amy s

I don't have time to respond...but you should read this thread. http://www.latitudes.org/forums/index.php?...082&hl=RAGE good luck to you. I will try to check in with you later. regards, amy s

Hi all, I just wanted to jump in here real quick and let you know that my dd (age 7) is doing very well still at 22 weeks post IVIg. Absolutely NO OCD, no rages, no psychotic behaviors, no skin picking (this was one of her OCD behaviors- one of many), no urinary issues, no separation anxiety, not really anything much left except occasional emotional times which is hard to blame on pandas to begin with (maybe it's just her!) And it's not a problem. She's very happy still and we are thrilled. Just last night, I returned from a business trip/medical conference and was away for a whole week...something that would have been impossible for us before (well...even work was impossible for me for a while since she couldn't even go to school for a time). We don't feel like we are out of the woods, though. We are always on the lookout for symptoms. Always on guard. At this point, if she started getting symptoms again my plan is that I would advocate for full strength antibiotics and a steroid burst and if that didn't work, we'd do IVIg again in a heartbeat (if we can hurry up and save the money!) We always think about all the pandas families on here and know what you are going through is so hard. We are still not over the toll it has put on our family...but we're trying. Tonight we went bowling...what a blast! It is so nice to NOT be isolated anymore. I remember so many times which we just couldn't do anything because of how sick she was (even grocery shopping). At times I hate to even think back on those days...I just want to move forward and continue to try to heal as a family but other times it is good to remember...it keeps us vigilant. Sometimes it is very difficult for me to read the new stories, but I check the boards here daily, if I am home. My dd is taking Augmentin 250mg daily, in case anyone wants to know. We think about you all. I'm so glad that this board exists. regards, amy s

I have heard that it can last anywhere from 2-3 days to up to 90+ days. However, when my dd did her steroid burst the positive benefit lasted only as long as she took the steroids and was over immediately after it ended. Good luck! Hopefully you will have long lasting results for your child and now you have a more definitive treatment plan! (Being that if the steroid burst works...you have a better chance of IVIg working! Take good care!!!

Yes it does sound like it could be pandas, if you ask me. I don't have time to respond much right now but my best advice is find a physician willing to at least check for strep. He could have strep right now and won't be treated to get rid of it! Much less it could be making the pandas symptoms worse. Do tons of research on your own including reading everything you can find on this board and other places on the net. Also, a good web site is www.webpediatrics.com Good luck to your family.

I have heard (almost) exactly the same statements regarding snake oil salesman...yadda yadda...people trying to take advantage of those who are desperate. Maybe Dr. K is getting rich off this...if so good for him. At least he is a mover and shaker and taking care of these kids by looking outside the box! And another comment I wanted to make is that I don't think anyone knows or feels for sure that IVIg is a permanent solution. Many of us who have children who've had IVIg do not feel this this is permanent (we hope it is but)....we wait in fear every day wondering when the next thing will happen, just like the rest. I just know that my dd never got better until IVIg. And the reason I say this procedure has saved her life is because her symptoms were so severe she would have ended up institutionalized at some point (and more than one doc tried). Now we feel that there is hope for her future and her life. She had a few episodes of time that she was better (very short lived) and still all symptoms were not gone like they are now (still 20 weeks post IVIg). Some people can get symptoms to clear with abs but we couldn't. Also as you have found, I find that any time someone mentions a message board; they're in trouble with the dialogue with the physician. Always... always take peer reviewed medical journals articles (even if you have to pay for each one) so they can prove (when it comes time for them to prove why they made the decision they did). And I honestly believe not to even mention a message board. I agree we must all become our own experts and not necessarily have blind faith that what we read on the internet is true. Now, this doesn't help you much right now. Hopefully you can find the answers you need for your child's personal situation. I know the fear you have about the symptoms coming back when changing the abx. Hang in there. Drug resistant super bugs are horrible as well, so you don't want to use up everything in the antibiotic arsenal and the wise thing is to use the minimal of what works for your child. But pandas is so severe that when it happens we all understand wanting to come at it with the biggest guns in the arsenal. It's hard. Keep us posted on your child's progress!

I am so happy to hear that your son is doing better after IVIg...and that you were able to get it done. My dd had IVIg in November and is doing great still. It is absolutely amazing. I would do it again in a heartbeat if she needed it. I agree, for us, it was a life saver.

