thereishope

Try your best to also buy things that say "No GMO". That means nothing has been genetically modified. Also, the word "natural" is not really and regulated defined by the FDA. One needs to read the labels.

If you at all think it is a sinus infection, I say take him him to the pediatrician or ENT. You can secure almost a month of abx, depending on the doctor. ENT's give longer scripts for it. Also, if he's had it for awhile, it would need something stronger than amox to clear it up. I'm just saying, you may be able to start a longer script sooner w/ a sinus infection dx while you gather all your info for PANDAS abx. I think some parents even got CT scans of the sinuses and found hidden strep that way?

How is your son doing now? Also, I know the guilt one feels when they look back and realize they were able to find "excuses" for the behaviors. I did it too. well, it's because of his birthday. well, it's because he's just starting school and it's new. I'll give him one more week to snap out of it. You're not alone in that. Also, as for how one "acts" around the doctor, well, sometimes I get like that too. I don't know what it is. Sometimes, I'm very strong at the office, sometimes I'm a wall flower. Maybe it's that part of you that really wishes we could just have a doctor tell us what to do, tell us it will be okay, and have them actually be right.

Let me just add that my son had to be screened for Asperger's when I took him to the psych at 5 1/2 because all that was present at one time, even though there was never a concern of that prior to PANDAS. Well, by the time we had the appt, he was fine and she said he definitely did not fit the profile. I knew it, but I was thankful it was in writing. A decent amount of parents on here have been told by either a doc, a psych, or teacher that their children should be screened for autism, when it was PANDAS. If you read what some traits of autism are, they are similar to PANDAS. I wonder how many kids are actually mislabelled with autism when it was actually PANDAS. If at all interested in reading up more on Asperger's and autism, you can go to www.autismone.org www.generationrescue.org Some of what is cited on these sites, mirrors the struggles we go through. Have you htought about making a trip to one of the experts? I know it's hard w/o a spouse on board.

I don't think it's a drug interaction, I think it may take a toll on the tummy? So, maybe some docs will okay it for very short term. Can you drink milk with it? if so, would that coat the stomach and help any harshness the combo would have? I know it's cited on the insert the pharmacy gives you not to give both.

Sorry about that appt. Those are the time when you sit there, bite your tongue, and just try to bolt as fast as you can. I love it when they somehow "know somebody" , so by some degree of separation, they are an expert as well. I wonder when he was taught "the signs of PANDAS". Put him on your list of people to educate when you get all this figured out....and you will get it figured out.

I just thought I'd be the one to add that if tics are involved, a steroid burst should be done with caution. From what some people have said is that TS and steroids are a bad combo and will make them worsen. I agree with SFMom to test other family members too. even if they do not show any signs of being sick. Also, get the rapid and culture done. If the rapid comes back +, your child (and family members) will get their meds faster. One other thing you can try is to give Ibuprofen and see if it eases some of the symptoms. It's another band aid, but if it works, it's a sign that there's some inflammation going on (specifically on the basal ganglia).

I can't remember, did/does your husband have tics? If he can only understand that it may be "tolerable" now but it can worsen and more problems can arise. Problems and issues that can truly affect your child's life and, in turn, your husband's. We owe it to our kids to try to protect them. Also, I'm sure your son would rather not ever have tics again! I don't think if he were to really speak up he'd say they are tolerable and he doesn't mind living with them.

I'm glad you're seeing improvement! Is he on antibiotics right now?

I'm sorry! It really is the time of year. First, it's the holidays. Second, it's a monday after a long weekend. third, it's the end of the year and everyone is trying to get procedures and such done before the new year when insurance changes or resets. You'll probably have better luck tomorrow. Don't wait for them to call you back if they don't call you by the end of day today. You may have to just keep calling and be put on hold for long amounts of time. If it's insurance, just cut to the chase and when they say hi, tell them you need to speak to a supervisor.

If you give your child a multi vitamin-specifically one that is a designated child's mulitivitamin, it probably has a small amount of inositol in it already. Probably not the amount needed to see a big difference, but it may be in there. My son's has it. Read the back of the labels.

I'm just curious where everyone first heard about PANDAS. Was it via the internet, your doctor a book, a tv show, a friend? Just curious how the info is getting to people and parents.

Welcome. If a child has PANDAS, the ideal is to keep them on antibiotics...period. First, the antibiotics are used to erradicate the infection so healing can begin. Then the child stays on antibiotics to hopefully prevent another infection from occuring. Like when a child has rheumatic fever. When I watched my child heal, I would have good days and bad days. Some of the bad days or setbacks as I called them would last up to 3 days before I would see recovery mode again. He would have times of plateauing as well. Bumps in the road are expected. If your child was steadily improving, then you see dramatic setbacks that aren't going away, then a different antibiotic is something to consider. My son had OCD (along with many other things), but no tics. So it's understandable how you can have the vice versa. If your child can take Ibuprofen, many have seen that may help ease your child's PANDAS symptoms as well. Like a band aid.

