kimballot

Sounds like my DS15 a year ago. It is so different now after a year of treatment with Dr. B. Best wishes -

I was just thinking about you and a couple of the other older teen and young adult members with PANDAS that we've not heard from in a while. I was hoping that meant that things were going well! Please continue to keep us updated. It is so very helpful!

I will send you a PM along with this post, but I wanted to post that we saw Dr. M last year and she was supportive of lyme as a potential underlying problem, but she did not, at that time, consider herself able to treat the lyme. Ditto what others said about her clinic being thorough and understanding PANDAS. She also was good at helping me to see how I may have been contributing to the OCD symptoms continuing. She was also good with some supplement suggestions and she helped to validate much of the treatments we had been doing. Finally, they gave us a short summary to bring back and that was helpful for verifying the PANDAS situation with local docs. I found new respect among local docs when I handed them that paper and have not had anyone question the PANDAS diagnosis since.

I am up late tonight because I am cooking and cleaning my home and preparing for Easter dinner tomorrow. My two teenage kids just headed off to bed after coloring easter eggs for all of our guests tomorrow, and helping with some of the food preparations. It sounds like something out of a fiction novel, and when I look back on the evening it almost feels that way. It is so "normal". This is very different from last year when I could not hold Easter dinner in my home due to DS' rages. he could only leave the home for about an hour due to anxiety. He did not speak or smile the entire day due to depression. I just looked up my post from last year - on April 14. DS14 was in a horrible exacerbation with some tics, but this time it was mostly oppositional behavior and depression. His case was one of the more severe cases and I often wondered if it was permanent damage. It has been a very long year, but we made it thorough and he is enjoying life. Unfortunately, this all came at a great price to my family. In my own desperation and fear he would not recover, I spent every waking minute trying to find something to help him. Now that he is functional I need to focus on my family and have been working very hard to restore routine, respect, and a sense of calm to the the home. It is not easy but we are moving forward. My recommendation is to take periodic PANDAS breaks and reconnect with your family and friends. I wish you and all of the PANS families well as we all work together to battle this monster. Just remember - you are not alone!

I just wanted to clarify that when I said my kids took pills with applesauce - the pills were whole. I just hid the pill in the middle of a spoonful of applesauce and told them to swallow withoug chewing. The applesauce kept it from getting stuck in their throats at all.

My kids always used applesauce for pills when they were younger. It worked well.

I was using time release with my son and I believe it worked because he slept through the night but had trouble waking up in the morning. It work well for your son, though, so I would give it a try. The problem is going to be finding one that is 1 mg. The drops sound like a good idea. My son now uses both melatonin and valerian root at night and we have not had any night waking. Just another thought. Keep us posted!

Ok - I just came across this little article on a news website http://news.yahoo.com/blogs/sideshow/45-overused-medical-procedures-costing-americans-billions-study-212121533.html Basically- it lists overused tests that should not be routinely given. I read the immune tests and wanted to vomit. THIS is why our kids are ignored and doctors refuse to test them. Surely there has to be some way to get people to understand that having a child SUDDENLY develop psychiatric symptoms IS proper use of immune tests and will SAVE insurance companies thousands of dollars in mental health care -not to mention saving school districts thousands of dollars in special education and therapies. UGH

I've been using Amazon more and more frequently. I can get most supplements at the "subscription" rate - which includes free shipping and a discounted rated. You "subscribe" to get them monthly or bimonthly, or whatever you choose, but you can cancel at any time - e. They also send you an email before sending out a bottle, so you can choose to skip a month if you want to. Plus- all the info is easy to grab at the end of the year for taxes.

I've been using Amazon more and more frequently. I can get most supplements at the "subscription" rate - which includes free shipping and a discounted rated. You "subscribe" to get them monthly or bimonthly, or whatever you choose, but you can cancel at any time. They also send you an email before sending out a bottle, so you can choose to skip a month if you want to. Plus- all the info is easy to grab at the end of the year for taxes.

