sydenham's Chorea/ rheumatic fever

[OTSMITH]

my 4.5year old daughterhas been Dx w/ Rheumatic Chorea for 3 months. She has movment disorder, severe behavioral dysregulation, hand tremors, joint pain,itching,crying spells....etc We were crusing along pretty well and she has had a significant set-back this week-end. bAck to ground zero. We are contemplating steroids now. Does anyone have any advice?

 

She is on penciiian shots. She takes probiotics, antiviral oils, fish oils, b-complex,motrin, vitamin D. She just finished around of diflucan. I am having a hard time getting her off gluten/dairy (damm those PB and J's) Any other suggestions?

 

Does anyone have any thoughts on gettinng flu vacciation h1n1.etc.....

 

woulsd LOVE some feedback---otsmith

[mom md]

my 4.5year old daughterhas been Dx w/ Rheumatic Chorea for 3 months. She has movment disorder, severe behavioral dysregulation, hand tremors, joint pain,itching,crying spells....etc We were crusing along pretty well and she has had a significant set-back this week-end. bAck to ground zero. We are contemplating steroids now. Does anyone have any advice?

 

She is on penciiian shots. She takes probiotics, antiviral oils, fish oils, b-complex,motrin, vitamin D. She just finished around of diflucan. I am having a hard time getting her off gluten/dairy (damm those PB and J's) Any other suggestions?

 

Does anyone have any thoughts on gettinng flu vacciation h1n1.etc.....

 

woulsd LOVE some feedback---otsmith

I think steroids would be the right choice. If these kids are caught early they can be treated with antibiotics, or antibiotics and steroids. If she responds to steroids great...if she responds and then relapses I would move forward with IVIG if possible. By the time these kids develop chorea and tics often antibiotics alone is not enough. I would strongly recommend having a phone consult with Dr. K or Dr. Latimer. We did and it offered me a much better understanding of the disease. The strep is the initial issue but the key is to get the antibodies removed. For us, we did PEX with Dr. Latimer. My son had PANDAS which progressed to rheumatic chorea in January. We are now 8 weeks out from PEX and he is cured. We are not sure but we think he had it for 3 years prior to this. We chose PEX because his titers were so high they fely we would need 6-9 months of IVIG before he was cured. If your daughter has only had this for three months steroids will probably work. If not IVIG would. Please know we have all walked in your shoes and are eager to help you.

If your child does not have a documented gluten/dairy allergy I would not sweat over that stuff too much. I think the probiotics are important, fish oils, etc. I am working with an immunologist regarding the flu vaccine. After we do my son's bloodwork we will be talking to the NIH. Swedo at the NIH says no, but I just read an article about a 15 yr old kid, otherwise healthy, that died from H1N1 in the New England Journal of Medicine. I can treat PANDAS but maybe not H1N1. I will post what I know as get info. I think there are very few people that should not get the flu vaccine. I will not be giving it though until I get more info.

[Kayanne]

Steroids supress the immune response and address inflammatory issues...both of which are believed to be issues with RF, SC and PANDAS.

 

PANDAS and SC are related or may even be the same just on different ends of the spectrum.

 

My Daughter had her first recognizable PANDAS episode this spring...she responded very well to prednisone.

 

Best of luck

Karen

[OTSMITH]

Thanks for all the responses. Did any of your children have side affects from the predisone....aggresion,anxiety,weight gain. I'mworried @ it making her OCD_like behaviors. Next question, what is PEX and how do I reach these 2 Dr.s. I am willing and able The funny thing is I am a pediatric occupationall therapist for the past 12 years and i feel WAY out of my league here.---Jenn

 

 

 

my 4.5year old daughterhas been Dx w/ Rheumatic Chorea for 3 months. She has movment disorder, severe behavioral dysregulation, hand tremors, joint pain,itching,crying spells....etc We were crusing along pretty well and she has had a significant set-back this week-end. bAck to ground zero. We are contemplating steroids now. Does anyone have any advice?

 

She is on penciiian shots. She takes probiotics, antiviral oils, fish oils, b-complex,motrin, vitamin D. She just finished around of diflucan. I am having a hard time getting her off gluten/dairy (damm those PB and J's) Any other suggestions?

