Stephanie2

My 2 PANDAS boys were each BF for one year.

also want to add that when my son was 4 he received his very last vaccine, polio, which triggered his worst pandas exacerbation yet (not to mention the worst croup attack I have ever witnessed - had to throw both small children in the car at midnight, husband wasn't home, son was barely breathing...drove 80 mph through several residential neighborhoods to get to the ER). took 1.5 years to pull him out, which brings us to now - he is 5.5. I will admit, could have been coincidence, as he did not get a strep test at the time, but that was the shot that put the nail in the coffin of my decision to stop all vaccines for both kids.

I have opted not to vaccinate either of my boys b/c they both displayed early signs of autism. But the thing I wanted to mention is that I don't see why you can't "pick and choose" when it comes to exemption. The exemption is something that you get through the state health dept. then you turn it into the school. At your ped's office, you get the shots and they don't have to know anything about what you turn into the school. Are you concerned that the state will compare your shot records to your exemption? If that is the case then I would go get the shot(s) and then go get the exemption. I don't think there has to be any time period between the last shot and the exemption. Just some thoughts...

By the way Michael, I understand that you are too far away, but are you also saying that you don't want to expose the group to lyme/strep? I don't think that lyme is contagious and also I doubt you have an active strep infection that is contagious. I will have to ask the group about these things b/c I know there is a mom who was hesitant to come b/c her strep titers were elevated and she did not want to give anyone strep. But that doesn't necessarily mean she has an active strep infection. I mean if we were to make sure that every one of us is in perfect health, then none of us would be able to get together!! LOL! Yes, I can see where we wouldn't necessarily want to sit across from someone who has an active strep throat infection!! Oh, I am thinking about doing the next meeting in Tampa as there seems to be a handful of pandas parents there. I have been in contact with Tanya Murphy and my cousin works at All Children's organizing events. I may try to get a meeting going at the hospital. If you want, PM me with your email address so I can keep you in the loop!

You have a scientific question and this is not necessarily a scientific answer (as this relationship, MTHFR and PANDAS, in not backed by "direct" data) but I am under the impression that if you have the MTHFR gene mutation then you are more at-risk for pandas, among other developmental disorders, as a child. And I hope that my kids' practitioner is not reading this right now b/c I will probably butcher this explanation (LOL!): The kids with the MTHFR mutation are more at-risk for vaccine injury, namely a shift from TH1 (proper immune response) to TH2 (autoimmune response...allergies, eczema, asthma, pandas, food allergies, the list goes on and on). Since the vaccines are increasing in number, the damage is becoming more widespread throughout the population (ie...increase in developmental disorders - autism, adhd, tourettes, ocd, etc..) Not saying that what you discovered about yourself doesn't play a part, just giving you my overall impression of what went wrong with my boys. My son tested positive for the MTHFR gene mutation, we assume that my other son has it as well.

No location yet, I will be sending out an email soon...

The only thing I can think of is to give ibuprofen to take the edge off (for my kids it works wonders). The other thing I would do if my abx supply got cut off is to use some heavy duty, broad-spectrum herbs. I rotate the following 3 with my kids (on top of their high-dose abx): Biocidin (very potent herbal blend), olive leaf extract, oil of oregano. I have pulled both of my boys out of exacerbation on these alone at times. If you want info on what dose/brand, PM me. Best of luck, sounds like your family is in crisis...not fun :-(

I am also facilitating a pandas support group in florida. our first meeting is in vero beach, sat., aug. 7th at 1 pm. If you are not already on my email distribution list and would like to be added, PM me with your email address! I will not be attending the one in orlando, although I wish I could...

This really caught my attention b/c when my 2 year old had his first PANDAS exacerbation (didn't know it at first), he presented with opsoclonus-myoclonus of the eyes. The neurologist recommended that we have a CAT scan done to check for neuroblastoma (that was a fun thought - NOT). I got a second opinion, but by then the eye movements were starting to diminish (and so was the irritability). My mommy instinct told me that it was not neuroblastoma and we opted not to have the cat scan done. Later to find out that he tested positive for strep that very week that I originally brought him to the neuro. Didn't put two and two together until later on.

