Newbie here. Have questions...

[_Misty_]

My daughter suddenly developed OCD and many, many PANDAS symptoms in May. We haven't had much luck (although some!) in anyone believing that's what she has. Her pediatrician is hesitant, but did do ASO titer and Anti-DNase b and swabbed the whole family. All that was negative. He referred us to a therapist and put her on Keflex. She got worse while he was on vacation and we saw a different pediatrician who was more supportive and referred us to a pediatric neurologist and changed her antibiotic to amoxicillin. She dramatically improved in 36 hours and has now been on that for a few weeks and is at 80-85%. (We also added Inositol and magnesium on Saturday). She still has occasional obsessive thoughts and separation anxiety, particulary at bedtime. We saw the pediatric neurologist who said she believes in PANDAS, but doesn't really think my daughter has it because we can't track down any strep. She ordered an MRI and checked her thyroid and ANA screen w/ reflex and Mycoplasma level. Thyroid and MRI are normal, ANA screen was positive and Mycoplasma hasn't come back yet. She is referring us to a rheumatologist because of the positive ANA screen.

 

What should I expect? Will a rheumatologist likely be helpful? I hope we can at least get a bunch of tests run and hopefully find out some more info. We were almost certain this is PANDAS anyway, but I'm guessing the positive ANA is just another step in that direction, right? I'm on pins and needles wondering from day to day how her behavior and symptoms will be. It was severe for about 4 weeks.

[minimaxwell]

I would go see an Immun ologist, have them run the lGG sub types. Send me our email and i will send you the tests to run.

[Kiera]

I doubt a rheumatologist will be a pandas believer from all my reading. ID Drs are also pretty useless. If you have the resources either travel or do a phone consult with one of the few pandas experts nationally and cut to the chase. Otherwise check the pinned threads here or any of the pandas websites for pandas treating drs in your area. Or, alternatively see a DAN Dr, although expensive too. Diagnosing and treating properly can be a complicated process and you'll save yourself alot of time, energy and grief by going straight to a knowledgable source. Good luck!

[_Misty_]

Kiera- What is an ID doctor?

 

Minimaxwell- I've contacted 2 immunologists and neither were familar with PANDAS. I should probably keep pursuing someone, but got pretty discouraged after contacting those. One of them suggested I try the immunology dept at University of AL at Birmingham.

 

I emailed Dr. Kovacevic and he just said she needs IVIG. I would like to find out if there are any underlying things going on (Mycoplasma, Lyme, etc) before going that route. Also, we're less than 2 months into this. I don't want to do that unless it is absolutely necessary. Dr. K. really made me feel like he is just in it for the money by immediately suggesting that. He may be great, but I did not get a good feeling from his email. He suggested a phone consult, which we may do. What would that really accomplish? I'm guessing he can't order any labs from a phone consult. He is the closest to us at 10 hours away (by car). Dr. Murphy is 11 or 12 hours. There is a doctor that is about a 2 hour drive that we could try. He is family practice, I believe, but specializes in autism and I think is listed on a PANDAS list somewhere.

 

I am thankful, at least that the rheumatology appointment is this month. It's on the 31st, so we won't waste a lot of time waiting to see if they will be believers. It is the rheumatology group at Children's Hospital at Vanderbilt, if anyone is familiar with them.

[DeterminedMomVA]

I think Kiera used ID to mean Infectious Disease. There are still few PANDAS knowledgable docs across the country. I agree that you should see an immunologist. I'd suggest either Dr. B in CT (first choice) or go to USF for a full work-up, hopefully to include seeing someone at the immunology department there. Which state are you located in?

