coco

I was wondering if anyone has had their child's thyroid level checked as part of bloodwork. Did anyone come back with low thyroid? The most common cause of hypothyroidism is the body's autoimmune reaction to itself, producing antibodies against the thyroid gland. Can having Pandas cause this as well? Dr. T, what is your experience with this? I ask this because I was looking through old med records from 2 years ago and my dds was borderline low, but we had no idea we were dealing with Pandas at the time. Could perhaps this be added to the list of possible diagnotic criteria??

Hi Pandas - Chicago, Yes, I remember Diana's note from last summer and the interest Mystery Diagnosis had with story, and I also recall speaking with her about this. I remember that some parents were willing to have their story told, but don't know where that all went. I think it is so important for OTHER pandas cases (families and children) to be brought to light, with many multi-faceted symptoms, not just a sneezing tic...a child with OCD, emotional lability, crippling anxiety, etc. Since Diana already shared the producer's name and contact information with the forum 9 months ago and Pandas Chicago was kind enough to share again, the willing among us should really push the story along to expand to a more clinically broad view of this disorder. It would be great if Dr. T and Dr. K could also be part of this as they have been treating so many for so long and have "seen it all." Sadly, it doesn't sound like this potential episode will be featuring anyone else's story, though, as LJM mentions "exculsive" agreement. I would love to be wrong. Don't get me wrong, if LJM has the media interest to further the cause of Pandas awareness, go for it. If it were me, I would insist that my child be just 5 minutes of the story and let others with more severe symptoms and the more experienced doctors who have treated them have the floor, but that would be a perfect world.

It would be great if you could co-speak with Diana Pohlman, since she actually has a recovered child, has and is followed/following more than 300 families over the course of two years, put the PANDASNetwork website up, flown all over the country to meet with most of the leading treating physicians to guide, inform and consort with others, and has helped so many of us during her own personal life story. It would be so gracious of you to broaden the message with someone who has actually been "around the block" so-to-speak with all this. You could hit it from the "more socially acceptable" side, like what we are seeing on TV, and she could hit it from the less "pretty" side, which hits a home-run for so many of us. Why reinvent the wheel when she's already had it rolling? Just my 2 cents. Hope Lauren continues to get well.

. Because of our phone call and several others from families having poor success with monthly IVIG he called the doctor who was prescrbing it, himself a brilliant, talented and highly regarded immunologist and convinced him to change his protocol to a single or infrequent infusion of at least 1.5 g/kg of IVIG. Dr. K told me the reasons, but it is not my place to try to explain them, even though I did that poorly on a previous post. Was the other doctor Dr. Gupta at UCI?? If so I wish someone would have told him that before we paid out of pocket for 16 infusions. We're still paying for it and will be for a while. I contacted Dr.K when this first started for us. My son also has autism. I got back a brief email saying something like a prednisone push usually indicates how well a child will respond to IVIG and with autistic kids the results are not always accurate for some reason. Kind of blew me off and didn't seem interested in taking on my son as a patient. So I had to go elsewhere. It's been the story of my life. I keep trying to do the right thing for my kid, spend tons of $$$ and always end up with the person/treatment protocol that doesn't work. No, it was not Dr. Gupta. Please don't take Dr. K's brief email response personally. He is so busy but usually manages to get a quick reponse to us all. I would recommend setting up a phone consult with him and he can then really get into your case and talking is always better that writing. We just had another consult with him yesterday regarding low-dose ivig (vs 1.5 dose) and that it almost always does nothing for Pandas (I said ALMOST, so pls no bashing!). We are definitely staying with the 1.5 dose, waiting at least 3 months and then decide on another high-dose. I haven't heard a lot of positive stuff about Dr. Gupta. Best of luck.

Hi Melanie - sorry you are going thru this now. As I pm-ed you last week, I would watch the minocycline very closely. It has a number of pretty strong side effects, including vertigo. When I was on it for adult acne (yes girls, pre-menopause for me) it cleared up the acne lickity-split in just several days, but made me horribly dizzy, "out of body" type of feeling. After stopping, symptoms disappeared. I'm no expert, but I would switch abx for Danny.

