MaryAW

Sounds like you need a doctor and not this message board! You are doing the right thing - good luck!

Is it the ocean? My DD LOVES to be near the ocean. You may experience a miracle taking her there. Something about the fresh sea air. My DD was flaring badly in June. We flew to Cal. and I took her to Newport Beach. I went to the beach with an anxious flaring child and came home that afternoon with my daughter! She was happy, singing, grabbing my arm lovingly. I told my husband - It was like magic! It totally snapped her out of her flare (which was caused by grass pollen back in CT where we live). I would go and let her spend time out in the fresh sea air. My mom lives in a coastal town here in CT. We try to go visit once a week to the beach there for the fresh sea air since we discovered this. I hope the same happens for your DD on your trip!

This is an excellent site started by the leading doctors in PANS. It will be helpful to your pediatrician as well. Remember that PANS and PANDAS are a clinical diagnosis and the strep titers and other tests only support the diagnosis. My DD never tested positive for strep. This should answer many of your questions. https://www.pandasppn.org/#

What did you actually give your child that made him better?

Dr. Murphy at USF in St. Petersburg is worth the drive. There are few more knowledgeable than she is. Also, here is a link to PANDAS network provider list: http://pandasnetwork.org/researchandresources/find-help/usproviders/ REMEMBER - your child may test negative for strep, mine did. that does not mean he/she does not have PANS.

“I’m less hopeful that staying with the status quo is necessarily the way to go.” Couldn't agree more. If Robin Williams couldn't get help, who can? Something needs to change in the approach to treating not only depression, but many other mental illnesses as well. It is so hopeful that more and more doctors are understanding the mind/body connection. Not good for the big and powerful pharmaceutical companies though.

My DD only tested positive for mycoplasma with her onset of PANS. That's why it is called PANS now, because many children are not triggered by strep. I was just at the CT conference a couple of weeks ago, and they pointed out that PANS is a clinical diagnosis. The blood work is done to support the diagnosis and also to treat the underlying infections. It is curious that ibuprofen did not alleviate the symptoms. Perhaps trying a short term steroid might help? The best help for my DD early on was CBT to cope with the OCD. I homeschool her; however, she loved school and did not want to leave. I pulled her out because her sleeping was so bad. She never slept, which made her vulnerable to every germ going around, which made the condition worse. Our timeline is this: 11/11 onset of symptoms 5/12 finally understood it was PANS, started ibuprofen - BIG improvement in most symptoms except tics 6/12 convinced pediatrician to RX Azith - tics resolved in about 5-7 days 7/13 finally understood the significance of raising Vit D level to 50 -80 range - HUGE improvement 1/14 finally learned about Omega 3's - HUGE improvement We had a period from Feb to mid-June with almost zero symptoms, then grass allergies, set her off. Flare was very mild compared to past flares. Flare in August from bad virus, again not too bad.

Frequent urination is a classic PANS symptom. I'm not sure where you live, but I'm in CT and this time of year the mold spores are high. I have an allergic reaction to them that causes similar symptoms to what your DD has, with breathing difficulty and the postnasal drip causing me to clear my throat a lot. Maybe some Zyrtec would help?

I would also recommend Dr. Chansky in Philadelphia; however, she is very busy. Sometimes it takes a while to get an appointment, and by the time you get there, the flare is over. Still, she can give you the tools to help your child on your own when he is flaring. She was a tremendous help to us.

Try the search box on the right side of web page below. Once you enter your zip and that you're looking for a therapist, it will bring you to a new page where you can specify child and different specialties: http://iocdf.org/finding-a-therapist/ I would recommend calling a few that sound good and asking them if they are familiar with PANS.

Encephalitis means inflammation of the brain. More and more doctors are referring to PANS as "Infection Induced Autoimmune Encephalopathy." Encephalopathy can refer to a wide variety of brain disorders with very different etiologies. Personally, I hate the cute acronyms and would prefer encephalitis or encephalopathy.

Remember, that before the full-on burst of PANS, there are quite often what they call "soft signs." My DD's first soft sign was the urinary frequency, followed by decline in school performance. She hid her OCD very well when that came along. She did compulsions with her tongue inside her mouth, things with her toes inside her shoes, things with her fingers under the desk at school. She even did some mental rituals. I don't think you can tell from just observation if a child has OCD. I would recommend she call Swedo's office at the NIMH and ask them what they suggest she do based on her daughter's symptoms. I heard Swedo say the urinary frequency statement also at a conference. I wish I knew that way back when. Maybe my DD might be okay today. If it were my sister and niece, I'd be pushy - but that's me - I'm very pushy!

