thereishope

Thank you for the update. I'm glad the sneezing tic is resolved. I hope, like you said, the second IVIG resolves everything else. Keep up posted!You're doing a great job.

PITAND-Pediatric Infection Triggered Autoimmune Neuropsychiatric Disorder ........... See how that acronym is more generalized? So, that means an infection, like Mycoplasma, caused the same reaction as strep does in PANDAS kids, but the original, main trigger was different. Sometimes, people will use the acronyms interchangably. So, even though Mycoplasma might have been the main, original trigger the child will still be referred to as PANDAS. The acronymn PANDAS is just more known. The thing with Mycoplasma, as I'm sure you know since he gets it so often, is that some meds (like Augmentin) that kids take for strep won't work for Mycoplasma. I have read that IVIG should help with Mycoplasma P as well. It's confusing at first,but in time it will make sense. Hello vickie No my son is not on anything right now...we are supposed to do a blood test next (right now testing for strep and Lyme). My son has had mycoplasma pneumonia yearly since he was hospitalized at 10 months old (he is currently 8). Dr. K told me that only speculation exists currently with the connection of mycoplasma p and Pandas...so I am still a bit confused since he mentions PITAND on his website...can anyone help out there to clarify?? Thank you!!

My son had a 5 day steroid burst for his second strep triggered exacerbation. On day 4 (when 3 doses were completely in his system) I saw improvement. I see by another thread that your child tested + for Mycoplasma. I don't know if a steroid would have a different timeline for that. Is your child on antibiotics for Mycoplasma right now (like Zithromax or Biaxin)? What antibiotic is your child on while on the steroid?

Unfortunatley, amoxicillin being successful in PANDAS kids is rare. The most successful meds are Augmentin and Zithromax. So, if your child had strep at the beginning of this, there a chance that it didn't completely clear. I really suggest getting a strep test elsewhere that is local (if your ped won't do it) while you wait for an appt a few month out. If your child still has strep, you can't let it simmer and worsen. You can get an appt with another ped probably within a week and you usually don't have to switch all records for an appt unless it is an appt that you would want immunization shots at. As for SSRI's, they're tricky. Some PANDAS kids do not react well to SSRI's, but the doctor sees the failure of the SSRI as a reason to just increase the SSRI dosage, add another, or change it. Sometimes if the child initially improves on the SSRI but then declines, the parent needs to look at the timeline. Could the improvemnt been because of antibiotics and not the SSRI and now the SSRI is causing more harm than good? It gets very complicated. I am not saying to take your child off of any meds, but just informing you. To quote the PANDAS Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265 With Augmentin, next time you can request Augmentin XR. That may be easier on the tummy.

Welcome. Like others have said, strep can be in numerous places...the throat, the gut, sinuses, ear infections, peri anal strep, strep on the skin. It's ridiculous. Then there's PITAND. Let's say PITAND is like the parent of PANDAS. PITAND is catagorized as a general "infection triggered". PANDAS specifically says strep. Mycoplasma P specifically has been linked as the main and original trigger of some PITAND kids on here. Then there's Lyme, it doesn't hurt to rule out Lyme with your son since sometimes you never see the tick or the bite. I don't think you could have passed anything onto your son (if it was induced by Lyme) unless you were bit while you were pregnant when you contracted Lyme. Is your child on antibiotics right now?

You can do 2 things. Pull up her topics by clicking on her name in the thread or you can send her a message asking and a notification of that will be sent to her email.

Here's Tracy's thread... http://www.latitudes.org/forums/index.php?...amp;hl=tracyree

I was asking about the strep symptoms to fish around if maybe it could be the strain. Now, I remember there being a poster TracyRee that asked this same question once. Her son tested + w/o PANDAS symptoms and she was asking when the PANDAS symptoms would surface. But I cannot remember if they ever surfaced or the timeline. I'll try to pull up her post. My guess is his BBB is in good shape or it's the strain. Either way, great news!!!!!!!!!!!!!!!!!

If you do IVIG, you at least have a chance that your child will not be exposed again or that the BBB will be closed when they are. Also, if your child can fully recover and stay recovered for a decent amount of time in between exacerbations with the help of IVIG, then another exacerbation post IVIG (if it should occur) hopefully won't be as bad. If it's the strain of strep that caused this all to start, hopefully your child won't be exposed to that nasty strain again. If the root of the problem isn't addresed and your child is technically allowed to stay in an exacerbation that is just covered up with the band aid of an SSRI (which actually worsens some PANDAS kids in the first place), then over time they may contract strep again and they can really be sent over the edge. Not all exacerbations are the same and subsequent ones can be worse and be even harder to overcome. Some have experienced a new exacerbation while recovering from a past one (my son included).It can get get very bad and very scary.

Welcome to posting. When he had previous strep infections (except for the rash), did he always get classic symptoms like a sore throat and fever like he did with this past one? For my son, so far his PANDAS symptoms have been the signal that he has strep since he does not get a sore throat or fever. So, I suppose I don't really know how long he had strep for before PANDAS kicks in. Also, I suppose if my son continues to be asymptomatic with strep, he could in theory, have strep w/o PANDAS and I would never know. I would bring all family members in for strep tests right now. Make sure no one will reinfect him. Let's hope all stay well in your home! Please keep us updated on this!

