MSmom

Rheumatic fever and variants of it are making a comeback, and the doctors don't recognize it at all. Worse, if you mention it to the doctor, they look at you with a condescending look, even though you may know a LOT more about it than they do. (If I sound like a person who has been there, I am.) My daughter has had bouts of it 3 times (with subsequent PANDAS attacks.) It's a nightmare. She took over a year each time to recover from the physical effects. Deathly ill for months at a time. She is 16. It has taken away her childhood. Looks as though PANDAS is a variant of Sydenham's chorea, both affecting the basal ganglia. Sydenham's chorea is one of the markers for RF. I know I am preaching to the choir here, so many here already know this. I wish more doctors knew it. (I think a one year old might be a bit young for RF though--Another overlooked cause for febrile seizures in a one year old is vaccination. Happened to my nephew, but no doctor would even consider the MMR he had just a week prior as the cause.) Pam

Sorry about posting another steroid burst question. I am curious. If my daughter does not eventually respond to the 5 day steroid burst (she is 19 days post burst right now with no response), how will this be interpreted as it relates to IVIG? I mean, is this an indication that she will not respond to IVIG? I know the steroid burst is also a diagnostic tool, so I'm confused about that too. My daughter definitely has PANDAS---no question about it. We and the doctor agree it is a classic case. So could a non-response to the steroid burst be interpreted as an arguement that she doesn't actually have PANDAS? (but she does!) I know she might possibly still respond at this point, but at day 19 I am getting less hopeful. Also, I have been told by yet another integrative physician, whom I trust (so that's 2 so far), that IVIG would only help for a while anyway, and then quit helping, and that introducing viruses and other unknowns into the body via IVIG isn't worth the risk, for an effect that will wear off. That is more fuel for my already confused and tired mind. I'm getting a bit discouraged about the whole idea of IVIG, because on this forum I'm seeing less positive and more negative things about IVIG it seems. Or maybe that's just my perception of it. I'm glad to have a place to post these questions. Don't know what I'd do if I didn't. Pam

Thanks so much for the replies. I'll remain hopeful. She is no better today. I may have been unclear in the way I wrote my post---We didn't do a taper--just 5 days of prednisone, and she is now on day 18 post prednisone. Thanks for the interesting link too. These autoimmune things are all so weird and connected. Hope you are seeing improvement at your house. P On our first burst it took 21 days...doc k says up to 4 weeks... doing taper...same as you, today is day 6...last couple of days were nice.,better.not great(tics)...... today...vocals up(throat clearing, sneeze sound)...but motors are still better less chaining in that area...... so not sure.....i thought we were seeing earlier resluts this time...might have to wait 21 days?? for us i wonder if like last time..even though we are smarter this go round and added difluacan, that maybe yeast is an issue for the vocals

My 16 year old daughter did a 5 day steroid burst and is on day 16 now, counting from the first day she took it. She is really not seeing benefits in her mental condition. Her PANDAS diagnosis is definite, so we were hoping we'd see something good from the prednisone. (We have absolutely no doubt it is PANDAS---she had a rheumatic fever type illness as well.) After the first couple of days, we thought her mood was a bit brighter, but that really hasn't continued, and she is worrying just as much as ever. She is so scared that this means that IVIG won't help her. It scares me too. She was feeling so hopeful, but now not as much. Could we possibly still see some improvement from the prednisone at this point? (She has been feeling PHYSICALLY a bit better with the Prednisone, which is to be expected--a little more energy. She has physical autoimmune issues for which she takes Plaquenil, a lupus drug.) P

It's interesting to read the replies. My daughter has had decreased vision and blurred vision, and she has thought all along that it was related to the strep problems. She is 16 and is both a little nearsighted and farsighted now. Pam

Kay, my main uveitis symptoms are discomfort, irritation, redness, and there is a discharge from my eyes, especially at night. It's watery during the day, but does leave a crusty residue in the morning when I wake up. I haven't had a swollen eyelid with it, but I don't know if that is a symptom of uveitis or not. Pam

