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

Hi. I know what you are going through! Stay away from SSRIs as you know what the results are. The ONLY medication that helped somewhat was Clonodine. It is a hypertension medication that made my son very sleepy, so I gave it to him at night. Then Dr. Latimer put him on the Clonodine patch, and it helped until we got antibiotics, did IVIG and PEX. Hang in there and keep fighting! There if you need anything! Brooke

We appealed it with some help from my union it doesnt matter its just not going to work.My whole family are lawyers they all would help the insurance clearly says not covered for pandas .Even though they did pay for the 1st iv. Melanie We have the same insurance. We did IVIG in July, and now they are saying that they will not cover! I wish I knew what to say. Is it outpatient or Inpatient? I am so sorry. I too have read their website. Thinking of you!

I am not sure what they denied? Will try to help once I know. Brooke

My son also had a horrible reaction to SSRIs. Prozac set him into a week long rage that stopped when we stopped the medication. (Note Prozac has a long half-life so if you stop it, it will take time to be eliminated from the body) We did not try Seroquel even though it had been recommended. (along with a list of others that scared me) My son actually has paradoxical reactions to most medications. The only thing that helped him was Clonodine, mostly to sleep when he had a rage at night. He is now on nothing but Augmentin. My advice is to go very cautious on medications. I have not heard of Namenda, but if it is new, I would be dubious. I would try Clonodine. Dr. Latimer prescribed it for us. It comes in a patch and a pill. The patch helped througout the day. The pill worked almost as a sedative. Hope this helps@

To all Fellow Sufferers! My son just returned home from Plasma Exchange at Georgetown. We had few glitches with our three rounds of treatment. (He had done IVIG in July with dramatically improved symptoms about six weeks post IVIG. Then placed on Augmentin 875 twice a day.) My little boy is Happy (Capital H!!!) , he has said on multiple occasions since his treatment. We have had no incidents of OCD/Anxiety, emotional lability, sensory defensiveness, or rages. (much of this had improved post IVIG but we had many breakthroughs and his Chorea was still prominent) Fine motor is still off, but we will watch closely over the course of time. He is a little restless, but is now out playing in the snow, and had no issues with putting all of the snow gear on! I will keep you all posted as the days progress with more challenges still in store I am sure. My 17-year-old (also diagnosed with PANDAS) is on prophylactic Azithromycin. I am also compiling a booklet with pictures of his experience with PEX if any of you out there is planning this procedure. After this almost two year nightmare, I may actually have time to just breathe, and just maybe I can catch a glimpse of life as it could be! PS one day I will recount our story. It is a painful one, and has changed my little boys life forever. But now I will focus on the positive that has been the gift I have received! Thoughts and prayers go out to all of you! I hope that I can use the little strength I have now to give whoever needs it a boost as many of you have done for me! All of my Best, Brooke

me too and just blocked it!

My son will receive PEX tomorrow morning. Does anyone have any retrospective advice? I am a nervous Mommy but know I am doing the right thing.

I, too cannot remember if I already replied. I am usually a big believer in alternative medicine. However, in this case, it does not seem the alternative doctor has a lot of experience with PANDAS. I would definately advocate for the steroids as a trial. That is what we did and for Dr. Latimer, it was diagnostic that our son responded so well to prednisone. We could not stay on it because it made his heart race, but it lead us to decide that we needed to be more aggressive treating our son with PEX or IVIG. Don't be afraid! I was there too and probably filled the rx and let it sit for weeks. Trust Dr. Latimer and talk to her about your fears. But I would not waste another day before trying prednisone. Do one at a time though. Good luck! Hope this helps!

I was listening to Coldplay's "Fix You" this morning, a wonderful song, and decided that it fit perfectly for my family's PANDAS life. Google the lyrics! And download the song!

While we have only done IVIG once (without antibiotics), it was definately an up and down journey for a good few weeks. My other children were so disappointed because they had thought it would make their brother better immediately. I so know how it feels to wait for the day to end. Hang in There!! Maybe this will be the time where it will not work instantly, but will work completely for the long term! Take care!