MaryAW

I'm in the same mess, but it's even worse! The original skin prick was just positive for dustmites; however, she flares when the pollen counts are high (like now!)She has very sensitive skin, so we don't trust the intradermal testing - she tested positive for almost everything. So we did the blood testing. However, she has an antibody deficiency, so we're not sure how accurate that is either (the blood allergy testing checks the antibody response to various allergens). It showed just an allergy to dustmites. So, maybe she really is only allergic to dustmites and she flares because her immune system is so inflamed? Or maybe she has high histamines? I guess we may do another blood test for this. We need to talk to her doctor. There is no doubt in my mind that the high pollen makes her flare, but how do we treat that if she is not technically allergic? I am so confused. BTW - Dr. B is pro-immunotherapy. Shots, not sublingual. I think they start with a lower dose with the PANS kids.

It sounds like you need to go to an experienced PANS/PANDAS doctor. You can try posting with the subject: PANS/PANDAS doctors in Colorado or you can try the PANDAS Network directory: http://pandasnetwork.org/researchandresources/find-help/usproviders/ Here is a link to a thread that was pinned in the Helpful threads section: http://latitudes.org/forums/index.php?showtopic=5023 If you want to try to educate your pediatrician, here is a link to a website set up by the best PANS docs in the country: https://www.pandasppn.org/ It is worth traveling if you have to and spending the extra money now to see a great doctor, rather than have your child (and your family) suffer needlessly.

Do you know about this book? For us the abx helped her use her CBT strategies. I don't know if we would have noticed anything if she didn't have those strategies to fight the OCD. http://smile.amazon.com/What-When-Brain-Stuck-What-/dp/1591478057/ref=sr_1_1?ie=UTF8&qid=1428858860&sr=8-1&keywords=what+to+do+when+your+brain+gets+stuck

I am going thru this too and have been debating the shots for over a year now. My DD tested positive for almost everything, BUT she is definitely not allergic to all of it. We notice a reaction to mold and grass pollen only. I decided to go to a different allergist for a 2nd opinion. We are waiting on blood tests for the allergies because the new doc said someone with sensitive skin (my DD has that big time) could react to the pricks and intradermal tests because of the hypersensitivity. Hopefully the blood test will give us the truth. Also, I asked Dr. Swedo about this at a conference and she thought it could be that the immune system is so inflamed that it is reacting to the allergens, but that my DD is not necessarily allergic. We need to work on reducing the inflammation in the immune system and the "allergic" response should improve. And we have seen this improve over the past year and a half. Also, it is my understanding they bundle everything in one shot.

We initially tried ibuprofen while we waited for dr. appointment and saw a drastic reduction in her symptoms from that. One month later she was put on Azithromycin, and I would say we saw strong improvement after 5-7 days of that. She was doing CBT with a therapist simultaneously, which was also helpful. Both meds allowed her to use the CBT strategies and keep the OCD at bay.

What else is your child taking? Antibiotics, Ibuprofen, vitamin D, omega 3's? Are you seeing a PANS/PANDAS doctor? I'm including a link to the new PANS/PANDAS website created by the top doctors to help with diagnosis and treatment. https://www.pandasppn.org/

I would recommend calling Dr. Swedo's office at the NIMH and ask if they have suggestions for you. It's a serious concern that very few doctors would understand, but she should. My understanding is that you probably won't speak with her, but someone on her staff would check with her and get back to you. Here is a link to the website. A phone # is at the bottom of the page. If you decide to send an email, I would check with them to make sure the email on the page is the correct one. http://www.nimh.nih.gov/labs-at-nimh/principal-investigators/susan-swedo.shtml

I'm sorry for your daughter and for your family. I read your history and I did not see anything about therapy. Does she have a good therapist? As others have mentioned, a therapist who knows both ERT and CBT. That is what a child with OCD needs. The OCD Foundation has a directory on their website: http://iocdf.org/

