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Son just diagnosed need advice


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Hi, my 8 year old son has just been diagnosed with suspected PANDAS. I had a severe strep infection approx 2 months ago and was treated with 10 days Penicillin. Approx 2-3 weeks later my son had vague stomach symptoms, severe irritability and had a panic attack when I touched his neck. His fear and panic was so severe I got him to urgent care, a throat culture was done even though he didn't have a sore throat or fever. It was positive, he was on 10 day of Penicillin. Unfortunately his panic, fears and phobias increased and he has become anorexic from a fear of choking. He has had a psychiatric eval and she feels he has PANDAS and started him on a very low dose of Zoloft. It has been 7 days and no improvement. It has been 6 weeks since onset of symptoms. At this point what should I be asking his doctors for? Does he need another strep test, do I need another strep test? Should he be on a longer course of antibiotics even if the strep test is negative. Any advice would be helpful.

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I only have a minute, but want to say absolutely yes you need longer antibiotics and a different one. Augmentin is a good treatment for strep but he should have a minimum of a month. You need to get an appointment with a PANDAS specialist right away. It may take some time to get in so make your appointment as soon as possible. I wouldn't mess around with doctors who dont understand this illness. They may tell you they can handle it but unless they have treated multible PANDAS kids, I wouldn't count on it. You will loose valuable time. Your first priority at this point is high dose, long term antibiotics and an appointment on the books! Hang around here and you will get lots of great advice. Sorry for what you are going through....you are at the right place.

 

Dedee

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I'll ditto everything Deedee said. Don't mess around and lose valuable time w/ doctors who have not treated many PANDAS patients. The quicker you jump on this, the better.

 

The NIMH has a trial going on now. Your son sounds like he would qualify. I would do that in heartbeat. Go to the website http://pandasnetwork.org. They have the link info on the study. Call the NIMH today!!!!

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I'll echo checking out the clinical trial. ALso, it typically takes 21 days to begin to see any effect from Zoloft....I'm not sure if having started the Zoloft will disqualify you from the trial, you'll need to check that. Find a PANDAS doc ASAP if you don't pursue the clinical trial. There are some that do phone consults. It sounds like you've caught this early. You may be able to get your son out of PANDAS more easily than those, like me, who took too long to figure out the likely diagnosis. Good luck, and keep advocating for your child.

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Hi - not a long term solution but a stop gap while you are doing other thigs but many find some relief with Ibuprofen. If your child can tolerate it, we dose 2 or 3 times a day. It really seems to help our PANDAS ds. We make sure that we are giving it with food to lessen any negative impact on his stomach. He tolerates it well and it really helps to take the edge off.

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Go to pandasfoundation.org, click on providers to find a local pandas Dr. Also pandasnetwork.org has a smaller list of providers and the few national experts are highlighted in red! Ask your local ped to run strep titers (ASO and DNAse B), Epstein Barr virus, mycoplasma IgG and IgM to get started. And neg throat culture does not mean stop the antibiotic, the autoimmune reaction is under way and that's what's causing the attack on the brain right now. Need long term high dose antibiotic, helps with immunomodulating and anti-inflammatory effects. Ibuprofen helps also. Possibly see ENT, to get the ball rolling if you suspect sinus problems or allergies as this is oftentimes a harborer of strep or other infection. Do not take no for an answer on antibiotics, keep searching till you find a knowledgable pandas Dr. Good luck.

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Penicillin does not work most of the time. Augmentin is a much better alternative. I would try calling the dr. who gave you the penicillin and explaining to him that it had not worked and ask him for at least a ten day trial of augmentin. You should know after about a week if the augmentin is working.. If you see improvements on augmentin then call him back and ask for more and let him know of the improvements you are seeing. Then if he won't give you the augmentin ask for another strep test and culture or even the strep blood test which will test his titters. Hopefully you can get him started on something until you get into a more experienced dr. Also, if you sign up for the pandas resource network they will e mail you a list of treating doctors in each state. Most of those should take insurance. We are pretty new to all of this as well so I don't have too much to offer you but that is where I have started. Good luck.

