thereishope

Thank you for posting! I find it interesting that Vitamin D and NAC worsened your symptoms. In regards to mycoplasma, that is also a trigger for some PANDAS too or as the original trigger for a PITAND.Don't know if you've ever tried this, but many find Ibuprofen also helps whne symptoms surface.

Oh, Buster,I can see how tricky that probably was to put together!I, admit, it's a little confusing and overwhelming at first but if you know what your child is and what you're looking for, you can find it.I found my son...he's PANDAS sudden onset OCD, that's it for what's on the diagram. I think, realistically, with all these circles, it may be near impossible to get the exact percetange represented w/o looking like a kaliedoscope.I suppose it shows all the similarities these disorders have.

Curious, what's the percentage of PANDAS with tics only vs PANDAS with OCD only? I see the overlaps for it is there but dramatically higher for tics only with no OCD than vice versa.When we've done threads asking this before, it seemes to me more children experienced only having OCD with the absence of tics than vice versa.

My son went through a time when he fought tooth and nail with me giving his meds. Since he was 5 I was able to put a hold on him and squirt it slowly in his cheek. But one night it was so bad, my husband had to drive home from work just to give the antibiotic, then drive back to finish his shift. My son took it from him no problem.

Has he ever expressed a fear of choking? Some kids develop that while in an exacerbation. Perhaps the pills are too big and consider splitting them or even getting a liquid for a bit until you see more improvement.

Even though it is important to be consistent with sticking with what you are trying to overcome at the time, at some point if the anxiety is too extreme and not calming down at all, one may want to reconsider what tendency they are trying to overcome and choose something else, something that may be a little easier. Or is the therapist making him go "cold turkey" too fast? We pretty much had to wean my son and do baby steps. I agree with the others that if your child is still well into an exacerbation, therapy may not help at this time. Also, your therapist should be open to hearing what you have to say and re-evaluate the game plan if it is not working out for the family. Do you have an email or phone number for the therapist to explain what is going on now that you've tried to implement his plan? Lack of sleep (by child and parent) will not lay a good foundation to attempting to overcome any OCD. I would at least talk to the therpist and see what they have to say once you voice your concerns and tell them what's going on.If they insist on sticking to the plan even though it is obviously causing so many problems, then it's time to find someone else. Nothing's wrong with ditching a therapist if it's not a good match.

Yep. My son has his fair share of insults along the way. He also has a speech disorder which was very severe until about 6 years old (unintelligible to strangers). So, I have heard numerous time kids say they don't understand him, ask if he's speaking Spanish, just walk away since they didn't understand him or repeat it back in the exactly, incorrect way he spoke. Kids can be cruel. I've bit my tongue many a times. In those instances, luckily I don't think my son ever realized what those kids actually meant nor did it ever hurt his feelings. He really is one of the strongest people I know.

To add more confusion, it seems some of these kids start as soley PANDAS and then become PITAND as they begin to not only react to strep. Then you have other kids, like my son, that started as strep only (PANDAS), started to react to other things (PITAND), now doesn't react to non-strep triggers, but I assume (and hope I never find out) he will still react to strep itself. Confusing enough? There's also a history of PANDAS section in the pinned threads you might find interesting. http://www.latitudes.org/forums/index.php?showtopic=5144&st=0&p=36300entry36300Here's a small part of it...

Yes. My son was called a loser, yet it didn't phase him and still wanted to play with the boy that said that. But,boy, did it make me mad!

I believe there are others who have said their child's first steroid burst worked but a subsequent one didn't. Not sure whyy that would be the case. Did your child worsen while on steroids or just remained the same? As for the Cunningham test, from what ilast heard there is a hiatus on sending out kits and running tests. Does anyone have updated info on that? Is everyone else in the household healthy?

In my experience, I noticed some improvement from antibiotics in my son betwen days 3-5. Even at that point, no where near 100%, but I saw something was happening. It was a road of improvements and setbacks. Not all symptoms went away at once either. Being that your entire family had strep as well, your son's immune system is really taking a beating. What antibiotics was the rest of the family put on? As for shifting OCD tendencies, yes we did have new ones emerge even after onset. In exacerbation #3, when we also had to overcome residual OCD, we had new OCD tendencies emerges even as old ones were overcome.

I give my 7 year old Carlson Kids fish oil. It's a liquid. My son is very picky. He also tried Dr Sears DHA chews. he doesn't like them as much but will take them if we run out of the fish oil.Perhaps someone else can suggest a smaller capsule to swallow for your son so he won't have to taste it at all! If he likes the one you are currently giving, can you just increase it to two capsules/day?

