greeneyes48072

"Association of schizophrenia and autoimmune diseases: linkage of Danish national registers". The American journal of psychiatry 163 "Immune dysregulation and self-reactivity in schizophrenia: do some cases of schizophrenia have an autoimmune basis?". Immunol. Cell Biol. 83

Yes, both my son and I are allergic to pen....not to mention sulfa and rocephin (family w/keflex)

We did it w/ Dr. K 750mg/kg/day for two days for a total of 1.5g

I highly recommend the IVIG. We did it twice, June 09 and Nov 09. He is still in the healing process, but he actually has near symtptom free days. We never had that prior to the IVIG. In the last two months, only one tic flare up. All other behaivoral and developmental issues subsided after round one, round two was for the continuing tics....and let me say, it was very night and day before/after treatment. We didn't even realize how many behavioral things were linked to the PANDAS until they subsided.

I don't have a lot of time, but wanted to just add, just like people who have mitrovalve problems (heart), these pandas kids also have to take a antibiotic specifically before going to the dentist...just don't know which one or how much...

Dr. K told us 12 weeks. I think the 30 day thing is for people who get IVIG because they have no IG's at all of their own. I also read somewhere that anyone getting IVIG for any reason cannot get vaccinated within 6 months, so it may still have some effects that last that long...hope that helps a little...We are at the 4 month mark, and I emailed Dr. K friday to ask what to do next, since he's still having bad tics...still awaiting a reply...I'm guessing he may be out of country...

Thanks...

I just wanted to add to keep in mind the steroid might have lost it's effectiveness. Dr. K said that is common. When we did a burst earlier this year, it's effects only lasted about a week. Our local peds then allowed us to go back onto it daily in hopes that would help. He again showed a decrease in symptoms when we restarted it, but after another week or two it completely lost its effect.

Some the kids continue to see an elimination of symptoms after antibiotics, so that would be a good step, shop around for a doc that will give him some now. I would also call Dr. K for a phone consult. We did our stuff in person, so I don't know how much he will do by phone, but he takes care of our prescriptions for us too, even though we are in a different state. If you are still trying to confirm PANDAS, another good thing to try is a steroid burst. If it is PANDAS you will normally see a reduction of symptoms on the burst, which would be nice to give your son a break, but keep in mind it is only a temporary reduction. Ours only lasted a week after the burst ended. We hit a lot of walls with doctors, but had to shop around ourselves. I found a local peds that believes this is what he has, so before we finally met w/ Dr. K, the local peds allowed us to try anything we found out about online...you just have to find the right dr.

I just called the manufacture...it's no problem to get saline before or after. It just can't be mixed with the IG solution, or given in the same line at the same time....phew. EAmom, I didn't comment on the other ?'s before. PEX is not an option for us. The risks are too high for us to consider that. My son weights about 70 lbs. He can do augmentin, so he is on 500mg of azith twice a week Mon/Thurs. Back when he was on it daily, prior to IVIG it was ineffective for his symptoms, but if increasing that could help in conjunction with what the IVIG can do, then I have no objections to trying it.

EAmom, yes Dr K uses Gamunex. What does that mean it is not compatible with saline? Is there another substance they hydrate with via IV? Maybe I got it wrong, Worried Dad, do you know? You did it with Dr. K. too. All I know is that before and after the infusion they gave him fluids via the IV (a bag before and after) to hydrate him. Dr K said it was because the better hydrated he was, the lower the likelyhood of headaches as a side effect. I'm not in the medical field, so maybe it was something else...but now you have me worried...but Dr. K has been doing this nine or ten years, I would have to think he would know that.....oh my....

Yes, you were actually one of the first people who contacted me back when we started down this road. It was this forum that really kept me going when all this started. I check in on your posts when I wander in, your story breaks my heart so much. Our trip down this road doesn't even compare to yours. We also had to pre pay, but have rec'd about 75% back so far. We have already had multiple bad experiences with Children's, so we are done with them. Dr. K is the best, and is good about working with us via email, so I am comfortable with that. If we need to do another round, we will try to do it local, but you know darn well I will make sure it is exactley the same, right down to the brand of the IG and the use of saline before and after the infusion. Though before that I would think we would try an increase in his antibiotics or try another steroid burst...I hope things go well for you guys, I know it was getting really hard...

