MaryAW

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

Get your vitamin D level tested (25-hydroxy) and work on getting your level up to between 50 - 80 ng/ml. This will strengthen your immune system. Supplement with high quality Omega 3's like Nordic Naturals. You want more EPA than DHA. These are excellent antiinflammatories. Also take some high quality probiotics like Florastor - healthy gut, healthy mind. Good luck

If your daughter does well on ABX, why would you do plasmapheresis? That is for the most extreme cases of PANS/PANDAS.

Try calling the NIMH and asking them what to do to prevent the onset of PANDAS, ask what tests your DD should have. This happened to my daughter one year prior to onset of PANS, not PANDAS - no strep for her. Dr. Swedo said at the Mass. Q & A a few weeks ago that frequent urination was a big indicator for PANDAS (but remember my DD was PANS). It went away for my DD but then she started getting nighttime fears, then some repetitive behavior, then full on PANS. We did not know about PANS/PANDAS. If your child does have the sudden onset of other symptoms, get her antibiotics immediately!

I went to the Q & A in Mass. a couple of weeks ago 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. During bad flairs ibuprofen or aspirin can help too. The Neilmed nasal rinse at night was excellent too, but a bit tricky!

I do not understand the Cunningham tests. I have heard her speak twice, and I still don't understand the tests. Are you seeing a dr. who understands PANDAS? If you go to the Moleculera Lab web site, they show what is "normal." See links below. Your results are high based on their guidelines. hope this helps. http://www.moleculera.com/wp-content/uploads/2014/02/Report-Template-Version-3-1.pdf http://www.moleculera.com/testing/

I would absolutely give a call. Why not? From what I understand, the C Panel is for hard to diagnose cases.The best way to diagnose PANS/PANDAS is by looking at the symptoms. ABX took at least a week for us to see results (we use Zithromax). Ibuprofen worked almost immediately, cutting down the OCD, nightmares, etc. by maybe 50%.

Great article! I am so sick of people saying this illness is "controversial." I wish I had a video of my daughter. she had an allergic reaction and went absolutely crazy. I gave her a dose of Zyrtec and within an hour, she was about 80 - 90% back to normal. I wish I had videotaped it to show to the skeptics. It was fascinating! So quick, and yet such an example of her immune system causing this mental reaction, and the allergy medicine quickly relieving her.

I home school my DD too. Best decision ever! She hasn't been sick in a year. We still do extracurricualr too. she is so happy, and definitely healing better without the stress of school.

I went to the Q & A in Mass. a couple of weeks ago 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. During bad flairs ibuprofen or aspirin can help too.

This one is aimed at younger kids, but it gives a great step by step approach to helping fight OCD: http://www.amazon.com/What-When-Brain-Stuck-What-/dp/1591478057/ref=sr_1_1?s=books&ie=UTF8&qid=1396926883&sr=1-1&keywords=children+ocd

Dr. Chansky's book is so good that we found out where she practices, and now drive 3+ hours so she can be our daughter's CBT doctor. "Freeing Your Child from Obsessive-Compulsive Disorder: A Powerful, Practical Program for Parents of Children and Adolescents" is a great book. the link for Amazon is: http://www.amazon.com/Freeing-Your-Child-Obsessive-Compulsive-Disorder/dp/0812931173/ref=sr_1_4?s=books&ie=UTF8&qid=1396926565&sr=1-4&keywords=tamar+chansky