Yes, you need to space out the probiotics and the antibiotics. I want to say around 2-3 hours apart.

AN-Anorexia Nervosa PDD NOS-Pervasive Developmental Disorder - Not Otherwise Specified Dr T- Dr Triffileti Dr K- Dr. Kovacevic Dr L- Dr Latimer Dr B - Dr Bouboulis

http://www.oumedicine.com/body.cfm?id=4281 The quotes used are by Dr Cunningham, who is doing currently doing research in PANDAS. In this article she discusses molecular mimicry. It states PANDAS is discussed near the end of the article. She goes on to say,

Yep. there's always going to be subcatagories to subcatagories and exceptions. My son doesn't get the symptoms, but will test positive so that puts a wrentch into this theory....

He's 5, right? My son's seasonal allergies slowly started creeping up around age 3 or 4, but they were very slight. I even have written on past calendars in a certain month....allergies? (added a question mark since we weren't sure). But, when he turned 5 years old, last year, his seasonal allergies took full effect for the first time. So, there is a chance, you are witnessing his first real year of seasonal allergies. I am not saying this is definietly the case, but it is something to keep an eye on.

Okay. I am so not the science type so I really hope I don't come off as sounding stupid. Thinking out loud... If your immune system is hyper, it really kicked in when your child had strep. Those numerous antibodies from a hyper immune system really do a number on the child. When your child went on antibiotics it slowed down the bacteria and, in turn, the immune system (which was already going crazy) killed the strep. So, now the antibodies did their job and they can start to lower. That's when you see improvement in PANDAS symptoms. Those with a weak immune system or immune deficient....their body isn't used to really mounting an good attack. They get strep, they go on antibiotics. Again, the antibiotics slow down the reproducton of bacteria but that immune system STILL isn't strong enough to kill off the strep entirely. So the strep lingers and the antibodies stay to continue to try to kill it and they don't get a chance to begin to lower. So, since those antibodies remain in production, the PANDAS symptoms remain.

Here's what antibiotics actually do, as explained by Buster.... http://www.latitudes.org/forums/index.php?showtopic=5520 If your son was reacting to being surrounded by strep, without actually getting it himself, right now you have to try to keep his immune system calm so the antibodies can start to calm down. Keep allergies in check, make sure no one in the house is sick. etc. That will hopefully help, but I can't promise it either.

Ibuprofen sometimes helps, sometimes doesn't. For my son, when it did help, it took 1/2 hour to kick in. Make sure you are dosing it appropriately and contact the pediatrican to find out the maximum you can give him. Sometimes, depending on where they fall in the weight range, the dose can be more than instructed on the box. Also, if you increased antibiotics, did you increase probiotics? Make sure you keep up with those. Also, give Omega 3's. Vickie, Thanks for your help. I did try one dose of Ibuprofen and it did not help... do you have to give a couple doses for a response? I really don't think he has strep but is just reacting to it. We took Azith in the past for a couple of months and it did not control his symptoms. I am just confused that if his antibodies are up, is it time more than the increased Augmentin dose that will make the difference? Thanks for your response.

Whenever you post something on a thread it gets "bounced up" on the list of threads on the main page. So, by posting something, anything (sometime people do just a dot), it gets put back to the top of threads to view and a whole bunch of new peoplemay see it. Otherwise, no responses mean it gets buried amongst threads and some people may not see it. what does that mean?? Thanks for your help!!!!! (bouncing this up)

I'm sorry things have worsened. If he is worsening from exposure and he didn't contract strep, his antibodies might have started to mount for a possible attack and now you have to wait for them to calm down. If you think he may have contracted strep, then talk to your doctor about switching to Azith. You could bring him in for a throat swab, but you also run the chance fo a false negative since he is taking abx. Have you tried giving him Ibuprofen in hopes of just easing the symptoms?

I'm sorry. It doesn't seem fair when you have enough going on to have more stress put on you, does it? First, a low ASO can still be PANDAS. So, you don't have to say that your child "isn't technically PANDAS". Titers are not a diganostic test. Have you tried a steroid burst yet? If so, how did she respond to it?If she had a good response, talk to the doctor about giving her another one in hopes that she has the IVIG when she is having some improvement from the steroid burst.

Ooohh. Thank you for telling me that. I misunderstood. You can split them, as long as you take both halves at the same time (one right after the other). Splitting them to cut the dosage in half is what you should not do.

I wish they did complain. I have to interrogate them about possible symptoms! Then the response is always..."I don't know". Makes me want to scream.Well, except for the 3 year old. She wants to go to the doctor so she can get a sticker. She'll gladly get her throat swabbed for a sticker.She's weird.

No suggestions since all my kids still take liquid (even the 9 year old). But..someone did post before not to split/cut Augmentin.Their pharmacist mentioned something about affecting the time release.

Well, if you have had that swelling for so long, to you it's just life. You don't even realize that you're not suppose to feel like that and you eventually may become accustomed to it, especially in a child. So, the child would not tell the parent that soemthing is wrong becasue they themself wouldn't know it. My 3 and 6 year old probably wouldn't tell me that they have a headache or that they feel congested.