Nobody recommended this (except me), but my dd was tested for selective IgA deficiency because of what I had read about those with selective IgA deficiency having anaphylactic reaction to IVIg. But with a lot of things, the jury is still out whether or not the people who have it really do have anaphylaxis or not with IVIg. My dd did very well with IVIg and is now doing very good. She did not have tics though. She had severe OCD intrusive thoughts, tremors to include her upper body and head, OCD movements and severe skin picking. Out of those she still has mild hand tremors which she had before the pandas OCD explosion. Good luck to you.

My dd is around 70lbs and is taking Augmentin 250mg once daily. Dr. K recommends to have antibiotic therapy prophylaxis for one year and then re eval....however I want her on AB prophylaxis at least until she is 18-20. But, that's just me.

Great point..... I completely agree. This would have been our next visit if we hadn't seen dramatic results with the steroid burst and IVIg. We had gotten a referral for an immunologist as well. We still might end up looking into this avenue at some point.

A pediatric rheumatologist was very helpful for us. Even though they did not give my child the steroid burst and IVIg...they did agree with Dr. K's plan that it was probably the best option for treatment of her specific condition, given the history and tests that had been done. They said that they might have done it if we would have lived closer so that they could monitor her. http://en.wikipedia.org/wiki/Rheumatology

I just double checked my dd's records...her's was negative in two separate tests...one that was done when she first was checked out after her hand tremors started at age 4 and then one that was done after the explosion of pandas symptoms was negative also. This is very perplexing.

Thanks, my dd is still on Augmentin 250mg daily (70lbs). I want to keep her on prophylactic abx for the next 10 years at least...however, Dr. K recommended one year post ivig (and then re eval). We'll see what happens. regards, amy s

Hi all, I wanted to post a quick update on our situation. My dd is post IVIg 17 weeks and is doing really great. Most of you know that after months of severe pandas symptoms, relocating back to the US and finding a great pediatrician, my dd had IVIg in November. She has had continued improvement, so much so that not only is she back in school, but I have started working again (and full time, at that!!) Things have finally turned around for her and our family. While I am still concerned that she could have a regression at some point, we are no longer on pins and needles. I check the boards here on a regular basis, but have been very busy. I would say that my dd is 99% back to her normal self, still a bit hyperfocused on things she likes (cartoons, video games, certain friends, etc) and a 'loud talker', her learning ability is coming back but the brain has had some catching up to do (math facts, etc). She is a voracious reader and excellent with spelling, very humorous and playful again. Before IVIg she began having bowel issues in addition to the usual pandas urinary issues and now all of that is resolved. We have had several household illnesses and she has not had any significant issues...except for a limited amount of time (30 minutes?) whereby she was not acting like her normal self...more like her pandas self (minus the OCD part)...and these were definately during times there were household illnesses. She does still have mild hand tremors, which she had prior to the sudden onset severe pandas symptoms, but as I've said before that I read that could be a 'soft sign' along with milkmaid grip, prior to symptom explosion. In her case, it was true. Those that have questions on how we got to the decision to have the IVIg..... we had to. First...the steroid burst that Dr. K recommended worked and we felt we had confirmation that this would work. Thinking about the risk of IVIg vs possible benefit was all it took due to the severity of my dd's symptoms. She had a very severe case that in my mind was life threatening. We had tried antipsychotics and SSRIs, had all the labs, MRIs, Spect scan, EEGs to rule everything else out and nothing helped (meds only worsened her IMO). What helped our case.... finding the right pediatrician...seeing a pediatric rheumatologist to back up that IVIg was a possible treatment for her...and Dr. K's help with email and a telephone consult...he worked with us by sending his IVIg protocol. He was wonderful. Would I do IVIg again? In a heartbeat if the symptoms come back. I probably will not be able to do it the way we did it before so I will go to Dr. K next time and pay upfront...which is why I am going back to work while I can. We are enjoying our dd so much now...we realized all those months (15) that we lost with her and now that we have her back every day is precious. I hope that you can all find this joy as well. I've had a couple of emails lately asking for an update and so I wanted to post! I am thinking of all of you dealing with this. I will continue to post on the boards but am so tired this week from my first week back to work!! regards, amy s

Some medications change vision (in particular psych meds). I would look at that first, I don't know what she's taking...secondly...my dd had changes in vision which was not explained by medications...I KNOW THIS FOR SURE....yet no opthalmalogist could pinpoint why. I would go ahead with any appts related to vision that you may already have...just in case. Good luck.