Good reminder. Even though meds play an essential, important role in healing, once the infection is under control (which takes longer than that 10 day script docs like to prescribe) , one then has to give the child and brain time to heal. Unfortunately, for most of us , the negative change in our children happened in an instant, but take awhile to recover. For my son, the first 2 strep triggered exacebations took approx 2 months to recover. The third took about 5 months.

inositol is one of the other supplements stated to help OCD on the old OCD Foundation website! I don't have the quote but it was Omega 3's, valerian root, inositol, and one more that eludes me at the moment. I have never looked up inositol+autoimmune diorders . I know what you mean about almost being nervous to help the immune system. I mean...is one making those bad strep antibodies stronger for attack? I once posted about echinacea (sp) for immune support and learned that isn't good for our kids. I also like DHA for PANDAS. It makes total sense to me. It helps brain developement. I think that is very helpful for the brain as it heals from any damage done and would help the child "retrain" their thoughts if OCD really embedded in them.

You are correct to take him back to the dr and fight for more antibiotics. Most kids do not get better on amox. There are resistent strains of strep. Here is a link that is often passed along that perhaps you can present as a friendly reminder of that to the ped.. http://www.entrepreneur.com/tradejournals/.../169459644.html Also, as you have probably read, many kids need more than the standard 10 days docs like to give. Many need at least a month to see improvement begin. Finally, there is a chance if your son goes back now, you may get a false negative. It was stated here once that retesting should be done 14 days after finishing abx. So, first try your darndest to get a new script w/o another strep test. Try over the phone first. You may be surprised. Some kids will get another + early after finishing abx, but you do run the chance it's soon after meds. If need to, eventually just go ahead and retest him. But, nor do you want your child to suffer for 2 weeks. Too many "ifs" and maybes!

Are you sure it's not a sinus infection? My son had a cold on and off for a month. It was a sinus infection. At first they gave him 15 days of amox. Same dosing as you. A week into it, I called and told them he still soudned like there was swelling. Don't really know if it was the case, but I wanted longer abx and something stronger. Over the phone with no fight, they gave him 15 days of Augmentin. He is nearing the end of the script and he is sounding better too. My son's symptoms at the time was only a slightly runny nose and sounded a bit congested. He wasn't miserable or anything. So, look into a possible sinus infection. Tell them you now realize that may be the culprit since he's been sick with a cold on and off for weeks. They did nothing invasive at the appt. They pretty much took my word and gave the script. At the appt, or on the phone, tell them that the amox isn't working and you want to try something stronger like Augmentin. You may be able to "get away" with just talking through a phone nurse to get something else. Sinus infection will justify their med records for why the changed the script for you too. btw...From what I've read some kids have had bad excaerbations from sinus infections. You can also get strep in the sinuses.

I agree to use the pinned threads for reference. Also look at www.pandasnetwork.org. There's good info on there. Specifically, look at Buster's Fact page... http://www.latitudes.org/forums/index.php?showtopic=6265 This is part of it that I think would be useful for you. I highlighted the sentence....

When my son gets strep I take everyone in. I was told they didn't need to do a strep test on my then 2 year old because kids under the age of 3 don't get strep. I insisted. My 5 year old PANDAS son is asymptomatic. I didn't know if that was the case for my other children. So, they finally swabbed her. Well, she had strep. That was when I found out all 3 of my kids are asymptomatic. None get classic symptoms. My then 2 year old and 7 year old went to the ped's office laughing, smiling, etc. No symptoms at all.

I haven't tried this supplement. I could post on other OCD boards if people saw an increase in behvaiors before it helped. Right now, I'm thinking of something totally off topic, but when teens are given abx for acne, acne goes crazy and worsens for 3 months before it actually clears it up. It draws out all the bacteria. Perhaps, that concept may also be trues for something like this? But, I agree, if you saw an increase in tics, it may not be worth riding it through to see how big a pay off you may get, if any. Thanks for sharing your experience!

Is he allergic only to Ibuprofen (Motrin) or all NSAID's? Aleve is an NSAID but not an Ibuprofen. Those who have tried that say that Ibuprofen works a lot better, but if he can take a naproxen sodium NSAID, it's something to look in to. But ASK YOUR DOCTOR FIRST. You don't want an allergic reaction in combination with PANDAS.

When she was on Zith, was it only a 5 day dose of Zith or was she still taking it when she regressed? When you say she completely regressed, with the exception of tics, was it the same OCD tendencies that were present whne she started the abx, was it older ones resurfacing? Was the same severity?

With my son, when it was during recovery from a strep triggered exacerbation, a virus and allergy set off a decent size "setback". Once I considered recovered, I have still seen PANDAS surface slightly when a virus is there, but not remotely as bad a strep triggered one. Luckily, with my son, the viral induced PANDAS setbacks go away as the virus goes away. The severity and length of a viral triggered exacerbation really varies across the board with PANDAS kids. btw...Your son could have had a double whammy...the virus along with the excitement of the holidays, esp if you had a lot of visitors or were visting with big groups. Stress can be a trigger. Even though excitement may not be considered "stress', it can make a child's blood pressure rise. Try to keep things calm in the house if you can.

Maybe the ghosts of Christmases past, present and future visted the naysayers last night and showed them how wrong they were/are and how their reputations will be tarnished in the future when everyone realizes how wrong they were and how poorly they treated children.

Merry Christmas!