Rheumatic chorea

[mom md]

My son Carter will be eight next month and he has just been given a diagnosis of Rheumatic chorea or PANDAS. I am a physician myself and they appear to be different. Carter 's symptoms are primarily difficulty in stopping moving and he appears to have chorea like movements. His movements are bilateral and very dance like. I have caught him on two occasions playing the piano but usually the are dance-like. I know tics are repetative and his seem to all be a little different. He has had a few tics but most truly seem chorea like. According to my reading chorea is extremelly rare but he fits the desiption. His ASO titer was 1750IU/ml and his antiDNaseB was 1320IU/ml. His ESR and CRP were negative which makes me think this is a reoccurance. Looking back his symtpoms started at the beginning of kindergarden and truly waxed and waned. Since November they have gotten much worse. I was given the ADHD, anxiety, OCD, PLMD diagnosis but the chorea like movements did not fit. Finally someone check his titers and it all seems to make sense. We are seeing a pediatric cardiologist Tuesday and are trying to get into a neurologist. From my reading on Syndenham's chorea it seems 89% of children recover within 2 years even without treatment but reading these forums makes me a little worried. It sounds as if these relapses are fairly common and can last for much longer.

He is on amocillian so we will see what that does. If anyone have any helpful tips on managing the chorea type movements please let me know. He is emotionally labile and has very poor sleep. He has had some memory issues, headaches, and obsessions too. I can manage these OK at this time but the moving is really disruptive at school.

[EAMom]

Welcome mom md,

 

This would be a good article for you to read http://www.ncbi.nlm.nih.gov/pubmed/16970875 I haven't found a free full-text version online. I have one in the PDF version that I could e-mail you if you pm your e-mail.

 

I believe Worried Dad's son (maybe he'll chime in with more info.) was orginally diagnosed with Sydenham's Chorea but now the current diagnosis is PANDAS.

 

What's PLMD?

 

I wouldn't expect a child with PANDAS to recover within 2 years (maybe that is one difference between PANDAS and SC) unless IVIG or PEX was done. Also, with PANDAS prophylactic antibiotics are very useful but don't work for all or control symptoms 100%. .

 

Amoxicillin works for some kids with PANDAS. However, a lot of us have kids on Azithromycin (or a Cephalosporin) b/c the Amoxcillin didn't "cut it".

[EAMom]

I should probably ask if your son has had throat cultures (in the past or more recently b-4 starting abs). PANDAS kids can be strep carriers, thus culturing positive for a long time {months/years} if not treated. Our dd was still throat (and perianal) GABHS culture positive 2 mo. after her likely strep infection (FEVER, onset of behavior change, other kids in class sick with strep).

 

To further complicate matters, many PANDAS kids (maybe mainly the ones who are carriers??) show no signs (no fever, no sore throat) of strep, other than behavior change (or tics) when they do get an infection. Also, sometimes PANDAS kids will throat culture neg. but end up having strep hiding out in other areas in the body (eg. sinuses).

 

I was trying to figure out if strep carriers tend to have low titers (or not). Dh asked a strep expert about this once and he said this wasn't known. A lot of people assume strep carriers will have low titers but I don't think this is necessarily true.

 

Also, I don't know if kids with SC can be strep carriers. (??)

 

Anyway, if your child is a strep carrier, the strep is likely intracellular and Amoxcillin won't be able to get at it. Azith. is what you want.

 

Any arthritis? I suppose the ped. cardiologist will check for cardiac involvement?

 

Just, a warning, many on this forum have not had good/helpful experiences with neurologists. A lot of neurologists simply do not know much about PANDAS. Hopefuly you will have better luck. Many will say flat out "I don't believe in PANDAS." Just wondering, have you considered seeing a pediatric rheumatologist or immunologist?

 

So, at this point are they mainly trying to figure out what your son has PANDAS or SC?