I was at the medical day. I took some notes, but not a lot because they said that the slides would be available online. I have not been able to find them. I can send an email to find out and post a link if one exists. I focused mainly on what pertained to my own child's needs with my notes, but here is what I have: Dr. Swedo in her presentation, did not seem to offer anything dramatically different than what she has said before. She said that striatal encephalitis was a medically accurate description of PANDAS and might get covered by insurance more easily. She said 440 was normal strep titers for a school aged child. She was all about PANDAS, did not use the term PANS often. I asked about this, and her response was that all of the research that had been done in the past was about PANDAS. For me personally, this is frustrating because they knew about other triggers way back when - hence PITAND. But I do love Dr. Swedo and her devotion to our children. She answered a question I had in private conversation. She said that a child should stay on abx for one year after being symptom free. For my DD, who has an immune deficiency and relatives on both sides with rheumatic fever, she said it might be wise to keep her on for very long, if not indefinitely. Dr. Williams from Yale, and now Mass. General, spoke of higher rates of immune deficiency in PANS children, making them predisposed to autoimmune disorders. He said IGA levels go up nominally as children get older; however, in children with OCD, they do not. Dr. Frankovich from Stanford spoke of immune problems - genetic history of autoimmune diseases and immune deficiencies in PANS childrens' families. She also spoke about giving ibuprofen (or Naproxen) 2-4 X a day. Wean off and then if they are doing well, you can remove the it from the regimen. She expressed a need for more clinics like the one at Stanford. Dr. Xiang spoke of sleep disturbances - night terrors, nightmares, not wanting to sleep alone, restless sleep, REM being disturbed. Dr. Cooperstock spoke about antibiotics, but it seemed like he was not on the same page as most PANS doctors. He uses abx strictly for prevention of strep, whereas most docs seem to feel there is an immune modulating effect as well. I found his presentation did not offer anything new. Someone asked the panel if allergies can cause OCD, and they all responded - yes. Quite a few parents asked very specific questions about their own children. Even though neither Dr. Swedo or Dr. Williams would directly comment on the results of the IVIG study (coming VERY soon - they said), it seemed like it was extremely positive. I'll crunch my brain and try to remember more.

Here is a link to a website that was done by the top PANS/PANDAS doctors in this country. It is to help doctors understand, diagnose, and treat the disorder. Maybe you can share the link with your doctor: https://www.pandasppn.org/ In the USA some of the doctors who help our children are immunologists and neurologists. Maybe you can try to find one of those in your country who might be able to help you, if your child's doctor cannot help.

If your child truly has PANS or PANDAS, you better get used to having them on antibiotics. My DD has been on them for 2 1/2 years now. Dr. Swedo says that a PANS/PANDAS child should stay on abx until they have been symptom-free for one year. Below is the newly created site for physicians to educate them on the disorders and how to treat them: https://www.pandasppn.org/ PLEASE let your husband know that if your child has PANS or PANDAS, the sooner you start treatment the less severe the disorder will be. My DD suffered for 6 months because the doctors we originally went to did not know how to treat PANS. Each exacerbation was worse than the last, with new symptoms. No need for your child (and your family) to suffer. Since she has been on abx and under the care of a knowledgeable dr. she is substantially better. She has several months with no symptoms - and we keep her on the abx the whole time! If your dr. doesn't know how to diagnose/treat, get to one who does ASAP.

Dr. Swedo said that our children will outgrow PANDAS. I asked her when, and she said by their early 20's. From the message boards, it seems as though some outgrow it sooner than that. With PANS, they do not know for sure, but I feel like my daughter after 3 years is slowly getting better from PANS. What we as parents have to do is minimize the "collateral damage" from the disease by providing our children with the best care possible. Minimize exposure to strep and other serious illnesses, strengthen their immune system by raising their vitamin D levels and giving high quality probiotics. Supplement with high quality Omega 3's to reduce inflammation. Find a great CBT therapist. Read up on the illness and attend the conferences to stay educated. New discoveries are constantly being made that can help us to get our children better. Most of all, love them and be kind and patient

Yet another reason to opt for organic. Sounds like they need to worry about the farm animals before they worry about our kids - if that's your concern.

First off, here is a link to an excellent resource online about immune deficiency: http://primaryimmune.org/ They sent me a large package, as well as a list of immunologists in my area that specialize in treating the condition. I just met with the new doctor last week, and he ordered additional testing. I will let you know those results when they come back. All of my DD's various IGs are either low or the very low side of normal. I went to the PANS conference a couple of weeks back at Brown. There was A LOT of talk about immune deficiency. It seemed like maybe it was a fairly new puzzle piece. I have been to three prior conferences and this was the first I remember hearing about it. A graph one doctor displayed, showed the immune system and how much it improved(matured) in the "normal" population vs. in PANS/PANDAS children. The "normal" children showed steady growth, while the P/P children were flat to slight growth. I was trying to find it online but can't. If I do, I'll post the link. We see Dr. B and Dr. Murphy of USF. Dr. Murphy seems to think the immune deficiency is the reason for my DD's PANS. She seemed very pro-IVIG. If my DD was in school or if this was earlier on in her treatment, I would do the IVIG. However, she is doing so well right now, it doesn't make sense to do it. If things worsen for her, either with PANS or frequent infections, I would give it a try. Will post when I get the other bloodwork back.

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.