thereishope

I'd have her checked. So many on this forum are told that under 3 thing. It is not true! I was told that, I insisted they swab my 2 year old anyway, and her rapid came back +. No sore throat, no fever. Just get it done and rule it out. Untreated strep would not be good. You'd hate to have something occur down the road and always think "if only I had done that strep test ...."

My son has not been on any SRRI's or any other meds besides an antibiotic and one time a 5 day steroid burst. The ped did want to do a quickie diagnosis of bipolar. Needless to say, we are not at that office anymore. After my son's 3rd strep induced PANDAS exacerbation, he seemd like he was doing better ,but the OCD was still there. He was no longer in a PANDAS episode and still scored a 19 on the Yale Brown test. He would have been much, much higher if he was in an actual exacerbation. Anyway, CBT and "talking back to the OCD" didn't work. In his eyes, there was no problem.The OCD didn't botehr him either. How can you get a 5 year old to talk back to OCD when he didn't think he had OCD? But he did do well with me weaning him off his OCD tendencies. I think it was like ERP. It took 2 months, but he overcame all of it. What are her symptoms right now? How old is your daughter again?

Why don't you give Ibruprofen for now. It'll help with his throat and also hopefully fend off any inflammation that may still occur. If he ends up having no PANDAS symptoms, that's great and it's a big deal. Maybe because it's a different strain of strep or because he's had a decent amount of time between episodes? Either way, keep me posted! I hope he feels better soon. ps. I would have the other family members checked for strep. You don't want to end up reinfecting him. Also, change tooth brush, tooth paste, etc.

I often drink while I'm on the computer...does that count? After the kids are in bed, of course. Maybe that explains why I have to go back and edit so many misspellings.

What prompted you to take her for a strep test? Did you see any behavior changes at all, not necessarily OCD, but even just being more emotional? With my son, his behaviors worsened for days after starting antibiotics then they would ever so slowly start to taper off. No matter how fast I caught it, it took months to heal. But then, I guess I never really knew how long he had strep before the behaviors changes started. He doesn't get classic strep symptoms, just PANDAS.Was she on prophylactic antibiotics? Please keep us posted and let us know if any PANDAS type behaviors surface or not surface. I hope they don't.

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I've seen a couple parents post that they wonder if they had/have PANDAS. I'm wondering how many wonder this and why. As for myself, I had tonsilitis over and over again as a child. They stopped testing me for strep, but would give me antibiotics (penicillan) every times my tonsils were covered in spots. I remember having OCD tendencies as a child, I remember misbehaving a lot, not listening, major fights with my mom, even me being physical. Looking back I can't remember how bad I behaved and my mom passed away so I can't ask for details. At one point I was agorophobic. But, I've been tested for strep as an adult and never had a + test. I've had a neurological issue in the past that involved inflammation of the optic nerve. It makes me wonder if that means that I am prone to inflammation problems. Some OCD and OCD spectrum disoders run in my family. My cousin was a strep carrier that never got cleared-her brother has BDD. There are a lot of autoimmune disorders on my mom's side of the family (same side that has the OCD issues). An example is my mom had horrible RA and dermatomyocytis. It just makes me wonder. For awhile I've "just known" that PANDAS comes from my side of the family (not my husband's), but I never quite put the dots together to think that maybe, just maybe, I could have had it myself.

By judging by dcmom's reply, it is the same thing. My son had t and a surgery in Feb this year solely because he had PANDAS and they were hoping to reduce the number of strep infections. PANDAS is his only diagnosis. He had a + strep test a month after surgery. But is now 7 1/2 month strep free. I agree that you need antbiotics for a good amount of time. MY ENT did the standard 3 days after. So make sure you discuss that with your doctor. A psychologist my son briefly saw said she once had a boy who came in for a ADD diagnosis and once they realized he actually had sleep apnea, they removed his tonsils and he he no longer fit the criterea for ADD. He was just overtired all the time from lack of sleep. Does anesthesia affect tics in TS? Someone on here had the idea that the anesthesia could play a role in PANDAS symtoms resurfacing after surgery. I don't know if it affects TS. That's something else to research.

Well, if it comes to the point that you need to be involved, our insurance (United Health Care) said that if they give you approval (we did not get in writing either, but they have notes on each phone call that they can pull up) and you have a procedure done, they are required to pay it. They cannot backtrack once the procedure is complete. Now, if they approve it, then deny it BEFORE the procedure is done, they are not required to fulfill what they said. However, they would be able to deny future procedures (even if they covered it before). I hear you about the economy. Trust me, I hear you....

To clarify, is that the same as having tonsils and adenoids removed or is it something different?

Did you get the approval in writing? At what point did they deny it? I'm not a lawyer, but there was something that happened with our insurance and they kind of explained to us how it worked and how they got away with denying one thing but being responsible for another. Totally not related to PANDAS.