 

Does anyone have any thoughts on gettinng flu vacciation h1n1.etc.....

 

woulsd LOVE some feedback---otsmith

I think steroids would be the right choice. If these kids are caught early they can be treated with antibiotics, or antibiotics and steroids. If she responds to steroids great...if she responds and then relapses I would move forward with IVIG if possible. By the time these kids develop chorea and tics often antibiotics alone is not enough. I would strongly recommend having a phone consult with Dr. K or Dr. Latimer. We did and it offered me a much better understanding of the disease. The strep is the initial issue but the key is to get the antibodies removed. For us, we did PEX with Dr. Latimer. My son had PANDAS which progressed to rheumatic chorea in January. We are now 8 weeks out from PEX and he is cured. We are not sure but we think he had it for 3 years prior to this. We chose PEX because his titers were so high they fely we would need 6-9 months of IVIG before he was cured. If your daughter has only had this for three months steroids will probably work. If not IVIG would. Please know we have all walked in your shoes and are eager to help you.

If your child does not have a documented gluten/dairy allergy I would not sweat over that stuff too much. I think the probiotics are important, fish oils, etc. I am working with an immunologist regarding the flu vaccine. After we do my son's bloodwork we will be talking to the NIH. Swedo at the NIH says no, but I just read an article about a 15 yr old kid, otherwise healthy, that died from H1N1 in the New England Journal of Medicine. I can treat PANDAS but maybe not H1N1. I will post what I know as get info. I think there are very few people that should not get the flu vaccine. I will not be giving it though until I get more info.

[Kayanne]

Side effects for our daughter were minimal. The first two weeks when she was on the higher doses, she had more temper tantrums...but her behavior was going there prior to starting the prednisone.

 

She had a couple of pimples on her face. She did gain weight, but she was losing weight prior to starting it because she was refusing to eat...so I think it was a good side effect.

 

Dr. Beth Latimer 301-530-9200

 

Dr K. can be reached through www.webpediatrics.com

 

Dr. Latimer is the one treating my daughter, and we have been very happy with her!

[OTSMITH]

thanks for the info. I am calling today--J

[PKM]

my 4.5year old daughterhas been Dx w/ Rheumatic Chorea for 3 months. She has movment disorder, severe behavioral dysregulation, hand tremors, joint pain,itching,crying spells....etc We were crusing along pretty well and she has had a significant set-back this week-end. bAck to ground zero. We are contemplating steroids now. Does anyone have any advice?

 

She is on penciiian shots. She takes probiotics, antiviral oils, fish oils, b-complex,motrin, vitamin D. She just finished around of diflucan. I am having a hard time getting her off gluten/dairy (damm those PB and J's) Any other suggestions?

 

Does anyone have any thoughts on gettinng flu vacciation h1n1.etc.....

 

woulsd LOVE some feedback---otsmith

 

My son was diagnosed with Sydenham's in January (then 7yrs - now 8yrs) and he is still not 100% better. He did experience some mild behavior issues (some separation anxiety, some age regression behavior (suddenly carried a stuffie everywhere he went), some irritability, and a few bouts of strange "inappropriate" laughing. These behavior issues cleared up pretty quickly. He has also experienced joint pain (still happens occasionally today). The worst of his problems were movement related - a lot of chorea (even a brief period of "paralytic" chorea) and tics. We have certainly seen a "saw toothed" recovery pattern with him.

 

I am just wondering if your little girl might be coming down with a virus or infection of some kind? As my son has been recovering, he has had major set backs whenever he gets sick. The "Sydenham's" set back usually begins anywhere from about 3 to 9 days BEFORE he has any obvious symptoms of the upcoming virus or infection. (I assume it depends on the incubation period for the particular virus/infection.) It is very difficult to see him doing so well in his recovery only to slide so far back when he gets a flu or cold. Every setback he has had has been related to a cold or flu of some kind. On the upside - after 9 months into this, his last 2 setbacks (with cold viruses) have not been as severe or as long lasting. (Of course we are a little concerned about the H1N1 coming to our house.......not sure what that might do to him.)

