michele703

Hello, I was wondering if anyone has been able to get BCBS of Va to cover IVIG treatment. If so, what code/codes did you use? Any information or tips you might have to get this treatment covered would be greatly appreciated. Thanks, Michele

I am in for sure...so far 138 votes...including my own!!!

What dosage did you use with the IVIG? Hi Melanie, Sorry it takes me so long to get back. I dont get a chance to get on here very often. My son was given 2mg/k for IVIG. He became very ill that evening after IVIG(nausea, vomitting, severe headache, body aches) These symptoms are now tapering off...however, a lot of his PANDAS symptoms seem to be reappearing. I have read on the forum that this is normal...I hope so!

Still here too! My son still is a patient of Dr. Latimer's and he is doing much better. He just had IVIG yesterday and broke out in hives. However, he has been on antibiotics and prednisone and we have seen great results from those two meds. However, not totally "cured" so Dr. L spoke with our local doctor here in Richmond and we had the IVIG infusion here! She was hard to contact at the beginning...but we stuck with her...and very happy we did so. She is a wonderful, caring and knowledgeable doctor. We have been a total of 4 times and will contact her if we have a set back.

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???

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.

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.

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?

I just received my son's score and it was 187. Also, just started steriods on Monday. My son is out of control! He is bouncing off the walls....aggressive......jittery, etc.... Is this to be expected? Should it get better SOON?

Brooke, So great to hear things went well for your son. Maybe now you can relax a little and enjoy the holidays!

I took everyone's advice and called Dr. Latimer's office AGAIN today and spoke with Andrea. However, I still don't have a rx for my son. She said she would give Dr. Latimer the message and talk to her after she finished seeing patients.(If she was still there) She also reminded me that Dr. Latimer keeps very long hours and has over 100 messages a day. I am beyond frusturated right now. I guess I do need to start workinig on a Plan B...in my opinion.....busy or not...this is totally unprofessional. I have another son that has a serious medical condition and we have over 10 different doctors involved in his care. Not ONCE have I left over 10 messages and not received a single call back. Thanks for allowing me to vent.

I just received an email with these results from Dr. Cunningham. I have read some of the other posts and I still dont quite understand what they mean?? I didnt get the Cam Kinase yet. Thanks to everyone out there for all your replies... Anti-Lysoganglioside 2 hours patient 80 positive control >1280 negative control 160 normal range 80-320 normal mean 147 Anti-Tubulin 2 hours patient 500 positive control 8000 negative control 250 normal range 250-1000 normal mean 609 Anti-Dopamine 1 2 hours patient 2000 positive control 8000 negative control 1000 normal range 500-2000 normal mean 1056 Anti-Dopamine 2 2 hours patient 2000 positive control 16000 negative control 2000 normal range 2000-16000 normal mean 6000

Has anyone been successful in getting in contact with Dr. Latimer? We went up there for an appointment on November 12th. She sent a letter to our pediatrician on November 17th stating she planned on prescribing a course of prednisone and f/u in a month. However, it is now November 30th and we still dont have a prescription for the prednisone. I have left numerous messages and I don't get a response. I don't know what to do at this point. Any suggestions?

Thanks to everyone who posted for all the good advice. We have taken our son out of school and will try to begin homeschooling we he is feeling better. The last week has been very hard for him and I think he just needs some down time before beginning any schooling. Will let you know how it goes:)

We did not have to pay for our lab work. It was filed under our insurance, Anthem Blue Cross.

She did send the blood draw to Cunningham...overnighted it..she said as long as it was in by Friday they should accept it..I am not expecting that to come back for a while. The other tests were immunological workup, ANA,and Vitamin D. I think that is all.

I am so glad that homeschooling is going so well for you. I am just afraid that my son would not do the work for me. I dont know..maybe he will surprise me. I will let you know how things go for us. I just called and left a message for the guidance counselor. We just need something to "lighten up" around here before we all explode! Thanks again.

I think I just need reassurance that I am not overreacting by taking him out of school. I told my husband the same thing. If he had cancer the school would not be so pushy and unsympathetic. It is definitely not anywhere close to "business as usual" in my household these days. The pupils just seem to dilate when he gets extremely stressed or anxious. This is also when he starts hallucinating about spiders, bugs, etc... He finally went to sleep last night (in the bed with us of course because he is afraid to be alone at ALL) he slept for 13 hours. He just woke up a little while ago and I checked his pupils..no longer dilated????