The prednisone dose we gave our pandas dd was 1mg/kg/day for 5 days. Good luck, natterbus. Sorry to hear your child worsened.

you could pass along this info... http://www.k12academics.com/pandas.htm I just found that page myself recently. That particular page doesn't have tons of info on it but educators might like it especially since it is geared toward them. Also, as posted the other day in response to a post from michelle, this site http://www.tourettesyndrome.net/education.htm has some wonderful information for educators and about navigating the IEP process, parent rights, homework issues, separation anxiety issues, rages, OCD in the classroom and a lot more.

Here is the page I was talking about... good handouts for educators http://www.tourettesyndrome.net/education.htm I thought there were some pretty good handouts on that page, as I recall, even relating to OCD, rages etc.

There was a period of time when my child was holding it together at school and I couldn't believe it either. How is that possible with the strangest behaviors I had ever heard of at home??? But things for my child soon changed and the whole world soon could see it. I don't know what to tell you about the school situation... that sounds like a mess. I am not clear on what the teacher thinks is 'ridiculous'. I also doubt that I would be giving a morning report every day. But I would expect one from them. Also, have you seen the tourrette's board that has all those tips for teachers on it? You should go print out a bunch of that and give it to her. There is some really good info on there (my child didn't tic but still valid info for a lot of pandas parents). I will try to find the link. I was terrified to take my child off some of those meds (mine wasn't on same meds though). I truly believe that it made my child WORSE being on them. For sure, there was NO improvement. I am extremely happy that she is no longer on meds like that. Good luck with your decisions. regards, amy s

Hi DcMom et al, I don't know that anyone can for sure answer your questions. All of the parents on this board feel for you and others like you. We are all very exhausted, having gone through months and months, some years....many people on here are going through this on a daily basis and are just to exhausted to post. The best thing for you is to go back and read the older ongoing discussions and you will find a lot of info. The main thing I can tell you is that while our children with pandas seem to share many striking similarities, all the symptom relapses seem to present differently even in the same child. 1. I don't know why these kids seem to get strep a lot. One thing for sure,,,,we sure notice it more and it makes a HUGE impact on lives when they do get strep and so we talk more about...live in fear of it...whereas maybe to other parents it is a minor annoyance, typical childhood illness. Hope? Uh, well, in my opinion yes, there is hope but it seems that once these kids get strep and have a pandas situation, it is more likely that they will get ill (I mean, like PANDAS ill) with other bacteria and viruses. So big advice on this one is to get a doc to give prophylactic antibiotics. Many here use Augmentin and Zithromax...but other antibiotics can work with these kids too. I don't put much stock into Penicillin though. And there is hope that your child will be ok. I believe that these kids will all be ok. My child finally is after IVIg, but I still live in fear of a strep or other infection. I think there are still some things with IVIg that need to be ironed out. 2. School...depending on what the child's particular issue is. I think several here have done homeschooling. My child had to have 'homebound' services from the school for a couple months. Get ready to go through the IEP process, bringing documentation from a physician if possible. A teacher came to our house for an hour - 3 times per week to give the tests and otherwise I stayed home and worked with my child on lessons. There were some things we just could not get to due to symptoms and since the school saw how hard we were working at getting things done, they did end up calculating the grade without those certain things we couldn't get to. 3. Ibuprofen- I did give ibuprofen for a couple months, after reading EAMom's report that it seemed to help. I did want to minimize the time that my child was on this because NSAIDS are not good for the tummy but I was more concerned with getting the inflammation out of the brain at that time. Oh the question about the lasting effects...I'm assuming the question was about lasting effects of the brain inflammation... some kids do not regain their previous level in between spikes (during an infectious period). In retrospect, I believe that my child had many many spikes with little improvement in between...but then again my child was misdiagnosed for a long time and then when the possibility of pandas was raised WAS put on penicillin but it was such a small dose it did no good. 4. I can't really answer regarding the behavior subsiding quick... from what I have read when the child has an exacerbation of symptoms the process is slow in getting back to optimal health. The only time I saw very definitive improvement was when my child had a steroid burst and after IVIg. Otherwise we had basically ONE period of time when she snapped out of it, albeit slowly. In my child's case she started having this issue August 2007...it pretty much continued until April and May 2008 (was back to normal for no reason that I knew of) with a drastic decline in June 2008 which lasted until she got a steroid burst and IVIg in November 2008. 5. I can't recommend anyone in DC, good luck with that. Some of us have travelled all over to find the right doc to help. I have found little help from well meaning psychiatrists, psychologists, or neurologists (except for the fact that they can order some much needed tests that rule out other things!). A child psychologist was a little helpful because they helped me deal with some of the issues but nothing that helped get rid of the problem in my child. Dr. K (www.webpediatrics.com) was very helpful because he is so knowledgable and believes that pandas does exist. A ped rheumatologist was extremely helpful, but otherwise once we found the right pediatrician for us...he was most helpful. Dr. K is good and he will email you back quickly most times. Save your money because insurance might not cover everything that you might need for your child. Many of us have spent thousands. The best thing I can tell you is to start printing off peer reviewed medical research papers and other papers that you might need to refer back to...or make copies of for your doc. Make your self a binder or folder for this. Keep reading and be ready to whip out any research papers you can find to prove your point when talking with medical professionals. At the top of this forum are some good links posted by BUSTER. Make detailed notes about your child's issues. Diana will probably be getting ahold of you if she hasn't already. She is a good resource of information. I'm sorry your child is sick. Hang in there. I'm sure others will come on and add info when they have a chance. regards, amy s