 

He has not been on any meds through all of this other than the prophylactic Pen VK. He takes a good multi, some fish oils and b vitamins. He also takes an iron supplement.

 

I am sorry I don't have any experience to share re: steroids but I thought I should share our experience re: my son's Sydenham's set backs being related to viruses/infections. Keep your eye out - she might be coming down with something.

 

I know how difficult this is - the ups and downs in the recovery pattern have given me many emotional ups and downs!! It is soooooooo hard to see your child suffering - you just want it all to go away!! (At least I do - I'm sure you do to.)

[EAMom]

otsmith/pkm,

 

where do you live?

 

lots of folks on this forum have had a good response with Azithromycin. It is immune modulating/anti-inflammatory (our Stanford immmunlogist agrees that this may be a big reason it works so well for our pandas dd) and it gets intracellular strep.

 

amoxcillin and pennicillin has good activity against strep in vitro (in the test-tube), not necessarily in vitrol (in the body). Here's a good article http://www.entrepreneur.com/tradejournals/.../169459644.html

 

H1N1: I read that this flu hits older kids harder than younger ones. Also, that secondary bacterial infections are a problem (in those that died)...so it makes sense to stay on a good anti-biotic (imo pen may be too narrow spectrum if you are worried about 2ndary infections from h1N1.)

 

Even on Azith, I might have some concerns about using a lot of steroids during the school year (esp. with the h1n1)??

 

My dd did a 6 day steroid burst (1mg/kg once a day). During the burst, we thought her mood got worse (but she was also in an exacerbation, so maybe things would have been even worse?? hard to say). 2 weeks later we say an improvement.

 

I agree with MomMd about not worrying about the gluten/dairy.

 

PKM...i remember reading somewhere that SC reacted only to strep? ?? could your child be pandas (which reacts to other things, once pandas is set in motion)?

[bronxmom2]

EAMom, how long did the steroid improvement last?

[PKM]

Hi EAMom,

 

I live in Winnipeg, Canada (I have not found any docs familiar with PANDAS in Canada!)

 

Yes......I am wondering about PANDAS and I do watch this forum pretty closely. The docs think that the set backs with illness could still be SC (that he just isn't "over" the SC yet - that SC can take up to 2 years to resolve and the viruses are just "setting back" his recovery)???? The setbacks with his last 2 viruses (June and August) were certainly less severe. So.... I am hoping the docs are right and he will just continue to gradually improve. The only symptoms that return with illness are chorea and tics (he continues to have on-going occasional joint pain whether he is sick or not).

 

I actually believe my son has had repeated untreated strep infections since he was about 2 1/2. Since that age he has had fairly frequent (about every 8 weeks or so) high fevers (104 F -105 F). These would last for about 2 days and then he would get better - no other symptoms - he just slept and had high fevers. I was just told that this was how he "was" - that everyone's body responds differently to viruses etc. Well.....since he has been on prophylactic antibiotics, this hasn't happened to him once. It seems to me that he must have been getting some kind of regular infection that the antibiotics are now keeping away - my guess is that many of those must have been strep.

 

I also believe that many of his other health issues are related to these years of untreated strep - he started getting migraines (6-7 a week) in kindergarden. Now - those suddenly seem to be going away - or at the very least they have been significantly reduced. He also started getting exercise induced chest pains in first grade (he was checked back then but they found nothing except a left axis deviation and a murmur). The chest pains are still a concern and I would like him to be checked again - I understand tha valve damage can take some time to be evident??

 

Anyhow - this is all so confusing and I think that SC and PANDAS are all kind of on the same spectrum.........every case seems somewhat unique though - nothing too straight forward.

 

At the moment - since he is doing quite well - my plan is to see if he will just continue to gradually improve. (I know his body is still working at getting better - he sure needs a lot of sleep!) I am not planning to push for PEX or IVIG yet. I know that if it is PANDAS, that treatment is most successful before the age of 10..........so......can't wait too long of course.

 

I also read that children with neurological issues have also been hit quite hard with the H1N1 flu and so this also concerns me a little.

