Ellen

WornoutDad, these kinds of decisions are always difficult, but I don't think 24 hours of medication would be enough to give me peace of mind. At 18 days post IVIG I would want to do everything possible to give the IVIG a chance to do its best work. It was nice that the friends were considerate enough to let you know. Even though it will be a disappointment, if I were in this situation, I would not go at all. I look forward to hearing about how your son does over the next couple of months. Ellen

I did speak to jayjay a couple of months ago about starting a support group in my home (in Fairfield County, Connecticut). I had hoped to get it off the ground before the end of the school year, but we had some illnesses (including strep) in the family and things are only now beginning to settle down. If anyone is interested in being part of this group, please PM me and I can tell you more specifics. Hopefully, we could have a first meeting some time over the summer. Ellen

I have not heard of Gammagard S/D before, and I don't know if it is different from Gammagard 5 percent. I was told that the Gammagard 5 percent is twice the volume of the regular kind because it comes in powder form and has to be diluted. Ellen

Fix it, to answer your question, my son is 13 and of all the treatments we have done for him (including plasmapheresis, full strength antibiotics, gfcf diet and numerous supplements, neurofeedback etc.) IVIG has been the most helpful. I will try to post a separate thread with an update some time soon. He was an extreme case of PANDAS two years ago (multiple hospitalizations) but has come a long way and was still having some significant issues with homework, reading, and focus until after the first IVIG (1.5 gm. per kilo over two days) in February. Starting about five days after the first IVIG, he started doing homework more independently and within two weeks there were more obvious improvements in this area and with other issues as well. He still has some reading difficulty and anxiety issues and is not yet symptom free, but he is definitely making great progress. Two nights ago there was an awards ceremony for his 8th grade graduating class, and he received a Rotary Club award for "Extraordinary Progress" which is given to a student who overcomes a great obstacle in an extraordinary way. A real proud moment for me and a boost for his confidence too! Before the IVIG, I was worried that the low IGA version would not work as well and this was not the case for my son. Yes, he has had his setbacks and his turning back of the pages like most others, but I do think IVIG has made a big positive difference for him. Ellen

I do believe that the topic of IVIG for those with low IGA is one that really needs to be addressed by the PANDAS experts when they get together for the symposium. It is true that there is no agreement among doctors about the level of risk involved for low IGA patients. My son has low IGA and we avoided IVIG for two years (went the plasmapheresis route instead) because we didn't know that a low IGA form of IVIG existed. There is also a way to break down (fractionate) the total IGA number into two numbers IGA1 and IGA2 to determine if there is a Selective IGA deficiency. I believe that if one of the two numbers is close to zero, then the risk of allergic reaction is greater. One of the numbers for my son was 9 (this is a Selective IGA2 deficiency) and so when he finally did have IVIG in February and then again in April, it was with the low IVIG type, which was called Gammargard 5 percent. In my opinion, it does make sense for docs to screen for this ahead of time and offer this version for those at risk. It is supposed to be just as effective. Be aware that this form is twice the volume of the regular kind and will take longer to administer. But even if there is the slightest chance of an allergic reaction, it is certainly worth the extra time. Ellen

My son took Orapred (two 15 mg pills) the day after the IVIG was over (he is 95 pounds), and it helped a lot with his headache. I was told this was the maximum dosage he could have per day. He was also taking Advil but that alone was not enough to bring relief. Also, it might be helpful to let him know that he can reduce some of the side effects by drinking lots and lots of water the day before and during IVIG.

Andrea, My son also has low IGA, and he was able to get IVIG done in a way that was safe. I just got your e-mail this morning and will write back soon with my phone number in case you want to call. Two years ago, my son's PANDAS was severe (multiple hospitalizations) and one of his psychiatrists, who was a PANDAS believer, was ready to go ahead and do IVIG in the hospital where he was staying until we found out that his IGA number was low. We were told that the risk of severe allergic reaction for people with low IGA was very high, and my son's doctors directed us to plasmapheresis at that point. My son had plasmapheresis twice (once at CHOP and once at Georgetown) with partial success. Last summer Dr. Latimer encouraged us to see an immunologist to test to see if there was a Selective IGA deficiency and to see if it would be possible to get IVIG done in a safe way. We went to see Dr. Bouboulisis, who told us that the total IGA number (which in my son's case was 32) could be fractionated into two numbers and he ordered a blood test to find out those numbers. If one of those numbers was zero or close to it, that would mean he had a Selective IGA deficiency. But according to Dr. B, IVIG could be safely done for kids with a Selective IGA deficiency by using a type of solution that was very low in IGA. It turned out that when the total number was fractionated, my son's IGA2 was 9 and that was low enough to be considered a Selective IGA deficiency. But he explained that we could do it safely with the low IGA solution, which he considered to be just as effective as the other kind. My son had IVIG in February (1.5 gm per kilo over two days) and then again at the same dose in April with the low IGA solution, which was called gammagard 5 percent. He is dong well ( many great improvements, especially with homework and reading) but not yet symptom free. He considers himself to be "almost better" and he writes about his IVIG experiences (including low allergy IVIG) in the "forums section" of his PANDAS website for kids (www.pandas-syndrome.webs.com). Your son's IGA is lower than my son's, and so I think it would be a very good idea to consult with Dr. B. to see if this could be done for him as well. Because he is an allergist/immunologist he has expertise on this subject. We have done many treatments for my son's PANDAS that have been partially helpful, but nothing has worked as well and led to as many improvements as IVIG. So I feel very fortunate to have found someone who could confidently tell me that there was a safe way to do it. Ellen That's a good question. Why would this be overlooked? He told me to repeat the IGA in about 2 weeks. Andrea

