MaryAW

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

I was at the NE PANS/PANDAS Parents Assoc. event yesterday where Dr. Swedo participated in a Q & A. She specifically spoke about this. I may not get everything exactly right here, but I believe she called them subclinical symptoms and that they come on prior to the acute onset of the PANS/PANDAS. She spoke about the urinary frequency being a real marker for impending PANDAS. My daughter had this almost exactly a year before her explosion.

I have really looked into the connection between PANS/PANDAS and histamines lately. I even called the NIMH (no help really). My DD also had only dust mite allergies prior to PANS. She is now allergic to everything! I found some interesting sites that say that certain meds can cause our histamine levels to rise. Ibuprofen and Clavulanic acid (in Augmentin) are on the list: http://ajcn.nutrition.org/content/85/5/1185/T5.expansion.html http://healthypixels.com/?p=1044 The meds inhibit diamine oxidase which metabolizes ingested histamines, causing histamine levels to rise. I'm wondering if my overuse of ibuprofen contributed to her allergy problems. We have successfully replaced it with omega 3's. I am hoping that this allergy season will be better tolerated. Last year was tough!

I feel like Vitamin D and the Omega 3s are healing my daughter. If you do a search by topic, you will find a lot of posts regarding recommendations. Try searching on "Dr. Murphy" and "omega 3". I give my DD Nordic Naturals Ultimate Omega Junior - 2 gels a day.

My daughter had trichotillomania (that went away) one year prior to her PANDAS explosion date. I'd advise whoever's child this is to check their vitamin D level. If it's below 30, I'd supplement to get it up to the 50-80 range recommended by most PANDAS treating doctors. Some speculate that the low D may be the cause of the disorder. I'd also supplement the omega 3s for brain health. We did nudge our daughter and explain to her that she was going to have bald spots if she kept doing what she was doing. I don't know if that helped or it just went away. She had other little PANDAS symptoms here and there before her onset. I'd be very careful!

I can not believe he would do IVIG and not at least let you try antibiotics. Where is the harm? What about PANS? My DD is PANS. She would not have met your doctor's criteria; however, she is responding incredibly to Azithromycin, Vitamin D3 (got her level up to 70), omega 3's. I was able to educate my DD's pediatrician and he prescribed Azithromycin based on Dr. Murphy's clinical trial. Have you tried short term ibuprofen? It is not a long term solution, but it may give your poor guy some relief. I would also highly recommend looking at Beth Alison Maloney's latest book. Many of the leading PANS/PANDAS doctors offer advice. We bought it on Amazon. It is HUGELY helpful: Childhood Interrupted: The Complete Guide to PANDAS and PANS http://www.amazon.com/Childhood-Interrupted-Complete-Guide-PANDAS/dp/1492974862/ref=sr_1_1?ie=UTF8&qid=1393032191&sr=8-1&keywords=beth+maloney+pandas Our children do not fit into one nice little mold which further complicates the treatment/diagnosis of PANS/PANDAS.

My DD had bad tics with allergic reactions and giving her Zyrtec clears up the tics within days. Could there be an allergen causing this? Do you supplement with D3 and omega 3s?

My DD had very low D, as did both my husband and I. She took 3000 IUs and did get up to a measure of 70. She had no negatives along the way. We have her on 2000 IUs now for maintenance. I cannot tell you the amazing difference it has made in her PANS and life in general. It was huge for helping with sleep, even things like her balance and coordination got better. All of us are so much healthier now too. It is a big help for the immune system, no question. I did read a few places to give the D with the largest meal of the day, and I always give it to her with milk. I also give her no other meds or supplements within 2 hours of the D because I feel it is the most important thing I give to her (followed closely by her omega 3's). I did read both articles, and I'm going to say that they may both be correct because there are probably two different reasons for autoimmune disorders. I think that my daughter's issues and other PANS/PANDAS children may have been caused by low vitamin D level during pregnancy and breastfeeding, and then the use of sunblock and sun avoidance. However, there is probably a different group of PANS/PANDAS children who fall into the category represented by the 2nd link whereas they may not metabolize D properly. In the former group, supplementation would help, whereas in the latter group it might not. Just curious if those with children who have a bad reaction to D3 supplements have tried sun exposure. Remember that the sun does not produce UVB rays (which are what our skin uses to make D) in the winter north of a certain latitude.

This is really exciting! We need the mainstream media to push the mind/body connection. Thanks for posting. I think anyone who reads this post is going to get their PANS/PANDAS child checked for HPHPA!

Dr. B is great and incredibly caring. He truly cares so much about our PANS/PANDAS kids. One warning though: make the most of every appointment you have with him because it is very difficult to get a response from anyone in the office between visits - emails or phone calls. I know it is because they are overworking themselves; nonetheless, be prepared for it.

I have not heard back from Dr. Swedo after 2 weeks. I will call the NIMH to find out how long a reply should take. In the meantime, I have been Googling away! I found something very interesting. Certain meds interfere with DAO activity which suppresses histamines. Ibuprofen is one and Clavulanic Acid (in Augmentin) is another. I'm wondering if this is what my DD's issue is. Here is the list: http://ajcn.nutrition.org/content/85/5/1185/T5.expansion.html An interesting website: http://healthypixels.com/?p=1044

VITAMIN D3 is sooooooo important. Tell her to get her levels tested and up to AT LEAST 40 - 60. Watch the first video. It is a 2 minute ABC News report which sums up the importance. I have included other links as well. God bless her! You can PM me if you need more info on this. https://www.youtube.com/watch?v=2pLxmcM5v08 http://www.breastcancer.org/risk/factors/low_vit_d http://www.webmd.com/breast-cancer/news/20110429/low-vitamin-d-linked-to-aggressive-breast-cancer https://www.youtube.com/watch?v=9FMlQeH8RFA

As far as it working to reduce whatever is inflamed in the brain, yes it absolutely does. However, be careful with long term use. Try to use for flare-ups. There are negatives to long term use of Ibuprofen. Long term use can cause gastrointestinal problems, and can also affect your histamine level by interfering with DAO breaking down the histamines: http://ajcn.nutrition.org/content/85/5/1185/T5.expansion.html http://healthypixels.com/?p=1044 Try using the Omega 3's instead.

Tears in my eyes too. Prayers to God every night to find a cure! When we were at the RI conference, Dr. Swedo said in her presentation, "Your children will outgrow this." I spotted her leaving on Sunday afternoon, and thought - I have got to ask her about this. I couldn't believe no one else had during the Q & A's. What could be more pressing? I asked her, and she simply and sweetly responded, "They will." I then pressed on, "When?" She said, "by their early 20's." She was completely unwavering and confident in her answer. She was literally heading out the door, so I didn't feel comfortable asking her for more specifics. Hopefully, she will elaborate more on this at some point. My interpretation is that you cannot do nothing and merely expect it to go away. We need to use all of the tools/treatments available. My main concern is about minimizing any collateral damage. However, the brain does have a tremendous ability to repair itself.

I actually sent an email to Dr. Swedo about this a few days ago (haven't heard back yet). A year and a half ago my PANS daughter had no allergies except for dustmites - just like me. We retested her because she seemed to keep having allergic reactions to various things. Now she is testing positive for almost everything! I'm trying to understand did she develop all of these allergies in the past year or is this another PANS/PANDAS byproduct? I went to the conference in RI last fall, and Dr. Swedo mentioned that antihistamines help our children. Why? When I hear back I will post.