thereishope

You know what maybe I should do a reminder thread about Ibuprfen. It seems that info is slipping through the cracks. How old is your child and how much does he weigh?

Congrats on the baby! If his knees and wrist hurt and are swollen, have you discussed possible reactive arthritis with the doctor? That is connected to strep. It's a way to leave the communication open and physical proof of strep to the dr.

I'm really trying to remember if my son was sensitive to sound. I think he was to voices. His sensory issues revolved more around touch, hot/cold, etc. I remember when I was a kid, I couldn't go to movies because they hurt my ears and department store lights hummed so loud to me we had to leave.

I would have said to see if you can get a script for Zith and you did! You could ask the doctor to swab the sinuses, the anal area, etc for strep. I believe strep in the gut is done through a stool sample. I think if you are on antibiotics you can get a false negative on a strep test. Can someone answer that? How does your child respond to Ibuprofen? have all family members been tested?

My son is amongst the kids that were told might be bipolar by a med person ( just can't call them a professional). It was when he had an exacerbation with a negative strep test. It was a few days later we realized his allergies were acting up and allergies were a trigger for him.

If you suspect PANDAS, I would get strep under control, rule out family members with strep, and you can do antibiotics while awaiting results of the Cunningham test. If anyone has strep, you don't need those test results to get a doctor to treat the infection. The only thing I would wait to do is a streroid burst if it would be something you'd consider doing. That might affect Cunningham test results. If you wish to travel to see an expert for diagnosis and treatment, well, then I could understand waiting for the results. But the "basics"...you can do those now.

Cost isn't listed. This is new to me so I don't know what it's been in the past either. Ideally, I would go and drag my husband too. I'm nervous about cost. I have family in Chicago so I could stay with them, in theory. What hotel is it at? By Ohare? Would it be corny to think of color representative of PANDAS and make ribbons? Defintely not black and white. There's nothing black and white about this disorder. Lots of gray areas. But gray doesn't "pop". Okay. Spending to much time thinking about this...

Can you register for the conference now?

It is VERY confusing. Even the culture may come out negative, but then, it may come out positive. It is easier to the the help of a doctor if the rapid and/or culture come back +. Even if the throat culture comes out negative, it doesn't completely rule out strep. All family members should have strep tests so you should go get one done.PANDAS kids can react to exposure only. And you don't want to reinfect. Even if your child was exposed 7 years ago, there's a chance that he may have never rid himself of that infection or he had many isolated infections. The one at 3 being the first one. There are others who have said they saw some improvement at first then go back to square one. Personally, I would try my hardest to get a different antibiotic. Because you saw improvement then got flooded back with problems, I don't think it would be best to wait a month. Do you still see any improvement? You could try to get a different script with a phone call only. Say you don't think the penicillan is working. Sometimes the will trust you over the phone and call in a new prescription. Did you look at that article I posted about pen and amox failure rate with strep? http://www.entrepreneur.com/tradejournals/.../169459644.html

Hello, Wornoutdad, Did you see Dr T's very kind offer earlier in this thread?

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Melanie, I think (and just think) that for some... Mycroplasma P to them is like strep to others. Also, when you have Mycroplasma P AND strep simultaneously, it's a very bad combo for a PANDAS person.

First, here's link about how parents here have seen OCD in their children. Often parents don't realize they are seeing OCD... http://www.latitudes.org/forums/index.php?...ic=6153&hl= My son had a lot of OCD. As for the strep, I wish it was easy with these kids! Go for a rapid. If that comes back negative, tell them you want a 48 hour culture. Since your child has never had a negative strep test, there is that possibility he's had strep for awhile. My kids don't get symptoms either. It's very scary. My 8 year old's classmate had strep and I had to take my 8 year old in and my 3 year old since there's no ther way of knowing if they somehow contracted it . Everyone will think you're overeacting, but that's how I found out my 2 non-PANDAS kids are non-symptomatic. My PANDAS son started having his meldowsn, took him in, it was +. So needed to rule out the other 2 kids. They didn't want to swab my daughter since she wa 2. well, they both had strep. They laughed and skipped into the dr office! Anyway, is your son still doing well on the penicillan? If he starts to regress, take him back in. Discuss how your nervous he may be a carrier. You may have to be insistent, so be prepared. Maybe he's not, but that would also affect what abx they give him. Also, take him in for a FOLLOW UP strep test 2 weeks after finishing abx. If any member ever gets a + strep test, take them in for a follow up. Doctors will not tell you to do this. Just call and make the appt.

As for Omega 3's, my son takes a gummy Omega 3's. he's 6 and super picky. Omega 3's can be found added to many foods now too. You'll be surprised. Overall, poeple are more aware of their diets and the options out there for things that are gluten free is great. I really think you will be pleasantly surprised.