 

This is a wonderful forum filled with great information and great people. I am certainly glad I found it and appreciate everyone's thoughts and insights!

 

otsmith/pkm,

 

where do you live?

 

lots of folks on this forum have had a good response with Azithromycin. It is immune modulating/anti-inflammatory (our Stanford immmunlogist agrees that this may be a big reason it works so well for our pandas dd) and it gets intracellular strep.

 

amoxcillin and pennicillin has good activity against strep in vitro (in the test-tube), not necessarily in vitrol (in the body). Here's a good article http://www.entrepreneur.com/tradejournals/.../169459644.html

 

H1N1: I read that this flu hits older kids harder than younger ones. Also, that secondary bacterial infections are a problem (in those that died)...so it makes sense to stay on a good anti-biotic (imo pen may be too narrow spectrum if you are worried about 2ndary infections from h1N1.)

 

Even on Azith, I might have some concerns about using a lot of steroids during the school year (esp. with the h1n1)??

 

My dd did a 6 day steroid burst (1mg/kg once a day). During the burst, we thought her mood got worse (but she was also in an exacerbation, so maybe things would have been even worse?? hard to say). 2 weeks later we say an improvement.

 

I agree with MomMd about not worrying about the gluten/dairy.

 

PKM...i remember reading somewhere that SC reacted only to strep? ?? could your child be pandas (which reacts to other things, once pandas is set in motion)?

[OTSMITH]

Man, i love this forum (better than wemove), but I am so overwhelmed. So ,we live in Denver,Co. I took ellie to the dr.s yesterday and they gave her a strep test.negative. Has anyone still gotten strep even though on phrophlatic? I spoke dr. k and dr.L 's offcie. Dr. K thinks she may have PANDAS instead of SC since there is no heart involvment. What is the REAL difference between the 2.?

 

I am going to set up a consultation with one, who would you ladies prefer. Dr.k or Dr.Latimer

Here neuro here recommend I pull her out of Pre-k to part-time. Its to much for her little body-done..

 

 

thanks again everyone, OTSMITH

[OTSMITH]

BTW: there is a GREAT new book out called: Saving Sammy: the boy who caught OCD

 

Hi EAMom,

 

I live in Winnipeg, Canada (I have not found any docs familiar with PANDAS in Canada!)

 

Yes......I am wondering about PANDAS and I do watch this forum pretty closely. The docs think that the set backs with illness could still be SC (that he just isn't "over" the SC yet - that SC can take up to 2 years to resolve and the viruses are just "setting back" his recovery)???? The setbacks with his last 2 viruses (June and August) were certainly less severe. So.... I am hoping the docs are right and he will just continue to gradually improve. The only symptoms that return with illness are chorea and tics (he continues to have on-going occasional joint pain whether he is sick or not).

 

I actually believe my son has had repeated untreated strep infections since he was about 2 1/2. Since that age he has had fairly frequent (about every 8 weeks or so) high fevers (104 F -105 F). These would last for about 2 days and then he would get better - no other symptoms - he just slept and had high fevers. I was just told that this was how he "was" - that everyone's body responds differently to viruses etc. Well.....since he has been on prophylactic antibiotics, this hasn't happened to him once. It seems to me that he must have been getting some kind of regular infection that the antibiotics are now keeping away - my guess is that many of those must have been strep.

 

I also believe that many of his other health issues are related to these years of untreated strep - he started getting migraines (6-7 a week) in kindergarden. Now - those suddenly seem to be going away - or at the very least they have been significantly reduced. He also started getting exercise induced chest pains in first grade (he was checked back then but they found nothing except a left axis deviation and a murmur). The chest pains are still a concern and I would like him to be checked again - I understand tha valve damage can take some time to be evident??

 

Anyhow - this is all so confusing and I think that SC and PANDAS are all kind of on the same spectrum.........every case seems somewhat unique though - nothing too straight forward.

 

At the moment - since he is doing quite well - my plan is to see if he will just continue to gradually improve. (I know his body is still working at getting better - he sure needs a lot of sleep!) I am not planning to push for PEX or IVIG yet. I know that if it is PANDAS, that treatment is most successful before the age of 10..........so......can't wait too long of course.

