of you are interested, I thought I would post this. It is 2 years old & from Hong Kong, I believe; however it is very pertinent to PANDAS (or whatever similar disorder is affecting our kids.) I also ordered (in print & e-book- I am such a nerd!) the new Encephalitis Lethargica book by Joel Vilensky. It is great for those interested folks.

I actually looked up hemiballism & videos last night (ironically, before reading your question about it). I would day it exactly described my daughter's movements. Hers also subsided as the rages did. I will ask the doctor today about it and get her take on it.