MaryAW

I'm just wondering why Azith only 2X a week? Have you tried going to every day? My DD uses Azith, and we were able to go every other day for months, then she got sick in August and we are back to every day. Her tics are gone now. I will give it a bit more time and then try going back to every other day. ABX are not just used to treat bacterial infections in our PANS children. They have an immune modulating/anti-inflammatory effect. I would think that 2X a week would not be adequate to accomplish this. I do homeschool my DD and she rarely gets sick. There are a lot of online programs. Some states even have their curriculum online for free. Just putting that out there.

I'm assuming you've started back on ABX? My DD is on azithromycin and that helps with her tics.

Our DD had what they call soft signs prior to her dam breaking with full-on PANS. You may not be there yet if all you have are tics. If you can keep him on ABX you may be able to kick this. I would recommend calling the NIMH - Sue Swedo's group. Explain the situation to them and ask them how long you should keep him on antibiotics or what you should do. Remember too that PANS can be caused by viruses, not just strep and lyme.

Here are 2 posts regarding homeschool. I do homeschool my PANS daughter. It has made an amazing difference because she isn't tired all the time, not exposed to all those germs, and not exposed to all the stress. The past two years has shown amazing improvement. My husband was against homeschool at first. I kept saying to him "This is her life," and her life sucked at the time. The counselor at school thought homeschool was a great idea too. She said, "This is your daughter's mental health we're talking about." She knew that my DD was not getting the help she needed in school. My husband will tell you that homeschooling her was THE BEST decision we have made in helping her to recover. He is a total believer now. She is symptom free about 70% of the time and her flares are much milder than before. Good luck! http://latitudes.org/forums/index.php?showtopic=22591&hl=homeschool#entry173745 http://latitudes.org/forums/index.php?showtopic=22102&hl=homeschool&page=2

I agree with pr40, get to a PANS/PANDAS doctor and try ibuprofen in the meantime. Here is a link to a thread from this forum of recommended doctors: http://latitudes.org...?showtopic=5023 Here is a link to PANDAS Network's list: http://pandasnetwork.../provider-list/

My DD had this and it was a tic. It was caused by an allergic reaction to ????? It went away after 4-5 days of Zyrtec. She is also on long term abx. Another possibility is that it is an OCD compulsion. CBT would help that. Give her a strategy, something else to do when she feels that she "needs" to bite down, or better yet, get her a session with her therapist to help her. You don't want dental problems from this.

I would recommend doing a separate post - PANS/PANDAS doctors in Canada? That might get you an answer. In the body of the post, give your exact location within Canada. Maybe there is someone on the forum who can help you find someone close to you. Otherwise, you might have to take a trip to the states for a consult with one of the top doctors here. We have all spent a lot of time, money, and effort. In the end it is worth it. Best of luck to you.

Instead of trying to manage this yourself, why don't you go to a PANS/PANDAS doctor? Remember a PANS child will not necessarily test positive for strep. My DD never has. Here is a link to a thread from this forum of recommended doctors: http://latitudes.org/forums/index.php?showtopic=5023 Here is a link to PANDAS Network's list: http://pandasnetwork.org/resources/providers/provider-list/

I know from my experience with my DD that if the immune system is really activated, there's not much that can be done about the OCD. Beth Alison Maloney made some comments about that too in one of her books. You have to get the immune system to a calmer state before the child can use the CBT tools. My DD is great at CBT, but when the grass pollen is super high the OCD just drives her crazy, and nothing works. Before you invest all the time and money, I would make sure you have dealt with the underlying infection(s) or allergies as best you can.

Has he been on longterm antibiotics? Have you tried prednisone? What about vitamin D levels? Getting your child's level to 50 to 80 ng/ml helps the child's immune system. We also had great success with omega 3's. Before we could get our DD into a doctor, ibuprofen helped tremendously. If your child is PANS, ibuprofen should help with the inflammation in the brain. God bless you and guide you

Doctors have to remember (or learn) there is PANS too. Not all of this is caused by strep. Illnesses like lyme, the flu and other viruses can cause these symtpoms.

Yes. It gives you a false sense of security sometimes. We thought our DD might be "outgrowing" PANS, and then the grass pollen brought it back; however, it was not as bad as in the past. We did catch her PANS relatively early, 7 months after onset. I'm sure this helped. I also decided to homeschool her to keep her healthier and let her immune system heal. I feel like the two biggest things that have helped are getting her vitamin D level up between 50 and 80 ng/ml and giving the Omega 3 supplements. We noticed incredible improvements with both of these supplements. (She is also on Zithromax).