 

I also read that children with neurological issues have also been hit quite hard with the H1N1 flu and so this also concerns me a little.

 

This is a wonderful forum filled with great information and great people. I am certainly glad I found it and appreciate everyone's thoughts and insights!

 

otsmith/pkm,

 

where do you live?

 

lots of folks on this forum have had a good response with Azithromycin. It is immune modulating/anti-inflammatory (our Stanford immmunlogist agrees that this may be a big reason it works so well for our pandas dd) and it gets intracellular strep.

 

amoxcillin and pennicillin has good activity against strep in vitro (in the test-tube), not necessarily in vitrol (in the body). Here's a good article http://www.entrepreneur.com/tradejournals/.../169459644.html

 

H1N1: I read that this flu hits older kids harder than younger ones. Also, that secondary bacterial infections are a problem (in those that died)...so it makes sense to stay on a good anti-biotic (imo pen may be too narrow spectrum if you are worried about 2ndary infections from h1N1.)

 

Even on Azith, I might have some concerns about using a lot of steroids during the school year (esp. with the h1n1)??

 

My dd did a 6 day steroid burst (1mg/kg once a day). During the burst, we thought her mood got worse (but she was also in an exacerbation, so maybe things would have been even worse?? hard to say). 2 weeks later we say an improvement.

 

I agree with MomMd about not worrying about the gluten/dairy.

 

PKM...i remember reading somewhere that SC reacted only to strep? ?? could your child be pandas (which reacts to other things, once pandas is set in motion)?

[EAMom]

otsmith/pkm: This is a good article on SC vs. PANDAS http://www.ncbi.nlm.nih.gov/pubmed/16970875 . I haven't been able to find a free full-text version online but if you private msg. me your e-mails I can e-mail it to you.

 

Yes, I have already pre-ordered Saving Sammy on amazon. The author is supposed to be on the today show on sept 24. We've had some discussions about her. I think the book will be great but it is unfortunate that it doesn't mention (or the author won't acknowledge) IVIG/pex as possible treatments.

 

Both my dd's had (likely) H1N1 in June (Disneyland). It also went through my pandas dd's class (9/33 kids sick) at that beginning of the school year, but by then she was immune (plus she had recently had IVIG, which may have helped). When she got it in June she was sicker than her younger sister. She was sick for about 5 days (on Azith. the whole time). She did have a PANDAS exacerbation a few days after recovevery. (So we started the steroid burst.)

 

Bronxmom2...I would say the full benefit (no separation anxiety, no abnormal movements, no ocd) of the steroid burst lasted about a week. Then she went back to her pre-flu baseline.

[EAMom]

Man, i love this forum (better than wemove), but I am so overwhelmed. So ,we live in Denver,Co. I took ellie to the dr.s yesterday and they gave her a strep test.negative. Has anyone still gotten strep even though on phrophlatic?

 

I believe there are a few who have had positive strep tests on prophylactic abs. I also wonder if there are others who have had low levels of strep (but not culturable, hiding out in the sinuses) while on amoxicillin/pennicillin.

 

In addition PANDAS kids can definitely react to non-strep illnesses (viral, other bacterial). Here's a post: http://www.latitudes.org/forums/index.php?showtopic=5266

[ShaesMom]

Both my dd's had (likely) H1N1 in June (Disneyland). It also went through my pandas dd's class (9/33 kids sick) at that beginning of the school year, but by then she was immune (plus she had recently had IVIG, which may have helped). When she got it in June she was sicker than her younger sister. She was sick for about 5 days (on Azith. the whole time). She did have a PANDAS exacerbation a few days after recovevery. (So we started the steroid burst.)

 

 

EAMOM-what kind of symptoms did your kids have with the flu? Shae tested positive for Influenza A back in March. She was the only one in the house who got sick even with my 80 year old Grandmother visiting us. Anyway, I'm wondering now if maybe it wasn't H1N1. She had a high fever for about three days and on the first day complained of not being able to feel her fingers. All of this occurred during her worst Pandas episode but before we knew it was Pandas.