7upMom

Worried Dad< Are you then coming up to your year of antibiotics that Dr K does? Is he going to extend this longer for your son? I appreciate your post on this- as we have not seen anything "bad" happen yet since ivig just improvement, but at the same time we have asked Dr K to up antibiotic to see about improvement from tics and he has not done so at this time, but after reading this, it is that same sinking feeling of I do not want to wait until its reactive anymore but def learned to be proactive and esp since spending this kind of money that we would have a hard time doing again.

For us no the ivig has not helped the tics any at all. His tics go up and down as far as whether they are better or worse depending upon the day but yet everyday yes, they are a regular part of his life. My 9 y/o will say- if this is all I have left are the tics, i am happy because I feel so much better. This is promising for us and we feel the same way, but still yes I would like to see him get rid of the tics esp the verbal ( this can frustrate people very easily because quite honestly it can be really annoying if you let it- we smile and try to just keep his self esteem high) I don't think reducing the antibiotic from 875 to 500 was the cause though, but Dr K does say tics are one of the hardest symptoms to alleviate and it seems like it takes the longest amount of time also. So no he is not reccommending a second ivig at this time, but time and we are fine with that, he is full of joy now and happy and we are enjoying him ( thats been a long time coming) so we are willing to patiently wait at this time as long as we don't go backwards. Personally, we would prob want a higher dose antibiotic if it comes to that before a second ivig- it is more in our budget ( : but if the rages were to come back I would do ivig again in a heartbeat.

This was exactly what we did. My 9 y/o was on 875 twice a day preIVIG and for approx 2 weeks after until it ran out-- since Dr K has done continuous scripts for augmentin 500 only in am. We are now 8 wks post ivig and the reduction in aug has not been a problem for us ( I was very nervous about the dosage also) The only thing was I did ask a couple weeks ago about possibly up'ing the antibiotic to see if it would help alleviate his tics. Behaviorally he is 90% better on symptoms but he does have motor tics and verbal tics quite a bit and some ocd remaining. The ivig so far has not touched on helping with his tics at all. Dr K thought it would be best to give it some more time for him to continue to heal at the dosage he is on (500) and see how this goes before up'ing it any. He is scheduled for a t&a next month though and Dr K said we will increase it before, his ent wants iv antibiotics during, and after increase also. I am curious to see how this will affect his tics, if any. But as far as switching down to the 500 mg, I know it is nervewrecking, but we have not had issues with it.

I absolutely do not mean to scare you and do understand that all children react completely different and know that my 9 y/o son may not have the exact same issues as your daughter. But I do feel compelled just to say that - when our son was 6 y/o ( looking back he had prob had PANDAS for much longer than before 6) but he was diagnosed with rheumatic fever- they placed him on long term penicillin. During the time on penicillin he was the most healthy we had ever seen him since he was 2- but after being on it for for 1 1/2 years they removed him from it and within one week he started having tics, then severe ocd, then major rages ( major PANDAS exacberation) and it never subsided but in the next year and a half of his life cont'd to get worse and worse until he was completely nonfunctioning, and placing him back on the penicillin and a changed antibiotic did not help either, until we did IVIG 8 weeks ago. I am not saying this will happen to your daughter, but please keep in mind that the penicillin did work for us until he went off and I would have given anything to be able to go back and change the doctors minds on what antibiotic he was on and taking him off of it. Again, I am sorry to word it so "scary" and this is just what happened to us but hope that maybe this will give you another avenue to look at when the time comes.

This sounds like one of the most done and longest sticking around tics my son has also

One of my son's tics was a movement of on tiptoes with toes bent under and bending them back with his weight repeatedly. He said it hurt and it looked painful, but holding it in would only last a short time and make it worse.