Welcome to the forum!I didn't read all responses so forgive me if I'm repeating things. Have you seen any improvements in that 4 days of Omnicef yet? It does have to be a miraculous turn around, but any improvement?It is a long road with setbacks here and there. You are right to take notes and chart her progress. Here's a charting system some like to use Buster's Charting System http://www.latitudes.org/forums/index.php?showtopic=6685&hl= I am not familiar with the dosing of Omnicef and what the half life is. Should it be taken only once a day?

Welcome to the forum!In regards to t and a, yes a child can still get strep even with t and a, but it can also lower the chances. Some kids on here go on to have chronic strep, others it helped with symptoms. My son had t and a in Feb 2009. Strep again in late March 2009 but has been strep free since then. I see it as I have no idea how many infections it prevented or will prevent. Tonsils are a hiding place for strep. If they are large, they can continue to cause problems for her even as an adult. The younger you are when you have them removed, it suppose to be an easier recovery. As for the anemia, I agree with the others to get that tested. T and a is not so important to put her health in harms way if she is anemic and surgery becomes dangerous. When all of this resurfaced, did she have a confirmed strep infection then? What antibiotic and dose was she originally put on for an active infection? Even though Zith works for some people, others have luck with different antibiotics. Switching antibiotics is something to consider.

It's great!Thanks for sharing!

With PANDAS and PITAND, once the original trigger (whatever it may be) opens the Pandora's box, other things that stimulate the immune system may make symptoms resurface. Immunizations stimulate the immune system. There is a chance that some who saw their first known exacerbation post vaccination actually already experienced a mild PANDAS PITAND episode and it went undiagnosed. However, the flu shot has caused a good number of cases of Narcolepsy in Australia in the past year. Narcolepsy is autoimmune as well. Mom w/OCD son has posted before that Narcolepsy patients have high strep titers, so there is a similarity. So, one cannot dismiss the idea that a flu shot can perhaps start the PITAND cycle in some kids. I also believe that just because the flu shot or other immmunization were uneventful before, it doesn't mean it will be the case every time. It's a big decision.

Does your child have a dairy allergy or any other allergies? Make sure to read the label for ingredients. You could try to change the brand that you are giving or try to supplement through diet only with Kefir or a probiotic yogurt.

We will pass on flu shots from now on. Not only for my PANDAS child, but the entire family.

I'm sorry about the backsliding. About the Ibuprofen, you said you're giving it every 3-4 hours. Are you cutting down the dosage? Ibuprofen is every 6-8 hours. About the kids possibly reacting to a virus....if they are so close to just coming out of a strep induced exacerbation, it is possible they would react strong right now to any virus. However, knowing you had strep recently, I would think it may be you or your husband (did he get tested) causing some of the resurfacing of symptoms. Such a guessing game.

Okay, I just tuned into their show that started at 9pm ET. When they are on air and you go to the link, it automatically starts broadcasting. You don't have to be signed up for anything, no logging into anything. Very easy.

I found them on facebook and asked them for directions:) They have an unrelated show tonight at 9pm so I'll "practice" listening then if they respond to my question in time. You can call in with questions too!If I get it to work, I'll post how to do it. I think the section where it asks if you want a reminder, turns into what kim explained...an arrow that you click and them it connects you.

I just stumbled on this.It says Dr Swedo will be doing a radio show on 2/9/11. http://www.blogtalkradio.com/the-coffee-klatch/2011/02/10/dr-susan-swedo--nimh It also states Beth Maloney will be on 1/12/11 http://www.blogtalkradio.com/the-coffee-klatch/2011/01/13/beth-maloney-saving-sammy-ocdtourette-syndrome I feel stupid though. Does anyone know how we can actually hear the interviews? I'm looking around the site and can't figure it out.I don't usually listen to things like this.

Vicky, I agree with PMom on the dosage. 250 three times a day seems low for an 11 year old. If you want an increase in antibiotics or a change in antibiotics and they are reluctant, you could tell your dr that your son's throat still hurts. If they want you to bring him in to be retested, remind them he could now have a false negative since he on antibiotics. Here is a look to an article about the failure rate of amox and strep http://www.entrepreneur.com/tradejournals/article/169459644.html

Yes, teeth coming in can increase some PANDAS symptoms, along with loose teeth. As for the stringy white stuff...does she have allergies that could cause nasal drainage? Allergies can increase symptoms as well. With winter upon us and heaters on, dust is flying all over the place in houses. If you have a saline nasal spray at home, you can spray that and it will help her blow it better and possibly cut down on the drainage. It's non medicinal so it can be used with any other meds she is taking.

Have you tried Ibuprofen or any other anti-inflammatory? Is anyone is the immediate family sick with anything? Not just strep, but anything?