ExpatMom

Hi SarahJane, My son had his first IVIG in August. Initially, first couple weeks, his symptoms were worse. He also had a lot of side effects from the IVIG such as headache, vomiting, etc...However, after a couple weeks he made remarkable improvements. This however was followed by the usual "up and down" pattern of good days and bad days. The bad days though were nothing like the bad days we experienced before the IVIG. I too started to question and despair that maybe the symptoms would get worse or that my son would not improve again. Sometime around 12 weeks though, he settled into what has so far been a pretty stable recovery. He has some days when he will experience some mild anxiety, but he is able to cope with it. We are now almost 6 mos. out and he is leading a pretty much "normal" life again. Every day I wake up wondering if this will be the day something changes, but as time goes by, I become more and more optimistic. IVIG was rough yes, but so far it has changed my son's life in a way that no amount of medication, CBT, or anything else ever has. He now has a chance at a normal life. I pray it continues. Best of luck to you and I hope this helps. Let me know if you have any other questions or you just need some "moral support". P.S. AT this point, when my son has a mild return of symptoms, I can usually tie it to someone in the house being sick or my son having a mild cold etc...At that point, my son is usually put back on high dose antibiotics for a time and the symptoms resolve. It is more difficult to do this in the beginning as the periods of ups and downs are more frequent and overlap.

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Thanks for your reply. So your child didn't show improvement again until around 8 weeks? That is encouraging. I keep telling myself to remain optimistic, but it is hard sometimes. I want this treatment to work so badly, mostly for my son's benefit, that I am trying not to get my hopes up too much just in case it doesn't, but at the same time I want to remain optimistic. It really helps reading about the experiences of others. Thanks to everyone

Hello to Everyone, Some of you may remember a couple of my previous posts. I have been "MIA" for a bit, as I finally diagnosed my 10 year old son with PANDAS, and traveled from Saudi Arabia to Chicago for IVIG with Dr. K, all with in a short time frame. My son has been going through a severe exacerbation of what we now believe is PANDAS since he was sick in April. Dr. K recommened IVIG and we decided to go for it. The IVIG was done on Aug. 12 and 13. My son was very sick afterwards with severe headache, vomiting etc...and then we made the 15 hour flight home several days later. The first week post IVIG was rough and since my son is petrified of vomiting and he vomited several times post IVIG, his anxiety level was very high. However, after about a week, he had a great improvement in all his symptoms from OCD to anxiety. It was the best I have seen him. My 2 week update with Dr. K was very encouraging. However, wouldn't you know it, a couple days later, my son started having panic attacks again. His OCD symptoms are still better than before, but his anxiety is very high again. This has been going on for about 10 days now. He has had a couple days during the 10 days that were a bit better. My question to all of you out there is this....what was your experience post IVIG? I know turning back the pages is normal, but when should you see sustained improvement?? I am trying to remain optimistic, but getting worried. We are a few days from the 4 week marker now. Any advice??

Thanks Buster. I wasn't aware of the potential for damage related to Biaxin usage. I guess that answers the question of why most people are on Azith or Augmentin. I will keep trying to get the doctor. Thanks for the input.

Hello All, I need some advice. I am living in Saudi Arabia, which some of you may have already read before. My son has been in the midst of a severe exacerbation of what I am now sure is PANDAS. He was on a huge downward slide and thank God we managed to snatch him back from the brink just in time. After a phone consultation with a specialist there, he was started on Biaxin 500mg BID and I noticed a significant improvement after just a couple days. Encouraged by this, I consulted with a Ped. Neuro. here and we agreed that since my son still had significant issues even with 50% improvement, we would go for a 5 day steroid burst. He finished the 5 day burst a couple days ago now. Yesterday, he was even better. I can't believe it. My question is, I can't get the doctor to return my emails or tell me what to do now. Should I continue with Biaxin at the same dose and for how long? Should I expect a rebound after the steroids have worn off? What to do???? I am alone here and not quite sure what to do until I can get in touch with either the current doctor there or another doctor. I am planning to try calling his office next. Can anyone tell me what the usual treatment would be? It seems from what I have read that sometimes the antibiotics are switched around, but usually continued for around a month or longer. I am assuming that since we have had a positive response with Biaxin we would continue with that, but the response is not 100%. So does that warrant switching to something else or continuing with the same? My son has been sick for so long without a diagnosis I really want to be aggressive. He has finished about 12 days of Biaxin so far. Thanks for any advice!

