JJMom39

My PANDAS ds had a normal ESR also. He has always tested positive for ANA's though. For me, and two of his dr's, this is significant, but his ped doesn't really pay attention to it because she says there can be false positives. Just curious, has anyone else's child tested positive for ANA's (anti-nucleic antibodies--common in many autoimmune illnesses)?

Vickie, can those who might be interested in making a donation PM you for the information?

I am in Ohio and would definitely be interested in attending. Thanks for trying to organize!!

My ds8 has had his strep titers checked 4 times in the last 4.5 months, and the results of each test show that his Anti-Dnase B level is coming down faster than the ASO level. With each test his Anti-Dnase B has come down, and it is now in the normal range. His ASO has come down with each test, but it is still elevated. This is confusing to me because as I understand it, ASO peaks 2-4 after infection, and Anti-Dnase B rises more slowly and remains elevated longer. Is there a reason why his ASO would still be elevated but not his Anti Dnase B? Any thoughts are much appreciated!

Very interesting. My brother and SIL are in the process of raising funds to adopt a service dog for their son with Asperger's. I would love to hear more about this as you get information.

The integrative ped who dx'ed my son told me to not let him have yogurt b/c of strep therm being in commercial yogurts. She told me many kids with PANDAS do react to it. I have not let him eat yogurt since he was dx'ed so I can't say for sure if he reacts to it or not. It seems like some kids do and some don't. I have been giving him Good Belly, which is a juice-based probiotic drink. It has the strain l. plantarum in it. I don't give it to him every day b/c I don't like for him to have a lot of juice, but it's the only thing I have found that he will drink that has a probiotic that is not strep therm. It's too bad b/c he loves yogurt.

My ds8 has a condition known as benign essential tremor and has neuro checks every 6 mos. He has had 2 MRI's--one pre-PANDAS dx and one post. The one pre dx was to look for possible causes of his tremor, like a tumor, and the one post dx was to look for inflammation. Both MRI's were normal. I do think it's a good thing to have a complete neuro work up if you are concerned about other potential issues or to rule them out.

I also wonder about this daily. Recently my ds8 finished a steroid burst and we saw no improvement in his lingering symptom. (His stubborn symptom is ADD-like issues.) Two or so weeks after finishing the burst he started to show increased anxiety, always our first signal that something is going wrong, and increased anger/meltdowns. I had an Rx for Augmentin ES that I had never filled so thought I would stop the azith for 10 days and add the Augmentin just in case a burst of a new abx might make an impact. That was a mistake. Anxiety and anger/defiance really ramped up within a few days. I kept him on it for a few more days and then switched back to the azith b/c it was too scary to see him falling apart again. We did 5 days of azith and he was fine. He is now back to a good place and back on his prophylactic dose. It seems for now azith is the thing he needs. Is it b/c it is doing a better job managing the bacteria, or is it the anti-inflammatory properties? I don't know. What is it going to take to eradicate strep from our kids for good???????

Does anyone know what it means when AntiDNAse B falls more quickly than ASO or normalizes before ASO? This is the case for my ds right now. His ASO is still elevated but coming down, but his AntiDNAseB has just come to within the normal range. This is not what I would have expected.

Azith one time per week is prophylaxis dosing rather than pulse dosing. The one time per week is based on the type of prophylaxis protocol used for rheumatic fever. My ds's ped neuro recommended azith one time per week for prophylaxis, but our ped thought this was too low. He is 8, weighs 70ish lbs and takes 500 mg two times per week for prophylaxis. I'm not sure what a pulse dose would be, but it wouldn't be one time per week. Does anyone know what the life cycle of strep bacteria is? I would be curious to know what others are doing for pulse dosing, not prophylaxis, with azith?

I was thinking the same things. It could be that his titers had not begun to rise again when you had them checked two weeks ago. If you check them again in a week or two they might be higher. Or, it could be another bacterial infection. Or, it could be strep infection with normal titers--this can happen.

I am thrilled for your wonderful news, Wilma! Just thrilled!

Wilma, I can't help with the abx, but I agree with what Philly said about finding a new Lyme specialist since his/her advice is a psych hospital if treating your dd for Bartonella does not work. A psych hospital is not going to treat Bartonella or the other things she is struggling with. Since you are happy with your PANDAS specialist (at least I think you are) what about finding an LLMD who would be willing to consult with/communicate with him? It seems like some type of coordinated treatment will be necessary, or at least one specialist needs to be making treatment decisions, ideally with the knowledge and support of the other specialist. Having two specialists who contradict each other is going to make it very difficult for you to know what to try, what to do. I know you have a hard time reaching the PANDAS specialist--have you tried faxing a list of questions to the office and requesting a fax or email or call back? Sometimes getting a succinct list in front of someone can help with getting a response. Ask him for an LLMD recommendation. Treating the Bartonella first makes sense to me but my child does not have Lyme or co-infections so that is above my level of knowledge.

