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2nd appt with Dr. Latimer today


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Hello Everyone,

 

I have not posted in a while. I have been so overwhelmed with my son's behavioral problems. He has been out of school since the end of October. He has been on prednisone for over a month and has improved. However, he is still far from baseline. He still has mild chorea, OCD symptoms, rages, concentration problems,etc...

 

Anyway, we went back for our second appointment with Dr. Latimer today. She reviewed all of his lab results including Cunningham's test and after seeing him again today she believes he has Sydenham's Chorea. However, she did say she felt it was all in the same spectrum. I am just relieved to finally have an official diagnosis...sort of??

 

The next step is to remove his Tonsils and Adenoids and then IVIG. He will remain on 10mg of prednisone a day for now and Augmentin 850mg twice per day. Dr. Latimer said he would have to take the antibotics until he is an adult.

 

Has anyone else been diagnosed with SC instead of PANDAS?

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What is the difference between the 2? SC is also triggered by strep?

 

 

Hello Everyone,

 

I have not posted in a while. I have been so overwhelmed with my son's behavioral problems. He has been out of school since the end of October. He has been on prednisone for over a month and has improved. However, he is still far from baseline. He still has mild chorea, OCD symptoms, rages, concentration problems,etc...

 

Anyway, we went back for our second appointment with Dr. Latimer today. She reviewed all of his lab results including Cunningham's test and after seeing him again today she believes he has Sydenham's Chorea. However, she did say she felt it was all in the same spectrum. I am just relieved to finally have an official diagnosis...sort of??

 

The next step is to remove his Tonsils and Adenoids and then IVIG. He will remain on 10mg of prednisone a day for now and Augmentin 850mg twice per day. Dr. Latimer said he would have to take the antibotics until he is an adult.

 

Has anyone else been diagnosed with SC instead of PANDAS?

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Though I'm not an expert, my understanding is SC is the same underlying pathology as Pandas but I don't think OCD or tics. Better accepted as a medical diagnosis (i.e. less controversy) than Pandas and you will be able to get IVIG paid for without any problem. There is a parent on this forum that had it as a child.

 

There is hope and healing for your child. Hang in there.

 

Ellie

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My son also has the Chorea but with a PANDAS diagnosis. The important thing is that the treatment is the same. I found it very helpful to go to the website wemove.org and look all of the information on acute rheumatic fever and syndenham's chorea. It is interesting the parallels there are. Rheumatic fever used to be more common. Not sure why it is no longer? It is also interesting that it tends to be covered by insurance and it is listed as an "other health impairment" for purposes of special education. If anyone knows anything about the legislative history of that, I would be grateful.

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My son also has the Chorea but with a PANDAS diagnosis. The important thing is that the treatment is the same. I found it very helpful to go to the website wemove.org and look all of the information on acute rheumatic fever and syndenham's chorea. It is interesting the parallels there are. Rheumatic fever used to be more common. Not sure why it is no longer? It is also interesting that it tends to be covered by insurance and it is listed as an "other health impairment" for purposes of special education. If anyone knows anything about the legislative history of that, I would be grateful.

 

My son does have the OCD and tics. He doesn't have them as much now as he did before Augmentin and Prednisone. However, he did have very severe choreic movements, muscle weakness, loss of fine motor control, etc.. Even after antibiotics and prednisone he still has mild chorea. He also developed a heart arrhythmia, suddenly while all this other stuff was going on!!! We had to take him to a cardiologist to be checked out and fortunately,his heart is fine.

 

I don't know if it is SC or PANDAS??? If the insurance will cover the treatment for SC, than I am glad he has that diagnosis. I still don't understand why...and I am too exahausted to even try at this point. I just pray that something will work so I can get my child back. Everyone keeps saying it will get better. I have to think about that each and every day as I try to make it through without losing my mind. It is very comforting to know that so many people out there truly do understand. I thank each and every one of you for sharing your stories and offering advice. I am so thankful for this website.

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Hi, Michele:

 

Our son was originally diagnosed with ARF / SC, then later changed to PANDAS. As others have said, most of the clinical experts with whom we've spoken (Dr. K, Dr. L) consider it all part of the same spectrum, and there's a lot of symptom overlap between SC and PANDAS. SC seems to be more closely associated with the classic choreiform movements, while PANDAS is more aligned with OCD and tics. We were told by one neurologist that SC movements are continuous, while PANDAS movements are episodic... and our son's were definitely episodic, more like seizures.

 

As others have mentioned - SC, unlike PANDAS, is a well established disorder and not considered "controversial." If you can get a doc (especially a neurologist) to officially diagnose SC, that should definitely make insurance coverage easier to get.

 

Best of luck!

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Hello Everyone,

 

I have not posted in a while. I have been so overwhelmed with my son's behavioral problems. He has been out of school since the end of October. He has been on prednisone for over a month and has improved. However, he is still far from baseline. He still has mild chorea, OCD symptoms, rages, concentration problems,etc...

 

Anyway, we went back for our second appointment with Dr. Latimer today. She reviewed all of his lab results including Cunningham's test and after seeing him again today she believes he has Sydenham's Chorea. However, she did say she felt it was all in the same spectrum. I am just relieved to finally have an official diagnosis...sort of??