Hello..and thanks for replying back to my post. It helps to talk to others going through the same situation. I know what you mean about your heart and mommy instinct. Jacob is in a gifted classroom and the workload is horrendous. He just cant keep up and I think this is stressing him out even more. I just want him happy and healthy again. Children should not have to live with so much stress, anxiety and fear. It truly breaks my heart. My problem right now is convincing my husband that it is the best thing for our son. He is also an overachiever and I feel this puts a lot of pressure on Jacob. I do have him seriously considering it after last nights episode. My son doesnt necessarily love school so much..I think he want to succeed at everything. He has trouble socially. He has also been pulling out hair in the top of his head..leaving bald spots. He told me yesterday that children were laughing at him because of the bald spots. I am not sure if they really were or he was just imaging things again. He has good days and bad days. So we send him back to school and then it just happens all over again. Where are you located?

We had to take our son out of school last spring for the same reasons. Eventually, his behavior in school became similar to the "meltdown city" that I dealt with at home. They are simply not available to learn when they are in this state. Homeschooling is an option, if you can handle that. (I cannot!) He may not be available to learn until he receives a treatment. How long on the Augmentin? We did an IVIG in July with Dr. Latimer, and my son by September was available to learn in a specialized environment (only 7 kids in his class now). I took my son off of clonodine because it made him soooo sleepy. But that too was after IVIG. We never tried the other med, but it sure was recommended! Where are you geographically? Hi Brooke: Thanks for replying to my post. It is so comforting to hear from someone that knows exactly what you are talking about. Other people(including some doctors) look at us like we are insane. Jacob has been on the Augmentin for about a month..however, Dr. Latimer doubled the dose last Thursday. He was just taking 875mg once a day. The respirdal was prescribed by a psychiatrist. It is a psychotic drug. Supposed to help with this issue he has with the spiders,etc... I dont know if I would be able to handle home schooling, because I dont think he would listen to me at all. I wonder if I could possible hire someone? or maybe the county would provide this for him??? We are located in Richmond, VA. Where are you?

Hello, I am writing because I need advice and dont know where to turn. My son has not been officially diagnosed at this point. We had an appointment with Dr. Latimer last Thursday and awaiting the lab results. The problem is my son has missed a lot of school over the last few weeks. He is struggling to make up and to keep up. He spends all of his time thinking and worrying about spiders, tics, snakes, vampires, and ghosts that he cant concentrate on his work. It seems when he sits down to do his work it makes the symptoms worse. We had another major episode last night while doing homework. He was on an emotional roller coaster. One minute he was enraged and the next crying. He will start talking about spider bites, vampires and blood and going on an on....an hour will pass and he has only done 3 math problems. I also noticed last night his pupils were extremely dilated. Needless to say...he didnt go to school again today. I am sure he will have another huge stack of make up work due to his absence. I dont know what to do....any advice would be greatly appreciated. He is currenly taking 875mg Augmentin twice a day, .25mg of risperdal twice a day, and .2mg of clonidine at bedtime. Should I just take him out of school for a while until this situation gets under control? suggestions...please?!?! Michele

We had our first appointment with Dr. Latimer last Thursday, Nov.12th. I am just wondering how long it takes to get the lab results? Also, does she call with the results are send them in the mail?

He had a scratch on his back that he kept picking at...it became infected. Bright red and inflamed skin with white postules all around the sore. It waswarm to the touch.

Hello everyone, My son has been on Keflex 2000 mg a day for ten days. He had a bad strep infection on his back and has had odd behavior since the breakout. It has improved tremendously since he started the antibiotic. Today was the 7th straight school day being absent from school. He has had fevers that have come and gone. He last had a fever on Oct 31st. He was going to go back to school today, however, he woke up and complained of a sore throat and had several blisters on his lip and a red rash under his bottom lip. The doctor did a quick strep and it was negative. She did prescrive 875mg of Augmentin a day until our appt with Dr. Latimer on Nov 12th. She said the blisters and rash may be viral. Could the rash be strep eventhough the quick strep showed negative? It just seems odd that a virus would cause a low grade fever off and on for 10+ days! Any input or suggestions from anyone would be greatly appreciated. Thanks in advance!

I have an appointment scheduled to see Dr. Latimer on November 12th. Should I have the Cunningham test prior to going to the appointment or should I wait and have it done at Dr. Latimer's office?