My 9 y/o son is 6 wks post IVIG right now and has had PANDAS for years. He is scheduled for a t&a in July. Dr K said 12 weeks out from IVIG he should be just fine and he had no problem with this procedure being done. Our ENT doc is doing it hospitalization though with highdose antibiotics before ( tbd what kind yet), iv of antibiotics during and highdose antibiotics after for a longer time than normal. He also will be culturing the tonsils, just for his own curiousity. My son was having a very bad ocd day when we were at his office and it took him 25 minutes to get from one side of the room to the nurse and then cont'd on thru the whole visit and the doctor was just fascinated by him, so it really peaked his PANDAS curiousity! We are doing the t&a because he wears a cpap machine at night due to sleep apnea, we are hoping this will make it able for him to get rid of the cpap ( :

We have BC/BS of Illinois PPO also and our consultations with Dr K were covered too. We are a little over 5 weeks post IVIG and just got one of our EOB's back from Dr K's submission- they are agreeing to pay 400 of the 2400 fee. I am going to wait about a week to see if we get EOB's back from Oakbrook and for the medicine ( that will be the big one) and see what they are going to pay or deny - I can let you know where we get with BC/BS if you'd like MomWithOCDSon?

In ref to your heading question Does IVIG really even work? We are 4 1/2 wks post IVIG- I was skeptical preIVIG but hopeful but yes def questioning will this really work for our son ( his age 9 , how long he had suffered, how nonfunctioning he was - it all worried me) and I can report that we are 100% thankful and have NO regrets of going thru with IVIG and the money we shelled out on it - would do it again in a heartbeat if time reversed. We are Not 100% recovered yet, not even close, placing a number on it is hard maybe 40% but seeing him be able to cope, not rage- he was nonfunctioning and I thought there was no way school was even going to happen until after summer- but he is going 2 hrs a day now ( : that is HUGE!! He still dislikes math , lol, but can do a page of math problems - you couldn't even mention the word math before without a meltdown! He is on no SSRI's anymore , he is not in any therapy anymore, and the biggest improvement I have had family tell me he just seems more peaceful and yes he does - even if he tics still, he is just more at peace. We will continue to fight for 100% recovery for him but so far we and everyone close to my son has been made a believer and absolutely amazed by what Dr K has given us back.

We struggle with this with our non-Pandas boys - My 16 y/o has track until 5:30 then straight to baseball practice then homework, part-time job and church3 times a week. He has a very big social life also and chores at home. When is too much pushing it? well personally I think it depends on each child and what they can handle- I have a 17 y/o that can't handle a job,sports or she can't keep up with homework, so she is in church, and house chores. Then my 9 y/o Pandas guy- we absolutely 100% only do what he can handle- maybe thats enabling but I call it adjusting.

Personally I have had the hardest time with allergist/immunologist depts here with even talking about Pandas and then with a correct treatment of Pandas. I am not sure if it has just been coincidence or if others are finding this but we have found the doctors most willing to be open, research and help us are young ( exception Dr K who I will just call very young at heart ( : ) My son also had IVIG in April - how are the results you are seeing for your daughter from IVIG?

Did you figure this out?? I am still unable to get in and have been trying since the beginning. I have even tried to call Pepsi and can't get any help there either, getting frustrated and don't have every waking minute to work on it.

Thank you!!!!! Wonderful segment!!

When my son was diagnosed with R/F the diagnosing doc told us antibiotics till 18, then cardiac retests and if failed then lifetime. Our reg ( now ex) pediatrician disagreed with him and removed him from the antibiotic after 1 1/2 years, within a month our son began ticc'ing and spiraled downhill very fast. By the time he was placed back on the penicillin it was too late and it didn't do any good. I sometimes wonder if we had kept him on the initial medication would he ever have spiraled or maintained managing the PANDAS. very interesting how even with how long rheumatic fever has been around there still isn't agreement with doctors on how to treat it.

... on the weekends she starts 1st thing in the morning... she watches out the window to see if she can tell if they are home. I put a rule in place that she may not call until 10:30... and she she can not knock until 11:30.... but this always leads to meltdown when she realizes it is just 8 am or earlier! Never in a million years would I have thought I would have laughed about going thru this with my son ---but my husband and I just did- not out of rudeness but out of wow- familiarity- because this is exactly the same rule ( times and everything!!) we had here all last summer and weekends this whole year- and ditto for the days he rose early and just irritably watched the clock. I don't even know if there is a right or wrong in any of this but just a matter of doing what works best for your family to get thru ( that took lots of trial and error here) !!!