Nancy, you and your daughter are in my thoughts. Hang in there. Ellen

EAMom, I'm curious to know if your younger dd is on prophylactic antibiotics to prevent strep. My PANDAS son is doing very well but not completely symptom free after IVIG (1.5 gm per kilo) in February and then again at the same dose in April. There have been some great improvements in most areas and he considers himself to be "almost better". My DS10, the one I've considered to be my "hopefully non-PANDAS son," has over the years had mild tics that come and go, mild OCD that does not interfere with his life, urinary issues, constipation, chronic leg and foot pain, major allergies, history of frequent sinus infections and some anxiety. He is a high achiever and functions very well in school and home, but at the beginning of this week we saw a return of a throat clearing tic, some anxiety issues, and a definite increase in urinary frequency issues, which is a symptom that my older son never experienced. A few days later DS10 came down a high fever and sore throat. His culture was positive for strep and the ped agreed to give him a month of treatment dose Omnicef because of his brother's PANDAS and his possible mild PANDAS. I will do the Cunnningham test and an immune workup on DS 10, and I am considering prophylactic antbiotics after that if Cunningham results are high. He is the same age as his brother was when he had the strep episode that turned our lives upside down so this is scary for me. Any thoughts? Ellen We tested our younger dd this past fall when she was 6.5 years. I refer to her as "my (hopefully) non-pandas child." I suspect she has "mild" PANDAS. She does have episodes of anxiety (worries about stuff, went through a phase where I had to make sure all the doors were locked at night, went through 1 mo. where she wouldn't eat meat, some emotional stuff., etc). So far, like you say, nothing is "WHAM" or definitive enough to get long term abs. Her CaM kinase ll came back as 130 (lower PANDAS range). We're watching her closely...

I think my son would love an email penpal. I'll send you a PM.

It is possible that your son may change his thinking and become more open about his PANDAS over time. Two years ago my son would not openly talk about his disorder and the mention of PANDAS or OCD in front of him was almost always a trigger. Now he is very open and comfortable talking about his illness and as I have mentioned in other posts, he created a website (www.pandas-syndrome.webs.com) for other kids with PANDAS and their parents. Maybe your son would want to check it out some time to see that it is okay and sometimes even helpful to talk about this openly with other kids. Ellen

In my opinion vaccines can play a role in making PANDAS symptoms worse and this is what happened with my son. He developed OCD after a strep when he was 10 and 1/2, but his symptoms became much worse and new ones appeared shortly after getting two vaccines (while his allergies were acting up) at the age of 11. Since then I have stopped doing vaccines for him and his nonPANDAS brother, who is three years younger. It is a difficult decision. Go with you gut. I personally would not agree to it right now. If you ever decide to vaccinate, I would never do more than one at a time and never while there is anything else going on in the way of cold, illness, or allergies. I hope this is helpful. Ellen

My son would be interested too. He is 13 and has recently become very open about his PANDAS. He has been connecting with other PANDAS kids and parents on the website he started a few months ago, Guidebook to PANDAS syndrome at www.pandas-syndrome.webs.com. I think a facebook group would be another great avenue for young people with PANDAS to talk. Ellen

My son asked me to bump this up for new members who have not seen his PANDAS website. Also, for those of you who have seen it, he has asked me to let you know that he has added two sections in which he talks about his experiences with IVIG. He is 5 weeks post IVIG now and doing very well. If you would like to hear about his IVIG experience from his point of view, you can go to the home page on his website. In the left column on the home page, under the recent forums post heading, you can click on either of the two sections that he devotes to IVIG. One is called " Low Allergy IVIG" and the other is "I Would Recommend IVIG". He is hoping to get a discussion going on the subject of IVIG. He would love it if you check out these new additions and post a comment or encourage your kids to post a comment on one of his forums about IVIG. His website address is www.pandas-syndrome.webs.com. Ellen

The website address is www.pandasresourcenetwork.org. Ellen

Michael, I am curious to know if you can recall what would be going on when you would have these staring spells? Do you think they were OCD related, and do you know why they don't happen as often now? Ellen

