thereishope

For some reason my PANDAS son and my older son like to put tooth brush covers on their tooth brushes. I can see someone saying that will breed bacteria, but if you wash those pretty frequently, I don't see how much trouble it would cause. Anyway, it keeps tooth brushes from touching each other. If you microwave a toothbrush, I would make sure the bristles are pretty wet. You may be able to boil the toothbrush to kill bacteria. But if you're going to go through all of that, I'd just buy replacement ones. Also, do you think it's okay to microwave the plastic? I mean, you don't ingest it, but I keep thinking how you're not suppose to eat food that has been microwaved in a plastic conatiner.

My son still got dark circles post t and a when he was in another exacerbation. Ask about a possible sinus infection being hidden too if you see any puffiness by the eyes along with the darkness.

It would be hard for me to correlate how he does in school now vs his t and a since he had another strep triggered excaerbation a month after t and a. His surgery was Feb 2009. he is doing well in school now but he is also recovered from his exacerbation. If your child had t and a for apnea. I can see how school performance would improve post surgery.

Do you have a HEPA filter for your house? Also, if you have carpeting, if you have an older vacuum, consider replacing it with anewer one. They now make them with HEPA filters built in. That's suppose to be really good for dust mites. Also, consider having your heating ducts cleaned. It's gross how much fecal matter the dust mites leave in them. I don't mean to repeat myself on threads, but dust mites was something the doctor specifically mentioned. That they are a big problem this year. Granted this will not solve all allergy problems, but it may help.

Let me try to explain Ibuprofen. It works for some kids, but not all. If Ibuprofen does not ease symptoms, it does NOT rule out PANDAS. However, if it does ease symptoms, that's a sign the something (like strep antibodies) may be causing inflammation on the basal ganglia. It's just a band aid. It may give some light into what the causee my be if it works, but it also does not replace the need for antibiotics. For my son, during the beginning of a strep exacerbation, Ibuprofen did not work. However, when I revisted Ibuprofen during a viral flare it did work. So, if it doesn't work one time, don't rule out trying it again. Did you ever go back for that throat swab for your child? if not, I still say take her in for one. If you have nurse visits w/o seeing a dr, you can just call and say you want a strep test. Some stores even have minute clinics. Some say their CVS has this and my Kroger now has one. If you haven't done a throat swab, do it. Strep can also hide in other places like the vagina, anal strep, etc. It doesn't hurt to "inspect' those areas since if a child has issues they may be embarassed to tell you. Also, make sure family members get tested for strep. Some PANDAS kids will react even to exposure only. Don't feel like you hit a road block. It's just time for you to "play doctor" in trying to fgure out the puzzle and rule things out. Forgive me, if you've done these things. Sometimes I can't keep everyone straight.

Has she always been this highly allergic or does it seem more so this season? My son's doctor did say allergies seem worse this year, this season then in the past. Do they seem to bother her more in the home?

Did you ever go back for a throat swab? Remind me, what blood tests were done and what antibiotics has your child recently been on (type, dose, and length)? As a reminder to everyone, sometimes PANDAS kids find temp relief of their symptoms with Ibuprofen. It is not used as a diagnostic tool by doctors, but it is something to try, if they can take it.

Does UHC have mail order prescriptions? If so, sometimes companies will not cover an item in the pharmacy but will cover it in mail order when ordered in 3 month batches. Otherwise did someone once mention that stores like Walgreens have something you can join and get discounts on scripts? Finally, if your work offers Health Savings Acoount, those can be used for scripts and are taken out pre-tax. That's nice since you can't deduct prescriptions on taxes otherwise.

How old is your daughter? CBT wouldn't work with my son because he didn't realize the OCD was a problem. So the "talking back' part, charting anxiety, etc would not have worked for him. But ERP did work Again, I want to add that during an exacerbation, it worked a little, but it definitely worked with residual OCD. I'd be nervous putting him in a group setting too. Have you called around to differnt psychologists? How long has it been since the onset of this last exacebation? Does you child have OCD all the time now after PANDAS surfaced? Have you tried things like CBT and ERP therapies? Often they do not work during an exacerbation, but ERP has helped with residual OCD with my son's third exacerbation.

In the article "Amoxicillan failure in strep throat" (http://www.entrepreneur.com/tradejournals/article/169459644.html) it is cited that Dr Pichichero thinks the guidelines for strep throat treatment may change in 2009. As he states... Does anyone know if a new treatment protocal was ever adopted? I tried to pull up the 2009 Red Book online, but you need a subscripiton to view the treatment part. It doesn't appear my library has a copy, but I will call when they open.

Do take caution when putting a PANDAS child on SSRI's. Sometimes they have adverse reactions to them. Often they have to be dose differently too. If you look on the PANDAS Fact Sheet, the study is cited under treatments. http://www.latitudes.org/forums/index.php?showtopic=6265 Does you child have OCD all the time now after PANDAS surfaced? Have you tried things like CBT and ERP therapies? Often they do not work during an exacerbation, but ERP has helped with residual OCD with my son's third exacerbation.

For regular Augmentin, I paid like $30 for 1000mg/day for two weeks worth of pills. Again, that's with United Health Care. I don't have co-payments with them, but often you get a discount with a pharmacy with your insurance.

I think the ENT said something like 6 strep infections or more within a year qualifies kids for a t and a, except for PANDAS. He'll take them out after one strep infection for a PANDAS kid. As for the slp suggesting seeing the ENT. The slp doesn't usually look at kids tonsils, but we asked her if it could make a difference in his speech, so she looked at them. Then told us to get a consult since they were big.

