MaryAW

If ibuprofen was helping, you should continue with it. I had my DD on it for 2 years with no negative effects. I would do 2 doses daily - one before bed, and one after breakfast. The best things we did for our DD (who is a real standard case of PANS) was to raise her vitamin D level to over 50 ng/ml. I use NatureMade D3. HUGE improvement. The PANS docs want it ideally between 50 - 80 ng/ml. This takes monitoring thru bloodwork. If he is below 30, try 3000 IUs daily to start. Once you get it up in the range, you can reduce the dose(my DD is now on 2000 IUs with a level of 70 ng/ml). The next huge thing for her was Omega 3s. I give her Nordic Natural Ultimate Omega Junior - 2 pills/2X a day. HUGE improvement! No flares for her since January, and that was nothing major. Her overall health has improved too. God bless and good luck!

My DD tested positive to everything on the intradermal test. My dr said that some people's skin is so sensitive that they test positive even though they are not allergic. On the blood test, she was only allergic to dust. I asked about allergies at a conference once, and Dr. Swedo said that the child's immune system is so inflamed that it may react to the allergens as if if they were allergic. Just like Hopeinhim, I have seen my daughter's allergies decrease. She used to flare from spring till the first frost. Each year we have seen improvement, with now just a reaction from mold spores. Getting the vitamin D level up to above 40 ng/ml (50-80 is best) and giving a high quality omega 3 (we use Nordic Natural Ultimate Omega Jr. - 2 pills twice a day) helped us to see a HUGE improvement in every aspect of our DD's PANS.

I'm so sorry for you. My heart really does ache. All that effort, so sorry. Do you think they pushed her too hard or just that she wasn't ready, or both? I'm very nervous about doing this, exposing her to all of these fears when she's not at home with her daddy and her dog. I don't know what to do or when. She hasn't flared since January, but the fears are really ingrained in her.

I commend your doctor for this! I have homeschooled my daughter for 3 years now, and she is doing so well. She was constantly sick when at school, and it was a vicious cycle. She goes for several months now without being sick. There is no doubt in my mind that this has been a huge factor in her recovery. It was scary at first, but now we both love it. What state do you live in? Find a homeschool group in your area and ask them about online schools and other resources. They are such a kind and helpful group of people. There are online schools too. Start Googling! You can do it! It's worth the effort!

I'd go to Dr. Murphy at USF, Rothman Center, if she's seeing new patients. Otherwise, Dr. Williams because of the entire MGH clinic. Either place you get a full staff of knowledgeable people. I flew down to Fla with my DD to see Dr. Murphy. My DD has not had a flare since January now. I was soooooo impressed with her.

I need to do this too with my 11 year old DD. I wish we could be there with you! How did you find the condos?

This is huge! Great news! The only problem is that you need to be a subscriber to see the main article online. My husband is running out to see if he can buy a copy. The 2nd link is available to everyone.

Have you tried ibuprofen or omega 3's? During a flare I always put my DD on ibuprofen - big help. Omega 3's are also an anti-inflammatory.

Is the IVIG covered? Is there a reason you are hesitant to try it? I would think, if you have truly tried everything and not had success in 5 years, why not try IVIG? This is the new site created by the top PANS/PANDAS doctors. It may prove helpful to you and your current docs: https://www.pandasppn.org/ Maybe you can find a dr. who will give a 2nd opinion, and takes your insurance. List of providers in Ohio from PANDAS network: http://pandasnetwork.org/researchandresources/find-help/usproviders/#OHIO

FYI - my DD is PANS. I can't say for sure what was behind Dr. Swedo's comments. I know she is very concerned about strep prevention. However, Dr. Murphy, whom I respect deeply, says that abx have an immune modulating effect (calms it down). So, I'm not sure if it's strictly strep prevention or the effect on the entire immune system that she was concerned about. I know that if my DD goes without her azithromycin for more than 3-4 days her tic comes back. when we put her on the abx it goes away quickly. My non-professional opinion would be to monitor your child. If he stays at baseline then I wouldn't do the abx. If it looks like he is starting to revert back, I would think long term abx until one year symptom free would be wise.

I wonder what exactly "state mandated" means. Does this mean that all doctors in CT will have to learn about PANS/PANDAS or just from this medical center. Very interesting!

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.