JJMom39

My ds had a similar situation but right after school started. He was doing really well, then he started showing his tell-tale symptoms. We were not aware of any exposure and his swab was negative. But we check titers every couple of months and his DNASE, which had normalized in June, was elevated again. We treated based on that and the flare up stopped in its tracks. Like you said no way to know what caused the increase--new infection, old infection, exposure....

I am glad you found the source! But not a fun situation to deal with. Are both kids currently on abx--prophylactic or treatment dose? If not on abx I would get them on and if on prophylactic dose I would bump up to treatment dose for a time. When my ds has a known exposure we go up to treatment dose for the abx he takes (azith) for one cycle, so we do 5 days with the first day being the loading dose. That has worked well for him. You could also think about checking titers. Our dr. has suggested doing that during times of flares and it has proved enlightening for us.

I just found out that my ds's teacher has strep throat! She is fully aware that ds has PANDAS and what that means, and she understands the dangers of exposure. She told me last week that she had been exposed to a child who tested positive for strep like 4 days later (this child is in another class), and she was very worried that she would have somehow exposed ds to strep. He started to show some minor symptoms and complain of a headache, stomach ache, and sore throat at the end of the week. I had him swabbed and it was negative, and the culture is cooking away at the hospital right now. His symptoms and physical complaints lasted one day only so my anxiety level came way down. But, when I found out today that his teacher has strep now, I started freaking out again. 1) How long would you keep your child home from school if their teacher had strep? 2) If there is a substitute teacher for a day or two, would you send your child to school, or would you be concerned about strep lurking in the classroom? 3) Would you bump up to treatment dose of abx when he does go back to school just in case? Of course I am also worried that she could have exposed other kids in his class and that now strep will be going around his room. I'm trying not to totally panic but that is hard. He has been doing really well since school stared so I am even more worried about losing what he has gained. Any advice on how to handle the situation is much appreciated.

I am so sorry things are so difficult for you and your son right now. All the doubt, questions, and fears you so eloquently expressed capture what we go through in trying to help our children. It is painful enough to have a child who is suffering, but then to not know how to help, what to try next, is beyond stressful and exhausting. I have the same questions Kayanne asked about antibiotics--what was he on as prophlaxis, what was he given when the exacerbation started--dose, duration, etc. What abx helped him in the past? When the exacerbation started did you have titers checked? You mentioned he has tried two different anti-anxiety meds. Which meds are these? Kids with PANDAS can be very sensitive to psychotropic medications. They can actually make things worse rather than better if the dose is too high. The normal dose for a non-PANDAS child is most often too much for a PANDAS child. If he did not start at a very low dose perhaps the meds are causing some issues? Or possibly even if he was on a very low dose they would cause some issues. These types of medications can sometimes not work properly in a PANDAS brain. Just trying to think of other things that might be contributing to what is going on with your ds. Is his dr. experienced in treating PANDAS? If not, have you considered a consult with an expert? Where are you located? Perhaps someone can suggest a dr. in your area.

My ds's neurologist recommended azith 250 mg twice in one day, one time per week, so a total of 500 mg once per week, for his prophylactic dose. I believe, but am not positive, this dose comes from the prophylactic dose recommended for rheumatic fever. His ped and I were worried this would not provide enough coverage so he takes 500 mg (250 mg AM and 250 mg PM) two times per week. He has been on this dose since April. He has had two exposures since then, both close and one of them very close, and he did not flare either time. But, he had a flare a couple of weeks ago for an unknown reason. We switched to Augmentin XR for 10 days and he was fine. He is back on his prophylactic azith dose now. This dose seems to work well for him, but there is no standard prophylactic dose so you will find there are many different dosing schedules depending on what works for the particular child. We live in an area where there is a known high strep resistance to azith, but it has been the abx that works the best for ds so far so we keep our fingers crossed.

I too appreciate hearing everyone's experiences, positive and negative. That is one of the things I value about this forum--that I can come here and find many different takes on a treatment, medicine, supplement, etc. I need that information in order to help make informed decisions. If I only read positive things about all the various treatment options, I would have no clue which way to turn. And if I only read negative things I would also be paralyzed with indecision. It is beneficial and valuable to know what others have experienced because no one treatment will work in all cases in the same way. I have considered classical homeopathy for my ds, but I would not make that decision based solely on positive or negative feedback. I am thinking about all the information I have read on the forum, and will continue to do so. The reality is that just like any other treatment option, it will work for some and not others. If someone has had a negative experience I need that information just as much as I need the success stories, for homeopathy and all other options!