[mom md]

Thank you for your reply. I talked to a pediatric infectious disease docotr and she did believe in SC and PANDAS but still did not have much information. She has only seen two kids in her career since she works primarily in a hospital. She is someone I went to medical school with and now lives in Houston. She told me to call a pediatric infectious disease doctor here in Charlotte. I spoke to one on the phone who said she would help me with treatment and following titers but wanted me to go see a neurologist to help us. We were being seen by probably the best pediatric neurologist here and she recently left her practice to start a sleep practice. She has a non-compete policy so we can not see her for anything but sleep but I e-mailed her and she thought the post-streptococcal auto-immune dx made sense. Tomorrow I am going to call the pediatric neurologist and rheumatologist and see where I get. I don't know if we have an immunologist but I will make that call too.

Carter seems to meet the SC diagnosis better. He is doing OK with his school work but literally can not stop moving. His movements are continuous and wave like-they are not repetative like tics. He looks like he is dancing. I decided to take him off his neurontin which was given to him to help him sleep. I want to really see if the antibiotic does anything. Before he was diagnosed with SC he was given a diagnosis of PLMD by the neurologist. PLMD is periodic limb movement disorder. He kicks and arouses anywhere from 8-14 times an hour. He is also taking iron supplementation to raise his ferritin which is supposed to help. His movements seemed a little less today and I hope that was because the antibiotic was helping, but yesterday they were awlful. Also, interesting enough my other son was diagnosed with strep throat yesterday. He awoke with a high fever and I took him in. He is on Clindamycin because he had a funny sore on his foot that worried me and the pediatrician for MRSA. He seems to be doing well today.

I spoke to my friend today who is a neurosurgeon today and he said he would do some legwork around town and see if he could find anyone else to help me. He said the infectious disease doctor I talked to was great. From what I could tell she believed me but did not have much experience treating it. I really feel he has SC and just want someone who can sift through the literature and come up with a treatment plan. He has not had any arthritis only muscle fatigue but primarily at the end of the day. The neuropsychiatrist that made the diagnosis believes strongly in it but I don't think he is up to date on the literature but in a fix he could help me too. I think he thinks SC and PANDAS are part of a pectrum of disorders.

I have completely given up on my pediatrician. He wants to help but I can tell has doubt in the disease. There is someone in their practice who did an infectious disease fellowship and he said he did not think PANDAS exists. He stated he wanted to see something besides retrospective studies...and I replied..."well while I wait should I just watch my son deteriorate before my eyes!"

I have no problem bypassing my pediatrician altogether and will probably switch groups when this all settles down. I have two pediatricians I work with which said they would be happy to help me through this but once again they have no experience. I know there is some doctor who is a movement specialist in Chapel Hill if I can't get help here.

Unfortunately I was unable to get his throat cultured before he started the antibiotics. I called my pediatrician and by the time we talked he had already had three doses. I have no idea if he is a carrier. I threw out everyone's toothbrush today and when we get back from disneyworld I will take my other kids and my husband and I to get cultured. Someone even told me to have my dog checked.

I can not imagine going through this without any help. My heart goes out to everyone who has delt with this. I am in the medical field and this whole thing is frustrating. Once again though my mother's instinct told me not to believe the ADHD diagnosis. When he finally started having full blown neurological looking movements I finally pushed to see someone else. I know I will eventually find the right doctor but it is very frustrating. I can't imagine going through this alone.

Thank you so much for reaching out to me. I will call my friend in Houston and get her to look up the data on Azithromycin.

Also, my reading told me to let Carter rest. That is a very hard task with a child that can not stop moving. I also feel like he has spent the past 1-2 years seeing multiple doctors trying to figure this out. He loves baseball and I hate to tell him he can not play. I spoke to the coach and filled him in. I told him to be patient with him and not let him exert himself much. We are off to DisneyWorld where I hope we can just relax and enjoy one another. My son seems very relieved that we have finally figured out this is all beyond his control.

Thanks.