My 9 y/o son also went thru this with the neighbor boys. It was almost borderline stalking, but I truly don't think he could help it. He once went to the house early morning and knocked on their door for almost 45 minutes straight, he will go over to their house continually to check and see if they are home, or call repeatedly ( sometimes I don't even think they answer their phone anymore on purpose cause he is just so frustrating like that) but he would go into meltdowns if he couldn't do it. He was just so obsessed with playing with them. He is better about it now but we stay on top of him knowing this is how he is. I think it is a part of my son's ocd, he becomes stuck on things - making something, wanting to buy something, wanting to do something. He almost just "needs" to do it. We try our best to manage it because if we give in all the time, I am sure it will turn into a behavioral thing also ( kids are too smart for it not too). I think for him sometimes it is his ocd and sometimes it is behavioral, and I agree telling the difference between the two is really hard!! we have set really clear limits for him and if he crosses a line of controlled fit to uncontrolled fit then he is done and not allowed to play with friends at all for the day. This is hard esp when it can set him off to a complete rage. Also though I have noticed with him, sometimes what starts off behaviorally can go into a pandas fit, only because he is lacking the maturity and ability to reason it thru. Although now since IVIG - we are two and a half weeks out and have not had a fit for 4 days straight that is a miracle here!!! ( : BTW- we also did 4 years of behavioral therapy ( I believe in it ) but for these events it didn't work there was just no reasoning for him during these modes.

( : Happy Birthday to him!!! So great to hear was a good day for your family!!

not to hijack this thread but hopefully add some to it: what are some of you guys having your kids drink?? That has been my toughy to find, we don't do pop or caffeine, but keep waterbottles but they like it flavored- and my husband swears that koolaid (Not the sugarfree) is better than the sugarfree taste packets of just about any brand beings almost all have aspartame. Too much juice and my kids get diarrhea ----so what else is there really??

We have such a big family here ( 7 kids including two sets of twins) that it is really hard and expensive for us to follow an organic diet. After 9 y/o IVIG- we followed Dr K's recommendation of high tryptophan foods for better sleeping and supplements ( fish oil, ester c , etc) . We only eat fresh veggies and fruit and buy a cow and pig from local farmer ( natural fed) for meat. We don't do sugar supplements, or anything with aspartame in it, we don't do junk snacks etc either. Sometimes I am also appalled by what they are given to eat at school ) : I know this isn't a high tech diet but I am just so worn down I just do the best we can and this is what that is for us ( :

Keep your head up even when you get discouraged and frustrated- it will cycle back around for you and that fighting spirit will come raging back. Just a moment to cry though that we all understand and we all cry with you too and then fight alongside you the next day!! Hang in there

This made me smile that she is excited about kindergarten- that has to feel so happy for you!!! I can't wait for the day he is excited to go back to school ( :

Did you run family titers just the one time or do you do this every so often ( like every 3 mths for ex) on everyone ??

We didn't do the cunningham- we were sure with his dnase titers and past history that he did have pandas. I'm sure there are other reason why parents get it done also, but I wasn't that familiar with the ins and outs of the numbers yet. I struggled with feeling so lost in the whole process and pulled in so many different directions until one day it just clicked for me, this is whats wrong -this is what we need to do and everything else has just sorta fallen into place after that.

My daughter did this when she was around 8 for a very short time ( mainly eyelashes for a couple weeks). She is now almost 18 y/o. She does not and did not have PANDAS. She does have OCD though, she is a 'collector of things' ( things I think are trash ) She is very happy and does not show stress and anxiety in ways like other kids. It comes out in OCD behaviors- counting, touching, collecting and that one and only time it was her eyelashes. But my 9 y/o does have Pandas and it NEVER hurts to get it checked out. JMO: I would recommend she just gets it done to rule out medical before pursing anything that would consist of medication for ocd behavior.

So far, it is def not worse and I keep praying it just continues to get better !! It is hard when he's had a pretty good day and then starts to spiral down, I have to remind myself what it was like before ( we didn't have good days hardly at all ) We are also working on sorting out now what is PANDAS and what is behavioral- this was very difficult before to distinguish between.