I am so sorry for what you are going through. I am glad you have found this forum though. There is so much support here and a wealth of information. You asked about antibiotics. There is no standard treatment protocol for PANDAS/PITANDS so there is no one go-to antibiotic. Azithromycin (Zithromax) and Augmentin are two abx that are commonly used. There is regular Augmentin, Augmentin ES (extra strength) and Augmentin XR (extended release). Augmentin XR is the abx that was used by the boy in the book "Saving Sammy." Your child would be too young/small for the high dose it comes in though. There are plenty of kids who take Augmentin or Augmentin ES too. It can be a bit of trial and error to find the right abx for your child/situation. My ds9 has responded best to azith, but he has taken Augmentin XR to help him out of a flare. Other abx that are used include Omnicef, Keflex, Pen VK, and there are still others. Amoxicillin is often used by peds for strep infection, but there can be a high failure rate and it often does not work well for kids with PANDAS. That is not across the board, but I would be wary of using it for those reasons--my opinion on that. As far as how long to use abx, many dr's will rx for 10 days. That is not long enough when you are dealing with PANDAS/PITANDS. Advocate for at least a 30 day rx. If you find that the abx you start with is not helping, you can switch to another before the 30 days is up. But you want to have good, solid coverage.

If you google NAET, you will find the official web site. They have a search feature to help find practitioners, and under each practitioner they list they courses they have taken. I have not tried this yet for my ds, but am considering it, and for my non-PANDAS ds too, who has severe allergies, and other things going on. I have had some NAET sessions, but don't want to try to explain it b/c I will botch it I'm sure! I think it helps to have an expanded thinking about what allergies can mean in order to understand it better. They can go way beyond the things we tend to think about.

Since he is he taking zithro, is he also taking probiotics? Just wondering since you mentioned you are worried he has gut bugs. If not talk to your dr. about what he recommends. ((((Hugs))))

I asked my naturopath, who has consulted on some issues re: my PANDAS ds, about biofilms, and she recommended we try a product she uses for patients who have chronic bacterial gut infections. It is a Klaire Labs product called Interfase Plus. It contains about 9 different enzymes, but only one of them is one that you mentioned. My ds has been taking this supplement for about 4 months. He takes so many supplements that it is not always possible for me to isolate what helps and what does not. It has not made him worse in any way so we continue to use it since I feel it is contributing in some way to his improvements, but again, he takes many different things, including abx. The other thing she suggested we try for biofilms is an Ortho Molecular product called Intestin-ol. It contains thyme, clove and oregano oil, which she also uses for biofilms in chronic gut infections. My ds could not tolerate this product. The oils were too heavy for his taste and they caused him to spit up a tiny bit. This is not uncommon and perhaps could have been helped by taking the supplement with milk, but he would not even consider it. We use oregano oil on its own instead because he can tolerate that. I would not use either the enzymes or the oils without the help of a professional. There are always considerations for other supplements that are being taken and how they all interact together and if you need to take something with food or away from food, etc. And with the oils it is preferable to rotate them in and out so that the bacteria do not build up resistance.

We use a product called Enhansa. It is an enhanced-absorption form of curcumin. My ds takes 450 mg 2x/day. You have to work up to this dose though. If you google Enhansa you will find the official information and the dosing protocol from the compounding pharmacy that sells it, but he is on the dose under the guidance of a doctor. Because ds takes many supplements is has not been possible for me to really isolate what helps and what does not, but I would not want to discontinue the Enhansa since it is the primary anti-inflammatory he takes.

Elijo, I'm so sorry this is such a rough time for you and your dd. Our ped has told us repeatedly that antibiotics can interfere with a swab and that a swab could be negative if a child is on antibiotics. But when my ds was fist diagnosed with PANDAS this winter he was on an antibiotic for a little while and then swabbed and the swab was positive. So it seems it can go either way.

