MaryAW

Here is a link to a thread about doctors who have helped with PANS/PANDAS. You need to get your child to a knowledgeable PANS dr. and have him evaluated. http://latitudes.org/forums/index.php?showtopic=5023&hl=+pandas +doctors&page=1

I agree with Riffleshell about supplements. Getting my DD's vitamin D level to between 50 and 80 ng/ml gave us huge benefits. Then adding the Omega 3s gave us even bigger benefits. We also have her on Zyrtec which seems to help a lot, as allergens can cause a flare too. We made the trek to Florida this past December to have an appointment with Dr. Murphy at USF. Wow! She is amazing - so intelligent. It cost a lot of time and money, but we learned a lot. I would definitely recommend seeking another doctor's advice. Especially a highly regarded PANS doc. I would also recommend going to any PANS/PANDAS conference you can. There always seems to be time to talk with top docs during breaks. I went to the one at Brown last weekend and was able to ask both Dr. Swedo and Dr. Murphy questions. they were very gracious with their time and expertise.

I wonder if you refer to it as autoimmune encephalitis or autoimmune encephalopathy, if they would be willing to treat? I found this in a post from February: "Duke does not really recognize a PANDAS/PANS diagnosis, but if they can find evidence of an autoimmune condition that is causing Encephalopathy, they will treat it."

aba - we were told by Dr. Murphy from USF, and I think you'll find it on the board here many times over, not to give omega 6's or 9's to PANS children - only the Omega 3's.

Any luck with the ibuprofen? For us it was a very quick improvement. Also, Nordic Natural Omega 3's Ultimate Omega Juniors were very helpful. Omega 3's are an anti-inflammatory - IF she will swallow a pill. Give her a reward for doing it. My DD responds to rewards very favorably! Lots of sympathy My husband and I felt like we entered the Twilight Zone when this all started. That's how you know it is PANS. So sudden and so drastic.

Ibuprofen! It will help with the inflammation in the brain. It helped us so much until we could get to see a PANS doc. We did max dose 2x a day. Confessions are a compulsion! This is exactly how our DD started (she was 7 1/2 when her PANS broke). The more she does it, the more she'll need to do it. CBT helped our DD, as did the book pr40 mentioned - EXCELLENT! Amazon has it. With the confessing, if she starts saying a lot at once, I would say, okay just one more thing and then we're going to do... and then find something to distract her. Distraction is key. We used the iPad a lot.

If you are doing IVIG to help with the antibody deficiency, it is important to understand that this is not a permanent cure. I just spoke with Dr. B about this for our DD. The antibodies wear off after about a month and your child will be right back where they were. You would need to do IVIG every month to keep them protected, unless they eventually outgrow the deficiency. He thought my DD (10 years old) would probably not outgrow it. Her titers were actually about 5% lower now than they were in 2012. Obviously, if your child is constantly sick, even on ABX, then IVIG would be a good idea. We are going to continue with the ABX only. She is doing really well, and I don't want to put her through IVIG every month. I also homeschool her, so she avoids a lot of exposure to germs that way.

According to the Mayo Clinic a low WBC count can be due to: •Viral infections that temporarily disrupt bone marrow function If she is flaring, it may be that her immune system is engaged and is fighting off a virus. My suggestion would be to wait for the flare to end and retest the WBC count.

You have to distinguish between PANS and PANDAS. PANDAS is caused only by strep. If diagnosed with PANDAS and treated immediately, maybe those numbers would be accurate. But how many children are actually diagnosed and treated immediately? I agree with everyone else, this is ongoing. I have heard that the blood brain barrier is breached in these children and in order for them to heal, the BBB needs to repair itself. Also, Dr. Swedo said at a conference that our children will outgrow this. I asked her when, and she said by their early 20's. I'm assuming that's if you are treating them, and they are not just spiraling downward. FYI - My DD's best benefits came from getting her vitamin D level up in the recommended 50 - 80 range and supplementing with the Omega 3's. Use high quality supplements only. My DD is well on her way to healing. We have many months symptom free and the flares now are very minor.

I have heard many times at conferences that PANS is a "clinical" diagnosis. All of the tests can help you understand the underlying trigger (if you're lucky). You do not need a smoking gun to say your child has PANS. If he/she has the symptoms (see the link below)and responds to the treatment, that's enough. 4 years later, I don't know what actually triggered my DD's PANS. She had a virus which turned to bronchitis weeks prior to onset - maybe??? I have learned A LOT about her immune system, however; and now know that she has Specific Antibody Deficiency which led to many illnesses when she was younger. I will say her best benefits came from getting her vitamin D level up in the recommended 50 - 80 range and supplementing with the Omega 3's. Use high quality supplements only. My DD is well on her way to healing. We have many months symptom free http://latitudes.org/downloads/pandas-pans-scale.pdf

Just watched the trailer. It looks interesting. I know it's going to get me all riled up! We are just now learning that our daughter has an antibody deficiency. She received all of her vaccinations. Thank God she only has PANS and not autism.