I know there have been a lot of new faces since I was on this forum daily. I will copy and paste our history for you guys, since a lot of you were not here back then. Yes he did have the yelling tic prior to IVIG,but it would not start as soon as he woke up...it would develop as the day passed. He did not have any issues prior to his strep infection (though we believe the damage started after his second to last step infection, he had a throat clearing thing that we contributed to allergies, but in hindsight, think it was a minor tic). He is currently on 1000mg of azith weekly, 500mg Mon/500mg Thurs-Dr's K's protocol. He is allergic to penn and sulfa. Prior to the IVIG the antibiotics did not help, we had him on them daily for a month. The only thing that showed temporary improvement was the steroid burst, but when we tried to do it again, it lost it's effect. We did the IVIG in chicago with Dr. K on 6-26 and 6-27. Our history below... Son Age, 7(now 8) Onset 11/28/08 Michigan Child gets strep about once a year (as does the mother). Positive rapid strep test was done on 11-26-08. Tics started on 11-28-08 , but not completely apparent until 11-30-08 . Child never had tics prior to these dates. -at this point tics were verbal only and consisted of a cyclical routine of saying “jeez”, then clucking his tongue and clearing his throat. There was also an episode of squeaking, which caused difficulty breathing (not to mention panic), resulting in a trip to the ER. Child taken to Children’s Hospital-Detroit 11-30-08-bloodwork done, advised by staff that the results were normal (still attempting to get the numbers). Dr (child neurologist) refused to discuss the possibility of PANDAS and would only mention Tourettes and could not see the child again for 8 weeks. Appointment made with a different pediatric neurologist out of Ann Arbor for 12-9-08 . Same result, didn’t seem to believe in PANDAS, though he knew of it, and prescribed Tenex (typical Tourettes Rx). -by this appointment motor tics developed, head shaking, and super hyper activity. The tenex made his tics much worse, so bad he could barely get through the day. The next day an email was sent to Dr. K with his symptoms thus far and he indicated that it did indeed sound like PANDAS. This email was forwarded to the Ann Arbor neurologist along with being advised that the Tenex was making it worse. His response was “you are obviously going to do what you want against medical advice”…the search for a new doctor continued. The child’s regular pediatrician was contacted to request a steroid burst. Request was denied and response was similar to that of the Ann Arbor doctor…looks like a new pediatrician would be needed as well… On 12-11-09 child met with current pediatrician. He confirmed that it appeared to be PANDAS and also explained a similar disorder Sydenham’s Chorea. He prescribed Klonopin that same date along with Bactrim as a prophylactic. He started him at .005mg a day to start, then increased to .01mg a day. After a few days at the .01mg a day his tics increased yet again. The Klonopin was discontinued and the tics reduced back to their starting frequency. On 12-23-08 he started a 6 day methylprednisolone steroid pack. On 12-27-08 an 80% reduction was seen. Improvement continued for approximately a week and a half. Tics then starting returning to higher/original frequency. On 1-6-09 he was started back on 4mg of methylprednisolone in an attempt to reduce the tics enough to get him through school. Tics reduced by 90% after first day of use. The effect of the steroid became ineffective after about a week and a half. On 1-14-09 child reported trouble breathing and it was considered a possible allergic reaction to the Bactrim (sulfa). He was removed from the Bactrim and put on Clarithromycin. Tics continued to increase. On 1-23-09 he was removed from the steroid and clarithromycin and was put on a full 6 days dose of Azithromycin, with a preventative daily dose of 250mg a day thereafter. -first week no reduction of tics, but an improvement in mood and ability to fall asleep. -as of 2-8-09 , reduction in verbal tics, but continues to have motor tics(currently head turning and mouth opening). Since 1-23, he also started to display facial tics along with temporary inability to use his vocal cords (duration a couple hours) which has occurred a few times. Child will continue on the Azithromycin for now. (we did only azith from that time up until the IVIG, with no improvements) ***Side notes: In hindsight, onset may have occurred after a strep infection in 12/07. Child started to show trouble sleeping and a fear of the dark. Also had some excessive throat clearing, which was thought to be related to allergy season. Possible Genetic Family Connection: Mother has been getting strep at least once a year, all through childhood and adulthood. Also has trichotellomania which started around the age of six or seven. Was also hospitalized at the age of 4 during a strep infection due to strange delirious like behavior. Could this have been PANDAS as well??

Both my son and I are prone to strep. I don't often get anything else, just strep. Once or twice a year. It has always been like that for me, even before my son. My mother was the same way...prone to strep.