I do know that mercury will not show an accurate read on blood work. You can help measure the amount of neural mercury in the body by using a challenge test by taking a chelator challenge pill, collect urine and then measure the level of excreted mercury and chelator to get an idea on how much is sitting the cells. But I don't believe you ever know for certain until you start pulling over time, testing, pull more, test again, etc. until clean. Lead and arsenic will show accurately on blood work. Pulling mercury out of the blood and soft tissues is relatively easy. Pulling it out of the insides of your brain cells is not so easy. It is here than the mercury can effect the ability of the nerve cells to communicate, for example, by clogging the noradrenaline alpha-1 receptors. Very tricky.

Melanie - this is THE study. This is the best data there is. Go with it.

Yes, I thought I saw a post last night about Dr. T leaving the forum, but now it's gone.

What a great story...all good things for your family, you deserve them!!

Glad to hear good news! All the best for a success story!

This is outstanding news...thanks so much for posting. I believe high-dose is critical for kids who have had untreated Pandas for a very long time. I totally "get" how the antibodies stick to the brain and are exceptionally difficult to eridicate. This needs to be hit HARD from the get-go, and perhaps, with corresponding IV abx to knock it flat. Ceftriaxone is what my dd rec'd in the hospital for a URI and all symptoms went in remission for 4-5 months. It is also a powerful lyme's abx. This is a great post and I will certainly present this to Dr. B. Just spoke at length about with him yesterday as my dd was getting another ivig and he is swayed enough to go with the 2.0 for the next round...I should have pushed harder yesterday while we were there. Thanks so much for sharing this! The mountain is moving!!! coco

Hi Doug, we had the same side effects as bmom's son, almost to a T. After 6 hours of vomiting at the very end of Day 2, mild fever and horrible headache, it passed. You are good hands with Dr. K. The staff at the surgical center is excellent and you will all be fine. Best of luck to you!!

Nevergiveup, I am hoping that my post regarding ivig dosages just provided more "food for thought" on the subject and not a run on the bank from neurotic parents banging on the doors of unsuspecting doctors demanding that protocol. To be honest, and it is not my intent at all to come across as anything but totally committed to getting my suffering daughter well as quickly as possible, offer others encouragement, and share what I have learned with as many others who are seeking, just like me. I am less concerned with physician's offices handling a busy call load. Perhaps it can be turned into a "positive" because it is forcing less experienced pandas doctors to consult with the more experienced, and in the end maybe, just maybe, there will be enough experienced ones out there to handle the tidal wave that is about to hit. I have no idea how many calls my post generated, but I hope it was enough to move our cause along, because without parents pushing, this ain't going nowhere. I had a friend the other day say to me, "Wow, I think might to be too selfish to pass all the information you've gathered on to others because it might make your place in line get pushed back that much farther, after all you've been through." She may be right, but, I have to believe that one good turn derserves another and that giving back is part of this journey, however you choose to do so.

Maybe this pub? http://neuro.psychiatryonline.org/cgi/cont...full/12/1/117-a Excerpt: "Inflammation of the brain is attended with intolerance of light and sound; which shows that the extremities of the nerves of those senses are at the same time inflamed."

we have already scheduled some procedures that will investigate the possibility of seizures. Can you explain a bit more about the types of seizures your son is having? Is he or are you aware of them? Do they happen at night? Cause bedwetting, jerky movements, etc? Why does Dr. L think that it's an issue?

Hi Michael, thanks for sharing your story. It was very interesting to read how you articulate the "Brain Invasion" and it seemed to present such a clear picture of how this directly effects our kid's brains, my daughter included in that. May I ask (sorry if you already posted) how long your son has had this? I truly believe that if we fix the immune system and stop the infection our kids are going to get better. My daughter also had basically no symptoms when she had a sickness of any type, fever especially I remember. What doctor are you working with? We have seen good improvement since my daughter's been receiving ivig. I think it takes a long time to repair and heal, and the first step is to get those good antibodies into them.