[pmoreno]

Thank you for your reply. I talked to a pediatric infectious disease docotr and she did believe in SC and PANDAS but still did not have much information. She has only seen two kids in her career since she works primarily in a hospital. She is someone I went to medical school with and now lives in Houston. She told me to call a pediatric infectious disease doctor here in Charlotte. I spoke to one on the phone who said she would help me with treatment and following titers but wanted me to go see a neurologist to help us. We were being seen by probably the best pediatric neurologist here and she recently left her practice to start a sleep practice. She has a non-compete policy so we can not see her for anything but sleep but I e-mailed her and she thought the post-streptococcal auto-immune dx made sense. Tomorrow I am going to call the pediatric neurologist and rheumatologist and see where I get. I don't know if we have an immunologist but I will make that call too.

Carter seems to meet the SC diagnosis better. He is doing OK with his school work but literally can not stop moving. His movements are continuous and wave like-they are not repetative like tics. He looks like he is dancing. I decided to take him off his neurontin which was given to him to help him sleep. I want to really see if the antibiotic does anything. Before he was diagnosed with SC he was given a diagnosis of PLMD by the neurologist. PLMD is periodic limb movement disorder. He kicks and arouses anywhere from 8-14 times an hour. He is also taking iron supplementation to raise his ferritin which is supposed to help. His movements seemed a little less today and I hope that was because the antibiotic was helping, but yesterday they were awlful. Also, interesting enough my other son was diagnosed with strep throat yesterday. He awoke with a high fever and I took him in. He is on Clindamycin because he had a funny sore on his foot that worried me and the pediatrician for MRSA. He seems to be doing well today.

I spoke to my friend today who is a neurosurgeon today and he said he would do some legwork around town and see if he could find anyone else to help me. He said the infectious disease doctor I talked to was great. From what I could tell she believed me but did not have much experience treating it. I really feel he has SC and just want someone who can sift through the literature and come up with a treatment plan. He has not had any arthritis only muscle fatigue but primarily at the end of the day. The neuropsychiatrist that made the diagnosis believes strongly in it but I don't think he is up to date on the literature but in a fix he could help me too. I think he thinks SC and PANDAS are part of a pectrum of disorders.

I have completely given up on my pediatrician. He wants to help but I can tell has doubt in the disease. There is someone in their practice who did an infectious disease fellowship and he said he did not think PANDAS exists. He stated he wanted to see something besides retrospective studies...and I replied..."well while I wait should I just watch my son deteriorate before my eyes!"

I have no problem bypassing my pediatrician altogether and will probably switch groups when this all settles down. I have two pediatricians I work with which said they would be happy to help me through this but once again they have no experience. I know there is some doctor who is a movement specialist in Chapel Hill if I can't get help here.

Unfortunately I was unable to get his throat cultured before he started the antibiotics. I called my pediatrician and by the time we talked he had already had three doses. I have no idea if he is a carrier. I threw out everyone's toothbrush today and when we get back from disneyworld I will take my other kids and my husband and I to get cultured. Someone even told me to have my dog checked.

I can not imagine going through this without any help. My heart goes out to everyone who has delt with this. I am in the medical field and this whole thing is frustrating. Once again though my mother's instinct told me not to believe the ADHD diagnosis. When he finally started having full blown neurological looking movements I finally pushed to see someone else. I know I will eventually find the right doctor but it is very frustrating. I can't imagine going through this alone.

Thank you so much for reaching out to me. I will call my friend in Houston and get her to look up the data on Azithromycin.

Also, my reading told me to let Carter rest. That is a very hard task with a child that can not stop moving. I also feel like he has spent the past 1-2 years seeing multiple doctors trying to figure this out. He loves baseball and I hate to tell him he can not play. I spoke to the coach and filled him in. I told him to be patient with him and not let him exert himself much. We are off to DisneyWorld where I hope we can just relax and enjoy one another. My son seems very relieved that we have finally figured out this is all beyond his control.

Thanks.