My heart goes out to you. My DD is doing so well too, but still has minor flares and sleep problems. I have eaten sooooo many chocolate chip cookies in our journey I imagine all that you have done for your DD has helped strengthen her immune system, and she is on her way to being completely healed. Have faith! Say some prayers and try to substitute a long walk or some other type of exercise for your shopping or binging. Exercise makes you feel better. Better yet, if you live near the water, go for a walk on the beach and get the healthy fresh sea air. That seems to make all of us feel better.

I wanted to add one important thing. We had a sleep study done on our DD, which I think a lot of us do for our PANS children. The dr. said that most of the PANS children they tested had narcolepsy. There is a link between strep and narcolepsy. Here is a link about one study: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2786037/ Here is a link on this forum to a similar discussion. http://latitudes.org/forums/index.php?showtopic=16716

Before my DD's onset she slept unusually long hours. At onset, she had the insomnia and night wakings, which continue. She gets tired quite easily; however, it is not extra sleeping, just fatigue.

I agree 150mg sounds like a low dose. Glad he is responding though. There could be strep carriers in his school. The daily abx may have to be kept up.

Hi dut - Can you tell us what stage of "puberty." Is it full on with her menstrual period? I'm hopeful that my DD will also outgrow this at puberty, as she is doing sooo well. I know they technically begin puberty when they start to sprout on their chest, and it lasts for a few years. My DD is 10, at the earlier stage of puberty.

I strongly feel that the problem all along has been labeling this disorder PANDAS and attributing everything to strep. Doctors who did consider PANDAS would give a strep test, it would come back negative and it was, "Oh, well that's not it." That's what happened with our daughter. It seems that ever since PANS has been emphasized, the acceptance, understanding, and treatment has progressed... and we're just beginning! I am hopeful!!!!!

When my DD flares I add ibuprofen, maximum dose, 2x a day. Omega 3's are also antiinflammatory. I have her on those daily. If the immune system is inflamed, then reducing the imflammation should help a lot.

You said you emailed Dr. T. Have you tried calling him? I work with Dr. B and I am relentless in calling until someone answers; I don't leave a message, I just keep calling throughout the day until someone answers. Sometimes it takes 3 or 4 days to actually talk to someone. Frustrating, yes, but part of the drill. Maybe I missed it in your posts, but have you taken your child for CBT? Also, if ibuprofen helps your child, why not keep her on it? Especially until you have medical guidance from a doctor. Omega 3's are an excellent antiinflammatory as well.

WOW! How exciting! This is great, and, no, I've never seen this before. I will tell my dd's pediatrician about it. What a great resource. I would recommend anyone to go to this website to find out more about PANS/PANDAS. This should be PINNED here on Latitudes.

Actually what my DD had was not floaters. She described what she saw as gold spheres(in different shapes) of light that she felt like she could reach out and touch.

Yes, my DD had that at initial onset and it lasted for a while. The "experts" at Yale were clueless! To be fair this was 3 years ago and I think they've come a long way since then in their understanding of PANS. From what I've heard at conferences this a sign of encephalitis (inflammation of the brain). I don't know what your overall protocol is but giving ibuprofen should help greatly in reducing the inflammation. Omega 3's and the antibiotics are also anti-inflammatory.

Can't you call or email Dr. Bradstreet's office and explain the situation and ask for a "temporary" increase in Azith to a daily dose until the flare is over? I cannot see why he would not do this for your child.

Augmentin will not be good if it is already mixed. It's good for only 10 days after it is mixed. It doesn't matter if the trigger is viral or bacterial as far as ABX helping in a PANS child. You are going for an immune modulating (calming) effect. Most PANS doctors have the children on daily ABX. I see Dr. Bouboulis in CT and he wasn't wild about me doing every other day for my DD, but if she is not flaring, it seems to work for her. Remember with the probiotics, not to give it to your child within 2 hours of the ABX - before and after. I have used a combo of Culturelle (AM) and Florastor (PM) with great success.