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I think it is our children who will help "determine" if people outgrow PANDAS. Some of these kids are begin diagnosed very early in the onset of this disorder and the families learn how to help keep it in check or treat it early. We are the hope for the future. There are people who have OCD as children and outgrow it (as docs put it). Did these children have undiagosed PANDAS? Maybe. But their OCD is gone now w/o ever going to therapy or being on drugs. There are parents on this forum who now suspect they had PANDAS as a child. And I use the word HAD. Yesterday, I had the lightbulb moment as I repsonded to a post about tonsils. I had tonsilitis a lot as a child. After awhile I didn't get swabbed for strep. But they put me on antibiotics for the tonsilitis (even though it is viral). I also had some childhood OCD and other problems. I wonder if my cousin's BDD may be a result of PANDAS since I have learned his sister was a strep carrier throughout childhood. Autoimmune disorders are rampant in my family.Once I start putting the pieces together, I wonder. Could I have had it? But, now I am ok. Sorry for my rant. I need to believe it will get better. If it doesn't completely go away, it will hopefully not be as bad when they are adults. Right now, I will continue to believe it will be a memory for us. But do so, with doubt, worry, and wonder lingering on the side.

Welcome, Angela I would say 5 days may still be too soon to see improvement. The H1N1 vaccine may prolong seeing improvement. Don't beat yourself up over it When I brought my son to the dr the first time (before knowing he had PANDAS), the rapid came back neg and I okayed FluMist. I didn't know.... Don't do the second round of H1N1 vaccine in a month. Skip it. How long have the behaviorial changes been present? A good website to pass onto to your doctor is www.pandasnetwork.org. There a lot of info for him ( and you) to read up on. And studies to back things up (thanks, Buster).

My neighbor had a kid over that through a terrible meltdown/tantrum when he had to leave. I found myself whispering under my breathe..."I'd get him a strep test". Then I went in and sterilized our bat he touched. I do that too! You're gonna get through this, lady! Things are going to get better! You may even retrieve your sanity!

You are NOT the worst mother! But I can probably talk for many here that we've all had those thoughts now and then. Your family not only has been thrown into the world of not knowing what is going on with your child and tryint to make her better, but doing it with a lot of attention and eyes on you. There's only so much one can take befroe they reach the point of exhaustion and just breaks down. It's okay if that happens. Everyone needs a good cry, but as long as you then come out of it with determination still intact. At some point, try to find the time to write down your questions, and brainstorm anything you remember out of the ordinary about Lauren over the last few months. There may be some small clues there that you may not realize you have. Is she "neater" than usual? Is she going to the bathroom more? Does she seem to have a shorter fuse? Is it harder to calm her down when she's upset? Does she have moments of extreme hyperactivity? Has her eating habits changed? Is she more sensitive to touch or feels more overwhelmed faster? I'm not trying to provide leading questions that may lead to a PANDAS diagnosis, but these are things many may overlook as symptoms. When it's just a couple of things, it easy for a parent to find an "excuse" for it happeneing. I can reason any odd behavior if it's not accompanied by a meltdown. As for sedatives or any other meds, watch her carefully on them. Sometimes, PANDAS kids react different. I know she doesn't have that diagnosis yet, but I want to thow all that stuff out there. Good luck with you appt!

Hopefully it is not strep. When my tonsils get a white spot on it, it's usually food stuck. I know that sounds so gross, but I had tonsilitis a lot as a kid so they are probably scared w/ caverns in them. It can take weeks for it to go away.Anyway, when that happens, it can feel sore. Even my neck and ear can feel affected. So, if the strep test comes back negative, also try to get him to gargle with salt water or eat something like potato chips that might knock the food out. Ibruprofen helps with sore throats too, in addition ot the benefits it has with PANDAS symptoms. Do get a strep test, though. Let us know how the appt goes.

When the virus occurred mid way into recovery after an active strep infection, the behaviors were obvious. His OCD spiked. That occurred while he had the cold. It seemed like when the cold was completely out of his system, the OCD calmed down. Ibruprufen helped A LOT. When he had H1N1, he was completely recovered from his last PANDAS exacerbation for a bit, like maybe 2 months. That setback literally only lasted 2 days and was not a "consistent" setback. Very mild. A non PANDAS parent wouldn't have really though anything of it. That one did not occur until 3 days post fever.

Has she had PANDAS reactions to viruses before? What has that been like? When my son had H1N1, he did have a slight behavior setback after he started to get better from H1N1. Luckily it didn't last long. Hopefully it will be the same for yours. With H1N1, I thoughts my kids were getting better, sent my oldest (non PANDAS) to school and he came back wiped out. I ended up pulling him out of school a little longer to give his body time to rest. As for my PANDAS son, I learned from the oldest and kept him out of school longer (even though he was feeling ok) just to give his body time to heal. If you are waiting to give the steroid until you speak to Latimer, I would suggest Ibruprofen for now. Try to nip any inflammation in the bud. Try to get her to bed early. If she's wiped out from school, maybe it would be best to skip the riding tonight. Also, even though the office is closed today, at least put an email into Latimer. Perhaps he read them on her days off, she'll be briefed on her status, and she will know to be waiting for a call from you.