Wornoutmom -- Please do not leave this club!! Listen, my kid was MISdiagnosed with pddnos and co-morbid anxiety disorder at age 5, with symptoms long before then. HOWEVER, she never met all the criteria for pddnos, but we had to go with it in the absence of anything else, and believe me we never gave up searching and trying and hoping EVER because in our gut it never felt right. Then, out of the blue her allergist went to a med conference where Swedo was a speaker and then said to us, "Hmmmm, maybe we should run some Pandas strep stuff on her, I doubt that's what it is, but let's just rule it out." Low and behold, DNASE and ASO were way high and we were not even in the middle of an exasberation! I was afraid to hope in my heart that this all really was pandas after all...and we ABSOLUTELY did the Cunningham test, just as another indicator, one way or the other, if we were on the right track. I still remember pacing up and down the driveway waiting for that envelope to come from OSU, heart pounding, almost afraid to open the results. Her CamK was 188 and all the other levels were at the very least 4x, often 16x, above normal controls! We did ivig with Dr. K in August and almost right away many of the most horrible symptoms went away. Yes, it is a horrible journey and it is certainly not over for us by any means, but I just wanted you to give you additional encouragement just like all the rest of us. My late mother used to say, "What seems so far could be so near." Please don't give up, we're not giving up on you!

ok, ok, all in good fun, but when you come to get me just please don't bring a camera crew!

Don't see myself as "the lecturer".. Now that's funny! LOL!

Hi, we see Dr. Bouboulis. His number is 203-655-9904 Darien, 203-323-7744 Stamford (he has two offices.) How far do you travel? We live in Stamford..I can't believe I stumbled across this name-I was ready to go to Manhattan or even Maryland!! I will definitely contact him tomorrow-I pray that he accepts Anthem BCBS as payment (once it's approved). How long have you been seeing him? We have been seeing him since July 09, consulted with him prior to doing ivig with Dr. K, and have seen him for susequent treatments. We were referred to him after seeing Dr. Leckman at Yale and were one of his early Pandas cases. You will really like him, I'm sure. PM me if you'd like add'l info! Best of luck!

Laurenjohnsonsmom -- are you going to be doing ivig or plasmaexchange? You have seen/spoken with all the biggies, what's their recommendation? Sorry if I missed this in a prior post.

Hi, we see Dr. Bouboulis. His number is 203-655-9904 Darien, 203-323-7744 Stamford (he has two offices.)

Not sure, we have emailed him back to get a little more info...just thought in the meantime I would do my own type of searching. thanks for your reply. It nice to know he is nice and will be helpful in all this. Hi Kay, We saw Dr. Leckman at Yale over the summer and he was kind and compassionate...super advocate for pandas parents and an outstanding resource. He referred us to Dr. Bouboulis in Darien, Ct (immunologist) for subsequent treatment. I am sure Dr. Leckman will be able to point you in the right direction very quickly. Good luck!

Hi melanie, yes, headache is pretty standard. Lots of liquids before, during and after may help. My daugher had nausea also after her 2-day with Dr. K for about 6 hours, then all was fine. She was much better on subsequent treatments.

I can only speak to what we are seeing with our daughter and how she clinically presents after having both the Dr. K high-dose 2-day and 4 monthly 1.0 gram doses with Dr. B. We are seeing progress, but after all these ivigs we would have hoped to see a more steady trend upwards. My dds IGG levels now are in the high-normal range and her pneumo strep 14 serotypes are almost all very healthy, so that has definitely improved her overall immune health. But for lack of a better word, there appears to be some "magic" with what occurs in the bone marrow at that higher dose level. And waiting 60 days to repeat that dosage rather than doing a lower-dose monthly seems to work. Dr K has not been able to explain that pnenom to me, but it appears to gleen the most success. He has a thought that doing monthly may actually prolong pandas symptoms...JUST A THOUGHT. I do not want to create the impression that folks who are doing monthly treatments are all wrong and that it won't work, it may well work...but this is the direction Dr. B is moving towards now.