Isn't it amazing that there are so many people in the medical field who just dismiss all the evidence on this disease. I've recently seen a neurologist (who has had limited PANDAS experience) and tells me that alternative docs (DAN docs who seem to have more PANDAS experience than mainstream practitioners) are practicing on the fringe of medicine. What is your specialty, by the way? At this point we have had the best advice from a DAN doctor in Florida who is well known and has patients from all over the country and many from outside of the country too. It's true that there is no known actual cure for PANDAS at this time. There are a few things that have been successful for a large number of kids, but not 100% for all. Others on here have mentioned them - IVIG, plasmaphoresis and long-term antibiotics. In the meantime, while you decide which route to go, you obviously want a little respite from the movements and sleep disorder. The DAN doc wants us to give our daughter 5HTP starting with 50Mg daily, gradually incrementing with an additional 50Mg (always given BID) until reaches 200Mg daily over about 2 weeks, then starting inositol in combination with the 5HTP. When she recovers from her current upper resp. infect., I am going to start this (didn't want to do it while she was sick because it's hard to judge if something is helping or not if there are other variables to consider). You may know that 5HTP is a neurotransmitter (a precursor to serotonin). I don't assume that you know this because the neurologist I saw (amazingly) did not know this. You would think that someone who specializes in that field would at least know this, even if they don't use it in their practice. I don't know why main stream medical practitioners are so adament about using meds (that many times have horrible side effects) instead of trying natural products that don't have the side effects and have a pretty good track record of having equal success to standard meds. My daughter had some wave-like movements at the onset of her disease 1 1/2 years ago (but I guess I just called them tics). It would be a smooth movement of her arm to her hand, forming her hand into a C shape. This occurred over and over for a period of time. She lost all symptoms for about 3 months last summer, but this particular movement returned when her symptoms came back late summer. After IVIG they went away immediately and completely, but the OCD part of it had gradually returned and is still part of her getting better and worse at various times. Her cognitive impairments have remained. She functions about 1 to 2 years behind her age group academically.

 

You mentioned a funny sore on the foot of your child - could it be a plantar's wart? For some reason, (related to their dysfunctional immune response) these kids seem more susceptible to viruses too, and of course, warts are viruses. My daughter had several warts on her toes prior to the onset of her symptoms. The restless legs are often attributed to low ferritin levels and my daughter did receive iron for a mildly low level, but it didn't seem to make any difference. (I believe if PANDAS was not involved and it was simply a matter of low ferritin, maybe it would help) In any case, I'm hoping that the 5HTP/inositol combination will do the trick for her. It should help with sleep (and has been known to help with OCD, decrease anxiety,etc - therefore, I would think that it might have a relaxing effect and improve tics or movements at the same time). It certainly can't hurt to try - I've not heard of any side effects yet. Good luck and hopefully you'll have a little more success because of all of your connections. Pat

[colleenrn]

Mom MD,

I am sorry to hear about your son, but I am glad you have all the resources that you do. My biggest piece of advice at this point (MY daughter was diagnosed with PANDAS almost 8 years ago and my 6 and 8 yo son's also are PANDAS) is to switch him off of Amoxicillin asap. Can you do Clindamycin that your other child is on? This article explains why Amoxicillin and penicllin have such high failure rates. You need to aggressively treat strep and Amoxicillin is not the best. When my daughtetr first started with PANDAS, Amoxicillin is what we used, several times. The strep was never erradicated and each PANDAS episode was worse. This can be avoided by using a macrolide or cephalopsporin.

 

http://www.entrepreneur.com/tradejournals/.../169459644.html

 

Colleen

[EAMom]

Here's a link with good PANDAS articles and info. on Azithromycin. http://www.latitudes.org/forums/index.php?showtopic=3911

 

By the way, we know exactly how you feel!!

I have completely given up on my pediatrician. He wants to help but I can tell has doubt in the disease. There is someone in their practice who did an infectious disease fellowship and he said he did not think PANDAS exists. He stated he wanted to see something besides retrospective studies...and I replied..."well while I wait should I just watch my son deteriorate before my eyes!"