Glad to hear he's on the road to recovery! Target and Walmart has made a lot of money off of me and PANDAS. He had a clothing thing too. I would then take what he was willing to wear and but a lot of it. I was also careful to take the tags off carefully so I could reattach them if I realized he wouldn't wear that too so I could return it. Such small things any other parent would overlook becomes a milestone. He wore short sleeves, he wore a picture on his short, he put grapes in the bowl with the apples (my son did that yesterday). Keep us posted! Vickie

You're going to hate my answer. For me, a lot was instinct. I'm sorry! I guess you can say if it was during the beginning stages of an exacerbation, I'd give him a few days before I really began to worry. 3 days was my personal cutoff. Setbacks and bumps in the road are to be expected, but not spiralling downward. I'd have to take a step back and look at what had happened over the previous days. Did he get enough sleep, is he stressed, is he fighting a virus, is anyone else in the family sick? When recovery was nearing a tailend (he was more himself than not himself), you quickly learn what an "expected" setback is vs a new PANDAS exacerbation. In that moment of a full fledge PANDAS moment, you're memory floods back and you "just know". When that happened, as he had a meltdown, I too just stopped in my tracks and cried. I knew it had returned. I believe DAN stands for Defeat Autism Now. Even if your child is not autistic, DAN doctors seem to "get it". It is something to look into if you can't find a doctor in your area or as another person in additon to your neurologist, ped, etc to help guide you to a full recovery. Have you given Ibruprofen to try to help ease symptoms?

I should add that my son had 3 additional setbacks not caused by strep. One was decent sized that was caused by allergies. One "medium" caused by a cold. Both of those were shortly into the healing process. Even so, they did not last long. Once the virus and allergy was under control, the PANDAS stabilized. Now, a few weeks ago he had H1N1. He had only 2 blips in behavior lasted only a couple moments! And that was w/ a 105 fever! Both my husband and myself agreed it was clearly a PANADS blip, but it was so minute that any other non PANDAS parent would not be concerned. I believe it was minor becasue it has been awhile since he had strep or a mjor illness. So that gave me hope, but I still have nervousness and fear.

Well, for my son, we were very lucky that we figured out he had strep rather quickly. Let me add, he does not get classic strep symptoms. For episode # 1, we found out about 2 weeks after OCD began and behaviors changed that he had strep. The dr did a strep test on a whim because she once read about PANDAS. Rapid was neg, culture was +. By the 2 months mark, he was about 90% himself when his behaviors took a horrible backslide. We took him for another strep test. It was +. Let me add, to my knowledge this was a separate strep infection. We took him for a follow up strep test after epsiode #1. Episode #2. Again we found out rather quickly he had strep again, but he was not fully healed from episode #1. He was very bad off. It was with this episode he got the steroid. I totally understand hesitation with giving your child a steroid. With my son, I think it was his saving grace with that epsiode. It took about 2 1/2 or 3 months for him to get to 100% himself. Epsiode #3. This one occurred about 2 months after he healed from episode # 2.PANDAS symptoms were not as bad as episode #2. Again, I believe we caught the strep pretty fast. I thought recovery was going to be faster, but it wasn't. This time he ended up having residual OCD we had to tackle. Still, total time of recovery was about 5 months. Currently, he is 100% himself. He has been strep free for 7 1/2 months now. I admit as I read through this forum, I am amazed my son has improved the way he has. His PANDAS symptoms get bad, yet with time he gets better. I know I am blessed.

How does Lauren feel about all this exposure and the possibility of more? I agree with EAMom, if she's up to it, do it. But also don't pack too much in, stress can sometimes worsen symptoms. Maybe talk to them about doing a one on one with her w/o an audience so she's not too overwhelmed.

My son used only antibiotics for all 3 strep induced exacerabtions. With the exception of episdoe #3 where he did recieve a 5 day steroid. It's interesting becasue when I went htrough all 3 episodes, I was not part of this forum. I didn't reallly know anything about IVIG. If I had joined this forum as soon as he had his first PANDAS episode, I have a feeling I may have eventually started to search out IVIG. However, I did not and my son eventually got better with each exacerbation. I know this is not the case for all PANDAS children. He had severe OCD, ODD, separation anxiety, agorophobia, eating probelms, sensory problems, etc. But as I sit here today, he is well, but I know he may get sick again. I will never rule out other procedures just because antibiotics worked in the past. But I am happy to know that for my son, he may get better with them and I need to give his body and brain time to heal.