Does anyone know Dr Latimer's views on whether a child can have co-morbid disorders? PANDAS and something else? I need to read through your revious posts and get your history again before I start giving tons of "maybe this" etc. My son has awesome good times when not in an exacerbation. Even now that he is recovered, ever so often something pops up that I freak ot about, but it passes super quick. I have the mentaility now that if my son was perfect all the time, then I would also have reason to worry. Do patients revist Latimer after their children are considered recovered for a follow up? Take in what was told, compile all your info and try your darndest to look at it from the "outside". I know you just spent money on latimer, but if you can, go get a second opinion. Realize their are more parents on here revisting years later saying they thought it was PANDAS. dismissed it, and now they are back. Be 100% sure in your heart and mind before you walk away. And whether it's PANDAS or not, you already have a lifetime, irrevocable membership to our club:)

Clindamycin is a popular antibiotic for a carrier. I believe EAMom's daughter did well with Azith.

Good reminder, Mom. Often things like CBT or even ERP don't work during an exacerbation until you are more in recovery mode or even the tail end of recovery. But it may work for some even during an exacerbation so it's worth trying if you want. My son...there was no reasoning, meltdowns, etc during an exacerbation. It wasn't until the tail end of recovery did I see I was now able to help him through it. At that point, reasoning had resurfaced and a lot of the other PANDAS symptoms were gone.

I asked if the OCD bothered her because it didn't bother my son even though it controlled him and took up a lot of time. That's why CBT didn't work for him. He didn't see the need to name it. To him, it didn't exist. It was just 'him". He wouldn't rate anything either. ERP was better for him. Meg's Mom has done some awesome posts on it. You can look up her profile and read some of her posts. Unless she feels like typing all of it again!

Welcome. The most important thing you can do for yourself and your daughter is to never give up hope. Obviously by your detrmination to find treatment, you know hope is there. PANDAS is treatable, but there is a lot of trial and error involved. Along with the antibiotics, take supplements like Omega 3's, DHA, and a good multivitamin. There have been parents who have posted here about their children who are now adults and doing well. You can also try taking Ibuprofen and see if that helps with any PANDAS symptoms. I have also heard the supplement SAM-E is good for moods, deoresssion, etc. SAM-E is the name brand. But I would suggest adding one thing at a time. Perhaps try the Omega 3's first and see how that helps. Also, I would bring your daughter in for a strep test just to rule out she doesn't have strep. If you're going through this journey and treatment, you need to rule out you will catch strep for a family member. I also need to say to keep an eagle's eye on your little one. There very well might be a genetic connection with all of this ( I say there is, but the official research isn't there yet). If you see odd behaviors with her, again, bring her in. Remember you're not alone in this. You have family here. Post any questions you Want. we will always try to answer.

Unfortunately, if it is PANDAS (and by the response to abx it sounds likely), something happened at that 3 years of age. I know it sounds scary to think that was the case and you never knew he was sick. With strep, a person does not have to have a sore thraot, fever, etc to have strep. None of my kids get symptoms. Strep can occur in other places than the throat. Even some diaper rashes can be strep. Also, other things may cause PANDAS. Example, Mycroplasma P seems to be the culprit for some. Staph for others. mycroplasma Pneumonia is something you could request your doctor to test for. That would only be resolved through an antibiotic like Zithromax. Penicillan would not clear that up. If you flip through past threads, you'll see Mycroplasma has been a hot topic on here lately. Has your child ever had a negative strep test?

Sweetie...you're on the list already

Well, if the time came and you did do hard woods, go on vacation while they're done. Pulling carpet up is nasty and very unhealthy for the immune system. If you haven't had your furnace and air ducts cleaned, I suggest doing it. At the very least, the air ducts. We have a smaller house (1600 square foot bi-level) and it costs maybe $200 for the ducts. It was disgusting seeing how much fecal matter the dust mites leave. I believe that's what people are allergic too...what they leave behind.You could get a air purifier with HEPA filter for the bedroom. I think a smaller one is under $50. Let us know how she is once on allergy meds again. It took my son maybe 3-5 days for his PANDAS symptoms to get under control once starting allergy meds.

Here's the link to those OCD books http://www.latitudes.org/forums/index.php?...ic=6616&hl=

Welcome. I don't have a name to share with you, but was wondering how your daughter views everything she's gone through? Does she want to stop the OCD, does the anxiety bother her, does she acknowledge something is wrong? I have heard some people say that CBT has helped their child, but I have to admit not too many. It seems like ERP works well for a few more. It worked for my son while he was recovering from residual OCD. For him, CBT didn't work. meg's mom recently posted a thread about recommended books. That's a place to start. The parent really needs to try to understand what is going on with their child. It is at that point, can you really try to help. Have you looked in the thread about suggested drs? Some therapists are listed there as well. http://www.latitudes.org/forums/index.php?showtopic=6428

The boy in the book has his own blog too... http://ificanhelp.com/corys-blog/