 

You could always call (or e-mail) Sue Swedo at NIMH for her recommendations/doc suggestions.

 

You could also try sending Dr. Kovacevic an e-mail. He really knows PANDAS. http://www.webpediatrics.com/pandas.html I don't know how much he knows about SC.

 

I would also ditto colleenrn's comments about amoxcillin. Azith. was the 4th ab we tried and the only one which really helped. We think it worked for us b/c it is immune modulating and also gets intracellular strep. Augmentin, Amoxcillin, and Cefuroxime didn't do much. (There was some improvement in mood on the Augmentin.) Also, Azith. is what finally cleared our strep carrier (non-pandas) younger dd.

[bronxmom2]

Hi, I also ditto about what everyone says about being very aggressive about the antiobiotics! I let my pediatrician talk me into switching him to Amoxicillin, then watched him fall apart before my eyes, and it was harder to get him back. now I'll travel to Mexico to get more Cefdinir if I have to!

 

Also, mdmom, it's been suggested for years that my son had ADHD but I never quite believed it... though I kept searching for answers because I knew there was something wrong. I knew it!

 

Anyway good luck to you! It's good to have an md on our side.

[michele]

Welcome Mom MD. Sorry to hear about your son's condition but I ditto it is great to see a Dr. on this site. If these Dr's who blow us off would ever see such a dramatic change in their child or grandchild I think they would quit trying to laugh at this diagnosis and look for a treatment. Just as SC is a believed diagnosis those of us here who have seen this PANDAS strep reaction wax and wane over the years know it does truely exist.

 

Initially my son's movements were chorea like or adventious movements. However over time they began to look more like tics. At first the fingers and piano playing and eye blinking. Now they are more rhythmic and even like toe curling and finger cracking on both hands and feet. For awhile he did the touching the ground stuff also. As time went by the tics have changed during different episodes. Every now and again they become verbal squeals or echos for awhile. Try to tape them if you can and show them to the Dr's. you see. We see a child neurologist for the tics and ADHD. I do believe the ADHD is a symptom of the PANDAS just as the tics and obssesive behaviors are. Also we see a psychiatrist for the meds for the moods and ADHD. We see a neuro psychologist for the behavior modifictaion. I have also found the infectious disease Dr's to be helpful wwith the antibiotic prescriptions. We use 300 mg of omnicef a day. It has helped but the episodes still come and go but maybe aren't as long as before. We have founf the moods are the worst part of the illness. I think if the symptoms go untreated it can lead to mental illness. http://www.adhd.com.au/PANDAS.htm We have found the OT to be one of the best therapies for my son's motor delays.

 

Since you know alot of medical people hopefully you can report back some of your finding here. It can be a lonely road and we need to advocate together to get this a more recognized and accepted diagnosis.

 

Michele

My son Carter will be eight next month and he has just been given a diagnosis of Rheumatic chorea or PANDAS. I am a physician myself and they appear to be different. Carter 's symptoms are primarily difficulty in stopping moving and he appears to have chorea like movements. His movements are bilateral and very dance like. I have caught him on two occasions playing the piano but usually the are dance-like. I know tics are repetative and his seem to all be a little different. He has had a few tics but most truly seem chorea like. According to my reading chorea is extremelly rare but he fits the desiption. His ASO titer was 1750IU/ml and his antiDNaseB was 1320IU/ml. His ESR and CRP were negative which makes me think this is a reoccurance. Looking back his symtpoms started at the beginning of kindergarden and truly waxed and waned. Since November they have gotten much worse. I was given the ADHD, anxiety, OCD, PLMD diagnosis but the chorea like movements did not fit. Finally someone check his titers and it all seems to make sense. We are seeing a pediatric cardiologist Tuesday and are trying to get into a neurologist. From my reading on Syndenham's chorea it seems 89% of children recover within 2 years even without treatment but reading these forums makes me a little worried. It sounds as if these relapses are fairly common and can last for much longer.