I just recently explained to my 5 year old that his sounds/movements are tics. I just felt it was the right time so that he could start explaining this to people who question him. I am hoping that he can matter of factly say, "what I am doing is a tic and I can't help it". As far as the non-believing teacher is concerned, I would just use the word "Tourettes" instead of "PANDAS". Seems to be taken better...

ditto...what kimballot said :-) I am so jealous - I will not be there. Wishing you all a wonderful time full of information and friendship! Please post and let us know how things go!

Amber, sorry things have been so rough with the PANDAS symptoms, but I also know how huge it is to get the kids pooping and sleeping - hooray for that! Anyway, you know who I'm going to suggest

bumping this up

The following link is for the newly formed PANDASresourcenetwork.org. This website has information for parents and people working in the medical community, as well as researchers. There are several top PANDAS health care practitioners and researchers affilliated with this site. Keep checking back, as there are plans to renovate and expand this website in the near future. Also, you can become a member of this organization so that we can contact you in the future. I have recently started volunteering for this organization and we are looking for more volunteers! PANDASresourcenetwork.org

In my boys they get the wide/wild eyes when they are in exacerbation and really stressed. The look panicked and scared and pissed all at the same time. Hope that paints a picture

Yes, he has been a little sick (mild congestion, sneezing and today seemed like he had a fever but he was so out of control I couldn't get a temp so just gave more ibuprofen and tenex). Yesterday it was looking like he had a combination of yeast and also pandas (giggles, hyper, crazy tics, lack of focus). So I gave him some ketoconozole. this morning it seemed like the yeast was better, but he was acting really strange like he was in outer space somewhere. Hitting himself on the head, CRAZY tics, you name it. So then I decided that I need to switch his abx to see what happens. I switched it this am, and by this afternoon his tics are GONE, but he was really volatile. So now I am thinking that the new abx is helping the pandas, but maybe he has bacteria in the gut (causes aggression in my boys) and maybe I need to add on some vanco. Here's the thing about calling our DAN practitioner...I have a face-to-face scheduled with him on Thursday so I am trying to avoid calling him before then b/c then I will have to pay out of pocket for the phone consult, but if I wait until thursday ins will cover. If he is not better by the morning then I am sure i will cave and beg his nurse to GET HIM ON THE PHONE! Oh, I am thinking about doing a steroid taper with him before school starts, but I have to figure out if he has gut bacteria b/c the steroid taper will really do a number on his gut. And no I haven't consulted with Dr. K b/c he can't help me with the yeast / bacteria which can be a real prob in my house. I think it is going to come down to IVIG pretty soon cuz I gotta get him off the high dose abx... I was proud of myself tonight, I didn't call my husband in a panic begging him to come home. I just dealt with the situation calmly and now he is passed out on his bed in his clothes b/c he is not used to tenex...it knocked him out cold (love that!) LOL! Hey trust me if I don't laugh I will cry...and cry...and cry! All I can say is, THANK GOD my 2 year old had a good day, cuz the double exacerbation is a nightmare, especially since my husband works a lot!

So, my 2 yo has been uncontrolled lately, but my 5 yo has been under control for the most part for several months (after doing IVIG and several other interventions). In the past few days it's like PANDAS left one body and entered the other!! How maddening!! LOL! If I could just get a month where the both get a break, I'd love it! DS2 is doing well, OCD/separation anxiety is down by 90% after a steroid taper and adding LDN. Now my DS5's tics and adhd have exploded in the last couple days! Today I had to give him ibuprofen, tenex and switched him from azith to augmentin...hoping for a quick turnaround. It's funny, up until a few months ago it seems like they would exacerbate together, but now it seems like they take turns!! Well, I guess it's less overwhelming that way. Does anyone else's kids do this? (oh and my 2 yo was copying my 5yo's tics this morning! he had it so down pat that i was scared they were actual tics!) Stephanie