I believe many of dr. Bs patients are given the diagnosis of CVID. I suspect there are many children with PANS who fit the description. My son has CVID. He gets IVIG every 8 weeks. He has not had a sinus infection since he began IVIG and it was chronic for his entire life prior to IVIG. PANS symptoms way down without the constant infection and unrelenting attack on his brain.

I agree with the others that your son could be having a PANDAS exacerbation that started with his throat and that alone can cause urinary frequency and OCD.... plus a verified UTI certainly could trigger an exacerbation. I also want to point out that you may have some strep or mycoplasma floating around your house if your DH was also ill recently.

sensory issues are common. Sounds, smells, visual, touch... you name it. You might get some ideas here http://www.nysota.org/node/334 or here http://pandasnetwork.org/wp-content/uploads/2012/01/PANDAS-OT-Article.pdf or ask the OT in your son's school for ideas to help cope while in exacerbation - though you may need to share the articles with the OT so s/he is familiar with PANS.

Welcome home. You are in the right place and make perfect sense. My DS 15 (as of 1 week ago) also had most flare ups with sinusitis. Dr. B found the sinus problem 2 years ago and has been our mainstay ever since. It has been a very long road for us, but DS is healthier than ever and I am hopeful he will continue to do well. Keep us posted on your son's progress!

Just wanted to mention that I buy jarrow and many other supplements from Amazon.com - they have a "subscription" rate - whereby they send you supplements every month at a lower rate per bottle. The really good thing is that you can cancel the subscription at any time - even after the first order. You can also go in and increase or decrease the number of bottles as needed and there is no shipping charges. You can also do it through discover or other other promotions to get extra rewards.

Throughout our journey I've felt that I am following you in many ways. i can only hope to be able to report the same success in the future. You are amazing and so is your DS! HAPPY BIRTHDAY!

I just came across the PANS wikipedia page at http://en.wikipedia.org/wiki/Pediatric_acute-onset_neuropsychiatric_syndrome It looks like they are thinking about deleting it... and it looks like there are multiple concerns. Does anyone know who started the page, why it is being marked for deletion, or what we can do to have a good Wikipedia page available for PANS? I have not read the page fully yet... but will do later on. Wondering what the politics are behind this. Thanks

First off - I want to thank everyone on this forum who has followed our story, said prayers. offered advice, and checked back from time to time to see how we are doing. As the "old timers" may recall, my DS (nearly 15 now) has been battling PANDS symptoms since toddlerhood with chronic and severe sinusitis since birth. In February, 2011, we decided to begin IVIG every 2 months in an effort to reduce infection, reduce inflammaion, and stop the autoimmune process. We were warned that this could result in a temporary increase in PANS symptoms, and we were concerned as he had experienced major depression 7 years prior - just before having his tonsils removed, but the tonsillectomy seemed to help and we had not seen any depression since. Now, at age 14, he thought of major depression was very dark and scary and he was very big. On Feb. 27 we saw a return of the major depressive symptoms as he refused to leave his darkened bedroom. Over the next two weeks depressive symptoms continued to mount as he posted dark lyrics on facebook, talked about hurting himself, and had rages at home. Eventually, we were forced to hospitalize him for 13 days - followed by another 5 day hospitalization two weeks later. We gather together a team of counselors, wraparound workers, psychologists, physicians and even the police to keep DS home and safe. At first it seemed there was no end in site, but as we sought counsel from different doctors we continued IVIG, changed medications, changed approaches, changed supplements, and changed our standards so that, over time, he began to return to function, though he developed very persistent school refusal. The first time he touched me was Mother's day - after being taken off Singulair 3 days prior at the suggestion of the LLMD. By the end of June he had failed the second half of 8th grade, but was interested in attending summer school. He made it to school more days than he missed in the summer, which was an improvement over the school year, but a far cry from functional. By the 4th of July I was able to leave him home for a few hours at a time without fearing he would hurt himself - after starting on doxycyline and flagyl. By September he was able to stay at a different hotel when we went for IVIG without anxiety. By Thanksgiving he was able to dress up and attend a family function - though he was very quiet. By Christmas he was able to interact at family functions and was attending school about 4 days per week. We added in inositol and changed his CoQ10 schedule, and he started attending school everyday at at the beginning of 2012. On Valentines Day, 2012 he was at IVIG for his one year IVIG anniversary and was a pretty "typical" kid.... even brought some homework to do while he was there. Today, he is a high school freshman and has only missed one day of school since the first of January (except for IVIG). He is interested in his classes and he is passing his classes this marking period. He is no where near the child we know he can be... but he continues to move forward. He has not had a sinus infection since we began IVIG - even though he has had a couple of colds. Again - I am writing this to thank all of you wonderful parents who have helped us so much along the way and all of the doctors we have seen. Over the past two years we have had contact with many - Dr. T, Dr. B., Dr. M., Dr. Jenike, Dr. Kyle Williams, Dr. Aureen Wagner, Dr. Kari Bovenzi - plus our local pediatrician, neuorpsychiatrist, neuropsychologist, and multiple counselors. It is ironic that DS was born the year before the "landmark" PANDAS article was published by Swedo. Whenever I feel cheated by the early years when we did not know about PANDAS/PITAND/PANS, I turn it around and think about how fortunate we are to have the internet and this forum to share information and support. Best wishes to all of our children and all of our warrior families!