He is on amocillian so we will see what that does. If anyone have any helpful tips on managing the chorea type movements please let me know. He is emotionally labile and has very poor sleep. He has had some memory issues, headaches, and obsessions too. I can manage these OK at this time but the moving is really disruptive at school.

[Worried_Dad]

Hi, Mom MD:

 

My son was originally diagnosed with acute rheumatic fever with Sydenham's chorea (at 11). His original symptoms seemed much more ARF / SC than PANDAS: polyarthritis following a high fever, pain, weakness, some difficulty walking. Then about 6 weeks later he began having "seizure-like episodes" where his limbs twitched and jerked uncontrollably, sometimes for hours. They were not continuous and wavy, though, so not classic SC. He had emotional lability, cognitive impairment, and terrible sleep problems but no OCD at all. Over time, the seizure-like movements became more tic-like, but antibiotics eliminated them almost completely once we started high-dose amoxil.

 

As others mentioned, amoxicillin doesn't seem to cut it for this kind of strep for these kids. Our son was on prophylactic amoxil for 10 months, during which he had no major symptom exacerbations but things just smoldered. Then our local doc changed the diagnosis to PANDAS and advised us to discontinue the amoxil prophylaxis. Things went downhill. Within 2 months, our son got an infection and had an overnight explosion of classic PANDAS symptoms: massive OCD contamination fears, rages, crying jags, suicidal talk, extreme urinary frequency, anorexia, sensory defensiveness... and a return of the motor tics, along with a major vocal tic, too.

 

Personally, I kind of agree with your doc who believes PANDAS and SC are part of a spectrum. The symptom overlap is significant, they're both believed to be caused by GABHS and an autoimmune response that attacks the basal ganglia, they both trigger neuropsychiatric symptoms than include movement disorder. In fact, some articles I've read have suggested that PANDAS should just have been called "atypical Sydenham's" or another form of ADEM. That's what frustrates many of us: most of the medical community completely accepts SC, but PANDAS is "bunk" even though it's believed to have the same cause and highly similar symptoms.

 

Hang in there. If you can find the right specialists (and with your own medical credentials, you can call other docs on the carpet if they're ignoring half the evidence in relation to your child's illness!), you're in much better shape than most of us.

 

Best of luck!

[mom md]

Thank you all so much for your care and support. Carter seemed much better today but I am cautious to see if this is a true improvement or just a better day. He has been on the antibiotic since Wednesday night. We are seeing the cardiologist tomorrow morning and the neurologist tomorrow at 1:30. I will report back what we find. Carter has not had any motor delays yet only weakness occasionally after a long day. His mood was better today and I saw a few shoulder rolls but not the big chorea movements that I saw the past week.

I am an obstetrician & gynecologist so I know just enough about neurology to get overwhelmed quickly. I do have access to a library that will help me gather articles so I will continue to read and educate the pediatricians I come into contact with. I am working tonight so I must go but I will report back what I find out tomoorw. I did e-mail Dr. Swendo and am waiting to see if I get a reply.

It seems pretty clear to me though that the bacteria is getting more resistent to the antibiotics and our bodies immune systems are overreacting in response. This experience has also made me realize how much about medicine we still do not know.

I am off to do a c-section! I will repot back tomorrow and once again thank you to you all.

Claire

[Debbie1]

I feel I must chime in here on the antibiotics discussion. While I understand the amoxicillin does not work for everyone, my children are doing extremely well on it. Their titers have come down significantly and they have had no recurrance of symptoms even though they have been repetitively exposed to strep. I know we have not been on prophylactics as long as others here, but someone else that I know has been on prophylactic amoxicillin for two years with no recurrance of symptoms. I don't think it should be automatically ruled out for stronger antibiotics without exploring it as an option or giving it a try.