[nicklemama]

I wouldn't get my hopes up that the rheumatologist will be of any help. We've gotten no help from anyone but PANDAS experts. One thing I would really like to emphasize is the fact that you do not need positive strep cultures or titers for a PANDAS diagnosis. My DS was originally diagnosed by Dr T and it was confirmed by Dr K. Dr K told us that he has seen about 100 kids over the years that are just like my son, never tested positive for strep by cultures or titers. I would also say that I don't believe Dr K is in it for the money. He has very strong feelings that IVIG is the only way to go. We waited to see him until we had given antibiotics a try for 6 months. When DS reached a plateau of improvement, we went to Chicago to see Dr K. DS had IVIG 14 months ago and he's doing very well.

[Kiera]

Kiera- What is an ID doctor?

 

Minimaxwell- I've contacted 2 immunologists and neither were familar with PANDAS. I should probably keep pursuing someone, but got pretty discouraged after contacting those. One of them suggested I try the immunology dept at University of AL at Birmingham.

 

I emailed Dr. Kovacevic and he just said she needs IVIG. I would like to find out if there are any underlying things going on (Mycoplasma, Lyme, etc) before going that route. Also, we're less than 2 months into this. I don't want to do that unless it is absolutely necessary. Dr. K. really made me feel like he is just in it for the money by immediately suggesting that. He may be great, but I did not get a good feeling from his email. He suggested a phone consult, which we may do. What would that really accomplish? I'm guessing he can't order any labs from a phone consult. He is the closest to us at 10 hours away (by car). Dr. Murphy is 11 or 12 hours. There is a doctor that is about a 2 hour drive that we could try. He is family practice, I believe, but specializes in autism and I think is listed on a PANDAS list somewhere.

 

I am thankful, at least that the rheumatology appointment is this month. It's on the 31st, so we won't waste a lot of time waiting to see if they will be believers. It is the rheumatology group at Children's Hospital at Vanderbilt, if anyone is familiar with them.

 

 

Yes, ID = infectious disease. Agree also with nicklemama, Dr K has just been doing this so long, he used to wait 3-4 yrs before doing ivig on kids but said now he opts for it earlier as he feels antibiotics are only a bandaid, and eventually they are not sufficient and kids end up with ivig anyway! So it depends on several things - how bad your ds is now, how motivated you are to treat immediately, financial resources, willingness to travel etc. You could take the slower, more methodical route, and do an immune system work-up (must be with a pandas friendly dr) try abx as long as it works, possibly steroids, homeopathy etc and see how it goes. Strep is most always the initiating organism even though no evidence, and mycoplasma, lyme etc are triggers as a result of the immune system decompensating. Every child is different, but some are maintained on abx alone. Others who eventually need ivig in retrospect are sorry they waited so long to do ivig! Dr K is not in it for the money, you'll find all the specialists have to charge out of pocket as insurance usually won't cover an hour long visit. There's so few real pandas experts and we need all of them and TG they're willing to help our kids. Good luck!

Edited July 6, 2012 by Kiera

[sosudden]

Hi!

First and foremost I say follow your gut feeling!!! We haven't been on this path as long as some but all along the way - even with some family and supportive enough pediatrician - I have had to follow my gut feeling and push for what I think will help my awesome 9 year old daugher!!

Briefly --- DD fell "off that cliff" October 2011. By December she was "GONE!" Psychologist kept saying "There HAS to be something medical going on!!??" My husband and I kept saying "This just can't be right??? 10 different psychiatric diagnoses within a matter of a few weeks??!!" A super-smart, normal, outgoing, strong, brave, confident 9 year old suddenly unable to walk normally, make eye contact, sit at a table, watch TV, play on the computer, take a shower, carry on a conversation, eat without rituals, GO TO SCHOOL??? Ticcing and twisting and standing on her head and writhing on the floor??

I will never forget January 24th 2012. I googled "OCD AND MOVEMENTS" and Saving Sammy popped up. I just had to read a few sentences and then watch the video of Sammy moving and I screamed - LITERALLY SCREAMED - and just knew this is what my DD had!! :(

Luckily the very next day I had researched and printed off enough evidence and went straight to pediatrician. Had to hear "PANDAS is controversial" speech. BUT he prescribed 20 days of Keflex. This helped for a few minutes every day after day 11, but no real strides made. I wanted my daughter back!!