I sent you a PM. Look for a notification in the upper right corner of your screen - near your login name.

While I agree that migrating joint pain is a sign of lyme disease, I think you can also see it with PANS flare ups. My son had lots of joint pain when he had an ongoing sinus cyst. The immunologist measured his C3D levels and they were very hight. These complexes are antibody+antigen complexes that form when the antibody is trying to fight the infection or during an autoimmune response. His were 8 times the upper limit. Typically the body removes the complexes, but if there are many complexes and the body cannot remove them then they deposit in the kidneys, joints, and other organs until they can be removed. I do not want to discourage you from pursuing lyme as a possibility - we have really received a great deal of help from a lyme doctor - but the joint pain really went away for my son when the PANS flare up subsided after sinus surgery.

Very interesting find! Does your ds have immune deficiency? My understanding is that Pseudomonas is generally not seen unless there is a compromised immune system. It is also very stinky. Did your son have "garbage" smelling breath? I am so glad you had everything cultured. This will be very good information for you for the future.

OTs can be helpful, but they need to know about PANS. You can read about OT ideas or direct an OT to the New York State OT Association website at http://www.nysota.org/node/334 or to an article in OT practice Magazine from November, 2011 - pages 14-19 of this link http://www.aota.org/Pubs/OTP/2011-OTP/OTP-111411.aspx?FT=.pdf Good luck!

We've seen urinary frequency both with the stomach/GI stuff and without the stomach/GI stuff - so for us it seems to be independent of the GI issues. Also - cromolyn did help my son's GI issues considerably when he was very allergic.

Dee Dee - I would recommend keeping the appointment with Dr. B as he will likely have some other ideas about treating the PANDAS aspect and may find some infection that you had not thought to look for. I would also call his office and see if they could give you a referral to a lyme doctor while you are in connecticut. I know Dr. B often uses Dr. J but he may be booked at that very moment- but there are several lyme docs in Connecticut and perhaps you can get in with another reputable doctor while you are there. You can also post on the lyme board and ask folks to PM you with ideas. I have taken my son to several different doctors and have found that each his his/her own unique way of looking at his problems.... and each offered something that helped a bit. All together he is doing much better than 11 months ago and is continuing to move forward.

Ok...so here is my question.... why have none of these families gone to see Swedo? I mean - if I could take my kid to Swedo for free.... I would run.