If you need it, this is the vaccine protocol from Dr. O'Hara's website: http://ihealthnow.org/information/documents/Vaccine_Protocol_2-2013.pdf

Very interesting! I far prefer the term autoimmune encephalitis to PANS or PANDAS. It's more accurate and better conveys the gravity and complexity of the disorder.

My dd had the exact same problem with sad cartoons. She needed CBT to help her get thru it. Could this be from the pollen? My dd has a bad time with allergy season. We give her Zyrtec, vitamin C, and Ibuprofen during pollen season. Omega 3's and vitamin D help also.

My DD never tested positive for strep or Lyme; however, she improved dramatically with Azithromycin and Ibuprofen. We gave her just the Ibuprofen until we could get her into Dr. B, and saw about a 50% improvement just from that. Her tics went away after a week of ABX and we saw continued improvement. I'm a huge proponent of vitamin D and the omega 3's too. They have helped her to heal greatly. Use a high quality brand of these.

Have you tried giving him Ibuprofen? When my 10 year old DD is flaring I give it to her twice a day. You also should be supplementing with high quality Omega 3 fish oils (we use Nordic Naturals Ultimate Omega Juniors) and vitamin D (we use Nature Made soft gels). The dr. will have to guide you on a dose for the D, as you want to get the level to between 50 and 80 ng/ml. Another thought is allergies. Pollen season is very tough for us. Zyrtec and vitamin C have helped us with coping with allergies. Also, are you using a therapist? Talking to someone may help him.

Remember too, that there is PANS. My DD has never had strep, but has PANS. It was triggered by a virus 2 years ago.

You ALWAYS need to take high quality probiotics with antibiotics. Do not take them within 2 hours of the antibiotics. You should get yourself to a doctor ASAP. They can diagnose you with a stool sample test. C Diff can be very serious and is highly contagious. This is a link to the Mayo Clinic's website regarding C Diff. It should answer your questions: http://www.mayoclinic.org/diseases-conditions/c-difficile/basics/symptoms/con-20029664

My PANS daughter had a sleep test. She had mild sleep apnea; however, the doctor said that most PANS/PANDAS patients he had tested had narcolepsy. It sounds like you need to see a PANS/PANDAS doctor. Where are you located? I think Dr. Murphy or someone from her group in florida is the best place to go. In the meantime, you can take omega 3's, vitamin D, and probiotics.

UPDATE to my earlier post - I went to the Q & A in Mass. and asked the panel about histamines and our PANS/PANDAS children. I explained how my daughter had allergy testing prior to onset and was allergic only to dust mites. After 2 years of PANS she is now testing allergic to everything and had very bad flairs last pollen season. I asked if this was related to PANS/PANDAS. Dr. Swedo nodded her head as I asked. She explained that her immune system was in an inflammatory state because of the PANS. Her recommendation was to work at modulating the immune system. The entire panel was in agreement that immunotherapy was not the right thing. It is not that they are actually allergic, so much as their immune systems are in such a state of inflammation, that they react to the allergens. (I do not remember the exact wording, but this is the gist). They recommended antihistamines (I use Zyrtec for my DD). I have read that vitamin C is a natural antihistamine, so I have been giving that as well. Nordic Naturals Ultimate Omega Jr. is a great source of Omega 3's which is an anti-inflammatory. Also, getting your child's vitamin D level to 50 - 80 ng/ml will help. It is late May now, and so far my DD has not flaired this pollen season. Her worst time last year was the grass pollen which is about to hit. I'm hoping and praying that she will continue to do well!

We use the Nordic Naturals Ultimate Omega Jr. which is more EPA than DHA, and we have seen such amazing results! I am intrigued by your luck with DHA but hesitant to switch because my daughter does so well with what we are using. I say this in almost all of my posts, but I think the Omega 3's and getting the vitamin d level over 50 ng/ml are the two most important things we can do to heal our children.

It sounds like you need better guidance. What about vitamin D, fish oil, probiotics? You should post your protocol and your lack of progress and ask for suggestions. I would also post your location, so people can suggest some other doctors. Personally, if i was just starting my journey with PANS, I would seek out Dr. Murphy in Flordia or someone from her department. She is absolutely the most knowledgable doc out there as to what works. Taking care of you PANS child is a full time job. You are going to have to spend every spare minute you have researching this disorder, finding the right doctor, meds and supplements for your child.

Perhaps your child does not have PANS or needs a different protocol. Are you working with an excellent PANS doctor? You can see PANDAS Network suggestions or search here on Latitudes for other doctors. http://pandasnetwork.org/resources/providers/provider-list/

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 2 1/2 years now is 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 here at Latitudes or Beth Maloney's book, "Childhood Interrupted: The Complete Guide to PANDAS and PANS." Most of all, love them and be kind and patient