I must admit, I have not been checking in very often at all. I'm a still drained, so I am just going to copy and paste the update I just sent Dr K and my local ped at the 13 week mark. I still hope that maybe it's just taking longer for him, but my heart breaks that even at this point it has seemed not to work on the tics... Our one week follow up with Dr. Kovacevic: Sunday-tics less, in good mood, only visible tics were a nose sniffle and squeak/asthma like gasp. In good mood, but fairly hyper. Monday-tics even less, only a nose sniffle this day. Still in good mood, still hyper. Tuesday-tics increased, yelling/loud talking tic returned. Not so hyper, but kind of a nasty attitude. Wednesday-tics still increased, still has nose sniffle, squeak/gasp and yelling/loud talking. Still has bad attitude. Thursday-tics still increased, still has all three, sniffle, squeak/gasp, yelling. Still has bad attitude. Friday-nose sniffle has stopped, but still has the squeak/asthma like gasp and yelling/loud talking. Also saw a few mouth opening tics. Still has bad attitude. Saturday-so far (as of 11am) still has squeak/asthma like gasp and yelling/loud talking. No sniffle tic seen since Thursday. Have not seen mouth opening tic yet, but only been awake three hours so far. Not sure about attitude yet, no defiant behavior yet today... One month follow up: As of today, Sunday 7-26-09, he still has the yelling/loud talking tic. It pretty much starts first thing in the morning. Have not seen the nose sniffle or the gasp like tic in about a week. He seems to be having a slight eye tic, but cannot tell for sure, not happening often. His mood is still irritable and he is still very emotional, easily brought to tears. Eyes to not appear very dilated, but not sure how bad they were before (hard to notice with his thick glasses). He is still having trouble falling asleep and afraid to sleep alone. He is not urinating more than usual. We are really hoping to see a reduction with the yelling tic, as it is upsetting him. He is on all vitamins and azithromycin as ordered. Three month follow up: The first four to five weeks post IVIG he had a blow up of his tics. Through week five to six they were changing daily and finally settled down to just a nose sniffle and occasional yell outburst and facial grimace. That lasted for about four weeks (almost symptom free these four weeks), then in the 10th week post IVIG his yelling tic started showing up a few times at night. Then by the 11th week he was fully blown up with his yelling tic, his nose sniffle was back and a physical tic where he would shrug, looking as if he was trying to adjust his shirt was pretty constant. This lasted constant, all day long through week 12 and just now, at the end of the 13th week things have settled down. The yelling tic is completely gone, but he still has an occasional nose sniffle, facial grimace and shrug...I would say not more than a few throughout the day. As far as behavior, his mood has been better, he currently loves school (he hated it last year), even wants to go to latchkey early to play with the other kids. Bed time is better, he needed a night light for awhile and it could take up to two hours for him to fall to sleep...now he has no problem sleeping in his own bed, in the dark (no night light needed) and falls asleep in 15-30 minutes. During his 11th week blow up though, his pupils did appear larger...but I'm not good at rating that. Week 14 showed a flare up yet again. His yelling tic was back again, all day long from the moment he woke up. Prior to IVIG his tics would be quiet in the morning and get worse as the day progressed. Now they started as soon as he wakes. He also has facial tics, multiple now, some head shaking as well, and looks like some chorea arm movements. These continued constant and now at week 15 the yelling tic is slowing again, but since it only left for a week the last time, I really doubt it will stay gone....

-primary symtpom were/are tics motor and physical -six day pre-pack 21 pill methylprednisolone -taking abx at same time, had already been on it for a month or two -about an 80 % reduction seen -reduction was seen on day five of the burst -improvements only lasted a week and a half

Did you do a steroid burst yet? As far as the testing, Dr K did not ask us to do any of it. Being the anal person I am, I had out local peds do the IGa, kidney function and cardiologist visit before our IVIG date...just to be safe. It all came back fine, but you just don't know with how related it is to SC.

I know there are a lot of new faces here, so just in case you didn't know, a lot of these kids have a flare up ANY time the immune system is stimulated, meaning any bacteria, any virus and other things including immunizations and vaccinations. My son would sometime have his worst flare ups after swimming at a public indoor pool, I'm guessing due to high levels of chlorine or other chemicals.

About the abx: Yes Dr recommends for at least a year after...but we plan to continue past that. About the tics: Sudden onset three days after a Strep Infection. No signs prior, though in hindsight, we think there may have been a prior occurance, just not noticeable (we get strep once a year in this household-have always ran to the dr at first sign). Tics have continued constant since that sudden onset in Nov '08.