Just curious if anyone here has ever been diagnosed with uveitis (autoimmune inflammation in the eye.) I was diagnosed with it about a year ago, at about the same time my daughter became very ill with her post strep problems. I was referred to our big retina institute, treated with steroid eyedrops, and told that usually, no reason for the uveitis is found---it's just idiopathic. Recently I stumbled across several journal articles online, referring to "post streptococcal uveitis," which I find particularly interesting, given that the eye specialists I saw were apparently ignorant of it. I just think it's interesting that my daughter's PANDAS and RF like issues were happening at the same time as my initial uveitis problem, and I'm now in the midst of a uveitis flare at the same time my daughter is having a flare of PANDAS symtoms. Maybe it's a coincidence...

I know this is off topic, but I just can't figure out how to do this, so I'm hoping someone here will know. How do I change my display name? Or is it even possible? The Help page implies that you can, but there is no where to actually do it. Thanks. Pam

Again, I'm sorry for my ignorance. Is CamKII a test for inflammatory conditions? Just wondering what it actually tests. I'm curious, because my daughter's sed rate and other inflammation tests seem to always come out negative. P <<CamKII seems unrelated to ASO and AntiDnase. I believe CamK levels fluctuate w/ symptom severity...those who have tested both during exacerbation and remission have found higher levels during exacerbation. Some children never get rises in ASO and AntiDnase titers, despite multiple positive strep cultures. Really, the information gained from those titer levels is very limited...and those antibodies are not the ones that cause symptoms. >>

Please bear with me, as I'm full of questions today. Hopefully none of them will sound too stupid. I am planning to have CaM Kinase testing on my daughter (and my son in the future.) Should the test be done only during a time when the ASO titre or Anti Dnase B are high? Also, should it only be done when they are having OCD symptoms? I guess I'm asking if the CaM K results are only valid when the kids are symptomatic, or is this a test that remains stable, regardless of the symptoms. I'm so confused, because my 16 year old daughter is having definite PANDAS symptoms right now, but her ASO titre and I think her AntiDnase B as well are back down in the normal range. I'm guessing that, theoretically, they could have had a strep exposure so many weeks ago that their levels are already back down. Or, maybe something else triggered the PANDAS, without a strep exposure (?) Is that possible? My son is having some symptoms now that APPEAR to be PANDAS symptoms, but I'm less sure his is PANDAS. His ASO is normal right now as well. Thanks so much, Pam

I'm reading this thread with extreme interest. My daughter has had a very rheumatic fever like illness along with her PANDAS symptoms,3 different times. She developed a heart murmur and had palpatations and chest pain (among many many other symptoms that were RF like.) None of the doctors around here would listen to me, and I self referred her to a cardiologist here (a very RUDE, condescending cardiologist.) Her echo was normal. She also had a normal SED rate, and her pediatrician felt that if it had been rheumatic fever her SED rate would have been elevated. But in every way, the illness mirrored rheumatic fever. She was ill for months each time, and barely unable to be on her feet more than minutes at at time. The rheumatologist she has now called it post strep arthralgias, but it was so much more than that. I do sometimes worry about her heart, and wonder if it should be monitored more closely. We are just now getting some appointments for her PANDAS, so I'm going to bring up the heart issues when we go. Pam

Wow, I can not thank you all enough for all of these informative and encouraging messages. I am going to print out this entire thread! Thank you all so much. I am VERY grateful for this forum. Pam

Thanks Vickie. I did read the summaries, but I can't figure out whether the presentations will be very basic or will hold any new info. Pam

I am trying to decide whether to go and hear the PANDAS presentations. Will there be new info that I can't get here at this forum, or are the presentations going to be geared more toward people who are new to PANDAS? Thanks! Pam