DCMom, I don't have much time but I did send you a quick PM. I will try to respond more to this tonight, but it will be late. Hang in there. Keep reading.

Well, in your case with positive cultures, my first thought is laboratory error. But to be honest, titers have always been a mystery to me as many times there seems to be no rhyme or reason as to why it is so high on some kids and not with others. Unless you are willing to subject your child to constant needle sticks in order to show the level trending over time, I don't think they show much. Sometimes in order to prove this diagnosis we have to do just that, though. Welcome to the board. I'm sorry that your child is sick. You will learn a lot hanging around here. Regards, amy s

My child is taking 250mg Augmentin daily as recommended by Dr. K. My child is about 70lbs

Ok, did Dr. K recommend a steroid burst? I would take that email from Dr. K , along with printed pages of his website and printed peer reviewed research articles...take those to your pediatricians office in an envelope and drop them off for the doctor to review. Then make an appointment to go over the recommendations. Just you, not your child. Let the doctor know how things are going and how difficult this is and how big of a change this is in your daughter. Let her know how serious you think this situation is....that your family is in a crisis situation. Talk to the pediatrician about RISKS VS POSSIBLE BENEFITS of just trying to see if the steroid burst works. I mean, I would literally say, "What are the risks of just trying a 5 day steroid burst?" If your pediatrician is not comfortable prescribing the steroid burst, ask if a referral to a rheumatologist would be out of the question and try to see if that doctor will verify that something like that might work in this case. Maybe that will make your doc more comfortable prescribing a steroid burst. What a steroid burst is supposed to do is show whether or not IVIg might be effective. Meaning you should see improvement (Dr. K said between days 3 and 10) in behavior and pandas issues in that time period. For us it was noticed on day 2. The steroid burst cleared up almost all pandas symptoms in my child ( EDIT: for about 4-5 days only)....and for us, cleared up all confusion as to whether or not this was pandas. Then we knew we had to pursue IVIg. For us, we reached the point that there was no choice. Good luck. ((((hugs))))

Ok, did Dr. K recommend a steroid burst? I would take that email from Dr. K , along with printed pages of his website and printed peer reviewed research articles...take those to your pediatricians office in an envelope and drop them off for the doctor to review. Then make an appointment to go over the recommendations. Just you, not your child. Let the doctor know how things are going and how difficult this is and how big of a change this is in your daughter. Let her know how serious you think this situation is....that your family is in a crisis situation. Talk to the pediatrician about RISKS VS POSSIBLE BENEFITS of just trying to see if the steroid burst works. I mean, I would literally say, "What are the risks of just trying a 5 day steroid burst?" If your pediatrician is not comfortable prescribing the steroid burst, ask if a referral to a rheumatologist would be out of the question and try to see if that doctor will verify that something like that might work in this case. Maybe that will make your doc more comfortable prescribing a steroid burst. What a steroid burst is supposed to do is show whether or not IVIg might be effective. Meaning you should see improvement (Dr. K said between days 3 and 10) in behavior and pandas issues in that time period. For us it was noticed on day 2. The steroid burst cleared up almost all pandas symptoms in my child and for us, cleared up all confusion as to whether or not this was pandas. Then we knew we had to pursue IVIg. For us, we reached the point that there was no choice. Good luck. ((((hugs))))

wow. this is amazing. Thanks for the update.