Dr K's name kept popping up in my research. My daughter was so BAD and nonfunctioning I WANTED IVIG ASAP!!! For us, the phone consult was worth the $$!! Just to talk to someone that UNDERSTOOD!! After trying to explain this to anyone around us, well, it was wearing me down!!

DD had IVIG Feb 16th & Feb 17th.

BEST THING WE COULD HAVE DONE FOR HER!!! By the end of the 2nd infusion DD was back!!! She could make eye contact and talk to us!!! Beautiful!!!

Within 2 days the writhing movements and headstanding was completely gone!!!! Daily migraines - gone!!! Huge dilated pupils back to normal most of the time within a week!!! For DD, it was the tics and movements that stopped first. Then the fearfull thoughts slowed way down. She became completely "present" and so able to fight the OCD bully like she had not before. She definatly had her saw-tooth pattern of healing. And she is till a work in progress fighting the OCD fearful thoughts. BUT, she was able to finish out the last 3 weeks of 4th grade with her class, going in just a bit later than the others.

Fast-forward to June 5th...DD 1st real PANDAS flare since IVIG Scary and awful. Swam in public pool (mistake) all day and within hours of getting home -- BAM!!! GONE!! The pacing, the rage, the distant look, the anorexia, the detaching... 2 days after PANDAS symptoms appear - huge swollen tonsils with yellow spots, sore throat, tongue sores and fever blister!!! :( Upped anibiotic dosage...and called an ENT!!! Luckily we have a PPO and did not need a referral because Pediatrician was unwilling to write for one. Took about 2 weeks for DD to climb out of her flare. Got her to wondereful ENT who said "Well, this is a no-brainer!!! We need to get those tonsils out!!" Music to my ears!!! Just knew infection had to be hiding out somewhere!!

SO today DD had tonsils and adenoids out! Dr said they were HUGE, CRYPTIC and FULL OF WHITE AND YELLOW INFECTION!!! EW!!! But YAY!!! Throw those things in the trash!!!

Let the healing continue!! ((hugs)) to all those BRAVE PANDAS families out there!!!

To be continued....

[hugs2day]

My son has PANDAS and positive ANA titer. Went to Rhuemy and he suggested I give him ibuprofen if he seems like he has pain. He heard of pandas but said he does not treat recommended a neurologist and hemotolgist that might prescribe ivig.

 

Said the ANA titer is unspecified test and unless the child has clinical symptoms of lupus or rheumatoid arthritis no need to treat with anything other than ibuprofen.

 

That was my families experience in a nutshell.

 

Good luck to you, you never know what appointment may lead to further help. The neuro he referred us to we ended up seeing did treat and is still treating. He also prescribed ivig but my son went into remission with abx alone so we have not had to pursue ivig yet. I leave options open because this disease is riddled with lots of ups and downs.

 

Take care.

[_Misty_]

DeterminedMom- I'm in Alabama. I haven't looked into Dr. B...I need to see if that would be feasible for us travel wise and insurance wise.

 

nickelmama-I've read about strep proof not being necessary, but getting doctors who are already somewhat skeptical to realize that your child still has PANDAS/PANS even without obvious strep is hard. Interestingly, dd had a positive strep swab in February, but the culture didn't grow strep. She had lots of pus in her throat at that time. The ped we saw while ours was on vacation said the culture can have a false negative 10% of the time. We had just come home from Disney World and I'm sure there strep there in February!

 

Kiera- My prob with Dr. K isn't the phone consult fee, it was wanting to do such an expensive procedure without even extensively talking to us or reviewing dd's records. I am all for it if dd worsens, but the way he just went straight to that, and he didn't say it "might" be necessary just rubbed me the wrong way. I am thankful he is there, for sure! We may be off to see him at some point. It might just be the way he communicates and could be a difference in North/South culture.