I know this is weird, but I almost feel that PANDAS publicity does a disfavor to our PANS children, and to undiagnosed PANS children. If a child tests negative for strep, no PANDAS. The focus needs to become on PANS. It also seems that the medical community is more accepting of PANS, then it ever was of PANDAS.

I give my DD Culturelle mixed with her orange juice in the AM, and Florastor mixed with applesauce at night. Both are the children's versions. The trick is to not give the pro and anti within a 2 hours of each other. The anti will kill the pro. Good luck!

I am going to the Saturday program. I want to know what they all know! It is so awesome that the medical community is becoming more accepting of PANS. Details and registration links below: https://apps.biomed.brown.edu/cme_registration/product_info.php?products_id=235 http://nepandasparents.com/images/Brown_Clinician_Program.pdf

Your supplements sound good, but you're missing vitamin D3 - which is crucial. you need to find out what the current level is to know how much to supplement. 1000 IUs per day is safe, but you will probably need more. Most PANS children (most people, period) are low in vitamin D. Make sure you are doing Omega 3s only - no 6s or 9s. High quality on all supplements. Good luck. My DD is 3 years into this and getting much, much better. I feel that getting her D level up and the Omega 3s have been the most helpful in her healing.

I would call and ask them what they need from you. I would suggest you write down a timeline of events - symptoms, illnesses. I would get a history from your pediatrician. You might want to check the PANS symptom scale: http://latitudes.org/downloads/pandas-pans-scale.pdf You are in very good hands. They will ask questions and do the appropriate bloodwork.

I found this website of the Immune Deficiency Foundation. It explains the disorder very well. It sounds like they call it: Specific Antibody Deficiency. http://primaryimmune.org/about-primary-immunodeficiencies/specific-disease-types/specific-antibody-deficiency/ It sounds like you avoided the flare! Awesome. Please let us know what you learn. Likewise, I'll post what we learn from our bloodwork. It should be back in 10 days.

I just found this out about my daughter too. The dr. said that she is a "poor responder." We are doing a mannose binding lectin test now. The dr. was afraid the test that you did might cause a huge flair in our DD, so we decided against it. Please repost so we can hear the test results. This is so fascinating. I am hoping that if this is what is causing the issues for our DD, that IVIG may cure her. I hope the same is true for your son.

We see Dr. B, and his office has the same issues. This is what I do. I call every 15 minutes throughout the day until a person answers. I do not leave messages. It sounds ridiculous, but it seems the only way to get through. I just keep the phone with me and hit redial constantly. Sometimes it's taken me 2 days to get through! I would advise staying away from Yale - a complete waste of time and it sounds like you don't have time. Maybe try calling the NIMH and ask Dr. Swedo what you should do. Maybe someone there can help guide you. Link to PANDAS Network directory of providers: http://pandasnetwork.org/researchandresources/find-help/usproviders/ You probably know this already, but ibuprofen during flares is hugely helpful.

I thought this was interesting. It pertains mainly to food allergies, but the dr. does a good job of explaining DAO and what it does. http://www.swansonvitamins.com/health-library/products/daosin-histamine-intolerance-supplement.html

This is really interesting. I'm going to talk to my DD's doctors about trying this. I had read about the DAO enzyme when researching allergies. Thank you so much for posting this!

Hi! We're going thru a similar thing here. Things are worse for us too because my DD has a cold. I'm waiting for the flare to stop and I think things will calm a bit. It's a fine line to walk! If it stays bad after the flare I will address it with her therapist.

Is there a message board for M.E. somewhere? It's all I can do as a mother to learn about PANS and how to help my DD. Maybe there is a message board where you can find better help than this one. I don't think people on this PANS/PANDAS site are going to understand what you are going through. I hope you find an answer and get the help you need.

I assume you have a good psychologist? You don't mention anything about therapy. Do you exercise? I had a friend with similar fatigue issues. She was very inactive and slept too much. When she regulated her sleep by going to bed at the same time and waking up at a reasonable hour, and also incorporated exercise into her daily routine, she was a much different happier gal.

Your DD definitely needs therapy. You do not need a psychiatrist, a psychologist who knows CBT and ERT to deal with her OCD is sufficient and a lot less money. Go to the IOCDF website. I have the link below. Click on the FIND HELP tab towards the top of the page. you enter your zip, therapists, then it will take you to another page where you can fine tune your list by "child" "CBT" "ERT" and "psychologist", etc. some will even make house calls. http://iocdf.org/about-ocd/ Here is the strategy that would probably be used: try taking a step outside the house - just one. Later try taking two steps, then three. Try to get her to the car. Then just drive down the street and back, next time a bit further. Each time when she gets anxious, help her take deep breaths to relax. Exposure Response is all about one small step at a time and desensitizing. This would be done over a period of days. If she can't handle this, wait for a psych to aid you. I agree too w/ ktdommer, that Benadryl might help calm her before you try. If your insurance covers mental health, you can go to their website for a list of providers and start making calls to find one that suits your DD's situation. God bless!