Hi, Can you give me the dates in July? I can't get the link to work. Do you happen to have a contact number to register as well? Thanks very much.

Hello, I am outside the US so I have also been looking for a link. I read somewhere that the most recent episodes are available by podcast or itunes. Not sure, but you can check. I also found the schedule for the Discovery channel and the episode will be broadcast again on Saturday, June 19 from 5-6pm and again from 9-10pm. I hope this is correct. I have asked my family in the US to try and watch it and also to tape it for me. Good luck!

Many thanks to Ifran and MomWithOCDson for your suggestions. I called Dr. Trifiletti's office yesterday to see how long it would take to get an appt. for a telephone consult and he actually answered the phone. I thought I had the wrong number there for a minute!! He was so nice and spent some time talking with me. I have an appt. to speak to him again tonight for the actual consult. So, I am cautiously optimistic that I can start working on something that might help my son. Thanks to everyone for all the helpful posts.

Hello All, Some of you might have read my recent regarding locating a doctor in the USA. As I mentioned before, I am living in Saudi Arabia and my 10 year old son seems to fit the PANDAS diagnosis, although he has not been officially diagnosed and has not yet received any treatment other than psych meds from a doctor here. Recently, he was in a bit of a remission and then he was sick with high fever followed by skin rash and all his symptoms, especially severe anxiety, have come back. This is when I started looking for a doctor in the US. I contacted two doctors by email, asking about a possible telephone consult. Both doctors responded promptly, but I had decided to talk to Dr. K because he is in Chicago, which isn't too far from my family in Cincinnati. He asked me to call his secretary to make an appt. However, when I called her, she immediately told me that it would cost 500USD, which is fine, but then she went on to say that they ONLY accept a check or money order. I explained to her that I am outside the USA and it would take a long time for a check to arrive, couldn't I pay by paypal or something. She said no, and that it would most likely take AT LEAST 10 days anyway before Dr. K could even speak to me. I told her that my son is currently having a severe exacerbation(he has stopped eating again)and I wanted to talk to Dr. K quickly to see if there are any labs etc...I should have done while he is in the middle of an exacerbation or even bring him to the US. Her response was, "what makes you think he has PANDAS???" . I have to say I was a bit put off by all this. So, she then suggested that I email Dr. K again and explain the situation and see if he has any suggestions on what I should do ( wait around for a telephone consult, come to the states, etc...) I did email him right away, but so far no response. However, I just sent the email so he probably hasn't seen it yet. The problem is that since my son has stopped eating I am going to have to take some kind of action soon. His psychiatrist said we will be forced to put him back on antidepressants if he doesn't eat. He just got off them a couple months ago. I was hoping to get a quick treatment plan and maybe avoid that. Now I am not sure what to do. Is it always this difficult??? Anybody out there a patient of Dr. K??? I am not sure whether to wait it out for Dr. K or try the other doc??? Any suggestions?? Thanks!

Thanks for your support. I am hoping to speak to Dr. K by phone to ask some of these quesitons. I am not sure if the Cunningham test is possible since I am in Saudi Arabia. My son is currently having an exacerbation so I am hoping to speak to someone quickly to see if I should come to the US to have the test done now or try some steroids/antibiotics and other labs from here first to see how he responds. Hopefully, I will get some answers soon. Thanks again for your post.

Thanks so much to everyone for your responses. I have already contacted a couple of the doctors recommended and have already received an email response from one. I am thinking of seeing Dr. K since he is in Chicago and close to Cincinnati-I can drive back and forth for appt.s if necessary. I am still not sure if my child has PANDAS, but reading all the posts here sure make me think that he definitely might have it. It all sounds so familiar to me. It might sound crazy, but I am hoping against hope that he actually has PANDAS so I might be able to finally find a way to help him. Thank you all for your continuing support.

Hello, I live in Saudi Arabia with my 10 year old son who has been suffering from TICS/anxiety for the last 5 years. I saw a program on TV a couple years ago about PANDAS. I thought might son might be suffering from it and mentioned it to his Psychiatrist, but she blew me off. I finally mentioned it to a Peds. Infectious Disease specialist and he tested my son's ASO titer, which was very high. We have seen a Pediatric Rheumatologist here but he is not sure how to proceed, although he feels my son definitely might have PANDAS. I would like to bring him to the US to see a specialist for evaluation. Can anyone recommend a doctor? Anywhere in the US is fine, although I am from Cincinnati and that would be convenient for me. I am desperate!! My son is currently experiencing an exacerbation of tics/anxiety and I feel helpless.