[mom md]

Carter has officially been given the diagnosis of PANDAS by the neurologist. He had one of the worst bedside manners I may have ever witnessed but he does believe in the diagnosis. He wants to get an MRI with a focus on the basal ganglia. I hate to subject Carter to it if it won't change the treatment but in the back of my mind I want to see that there are no other abnormalities and if his basal ganglia looks involved. He recommended Carter stay on Amoxicillin for two months. After reading the info regarding intracellular and resistent strains I am planning to switch to azithromycin after 10 days. The cardiologist did say his heart looks fine. The neurologist said I was lucky...he was one of the doctors that did believe it was a disease. He thought his movements were chorieform tics. He asked me to video them if I could. He also said we were trying to treat his sleep without success because treating the night does not fix the day and vice versa. He said you have to treat the whole disease. He wants me to give Carter 25mg of Seroquel to help with his movements. Has anyone tried this? I gave it to him tonight and he could barely keep his eyes open after 1 hour. That scared me. I am tempted to hold off and just let him move as much as he wants while we see what the antibiotic does.

I spoke to someone tonight that had her daughter diagnosed last year. She struggled as we all did finding someone who would listen. Her daughter has almost made a full recovery. She was on Omnicef for 5 months. She now takes her in prophalactically to check strep cultures. I was very down today after we got the diagnosis but felt better after talking to someone that had results. She told me to expect a "sawtooth" recovery pattern. Carter was not doing well on day 3 of his antibiotic, day 4 seemed almost back to normal, and the day 5 was back having issues again. Seeing him be almost normal on day 4 makes me know he is still there and I just have to pull him back out.

My next task is to find a pediatrician who can work with me. I am planning to leave my old group. They misdiagnosed my daughter at day 5 of life with a virus when I came in saying "she is vommitting bile!" Turns out she had a midgut volvulous where her bowel was kinked off and she almost died. I stayed with the group hoping they would listen to me when I asked for help but apparently I was wrong. Once agian, we are the only ones who can be advocates for our child.

My other concern tonight is his titers were so high (ASO 1750, and antiDnaseB 1320 IU/ml). It makes me worried we have let this go for so long and it may be harder to treat. Carter had a sleep study two years ago because he moved all night long. I wonder now if it was the PANDAS.

On a positive note, the mother I spoke with tonight said they are training the doctors at Duke that PANDAS is real. Does anyone know anyone in that area who is good. We don't live too far away.

Thanks again for all your concern, support, and info.

Claire

 

Su

[EAMom]

I wouldn't get too worried about your son's high ASO, anti-dnase B titers. Read Buster's Aug 24 and Jan 11 posts on titers, they are helpful. http://www.latitudes.org/forums/index.php?...art=#entry29305

 

We found that Ibuprofen helped our dd sleep and helped with symptoms. (I don't rememeber if it did much for tics/movements though...that wasn't our biggest issue.) We gave 200mg daily (she was about 47 pounds) every morning for 2 mo. (June/July) with the Azith. Her mood/eating would be more normal after the Ibuprofen and she would often fall asleep (initially, in the early days) after a dose. Some others on this forum have given it at night to help with sleep. We didn't give it more than once daily but probably could have. We gave it in the morning to help with mood/eating. We would have considered giving it at night if she had trouble with sleeping then. We think it had some beneficial anti-inflammatory activity on her brain/basal ganglia.

 

How old is the girl with PANDAS that was on the Omnicef? how long has she been off the abs? unfortunately, I'm just thinking it'll be a matter of time b-4 she gets another strep infection/pandas episode. Perhaps I'm biased, there is a lot of strep going around my kids school this year and my younger dd (non-pandas) is a strep carrier. Also, there is one study that noted that PANDAS kids get strep more easily than non-pandas. Since my dd's PANDAS episode was so horrific (including a week of hosp. for anorexia nervosa/malnutrition...she lost 15% of her body weight in 2 weeks, and she was slender to start with) we're not willing to take chances and take her off the abs.

 

I think you are right in holding off on the Seroquel.