My son used to have staring episodes that could last several minutes at a time. He would be completely unresponsive and after he would come out of it, he was unable to explain what was going on during these episodes, which I called "trances". My son's OCD was triggered three years ago by a strep, but we never saw these zoning out episodes until shortly after he had vaccines, which was several months after the strep. There were many other unusual and bizarre symptoms after the vaccines, but these staring spells were the most disturbing. After a seizure disorder was ruled out, I began to believe the trances were OCD related, but I was never able to fully understand what was going on while they were happening. Over time these episodes eventually became shorter in duration and it has now reached a point where I might just see a blank stare for a few seconds or he will zone out when I ask him a question and ask me to repeat it. But since I increased his Zithromax to 500 mg a day a few months ago, many symptoms have improved and these short moments of unresponsiveness seem to happen less often. Ellen

ShaesMom, did she begin the monthly IVIG three weeks or three months after the large two day dose? Ellen

ShaesMom, I'm glad to hear that your daughter is doing so well. I am curious to know how long after her two gm./kg. dose over two days did she begin the monthly IVIG. Was it a month later or longer? At what point in time did you begin to see results? Ellen Diana Pohlman, who created the website pandasnetwork.org can give you many examples of great results from IVIG. You can contact her through the contact link on the website. Also, read the case studies on the website. This forum in my opinion is not the place to ask for examples because if the IVIG worked, then they aren't on the fourm, at least not much. Also, you could ask Dr. K your question. He has treated literally hundreds of patients with IVIG and has a fantastic success rate. E-mial him at Drk@webpediatricsl.com. The general consensus is that monthly low dose IVIG is the wrong approach. Alex I'm sorry Alex but I have to respectly disagree with you and the Doctor's who state that monthly IVIG is not the right way to go. My daughter has been receiving monthly IVIG since last July (2gm/kg over 2 days in July and now 1gm every 4 weeks) and currently she has absolutely no signs of Pandas. It took 4-6 months before all symptoms were gone but she is doing amazingly well at this point. Her brother tested positive for strep this morning and has been coughing on all of us this last week and I haven't seen any flare in her Pandas. In the past, she would react immediately if she was around anyone with strep. IMO-the monthly dose of Ivig has actually allowed her body to heal and stopped the autoimmune reaction.

Thanks to all of you who checked out my PANDAS website. I hope you will come back. I'm 13 years old and I added a games page and there are discussion forums on my website. I think that the games page will give you or your kids something fun to do over this weekend. The website's name is www.pandas-syndrome.webs.com and I made it. The website has: -forums about PANDAS that you can make a comment on or make a forum post -an OCD page -comics about OCD -a video gallery -over 500 visits to the home page -a page that tells you more -a quick questionnaire -polls to vote for -photos of my tortoises -backround music on some pages -backround images on most pages -a NEW games page with games like PacMan, Mario, frogger, a thing that tells the weather, (etc.) If you have not seen it, please check it out. If you already HAVE, please check it out again. I added more. Thankyou. ---Ellen's Kid

Thanks all for your encouraging comments here and on my son's website! He was thrilled to read them, and he was smiling from ear to ear when he saw how many visitors he has been getting since I posted yesterday. This inspired him to develop it a little more, and I think he will continue to try to come up with ideas so feel free to check back any time and/or offer any thoughts on topics he might want to include. He is open to suggestions and loves to hear from people. Ellen

I strongly agree with what the others have said about getting the Cam Kinase test done. I would hang in there and not rule out PANDAS. I am really glad you will be consulting with Dr. T. I remember my phone conversation with you last month, and I did feel that your son's story and his symptoms shared many similarities with my PANDAS son, who has made significant improvements from PANDAS treatments such as full strength Zithromax and plasmapheresis. Also, please keep in mind the improvements you have seen over the years when your son has gone on antibiotics. That's telling you something. Go with your gut. I think I mentioned this to you before, but it is worth repeating. Omnicef did not seem to do anything for my son even at the full strength dose, but the full strength Zith is making a huge positive difference. I hope you will have a chance to try this some time soon. Please do not give up on this club. I do feel you belong here and we are here to offer support and help. Call any time if you want to talk again. Ellen

He has come a long way and I am proud of him for be willing to deal with his PANDAS so openly now. Ellen Wow, look at him go! You must be very proud of him!

My 13-year-old PANDAS son is looking to network/penpal with other kids who have PANDAS. He enjoys corresponding with other kids (both boys and girls) of any age. A couple of weeks ago he created his own website for kids with PANDAS, and today he asked me to post about it to invite you and your kids to check it out. He hopes to hear from other PANDAS kids (or their parents) about how they deal with PANDAS, and he would love it if you would sign the guestbook and include any comments you might have about his website or your family's experiences with PANDAS. The website address is www.pandas-syndrome.webs.com. You will see that in spite all he has been through, he has not lost his sense of humor. Please encourage your kids to browse and comment if you feel it's appropriate for them. He would also welcome private emails, so feel free to pm me for his email address. Ellen