thereishope

I already sent a brief thank you yesterday:)

When I read your post, I thought "what if they are allergic to mold?". Even though mold can lead to problems, if someone is allergic to mold and constantly surrounded by it, that would also worsen any pre-existing disorder, if it should be present. this would also explain why your children improved now that they are out of the house. you say you do not have documented strep, however, ear infection and sinus infections can becaused by strep. Also, how often were they actually swabbed for strep earleir in life? So many PANDAS kdis do not get symtpoms of strep taht they may have had and you simply had no idea and no one really saw a reason to test. As the other have said, there is no test for PANDAS, so your doctor was mistaken. Also, there an be other things causing the symptoms. It is not uncommon to have more than one child with PANDAS either, so don't let that convince you not to look into it.

Thank you for posting this!

I answered these as I see it in my son.... 1.....a,c,d 2.Hm. I want to say if you catch even the "big one" aka strep early, it can still get bad and take awhile to recover. This is what I saw in my son. I caught exacerbation #2 and 3 within a day of onset. He still got bad. However, if it is viral, stress, allergy, you can help it by catching it quick and helping the body with supplements, ibuprofen, etc. 3.Can you explain "nature of challenge" one more? I think flares will be worse earlier in recovery or back to back assaults on the immune system even if only viral. Also, for my child, flares I think was part of the recovery process too. It's like the brain was going in so many different directions. He would have an unexplained flare just to recover from it w/o medical intervention and at times once he recovered from the flare, he'd actually be better than he was prior to the flare (he'd still be suffering from the exacerbation but a few steps forward in recovery).

I'd like to see it too, but I don't like spending money when I don't know what I'm getting:) I checked my library system and they don't have it. Maybe if I find myself at a Borders or something, I'll see if they have it.

Was there anything else that would indicate not PANDAS? My son had no tics, no chorea movements, handwriting and drawing was always perfect. Never affected. He was even observed for an hour by someone who leads a TS clinic. They saw no tics or motor problems either. If that's the only reason to possibly dismiss it...that concerns me.

I just say my throat has been hurting and my child has strep. They'll give you a strep test. But you may have to ssk them to run a culture if the rapid is negative. Each adult office is different whether they automatically culture on adults. My husband's rapid has come back negative, just to have culture come back positive. Defintely culture it, if rapid is negative.

Thanks, Ozimum! Yes, I have seen that. Some wonder if it is replication study of the Columbia mouse study http://www.mailman.columbia.edu/news/antibodies-strep-throat-bacteria-linked-obsessive-compulsive-disorder-mice We'll find out!

http://www.foxnews.com/health/2010/11/08/strep-throat-cause-obsessive-compulsive-disorder/ "For years, researchers have wondered about a connection between children getting strep throat and later showing symptomsof obsessive-compulsive disorder (OCD). Obsessive-compulsive disorder is a frequently debilitating condition affecting millions of Americans in which those afflicted think repetitive thoughts they don’t want to or perform compulsive, ritualistic behaviors they wish they didn’t have to—like washing their hands many, many times (sometimes until they bleed) or repeatedly checking a light switch to make sure it is off (even if they have to do so for an hour). The thinking has been that strep throat bacteria trigger the production of antibodies that end up not only targeting strep, but “mistakenly” acting on an enzyme in the brain, which is involved in making brain chemical messengers. In so doing, the antibodies to the strep throat infection pathologically alter the balance of these chemical messengers. Now, Israeli researchers have taken the theory one step further. A team at Tel Aviv University has created a lab model of how the process works. They take rats and expose them to strep bacteria and compare them to another group of rats who are not exposed to the bacteria. The ones exposed to the bacteria do indeed develop antibodies to the strep and high levels of those antibodies are, in fact, found bound to particular receptors in their brains. What’s more, these strep-exposed mice show compulsive behaviors like repeatedly and senselessly grooming themselves. Sounds a lot like repeatedly and senselessly washing one’s hands, right? So, it is increasingly looking as though being infected by strep (as in, getting strep throat that isn’t very promptly treated) may be one significant reason people develop OCD. This is a stunning possibility, not only because of its implication for folks with that single condition, but because other conditions mimic OCD in many of their features—including autism. For now, I would recommend routinely testing children for strep throat. Certainly, that would mean testing them with throat cultures whenever they have sore throats. Yes, whenever. Every time. But I also advise having throat cultures done a few times during the winter months just to do it. Many children exposed to strep (and infected by it) do not complain of a sore throat. I also suggest that any parent of a child suffering with OCD have a blood test done designed to detect strep antibody levels in the bloodstream and consider having the fluid that bathes the spinal cord tested for these antibodies. If high levels are found, that may argue for vigorous treatment with antibiotics to drop those levels. This is one time when getting aggressive with antibiotics makes all the sense in the world. Because the possibility of saving a person from OCD is worth the trouble and will actually save lots of suffering (not to mention, lots of money), in the long run. Dr. Keith Ablow is a psychiatry correspondent for Fox News Channel and a New York Times best-selling author. His book, “Living the Truth: Transform Your Life Through the Power of Insight and Honesty” has launched a self-help movement. Dr. Ablow can be reached at info@keithablow.com."

