brooke

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.

Thank you all for the great advice! I will work on getting some bloodwork for the humans and talk to our Vet! As much as she slobbers on us, and we her, it would not surprise me. Boy, I had a bad case of impetigo as a young girl. It still have scars. Maybe it still lives in me? I need to talk to my OB because I had strep with different pregnancies, and cannot remember which ones now. Has this ever been looked at?? Brooke

My thinking too! Wouldn't it be easier to just take the antibiotics and see? But, knowing my husband and big boys, they may say no unless they have a diagnosis. I feel like I am chasing my tail every day! I wonder if my internist would be amenable? I also wonder which anti-biotics too? The same one as Evan takes? I hope to see you soon! Brooke

We have seen our ENT on high dose Augmentin. We are still contemplating a T&A even though they are not "obstructing" his breathing. We also have the swollen glad issue. I am not sure the antibiotics will affect the size. I think you need an ENT that is familiar with PANDAS though. If you can hold off, maybe try, but I am not certain it will make a huge difference? I would imagine it would be more telling if there was a positive response to antibiotics? Hope that helps! Brooke

I am struggling to figure out how to get the WHOLE family, including the dog, tested for Strep. I know the classic Strep test, but how is it tested in the sinus? The intestines? The ears? To completely eliminate the possibility that one family member is setting off the PANDAS children, does every single angle need to be eliminated? What about the dog? The Vet told me that there is little that can be transmitted from animal to human and the reverse. I am getting OCD thinking about this! Any ideas would be greatly appreciated. Brooke

Confused. I think we are PANDAS 2 -- Low titers, possible Mycoplasma Pneumoniae -- but responded favorably to IVIG ,antibiotics and PEX, in that order. Dramatic improvements for three weeks post PEX, and then positive strep test. One week of regression, and now on and off. Still have Chorea and anxiety/OCD symptoms. No longer "Exorcist" symptoms, thank the Lord! Will pursue tonsilectomy, but continue to have concerns about the strep source being in the gut? Thank you for the further clarification!

I think that Dr. L will listen to you patiently! I would not worry about your presentation. From what I have read, it sounds pretty certain. I would put your energy into taking care of you so that you can make the trip. If it makes you feel better, just make a short list of symptoms. Hang in there!

Dear Wornoutmom, I know where you are! I was there too with very similar issues. I do not know where you are geographically, but I wish I could take your son to try to give you a break! We did not try any of the psych meds, except the SSRIs which were disasterous. Only thing that helped us was Clonodine which you can get in patch form. I think the psychiatrist would be willing to give you that and I do not think it would be something that Dr. L would object to. I too have not heard Omnicef as an antibiotic of choice. If you can hold out on the Hospital, I would. Been there and done that. The only benefit was that it said to our son, you cannot do this! But the effects did not last long and all they did was put him on Celexa and Clononine , the former made him worse! We also had no idea at that time that he had PANDAS so you are in a better position armed with that knowledge! Hang in there! If you want to talk, PM me! Best, Brooke

My son had pneumonia and sudden onset of PANDAS. We did not have a blood test as the diagnosis was via X-Ray. My brother was exposed to my son with pneumonia (prior to diagnosis), and came down with a horrible case of pneumonia thereafter. He was sick for a long time. I also think that my son has co-infection with strep, whose source still baffles me? My thinking is that it could have started in the throat and migrated to the gut. IVIG, PEX, and antibiotics have helped a great deal, but we are still not out of the woods! Quite frustrating! Could it be that this combination of sources requires a different protocol than the "traditional" strep only source? We are planning to switch from Augmentin to Zithromax. Brooke

I always get perspective on this forum! I guess I have a big battle, hesitate to say "won" for fear of jinxing myself and others! ? A little over a year ago, my son was wielding metal candlesticks at me in a rage tantrum. Post IVIG, PEX, and antibiotiocs, he will now carefully help me light the candle in that same candlestick. While we still have our issues, and I am with him 24/7, it takes a reminder like this one to make me realize how far he has come. I do try to let him know that almost every day, but maybe it is me that needs that reminder?

Strange that so many of us have issues with stomach pain and reflux. I still wonder if there is something going on in their intestines that we cannot see! My son had some stomach pain recently when he switched from Augmentin 875 to Augmentin XR, so much so that he could not tolerate going to School. He had one dose of the XR though? And the pain lasted for almost 4 days? But since his stomach ache disappeared, he has been more tolerable at home, despite the stress of finding a school for him. I still have not found a solution! If I do, I will post! Just feel that there is a pattern here to document!

I am sooo sorry abot your frustration, and COMPLETELY understand how you feel vis a vis Drs who just do not know about this. SSRI trials for these kids is almost diagnostic. While people with bipolar disorder can also be activated on SSRIs, there seems to be a difference. OUr kids can take almost no medications. Thoughts are with you!

So glad for you! Prayers your way. This is an easy procedure compared to what you are going through! Probably flying would have been worse for us than IVIG. Know that it may be a little bit of an electrocardiogram post IVIG. Great days, ok ones, and some bad too. Keep up your faith and patience as hard as it may be. We are all out there for you too. PM me if I can be of any help! We did IVIG in July. Best to you and your boy! Brooke

We are almost two weeks post PEX, and just diagnosed with Strep. We had AMAZING results for that period. So far a bit of an exacerbation, and not too fun. We will switch antibiotics to treat the strep. Any input from others would be welcome. Just as we were thinking we could do a normal academic environment! Thanks, as always, for your support!

So glad for you and him! Must have made him feel a mile high! I will pray that he has the IVIG. It really works!! Take care of you and him! Brooke