greeneyes48072

Well, not going as well as I would have liked, but Dr K said it can take 7 to 12 weeks to see full effect. Tics increased Tuesday and are still at the increased level even today. I'm hoping to see them drop off any day...

According to a local immunologist I sopoke to, she said as long as long as they have some IgA, they are fine (we didn't speak about IgG, but I'm guessing it would be the same). She said the problem is when they have absolutely no IgA, because if the body has no IgA, it would see the IgA in the IG serum as a foreign substance and the body would attack it, so she said levels didn't matter, just needed some...

I would recommend following Dr K's protocol to a T. He does things in a way to be very careful and avoid any major side effects. I even had some tests ran prior on my own. Checked for IgA, to make sure he had them (people without it can have a very very bad reaction to IVIG), also had him see a cardiologist and had his kidney function tested. As far as Dr K's ways, he uses a particular brand of IG for a reason, I would make sure to use the same brand. He gives the kids benadryl and tylenol to start, some saline before and after each session, I would follow his speed and amounts-broken into two days as well...I hope that you are able to get it as you hope! And that it does well for him! Thank you guys for everything.

Well I think it went pretty well. Dr K said he was one of the more boring IVIG's he's done-not too much as far as side effects. He was super nervous, of course, there was some drama putting in the iv, but I'm sure that's normal for kids. Then his only problem during the IVIG was a temp that fluctuated up and down from about 99.9. The morning of the second infustion Dr K indicated that he saw no facial tics and his pupils were dramatically smaller (couple of vocal tics remained). Today, first day after, he has had a pretty bad headache, but the advil takes care of it. Has also had a bit of a sour stomach, but not too bad-threw up once. He has been in a really good mood, but I don't know if that's the IVIG or not (he's been pretty moody during blow ups). Still no facial tics today, but the two vocal ones are still there, but less frequent (a nose sniffle and asthma like gasp). I will update again in a couple days...

Just to give you a comparison, we've been dealing with this since November. We get IVIG this week (yippie!). My son's primary symptoms are verbal and motor tics. He also has a lot of hyperactivity when it is bad. He is also very emotional, super sensitive. For us there has been no symptom free times since November. There are blow ups, which reduce a bit, but we have not seen the break that most people see after about 12 weeks. He's been on an antibiotic since...oh of my head about February I think. So it does not help us, though it does help some. The steroid burst helped a lot for us, but only the first couple tries, then it became ineffective. If it's that bad, and you haven't tried the steroid yet, it might be a next step for you...

Have you spoken to Diana yet? She is very informative. Have you tried a steroid burst since the IVIG? From the little bit I've heard, the burst can help a lot with a flare up that occurs after the IVIG. If you are concerned about whether it is indeed PANDAS vs traditional Tourettes, what about contacting Dr. Cunningham and sending some blood to her to check for the antineural antibodies...just a couple thoughts...

Hey Chris, How is your son still doing? We are within two weeks of our appt with oakbrook/dr k. I'm getting nervous! Just wanted to see if your son is still doing great!

We did the steroids three times. First time was a six day burst. Didn't work until day 5, but showed an 80% reduction. Within a week of coming off, tics were back, so we started a low dose of 4mg per day. The tics reduced even further within a day, by about 90%. After about another week the steroid became ineffective and we stopped. Then after a few months we tried one more six day burst. This time 0% reduction with tics, maybe a slight improvement with attitude. We told Dr K about this, and he said that it seems that the steroids only work the first couple times and that we "cashed out" on it's effectiveness...

Just to add to the heart concerns, we have IVIG scheduled for 6-26/6-27 so we took our son to the cardiologist just to be safe. He found no problems. We are also checking kidney's just to be safe. We excluded the PEX as an option because it appears to be much greater of a risk, blood clots being one of those risks...

I have all the procudure and diagnosis codes if you want to shoot me a private message...

The study that indicated plasmapherisis was better in kids with tics was a long while ago, '99. It also was one of the oldest I've seen. I don't buy into it, it was before they know as much as they do now. Dr K has been following his patients for ten years now. And as you can see from ChrisW, these tic kids are doing very well with the IVIG. It's also much riskier a procedure. Sometimes the plasmapherisis also includes the IVIG, and it is actually both in one (they clean the blood, separate out the antibodies, then add in the IG as it is returned to the body).

For spring break in Feb I took him to an indoor waterpark/pool. His tics blew up after and continued for a week or two at the increased rate. I thought he must have over done it and picked up a virus, slight cold. For his birthday this weekend we rented a room at an indoor pool and the kids swam for about two hours, not even close to how long he played at the waterpark in Feb. His tics blew up to their worst by that evening and have continued. Has anyone else noticed anything with indoor pools, outdoor pools or waterparks. Is it the chlorine, does it have something to do with it being indoor? I sure hope this won't happen every time he wants to swim outside this summer....