Unfortunately, penicillin and amoxicillin has a high failure rate in clearing strep throat. http://www.entrepreneur.com/tradejournals/article/169459644.html Since she's been off antibiotics for only a week, she could run a FALSE negative strep test right now. If you want to take her in for a follow up now since her tics are worse, you can do so and remind them of whne she finished meds or tell the doctor you don't believe the penicillin cleared it and ask for something like Augmentin or Zithromax to clear it. You do run the chance of a false negative strep test if you are on antibiotics or up to 3 weeks after taking antibiotics. That's why many will suggest waiting the 3 weeks to retest. however, if her tics are worsening, I wouldn't wait. 3 weeks w/o meds for strep for a possible PANDAS child isn't good. She can just continue to worsen.

I just emailed you my email address. Please let us know how we can help!

I stumbled on this book that was written by a PANDAS mom, but I have NOT bought it.I have NOT read it. Here's the website for the book http://www.youareagreatkid.com/ The website refers to mental illness, something I would NEVER do for PANDAS, so I do not know if they use that phrase in the book. Otherwise, I have used phrases like "Do you have yucky thoughts". This won't help for a book, but when my son would have internal fights with bad thoughts or OCD, I would sometimes have him yell out loud to his brain to stop messing with him. If he said the thoughts weren't letting him, I would then warn him that I am not about to yell at him but yell at the thoughts. I would stoop down to his level, look at his forehead and tell those thoughts to leave my boy alone! I'd yell that they are not allowed to scare him. This didn't always work, but sometimes it did. It is very improtant to keep explaining you are not yelling at them, but those thoughts.

It's just a standard rule in my house. One has strep, we all go in. And, I don't have copays. I have coinsurance. So, about $150 a person for an office visit and strep test. We're a family of 5. But, I need to do it for my sanity and to try my hardest to keep my son healthy.

Welcome. Did she have any symptoms of the throat infection when you took her in? She may have had it for a lot longer than you think. How long ago did you catch the strep and what antibiotics was she put on? All family members should get tested too, even if they do not symptoms of strep. This will help prevent reinfection of your daughter and exposure alone can worsen symptoms. After finishin the prescription, a follow up strep test should be performed 3 weeks later if rapid is negative, run a culture, Here is some "starter info" for you to look at. If you feel you need more studies/articles to pass on, I can post that as well. I think what needs to be said to them is that your little girl can worsen if this isn't dealt with. More problems in addition to tics can arrise. Avoidance will not make it go away. PANDAS Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265 PANDAS FAQ http://www.latitudes.org/forums/index.php?showtopic=6266

It's mixed feelings, isn't it. So many suffering kids, so many parents feeling lost and beaten down and now a new "generation" emerging that may have an easier climb and kids that won't have to go through everything all of ours did. Optimistic for the future, still pain when looking at the past.

First, glad the meeting went well. Second, could it be that he isn't rebounding in his usual 2-3 days because he is such close proximity to it, that it is in his own household? When it's been the 2-3 day setback, was it usual in response to someone being sick in school? I would think the setback would be more severe if the exposure is in the home. What did the doc give for the impetigo? Did any ilness proceed the impetigo whether it be hand foot mouth, a cold? Do you think she may have caught it at the jumping place you had the party at? I'm sorry you're going through this!

Wow, that's a fast turn around for getting an appt for surgery. They mean business! I hope surgery helps and stops the strep problems and whatever other issues you may be having with such a swollen tonsil. They can affect your ears, night time breathing, etc.

Well, I'm glad you found that out! What finally prompted you to take the 4 year old to the doctor?

Thank you for the update. I appreciate when people share what their kids say and how they express their feelings and thoughts. It helps me learn ways to ask my son's questions if I ever worry about him. Good luck with the upcoming IVIG!

For some reason I'm having trouble with the link. JAG, my son has two prominent cowlicks. They spiral to a meeting point and make him look like he has a shark fin or something on the top of his head. But he's learned to like it and hates when I cut his hair. "Mommy, my point is gone. I want it back!". At least he's not self conscious:)

Thank you for updating! I hope your family continues to see great improvements.

I'm glad it went well! Let him eat what he wants. My son was eating chicken nuggets hours after surgery. The ENT said the less they baby their throat, the easier and faster they will recover. My son recovered very fast. About a near week past surgery he did start to say that area was a little sore and we had to start the pain meds again (he rarely took pain meds immediately post surgery).

Yep. Marshmallows are bad. White marshmallows have blue food dye (except for generic Walmart). My husband says it makes the whiter brighter. Also, the FDA does not regulate the word "natural" on foods so anyone can put the word natural on it regardless of ingredients. As for rolls, they now carry Pillsbury "Simply" rolls. I buy the Simply cookies and they're good too. It's nice to have on hand when you just don't feel like making things from scratch.

Thank you for the update! I'm glad to hear that he responds to the treatment and what seems very quickly! I'm also glad to hear he lives a good, full life. You've done a wonderful job. You're a great Mom!

Bumping. I know we have some in this area. Maybe they'll check the forum over the weekend.