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Thanks for the info on the ibuprofen, we will start that right away. It makes sense to me. As for Doctors in the area I will take the advice given and check a few sites for knowledgeable doctors. I have called my PCP to see if I can talk her into starting Augmentin although I am not keeping my hopes up. I did find a Dr. Fredrick Lloyd in Palo Alto, California that is close to me and someone recommended on this site, scheduled an appt in 10 days.

Wish me luck,

Thanks again for all the advice.

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I would just add a caution as it relates to the zoloft. My kids have never been on psych meds, so I'm commenting based on what I've learned here and from our doctors (including Dr. M the expert from FL.) Psych meds tend to have little or no impact on PANS kids. If you are not addressing the autoimmune response taking psych meds is akin to throwing deck chairs off the Titanic. Some have reported those meds helping in severe episodes - but its usually in conjunction with other PANDAS treatments. But many have noted that their kida have gotten worse on psych meds.

 

We were never comfortable with that route since our son was dx at 2 yo (hes 4 1/2 now) so we felt he was too young. Again, I'm just commenting on what I've read here...

Edited by airial95
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Hi, my 8 year old son has just been diagnosed with suspected PANDAS. I had a severe strep infection approx 2 months ago and was treated with 10 days Penicillin. Approx 2-3 weeks later my son had vague stomach symptoms, severe irritability and had a panic attack when I touched his neck. His fear and panic was so severe I got him to urgent care, a throat culture was done even though he didn't have a sore throat or fever. It was positive, he was on 10 day of Penicillin. Unfortunately his panic, fears and phobias increased and he has become anorexic from a fear of choking. He has had a psychiatric eval and she feels he has PANDAS and started him on a very low dose of Zoloft. It has been 7 days and no improvement. It has been 6 weeks since onset of symptoms. At this point what should I be asking his doctors for? Does he need another strep test, do I need another strep test? Should he be on a longer course of antibiotics even if the strep test is negative. Any advice would be helpful.

 

I would also call Dr. Margo Thienemann especially b/c anorexia is involved (or is she the one who already did your psychiatric eval?). She sees lots of PANDAS patients. She's a child psychiatrist who specializes in OCD. She was the ONLY one who believed in us and suppported us (and encouraged antibiotics) when our dd was first diagnosed with pandas in 2008...our dd was 7.5 years old at the time, and wound up hospitalized in the eating disorder clinic of LPCH (acute food refusal/distorted body image/malnutrition) thanks to PANDAS. The eating disorder clinic (Margo wasn't with LPCH but knew the docs there) weren't real believers in PANDAS (although they didn't really know what to do with her, dd was a very insane 7 year old, and they wanted to treat her like the teens with "normal" AN).

 

Margo may also order bloodwork. (I think she does that for PANDAS kids nowadays.)

 

Definitely test everyone in the household for strep...our younger dd (asymptomatic--non-pandas) was a carrier and our PANDAS dd's anorexia didn't resolve until sister was cleared.

Edited by EAMom
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I just wanted to add, do anything you can to get your son to eat. These little kids can spiral downward VERY quickly. My dd went from 50 pounds to 42 pounds in about 2 weeks (while we were frantically calling psychiatrists, and trying to get her seen at the eating disorder clinic). Once they lose a certain amount of weight (I think it's 15%?) then the distorted body image can start (yup, they lose the weight first, THEN they get a distorted body image).

 

I would ditto the recommendation for Advil.

Edited by EAMom
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I ditto everything you've heard from everyone above and want to add in that ibuprofen can bring temporary relief to our kids due to the anti inflammatory properties. You don't want to keep kids on it long-term due to liver issues, but I always do it round the clock for a few days if there is an exacerbation, in addition to antibiotics.

Edited by kimballot
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