 

Most people on this forum also give probiotics to their kids on long-term abs. A lot give fish oil (or some other form of omega 3/dha) to help the brain heal/repair.

[michele]

Congratulations on getting an official diagnosis of PANDAS so quickly. That is quite the feet in itself, it took us years of repeat saw toothed epsiodes and a trip to Florida to Dr. Tanya Murphy. She is a psychiatrist who is big on the PANDAS research. You may want to look her up. I am shocked a neurologist diagnosed it too. I have never found a neuro yet who would admit it was a seperate disorder to tourettes/ tic disorder. I know most of our kids still get setbacks while on the antibiotics when they get sick however I would think the episodes would be much worse if the antibiotics weren't in their system and another brain attack was launced by the cross reaction of the mimicry to the strep. I am interested to see what the MRI will show. My son never had that but did have a CAT scan and an EEG and both were fine.

 

Our neurologist yesterday wanted my son to start up on Risperdal. He has been on Abilify for a year and the mood swings and quick switch tempers are still in full swing. Please post here what Sweedo tells you. It is so hard to know what route to follow in the treatment to this syndrome. It is very complex with the obsessions and tics and attention issues and moods. The Abilify helped my son fall asleep right away along with the strattera he is now on. I know meds are a bandaide of the real underlying issue but they do take the edge off of a smoltering pot. In the earky days we used epsom salt baths and 5HTP to help him get to sleep. For now meds are the only way I know how to treat this other then OT and behavior modification therapy.

 

Best of luck.

Michele

Carter has officially been given the diagnosis of PANDAS by the neurologist. He had one of the worst bedside manners I may have ever witnessed but he does believe in the diagnosis. He wants to get an MRI with a focus on the basal ganglia. I hate to subject Carter to it if it won't change the treatment but in the back of my mind I want to see that there are no other abnormalities and if his basal ganglia looks involved. He recommended Carter stay on Amoxicillin for two months. After reading the info regarding intracellular and resistent strains I am planning to switch to azithromycin after 10 days. The cardiologist did say his heart looks fine. The neurologist said I was lucky...he was one of the doctors that did believe it was a disease. He thought his movements were chorieform tics. He asked me to video them if I could. He also said we were trying to treat his sleep without success because treating the night does not fix the day and vice versa. He said you have to treat the whole disease. He wants me to give Carter 25mg of Seroquel to help with his movements. Has anyone tried this? I gave it to him tonight and he could barely keep his eyes open after 1 hour. That scared me. I am tempted to hold off and just let him move as much as he wants while we see what the antibiotic does.

I spoke to someone tonight that had her daughter diagnosed last year. She struggled as we all did finding someone who would listen. Her daughter has almost made a full recovery. She was on Omnicef for 5 months. She now takes her in prophalactically to check strep cultures. I was very down today after we got the diagnosis but felt better after talking to someone that had results. She told me to expect a "sawtooth" recovery pattern. Carter was not doing well on day 3 of his antibiotic, day 4 seemed almost back to normal, and the day 5 was back having issues again. Seeing him be almost normal on day 4 makes me know he is still there and I just have to pull him back out.

My next task is to find a pediatrician who can work with me. I am planning to leave my old group. They misdiagnosed my daughter at day 5 of life with a virus when I came in saying "she is vommitting bile!" Turns out she had a midgut volvulous where her bowel was kinked off and she almost died. I stayed with the group hoping they would listen to me when I asked for help but apparently I was wrong. Once agian, we are the only ones who can be advocates for our child.

My other concern tonight is his titers were so high (ASO 1750, and antiDnaseB 1320 IU/ml). It makes me worried we have let this go for so long and it may be harder to treat. Carter had a sleep study two years ago because he moved all night long. I wonder now if it was the PANDAS.

On a positive note, the mother I spoke with tonight said they are training the doctors at Duke that PANDAS is real. Does anyone know anyone in that area who is good. We don't live too far away.

Thanks again for all your concern, support, and info.

Claire

 

Su