Hey all, just posting for those considering IVIG or those who have done it and want a comparison. Sorry, I haven't been checking the forum that much lately, just tired out. Ok, so as of yesterday he is still ticcing every day, almost from the moment he wakes up. He is down to one primary tic, but it is the most intrusive one, his yelling loud talking...about every third word when he talks comes out in an ear piercing scream. The nose sniffle seems to be gone, saw it maybe once yesterday and the asthma like gasp seems to be gone. He seemed to have a few facial tics, but nothing continuous. He is very frustrated because of the screaming tic...he feels like he's not getting better. I'm feeling discouraged myself, but I know it can take time (thank you again for the pep talk Diana). He is still somewhat moody, but not AS nasty as he was a month ago. Not too hyper, but still super sensitive and emotional. Crys and gets hurt feelings from almost anything. He is still having trouble falling asleep and sleeping alone. The frequent urination is gone. I think that covers most of it. Dr K says that it is not considered a failure until the 12 week mark, so we still have two months to hope for good progress. I also heard from a parent that the healing can continue beyond that 12 week mark, and that it still may not be a failure even if we don't see the progress we hope for by that time...

I plan to utilize the phrophylatic use of the antibiotics for a long time. We are also doing Ester C, Follic Acid, Vitamin E and Fish Oil daily as recommended by Dr K...

Just so you know, Dr K has our dose at 500mg twice a week (mon and thurs). Prior to our IVIG our local Dr had us on 250mg for 5 days, then off 5 days, then on 5days ect...Dr K said the 500mg twice a week was enough. And I only speak to Azithromycin. It's an antibiotic that stays in the system longer than others. Thats why you get a Zpack five day, verses a ten day dose with other types...

What I have learned from the other parents that have dealth with this and Diana in CA who has seen pretty much all case by case history, there are some kids who respond to the antibiotics and have resolution of symtpoms each time they take them, and then there are some who never find a reduction with antibiotics and only use it to keep infections away. We were the unlucky ones who saw zero improvement with the antibiotics. He has had symptoms since nov last year, with no stopping. There have been worse days than others, but never a symptom free day, except just a couple after the steroid burst. Also, just so you know, the steroid burst is mainly for diagnostic uses. It's effects are usually only temporary and short lived. Some kids have a longer reprieve than others, so it may be worth it to make sure its PANDAS, or just to give your child a temporary break, but it will most likely only be a short while. For us the effects started 5 days into the burst, and lasted less than a week once we were done with it...

There a lot more symptoms that go along with the tics if it is PANDAS. Separation anxietry, frequent urination, decreased quality in handwriting due to short term memory loss, most have problems falling asleep at night (couple hours worth), OCD behavior, enlarged pupils and others that I'm sure I've left out. The mechanism behind TS and PANDAS is different, but they effect the same part of the brain (basil ganglia) and that is why they look similar, with similar symptoms. In Pandas there is damage to the brain after an infection that causes inflamation, in TS I believe (not sure since we're PANDAS) it has to do with a malfunction related to seratonin. If you don't have any of the symptoms to go along with it, it may be TS. Something that I have seen with our son is that traditional TS meds make him worse, and then something that would normally make someone with TS worse (steroids) actually caused a temporary improvement...I'm sure some of the other parents on here will add a lot more for you...

Not sure what to think right now. I know back when we did the steroid burst, his results were delayed until day 5 of the burst. So I'm hoping that the same is true here. He was in a really good mood Sun and Mon. His bad attitude/defiant behavior came back Tues, and has remained every day since. Here I'll just copy and past my week update I emailed to Dr K: Sunday-tics less, in good mood, only visible tics were a nose sniffle and squeak/asthma like gasp. In good mood, but fairly hyper. Monday-tics even less, only a nose sniffle this day. Still in good mood, still hyper. Tuesday-tics increased, yelling/loud talking tic returned. Not so hyper, but kind of a nasty attitude. Wednesday-tics still increased, still has nose sniffle, squeak/gasp and yelling/loud talking. Still has bad attitude. Thursday-tics still increased, still has all three, sniffle, squeak/gasp, yelling. Still has bad attitude. Friday-nose sniffle has stopped, but still has the squeak/asthma like gasp and yelling/loud talking. Also saw a few mouth opening tics. Still has bad attitude. Saturday-so far (as of 11am) still has squeak/asthma like gasp and yelling/loud talking. No sniffle tic seen since Thursday. Have not seen mouth opening tic yet, but only been awake three hours so far. Not sure about attitude yet, no defiant behavior yet today...