Hi Dave, and welcome to the forum. I do not know if azith will kill the two bacteria you mentioned. My ds8 has been on azith since late Feb. He took several rounds of 500 mg/day and is now on a prophylactic dose of 500 mg 2x/week. We do not see a DAN! dr. but work with a naturopath/herbalist. She has advised me to rotate antifungals every 10 days in order to avoid resistance. When the bad bacteria reproduce and their offspring are exposed to the same antifungal, they will become resistant to the antifungal. That is how she explains it anyway. So far I have been rotating oil of oregano, garlic (Nature's Sunshine High Potency garlic), and a Nature's Sunshine product called Yeast/Fungal Detox. Other antifungals include pau d'arco, grapefruit seed extract, olive leaf, and goldenseal. I have not used these for my ds--he seems to be doing well with the three I have been rotating. You mentioned that you used Uva Ursi, Caprylic acid, and Ketoconazole b/c of sensitivity. Did you have sensitivity testing this time around? For probiotics I give my ds Culturelle every day, 1-2 capsules, and right now I am giving him Custom Probiotics Six-Strain probiotic powder. Culturelle is a probiotic that is less susceptible to being wiped out by abx. On the days he takes the azith I also give him 1 Klaire Labs ABx Support, because I like for him to have sacc boulardii. I keep him on Culturelle, but rotate the other main probiotic about every 6 weeks or so. The other probiotic he has taken that he does well on is Ortho Biotic by Ortho Molecular Products. When he takes this I discontinue the ABx Support bc Ortho Biotic includes sacc boulardii. He also takes a prebiotic a few times per week--Biotagen by Klaire Labs. Many kids with PANDAS do not react well to probiotics that include the strain strep thermophilus so you might want to be careful and use one that is free of this. It can sometimes take some experimenting to find the right dose of probiotic for your child.

If you are interested in NAET, you can use the "find a practitioner" search on the official NAET web site (link below). The site also has info on NAET, etc. Many NAET practitioners use acupuncture needles rather than a laser to stimulate the meridian points. Acupuncture needles are not painful bc they are tiny. My non-PANDAS ds had acupuncture for his asthma and he did fine with it. I have had a gazillion acupuncture sessions, and also some NAET sessions, and have never experienced anything remotely close to pain. For me there is nothing more relaxing than an acupuncture session. Just throwing that in because some might be put off by the thought of needles. http://www.naet.com/

I'm wondering if the fact that your younger child has strep contributed to the flare in your older dd. Since PANDAS kids can react to exposure, it's possible that at least some of the flare came from the exposure. My ds always flares or shows the first signs of an exacerbation before, and sometimes weeks before, we know there is strep infection in someone else or in him.

Soooooo happy for you and your girl!! I hope today is a good day too.

Wilma, I don't know if I can help all that much but wanted to try. I am not surprised that your dd has been getting a teeny bit aggressive on the steroids. I think that is a pretty common reaction. My ds just finished his first steroid burst and he was slightly irritable and aggressive when he was taking the highest dose. But when you are dealing with infection and neuropsychiatric symptoms it's hard to say what is causing what. Have you been giving the 50 mg of steroids all at once in the morning, or have you been breaking up the dose and giving it throughout the day? If you have been giving it all at once, and you don't get an answer from Dr. B first thing this morning, I would probably go ahead and give it so that you avoid having to give it to her later in the day. If you are breaking up the dose, you could give her part of the dose and then see what Dr. B has to say about the rest of the day. If you have been giving it all at once and go ahead and give her the 50 mg, and then talk to him later and find out he wants you to do down to 40 mg, I don't think having an extra day on the 50 mg will be that much of an issue. BUT, this is just my thinking on this--I don't have that much experience with steroids and have never been through a taper. My ds was hungry and really thirsty while on steroids. What does Dr. B say about your dd not being hungry? Do you know what infections your dd is dealing with? Does she have underlying strep of myco p or lyme & co-infections or??? I think I remember you saying that Dr. B had done some blood work but I don't recall the results. It's curious to me that he took her off the abx. I wonder if her bad reactions to bactrim and azith had something to do with herxes? I am glad you have seen some improvements. You have been going through so much!! Continuing to think of you.