I have been reading the forum, have talked with some moms(thank you!) and I am feeling paralyzed with confusion about which treatment path to follow, which doctor to see, etc. Long term prophylactic antibiotics seems to have worked for some, IVIG seems to have worked for some--I don't know which way to go. Would love opinions/advice, as my daughter is 16, and I know that at her age, getting a handle on this cruel illness is critical. She has had bouts of very severe illness following strep infections at least 3 times. These were SEVERE physical illnesses that had her bedbound for months. It wasn't until the last bout, this last February that I made the connection with strep. Her strep had gone untreated for weeks. I was questioning whether she might have rheumatic fever, but when you ask physicians about rheumatic fever, they look at you like you are crazy and tell you that no one gets that anymore. She presented to me like a classis case of rheumatic fever (but her inflammation markers were not high when they checked them (?) Can't figure that out.) Along with the physical illness came the separation anxiety, the worries, doubts, anxiety, ADHD behaviors, handwriting deterioration. We could get no help locally. (We finally, this past year, found a rheumatologist who agrees she had a post strep reaction of some sort. But he only puts patients on prophylactic antibiotics if they have evidence of heart involvement, and I don't know that he knows anything at all about PANDAS. We are in a very PANDAS ignorant/hostile area of the country.) She was unable to go to school or have a normal life. She has zero stamina. Her doubts, intrusive thoughts, and worry have all but destroyed her social life. We were told by one integrative physician that she has PANDAS (he was following her ASO titres, and at that time I knew nothing much about PANDAS. I know now for certain he was RIGHT. PANDAS, without question), but he does not prescribe antibiotics for PANDAS, as he would rather fix her immune system over the long term. He has also advised us against IVIG, as he feels it should be reserved for life threatening illnesses only. I trust him, because he has helped us in so many other ways, but I feel that she needs more immediate help. In between infections, she has much less anxiety and worrisome thoughts. It seems to always simmer just below the surface and explode with strep. When I say explode, it is that sudden---she does not even want me to leave her room at night when she is like that, and she worries about anything and everything she has ever said to anyone.) My gut tells me to find someone who will put her on prophylactic antibiotics, despite the harm they can cause, because I never ever want her to get strep again and go through any of this, both the physical and the mental destruction, again. But then, I hear that, because she is an older child with PANDAS, maybe IVIG is the way to go. Thank you for reading this if you have gotten this far. I guess I am hoping for insight, experiences, anything that can help me. Pam

I am reading this board like crazy, and appreciate the info so much. Caryn and Wendy's conversation intrigues me, because, like Caryn, my daughter has severe allergies, gluten intolerance, etc, and we had had her health so greatly improved from all of the efforts of her DAN doctor(extreme diet changes, supplementation, etc. He also wants her to take allergy shots.) My daughter's DAN doc agrees she has PANDAS, but chooses to fix the gut and immune system and does not prescribe antibiotics for it. I agree with his treatment and I know he is correct in what he is saying, but my daughter is 16 and needs to feel better NOW so that she can salvage a bit of her teenage years. So we are going to see Dr. K, and hopefully get her on antibiotics (in addition to all of the immune repair that her DAN doc is doing.) I know for certain hers is PANDAS, because of the dramatic onset following her last strep infection. Pretty much a textbook PANDAS presentation. She has had bouts of this several times over the last 5 years, as well as rheumatic fever type illness 3 times. Her immune system is a total mess, and she has many allergies and some weird antibodies that are elevated. She had a severe allergic reaction the last time she took an antibiotic, though, so I am worried. While I know that fixing her gut and allergies, and therefore her immune system, are the best long term fix, we are still going to look into the antibiotics. My son, who does not have elevated ASO or Anti-Dnase B titres has had several bouts of almost an identical illness, so I am thinking he most likely has some PANDAS as well. He has not had the rheumatic fever like illness as severe as my daughter has however. I guess the point I am making is that, since I want my daughter to have some kind of life while we are fixing her immune system, we are going to do the antibiotics also. Pam

Where can I find an expert on PANDAS? I am in Missouri but will travel. Have any of you had any experience with Dr. Fuhlbrigge in Boston? Thanks, Pam