Do you still get a discount? I have UHC and I didn't pay full price for my Augmentin or my son's. Also, call around. Different pharmacies charge different amounts. I found that out with one prescription. Oh, wait, it's regular Augmentin, not Augmentin XR. Maybe it's the XR they won't cover.

When I took my oldest to the ENT for possible speech related issues because he had large tonsils (per the slp), the ENT said that tonsils would only affect speech if they were so large the speech sounded like he was talking with a mouth full of marbles. All garbled. My middle PANDAS son also has speech problems.He had t and a for PANDAS but I asked if it would help his speech at all with the t and a. He said it probably won't change speech at all. There is a slight chnace with t and a that something could go wrong and it changes speech for the worse, but that's rare. If your child sounds like they have a cold, I would rule out a sinus infection. Even if he always sounded like that. That was the only symtpom my son really had of his current sinus infection. He sounded like he was stuffy or like there was swelling. If out of no where they sound very high pitch, that could be croup. Again, my son's only symptom of croup was a very high pitch voice lasting for a week.

There's actually a lot of links to read about t and a surgery and adhd. . I googled "apnea+tonsils+adhd" http://www.webmd.com/add-adhd/news/2006040...helps-kids-adhd http://www.drgreene.com/21_930.html

Aren't there other problems that can occur that prohibit weight gain, like thyoid issue or something? Okay, I'm entering waters I know nothing about but maybe others can chime in. I ask about flaws for a reason. It's one thing to see your flaws and hate them another to distort them. I wonder if he distorts what he sees. That's the hard thing about an 11 yr old, they know they hidden meaning behind questions and words. If you look in the mirror the same time as him and ask him what he sees...he knows there's another motive.

I'll look for info on that connection. but a psychologist told me the apnea/ADHD-like symptom connection. I'm sorry, Faith, but I think the eating thing is more than tonsils. That sounds like an ex-friend of mine in high school. She had anorexia. She even set her watch in front of her so she can time in between bites. Also, the baggy clothes thing, you say it's fashion and "feeling" thing, but some people with eating disorders cover up their bodies with baggy clothes because they are self conscious. How does he perceive himself overall? Does he exaggerate every flaw he has? Does he avoid mirrors? I really don't want to scare you, but I just don't know...maybe it's my long distance mommy gut about your son. If the tonsils help, then, hey, that would be awesome! As for abs post surgery, I think the timeframe on that varies by doctor. Talk about that ahead of time. the lonegr, the better.

You can look at it from different angles. Not PANDAS....if he has sleep apnea, that can snowball into ADHD type symtpoms. So, if he ADHD type behaviors...the tonsils might be you explanation for that. Another non-PANDAS thing...he says his weight and picky eating is due to his tonsils. According to him, if tonisls are removed, he will eat better. However...my ENT told me that when they are huge to the point that they bother a child with food, it would probably affect their speech too and sound like they talk with marbles. Not saying his word is God's, but passing on what he told me. When your son swallows food, does he hesitate with every swallow like he's working at it? It didn't sounds like his faves were necessarily ones that did not require a lot of chewing with chunks. Have you asked your son if it hurts to swallow? Now for Pro-PANDAS dx...There are other behaviors he has that would not go away with a t and a, so where's the explanation for those problems? Didn't you say his tics and such do worsen with viruses? Me, my opinion, I would probably have them taken out. That is just my opinion. If they are big as the ENT said, it can be hiding strep. Soemone said they can culture and biopsy tonsils after removal. Ask him if he will do this. But if you have the tonsils out, as I suggest to others, do it at a "off" time just in case there is an exacerbation following surgery. Also, get the ENT to commit to antibiotics after surgery. Have you tried keflex yet? It's a good way to also get a trial of that. Granted, you may then be placed in the situation..is he doing better becuase of the keflex or because of surgery. maybe ask him to prescribe the keflex as the pre-surgery ab too. You usually start those a few days before surgery. Best of luck in making your decison. Keep us posted.

I continue to give Omega 3's and a vitamin with DHA daily to keep his brain as healthy as I can in the event he should get sick again. Also, if I see a virus coming on, I will give Ibuprofen. I have the mentality that it may be easier to fend off inflammation and it would be harder to take down what is already there. I agree with keeping stress to a minimum, if you can. And, as with all kids, rest is important. I continue to keep hand sanitizer on hand and they use it after school. I also write on my calendar every year what month I began giving allergy meds so I can keep a closer eye on things when that month comes. Obviously, enjoy that your child is returning to you. But never take your guard to far down. Continue to trust your instincts and continue to keep up on research and this forum. I think even if a PANDAS child is well, parents kind of owe it to others to give hope, continue to spread what knowledge they have and continue to learn new info so you are best prepared if it should happen again.

Here's the link to that thread that I think Mom is referring to. http://www.latitudes.org/forums/index.php?...ic=6506&hl= I would also include that article in which the failure rate of amox and pen is cited... http://www.entrepreneur.com/tradejournals/.../169459644.html

What's the copyright date on the pamphlet?

Well, I think that can open a whole other conversation. I believe all people derive essentially from the same place, then something like tribes began to migrate and that's how we started to separate. It was at the time when the continents were still all connected. But then it depends where in Europe your ancestors ended up settling. We're talking about generations upon generations of influence.

My son never had an MRI. he did have his tonsils and adenoids removed at 5 years old. Are they thinking of removing the adenoids? if so, I'd probably remove the tonsils too so you can possibly avoid another surgery some time in the future.

I just thought of something. My BIL recently sent me an article about how people's DNA and gentic make up can be altered over generations by things like diet. Whether it be by famine and starvation or eating too much junk. Now, I don't remember my world history here, but was most famine in nothern Europe, Ireland, etc or was it like that at one point or another over all of Europe?