We use Coromega, the orange/chocolate flavor. It is in a creamy "pudding-like" form that comes in small packets. Both of my kids take it with no problem.

My son has been taking azith 500 mg 2x/week as a prophylactic since March. Before that he was on a treatment dose during an exacerbation. It has been the best thing for him. Just a few days ago we added in Augmentin XR 2000 mg/day, for 10 days to see if that would pull him out of a flare. So far so good, but it's too early to render a final say.

There are quite a few abx other than pen that work to treat strep. And pen is not one of the abx most commonly used to treat PANDAS. (There are some kids who take pen, it's just not as common as some of the other abx.) Two antibiotics that are commonly used for PANDAS are azithromycin and Augmentin. Augmentin is amoxicillin and clavulanate. There are different versions of Augmentin--regular Augmentin, Augmentin ES (extra strength) and Augmentin XR (extended release). The XR version of Augmentin was the med used by the boy in the book Saving Sammy. The XR version works well for many kids, but it is only available in pill form, 1000 mg, and the pills are huge. They cannot be split or the time-release mechanism is damaged. If a child is younger the 1000 mg pill would not be an option. The dose is too high. The other versions of Augmentin come in lower dosages and in liquid form. But, amoxicillin is a penicillin-like abx, so that probably would not be a choice for your son since he had an allergic reaction to pen. Azithromycin comes in pill or liquid form and it is not a pen or pen-like abx. There are many other abx one could try. I don't know my abx well enough to know which ones would be off limits b/c of a pen allergy. If you are seeing a PANDAS specialist they will know where to start. Sometimes it takes some trial and error to find the one that works best for your child.

Hi PhilaMom, I too am not sure I have what you are looking for but I would be more than happy to send you what I have if it would help. My ds attends a private school so our process had some differences from what the usual process is typically, but the public district did have to be involved when we transitioned from accommodations to an IEP. Initially ds's neuropsychologist suggested accommodations and we brought them to the school and they were more than willing to institute them. His teacher also added some accommodations as the year progressed. We did not have an official 504 plan, through the public district, at this time--it was a list of accommodations that we all sort of collaborated on together. The accommodations worked well, but the neuropysh suggested that we go through the process of getting and IEP, mostly for the paper trail. For this I had to write a letter to the public district requesting that ds be referred for and IEP. This is the letter that I can send you. There might be some language that would be helpful?? I can also share any accommodations that might be useful if they are grade or age-appropriate. Last year my ds was 8 and in 2nd grade. For 3rd grade this year I added several things and re-organized the whole list. There are things that aren't really grade-specific that might help too.

Wilma, I am so very happy for you and your daughter!!! I think of you often, and have been hoping that your dd was doing better since starting the bartonella tx. Continued prayers for you both!

Jenbug, I am so very sorry about your mom. My thoughts and prayers are with you and your family. Sending you (((((hugs))))).

Thank you all again!!

Thank you for the replies! I don't know what I would do without this forum My ds goes to a small private school so much of what he has in place already has been because I have asked for it or the school has seen the need for it. The school does not have an OT or SLP, but we have a private OT and SLP. So far his OT has focused on experimenting with weighted pencils and different types of grips. Ds hates all of them. He wants to hold the pencil the way he is used to holding it. He will not use anything like that in the classroom. He will, however, use an angled stand for writing, which helps to stabilize his arms. He has a tremor in his hands and arms so writing is difficult for him, beyond the other motor issues he has. Last school year we developed a list of accommodations that includes things like reduced in-class writing, use of abbreviations when applicable, shortened writing assignments, parents do writing for him at home, school special ed teacher does some writing for him, extra time for tests, tests can be taken orally, use of a scribe for some things like standardized tests. (The "scribe" is a teacher or parent who is able to help.) It would be great to have a scribe for more things, but there is no money for that and the public district will not be offering that--his diagnoses are not severe enough. Towards the end of the year we went through the process of getting an IEP, through the public district. Although I am glad we did it for the paper trail, the end product is not very helpful. There was little that was new, and the things that were new are really not that helpful. The accommodations that he had in place and that we are adding this year are the most helpful. During the IEP process no one suggested an assistive technology evaluation. I will ask the school and see where that leads. It will have to go through the public district again. They did not do and OT evaluation because ds had already had an extensive eval through the private OT. I will ask her about assistive devices also. The Alphasmart came up because this summer he started working with an educational therapist. She would like to see him move into more typing so that writing is less of a burden for him. She's not pushing for him to do his own typing this year, but thought that having access to a laptop or Alphasmart could get him started. She also mentioned using Dragon Speak or other similar programs. I think that would be better for him since typing would also slow down the creative writing process. He does have some typing skills--he takes typing in computer class and they have been working on typing since Kdg--but he is still hunt and peck so no speed demon on the keyboard. I know the school will go along with whatever we want, but it's a matter of figuring out what will be the best fit for him and making it happen. They are more than willing to work with us, but I have to drive the bus and I don't always know where I am going.