From what I know, the steroid burst is a diagnostic tool, not a treatment. Most people have only very short term improvement. We used it to try and give him at least a little relief from the tics, but as we found out, after the first one or two trys, it becomes ineffective. I don't know why, but was told by Dr K it is typical, he said we "cashed out" on it's usefulness. Supposidly a positive result from the burst is also indicative that there will be a positive result from the IVIG. I sure hope so! Thank you, and for sure I will post after. His tx is 6-26 and 6-27. We will have a five hour drive back on the 28th, so I'm hoping he's not feeling too bad...

We are having the IVIG with Dr K in about five weeks. Son is eight now (65/70 pounds), we did a steroid burst around christmas with a 80% reduction, continued a low does just after, bringing improvement to 90%, but it wore off quick. Tried steroid burst again in March, almost no result that time. Still working on the insurance part of it, cost will be about 10k. I will post results after the treatment...

How long has he been on the tenex? Tenex actually made our son worse, tic wise....much worse.

We are scheduled to do IVIG at the end of June (yay!!). But in the process of trying to find some alternate treatments and treatments that help the repair of the bloodbrain barrier I found articles that indicate that HBOT has been found to be very helpful, even in other brain related or neurological injuries/problems. Just an FYI... http://www.healingwithhbot.com/default.asp

Woo hoo! That is so great. I'm hoping to get IVIG for my son with Dr K in June. I hope we see as great of a turn around as you have!! I must admit though, we will probably keep him on the antibiotics long term. I would hate to have years go by and then a problem hit again when he is in his teens, at an age when IVIG is no longer effective...

I've been thinking about that myself. I was thinking of sending something, but thought about waiting until after IVIG in the summer. Did you send a link to this forum too?

Just checking in Linda, any improvement the last couple days?? Rachel

Amy so good to hear

Hang in there. Is this your first steroid burst? When our son did his first, the tics actually did reduce, but not until day 5. Reduced tics by 80% at that point, but lasted less than a week and went right back up to 100%. We then did a once a day low dose that reduced them by 90%, but then that lost effect after about a week. We just recently tried another burst. It only reduced his motor tics that time, and didn't even touch his verbal tics, which were pretty bad. Dr K said that the steroid burst only seems to work the first couple times and that we had "cashed out" on it's effectivness...but if this is your first, then maybe in another day or two you will see something!!FYI, our first burst was Methylprednisolone 21 pill pack...

My son's primary symptoms are tics as well. We have been dealing with this since 11-28-08. We have tried went through two different antibiotics, he is currently on azith. At no point have his tics gone away, even with the antibiotics (except for a week or two with the steroid burst). They got even worse when he had a cold a couple months ago, this was also right after he was at a indoor waterpark...Since we've hit the five month mark without any change, we are now looking to doing IVIG. If you haven't done the steroid burst yet, you may be able to give him at least a temporary break from them by trying it. Besides that, we have had no luck, though some of the other parents with tics have seem some help from keflex as their antibiotic...

Have you check out the Dr k that is mentioned often on this site? webpediatrics.com He is in Hinsdale, so not far from you. You may want to pay him a visit, even if it's not PANDAS, he's the person who can sure help you figure it out. From what I read though, it sounds like my friend's son who has JRA...we can't believe how much autoimmune issues there are in our area (MI). Our son's primary symptom is tics, but even though he was barely ticcing when we met with Dr K, he was still able to pick up on other symptoms we didn't even know about, which are part of the PANDAS picture...

Hey all, we went to see Dr k for the first time on April 10th. He told us something new, that I had not know from researching or reading the forums. He told us that the handwriting issue, along with drawing and items like that, is not because his motor skills are impaired, but that these PANDAS kids have a loss of short term memory. No problem with the long term. He said that short term memory plays a large roll in writing and drawing, and it is actually this loss that is causing the problem. (also makes sense when I read about the trouble building with legos) He also said this would be why I may find I have to tell my son to do something four or five times before he does. I felt horrible. Since I had not heard of it, I did not think his "forgetfulnes" was part of the pandas. I was always telling him he needed to listen "the first time" and that "I forgot" was not a valid excuse...

I'm a little late responding to the phenotype questions...sorry. I'm a probation officer, I'm not in the medical field. But I'm known for my investigative skills, great with numbers and computers. The first time I read Dr K's description of the PANDAS childs mother, I couldn't believe it, that was me to a T. I'm called anal all the time, don't have OCD, but ocd characteristics (and I like them), my mother is worse than I am and there is some mental health issues up my mother's side of the family. I know the strep suceptablility runs from my mother's side of the family as well...