 

Sosudden- Wow! Your daughter has been through he!!. So glad the IVIG worked so well! Hope the tonsillectomy was just what she needed. I am thankful that we found out about PANDAS so quickly after my daughter's onset (10 days or so). I can identify with how you describe your daughter before this hit...just like mine. So smart and fearless before this. I told people as we were going through the initial horror that it was like we were grieving a death because she wasn't the same child. There was no enjoyment of life for her, no childhood going on for those weeks. It was all horrible anxiety and OCD.

 

hugs2day- I am so hoping the antibiotics are going to put my daughter into remission. She has 15 more days of them. How long did it take for your child to go into remission? I agree about leaving the options open. We know that this road is uncertain.

[hugs2day]

Misty,

My son suffered 9 months up and down while on daily full dose azithro, then in January neuro insisted I give PennVK a try. I was scared to death because I understood azithro to be the best and did not want to give it up for my son even though he was still suffering ocd with food issues, anxiety and occasionally hallucinations. It was up and down on azithro for 9 months. So we switched overnight to the Penn VK and my son told me on day 3 of taking Penn VK look mom I can walk past the remote. Look I can eat off the left side of the plate. etc. etc. Eventually he told me "thank you" he said "I got my life back." I cried secretly. One down one to go (younger brother still up and down). Anyway for my 9 year old the key was finding the right antibiotic and the change was fast. The remission occurred in Jan 2012 and is holding steady today.

 

You might also want to start supplementing magnesium and vit d both get depleted with abx use.

 

 

 

DeterminedMom- I'm in Alabama. I haven't looked into Dr. B...I need to see if that would be feasible for us travel wise and insurance wise.

 

nickelmama-I've read about strep proof not being necessary, but getting doctors who are already somewhat skeptical to realize that your child still has PANDAS/PANS even without obvious strep is hard. Interestingly, dd had a positive strep swab in February, but the culture didn't grow strep. She had lots of pus in her throat at that time. The ped we saw while ours was on vacation said the culture can have a false negative 10% of the time. We had just come home from Disney World and I'm sure there strep there in February!

 

Kiera- My prob with Dr. K isn't the phone consult fee, it was wanting to do such an expensive procedure without even extensively talking to us or reviewing dd's records. I am all for it if dd worsens, but the way he just went straight to that, and he didn't say it "might" be necessary just rubbed me the wrong way. I am thankful he is there, for sure! We may be off to see him at some point. It might just be the way he communicates and could be a difference in North/South culture.

 

Sosudden- Wow! Your daughter has been through he!!. So glad the IVIG worked so well! Hope the tonsillectomy was just what she needed. I am thankful that we found out about PANDAS so quickly after my daughter's onset (10 days or so). I can identify with how you describe your daughter before this hit...just like mine. So smart and fearless before this. I told people as we were going through the initial horror that it was like we were grieving a death because she wasn't the same child. There was no enjoyment of life for her, no childhood going on for those weeks. It was all horrible anxiety and OCD.

 

hugs2day- I am so hoping the antibiotics are going to put my daughter into remission. She has 15 more days of them. How long did it take for your child to go into remission? I agree about leaving the options open. We know that this road is uncertain.

[Kiera]

Sent you a pm, check the top righthand corner to get your message.

[bulldog24]

since this is a relatively "new" situation. You might qualify for the NIH study. There doesnot need to be a diagnosis in place.

 

dont be afraid to call. I didnt thinkmy son qualified but called anyway. best thing I ever did. He did qualifyIf you have specific q's pm me.

 

There has been nothing MORE helpful than having a diagnosis from the NIH. not to mention the care we got while in the study.

 

 

here is a link

 

http://pandasnetwork.org/2011/02/yale-nih-details-on-pandas-ivig-clinical-treatment-study/

 

 

again just call regardless of what anything on the page says!

[bulldog24]

did I mention it is free

[bulldog24]

http://clinicaltrialsfeeds.org/clinical-trials/show/NCT01281969