There have been some past posts about Dr. Chugani in Detroit, who has been doing PET scans on kids suspected of having PANDAS. I know there have been results showing inflammation in the basal ganglia. PET scans seem to be more able to show this inflammation than MRI's. I think I remember reading that Dr. Chugani has been running a study or two using PET scans. Maybe that is something to check into. He is at Children's Hospital of Michigan--if you google him you will find his info. Knowing that there is inflammation in the basal ganglia could give confirmation of PANDAS, or perhaps other auto-immune related inflammation. I don't know if it would tell you anything else or not.

We have been using azith 500 mg 2 times per week for my ds 8 who weighs about 70 lbs. He has been on this prophylactic dose for about 2 months. Based on the exacerbations he has had I would say he is in the moderate range for overall symptoms, but has presented with one symptom as the standout symptom above all the others and that standout symptom presents in the severe range. While on the prophylactic azith he has had two exposures and was fine after both. There was maybe the mildest of flares after the second exposure. His titers have been improving--the anti-DnaseB is just under the normal range now, and the ASO is still elevated but on the decline. I do not know if he is antibiotic dependent or not because I have not tried to take him off the azith. When he had strep a few months ago Omnicef did not help him but azith did.

I'm sorry I don't have more time to respond right now but wanted to say that YES, you should ask for another culture tomorrow. If they do the rapid swab and it is positive you need more antibiotic and/or a different one. If the rapid is negative have them send it out for a culture. The 72 hour culture is best, but it seems like that is becoming hard to get. A 24 or 48 hour one is at least something. The blood work that you can request is the 2 strep anti-body titers. These are the ASO and the anti-DnaseB titers. These do not diagnose PANDAS. PANDAS is a clinical diagnosis, but elevated titers can be useful information in some cases. BUT not all kids who have PANDAS will have elevated strep titers. Some kids never show elevated titers, and others have titers that are mildly elevated or extremely elevated. I am sorry for what your family is going through. You will find great support here. The following names are from the Saving Sammy Facebook page list of PANDAS-friendly doctors. The names on this list have been sent in by families who have been seen or treated by the various dr's on the list. Dr. David Owen, M.D. Pediatric Neurologist Medical City Dallas 7777 Forest Lane, Suite A307 Dallas, TX 75230-2507 972-566-8600 Dr. Seshagiri Rao, MD Allergy, Asthma and Immune Disorders 3016 Communication Parkway, Suite 100 Plano, TX 75093-8906 972-964-7373 NeuroSensory Center of America - Trophy Club Dallas / Fort Worth Metro Kendal L. Stewart, M.D. Wallace E. Taylor, Jr., M.D. 2800 E. Hwy 114 Suite 300 Trophy Club, TX 76262 P: 817.430.3330 F: 817.491.3317 http://www.neurosensorycenters.com/

Wilma, I am so happy you have had some improvement!! We are all sending out the PV's and good thoughts to you and your girl.

I think the "typical" dose or protocol depends on the prescribing dr. The first dr. who treated my ds8 (65 lbs) gave him 5 days of azith, 500 mg the first day and 250 mg the remaining 4 days. I then had two other dr's tell me that a strep infection needs to be treated for 10 days no matter what abx is used. So, even though azith is typically used for 5 days, if it is being used for a strep infection it needs to be used for 10 days. My son then went on another 5 days of azith at the same dosing as the first 5 days. He ended up needing another 5 days, and then we went to a prophylactic dose that his ped and I came up with together. That dose is 500 mg 2x/week. Prophylactic dosing seems to vary rather widely depending on the dr., the child, the circumstances, etc. Keep in mind that even if a strep infection is treated for 10 days with azith or any other abx, if it has not cleared after 10 days, longer treatment is required or perhaps a change of antibiotic. For kids with immune issues sometimes it is necessary for them to be on full strength abx for a while, and some kids stay on full strength abx as prophylaxis. Other kids can be on lower doses for prophylaxis. If you are still seeing symptoms perhaps your son needs a higher maintenance dose or perhaps there is still active infection? Have you had his strep titers checked? Not all kids with PANDAS will have elevated titers, but it might give you something to go on if they are elevated.

There are blood tests that are used to specifically check for auto-immune hypothyroidism--they are anti-thyroglobulin antibody and anti-thyroid peroxidase antibodies (anti-TPO). Have you had these checked in your dd? If not that might give you more information to go on.

Wilma, I too suggest you stick with it so that you will know in the end if helped or did not. Going through it is the only way to know. But, you know your child and yourself better than anyone so only you can decide what is too much for her and too much for you. I think it will be important for you to speak with the Dr. tomorrow so that he knows how the weekend went and how severe her symptoms are. He needs to know how severe her symptoms are right now. Maybe there will be something else he can suggest. And if not, at least he will be aware of how things are going. If you are unable to speak with him directly speak with his nurse so that she can keep him apprised of how your daughter is doing. He really needs to understand how she is doing right now. I continue to pray for you both.