I totally don't mean to hijack the thread, but I am wondering if their are additional opinions/thoughts on what one does if one's child is functional, but still has OCD or other PANDAS-related issues that cause problems but not in an extreme way. Perhaps it's something that varies from physician to physician, and then case by case? We too have a child that is functional, but he has not returned to baseline, and that baseline seems to change. So far abx have kept things in check, but we still struggle with nighttime anxiety and adhd issues so we aren't in remission either. Are these things the new normal? Or would more aggressive treatment bring him to a better place? It seems to be a gray area when a child is not suffering in an extreme way, but has issues that cause them problems at home or at school or internally or however those problems manifest for them. How do you know if your child should have more aggressive treatment when they are functional but not "cured" or in remission?? Our dr. looks at IVIG as a last resort of sorts, but I know other physicians view it differently.

We are thinking about buying an Alphasmart for ds who will be entering 3rd grade. He has dysgraphia and dyspraxia, so handwriting is very difficult for him, as is copying from the board and many other related school tasks. I don't know much about them and have not seen one in use. If your child uses one or has used one in the past, what did you think of it? Did they use it at school, or did they resist using it at school because it would make them different from everyone else? Do you or did you have any of the add-on's like Co-Writer and/or Text to Speech? I don't think we are ready for a laptop, but he needs something so that there is not so much writing. TIA!

My ds's sensory issues are most definitely related to/caused by his PANDAS. Before he was dx'ed with PANDAS, he was dx'ed with dyspraxia, which is a motor planning disorder and a sub-form of Sensory Processing Disorder. He also exhibited sensory defensiveness to loud noises, developed some oral input needs, and spun in circles frequently. He was fully evaluated by an OT who specializes in SPD--I highly recommend looking for an OT who specializes in this area. A few months after he started working with the OT he was dx'ed with PANDAS. Right after that he went into his second major PANDAS episode. His sensory needs and motor issues were dramatically more noticeable at this time. After tx with antibiotics his sensory and motor issues improved dramatically. Like others have said, my ds's sensory issues are most apparent when he is in a flare or exacerbation. Working with the OT has greatly helped his motor planning and sequencing, his strength, and his other sensory issues. But I do not believe he would have had this improvement without proper dx and tx of PANDAS. Our insurance pays for some of the OT. I can't recall what diagnosis code she uses, but I know it's a general code. Maybe that makes a difference? Re: the elastic waist issue, we have the same problem, but for another reason. My ds has a tremor in his hands and arms, so doing zippers and buttons can be difficult for him. I don't want him to have to worry about not being able to undo his pants when he is at school, so I have to find pants with an elastic waist. That gets trickier as he gets older (he's almost 9). Lands End has at least a few styles of pants with an elastic waist. There are cargo styles and denim styles too. They are not super dorky--my older ds even wears one of the styles because they work for our uniform code. (If you sign up for Lands End emails they will frequently send you notices of sales and there is always a free shipping code included.The only other place I have found elastic waist pants that come in ds's size and are nice-looking is Children's Place.)

I voted none of the above because it doesn't seem that either graph quite fits. We had no potential prior exacerbation. We had pretty much what PowPow described: "....no prior hint of anything amiss. After inital exacerbation, no complete remission.....So, like graph 2- but no prior issue..." We have had baseline changes with exacerbations.

I am so glad you shared your experience since having PEX. It is wonderful to hear stories of healing. I often think that if my ds needs more intense treatment I would want to opt for PEX so knowing that you are having great results is very encouraging.