 

The next step is to remove his Tonsils and Adenoids and then IVIG. He will remain on 10mg of prednisone a day for now and Augmentin 850mg twice per day. Dr. Latimer said he would have to take the antibotics until he is an adult.

 

Has anyone else been diagnosed with SC instead of PANDAS?

 

 

michele,

Did the doctor diagnose your child as SC, or do you mean she said he had some chorea movements upon the examination?

 

could I ask why the next step is T&A? she also recomended IVIG? is that definite or just a recommendation for maybe in the future?

 

Faith

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Hello Everyone,

 

I have not posted in a while. I have been so overwhelmed with my son's behavioral problems. He has been out of school since the end of October. He has been on prednisone for over a month and has improved. However, he is still far from baseline. He still has mild chorea, OCD symptoms, rages, concentration problems,etc...

 

Anyway, we went back for our second appointment with Dr. Latimer today. She reviewed all of his lab results including Cunningham's test and after seeing him again today she believes he has Sydenham's Chorea. However, she did say she felt it was all in the same spectrum. I am just relieved to finally have an official diagnosis...sort of??

 

The next step is to remove his Tonsils and Adenoids and then IVIG. He will remain on 10mg of prednisone a day for now and Augmentin 850mg twice per day. Dr. Latimer said he would have to take the antibotics until he is an adult.

 

Has anyone else been diagnosed with SC instead of PANDAS?

 

 

michele,

Did the doctor diagnose your child as SC, or do you mean she said he had some chorea movements upon the examination?

 

could I ask why the next step is T&A? she also recomended IVIG? is that definite or just a recommendation for maybe in the future?

 

Faith

Hi Faith,

 

She did diagnose him with SC. She said his overall exam (1st and 2nd) along with his Cam Kinase results, and I also filmed my son during his first major episode. He was in constant movement, jerking, etc for almost an entire week! She said he needed to have T&A because it is a source of becoming reinfected with strep. So before doing the IVIG, she recommends getting rid of a source of strep that can be eliminated. After the T&A is done I am supposed to call her after a couple of weeks and start the process for IVIG if he is still not any better.

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We were given the SC/PANDAS diagnosis too by Latimer but she said it was a toss up. He was in full chorea last January and then after 4-5 days of azithromycin his chorea improved to small finger and shoulder rolls. After three months of azith his Cam Kinase level was 201% which was in the SC range. Latimer saw him 4 months after his major chorea episode and was still impressed with his chorea. That is when she said he was a toss-up between SC and PANDAS. His titers were still in the thousands so we proceeded with PEX with immediate resolution of his symptoms. I think the SC and PANDAS are all part of a spectrum.

We had a relapse 4 months later after H1N1 hit our house which responded to steroids. Interesting his relapse looked more like PANDAS than SC. Maybe the PEX helped bring us down the spectrum? We are doing IVIG next week to help "re-set" the immune system. My son always tests negative for strep throat even when his titers are elevated. Dr. Latimer said we did not need the T&A a few months ago but maybe she is changing her recommendations. Carter is finally almost at baseline and we are going to do IVIG next week so I do not want to have him undergo surgery if it is not needed. I think I will let my ENT look at them but the immunologist and Latimer both looked at his tonsils and said they thought they were OK.

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I'm probably the parent that memom referred to. I was diagnosed with SC when I was 7. And, unfortunately both my kids have PANDAS or SC. Son's cam kinase score was 197%, which is starting in the SC range. Daughter's was 184%, more PANDAS. Thankfully, daughter's symptoms have been fairly mild over the years, but she is ADD, which may be related. As most have stated, the two are in the same spectrum, I believe. SC diagnosis has been around for a long time...after 10 days at Duke in 1972, this is what the doctors said I had. I had chorea like tics, but very little OCD. Son has had same issues, but tics are even worse, especially at night...he can't relax and go to sleep and has "melt-downs". I believe the two disorders are basically the same thing, but each child has different mainfestations. I was examined for heart issues at Duke and none were found. I asked our Pediatrician if we should have kids tested...he said no, b/c with the use of antibiotics, they don't see many heart issues from this any more. Still see issue in undeveloped countries, from what I have read. I believe that my kids and I have a genetic predisposition to PANDAS / SC and the resulting autoimmune affects the basal ganglia as opposed to the heart valve. (the use of Abx may certainly reduce the heart issue) But the resulting autoimmune problem still hits the brain. Even now, I wonder if my grandchildren will have this problem...hope and pray there will be better recognition and treatments by then.

 

And by the way, I outgrew my SC symptoms mostly by the time I was around 15. I can tell I have some slight symptoms now, but nothing that would interrupt day to day life.

 

BCBS denied IVIG for both kids (b/c they saw PANDAS on med recs). But son has been approved for pex for the week of Jan 25th at Georgetown. We hope this will reset his immune system, and by God's grace, he will not get strep again and we won't have to wait for him to "outgrow" it.

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your child is one that gets strep alot I'm guessing? or is it still a mystery if he even has strep? (I ask because I am in the second boat, so curious.)

 

Faith,

Yes, he has had reoccuring strep starting at 6 months old. I can remember three occasions when he had trouble getting rid of strep...had to have 2 or 3 courses of antibiotics. Also, he has had many occasions that he presented with a rash. It is often around his nose, mouth, lips and once on his back. He always tests positive for strep when he gets these rashes. However, he doesn't have a sore throat???

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