Hi M SLP uses this for parent info before we do a video swallow maybe it helps or since you're so well read and so well researched you may already have seen this. We use a syringe/dropper to push food in to the back of the mouth or try positions and other tricks. Some work, some don't. The barium is the tricky part. http://www.chkd.org/documents/radiology/VideoSwallow.pdf Jodie Jodie, thanks for passing this along - very helpful to know what to expect. Luckily he takes many supplements/meds each day via syringe (some which are downright nasty!), so he shouldn't really have a hard time with the barium.

We do not have a specific location yet. If you are interested in attending, please email me so I can update you with location, etc...

I believe it happened like this for peglem. She said at 1:00 pm one day her daughter began to normalize...maybe she will chime in with more details.

Here is a paper our DAN practitioner wrote regarding the use of spironolactone in autism. He also uses it in kids who's inflammation markers come back elevated, including PANDAS kids. It is also immunomodulatory and I believe is an aldosterone antagonist (I have definitely seen much less "playing with himself" stuff since adding it on...now he only does that when he gets yeast). I believe that spironolactone has definitely raised our pandas baseline for both kids. One of our keepers... http://www.icdrc.org/documents/Bradstreet%...thor%20Copy.pdf

I don't have an answer to your question, but "intoxicated, silly, goofy, pleasure-driven, etc." is ALWAYS the result of yeast for my boys. A good antifungal might be exactly what she needs...

Thank you Cheri, I just joined that forum (yay, another way to kill time I don't have!!). With both boys having pandas i just haven't had time to do the chiari research, guess I gotta get on the ball...

OK, so my son's hernia surgery did not work out b/c at the last minute it was brought to the attention of the anesthesiologist that my son has Chiari so she refused to operate on him at the outpatient unit of the hospital, at a hospital that doesn't have a level 3 neonatal unit nonetheless. I was disappointed but then I though "duh", why didn't I think of that, and more importantly, why didn't the surgeon think of that at the pre-op appt!!?? I had to arrange for care for my other child, my husband had to take the day off, my son had to fast and skip meds, etc... He was in his surgical gown for gosh sakes!! Anyway, so we decided to go to a surgeon in Miami (there comes a time when you decide that the local docs just don't know how to handle your kids and that time has come for me...can't even get a good blood draw around here!). I am trying to arrange for my son to have the hernia surgery back to back with an extensive MRI (since he always wakes up with the chloral hydrate) under gen anes. Pediatrician (who happens to have chiari, went years undiagnosed, developed syrinx, had decompression surgery - most invasive of the three) wants us to bring him to a neurosurgeon in Chicago who specializes in chiari surgery and she thinks i should consult wih Dr. K while I am up there to see if he has any feedback about the overlap of pandas and chiari. I would think the only way he would know anything about the two is if he has had several patients who had both. maybe i will email him. In the meantime I have an appt with Scott Smith next week and I will "pick his brain" (no pun intended) about what he thinks (he says he has a handful of chiari kids, maybe some of them have pandas too). BTW, the ped wants me to have a video swallow study done with a speech pathologist to see what is going on with the feeding issue. Can anyone give me some details about this study? She said they have the child swallow different textures, etc. Well if he is refusing to eat how will they do that? I am one busy mommy now... I thought that I would always avoid this surgery at all costs, but to see my son suffer every day these days - it really is getting to me and I think that if it were me I would have the surgery done right away...i am not one to enjoy chronic pain. But I am so scared for his little life and for complications that could ensue... Thank you so much for all of your replies and I am going to have my husband read all of these posts.

All I can say is HOLY COW, you are a well-informed group of ladies!! I am going to come back to this later - gotta go get my son. My head is spinning just from skimming those posts!!