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Symptoms returning while on prophylactic abx


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I'd love some of your insight!! My 6 yo PANDAS son is on 100mg of Azithromycin daily for prophylaxis. He is about 6 weeks in. He has been doing very well up until about a week ago. A lot of his symptoms have returned. I'm not sure if it is normal for them to have ups and downs while on antibiotics or if I need to push getting his dosage upped? He's also been complaining of his legs being tired a lot, and last night I noticed quite a few bruises on his legs. I just spoke to his dr and he is ordering another ASO, cbc, sed rate and possibly some other tests. The dr is not wanting to up his dose at this time. I just want to make sure I'm not missing anything. I also am interested in possibly starting some natural path options; vitamins, diet changes, ect. Any thoughts would be greatly appreciated!

 

Thank you

Tiffany

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I'd love some of your insight!! My 6 yo PANDAS son is on 100mg of Azithromycin daily for prophylaxis. He is about 6 weeks in. He has been doing very well up until about a week ago. A lot of his symptoms have returned. I'm not sure if it is normal for them to have ups and downs while on antibiotics or if I need to push getting his dosage upped? He's also been complaining of his legs being tired a lot, and last night I noticed quite a few bruises on his legs. I just spoke to his dr and he is ordering another ASO, cbc, sed rate and possibly some other tests. The dr is not wanting to up his dose at this time. I just want to make sure I'm not missing anything. I also am interested in possibly starting some natural path options; vitamins, diet changes, ect. Any thoughts would be greatly appreciated!

 

Thank you

Tiffany

 

 

100mg is probably too low.

My dd was on 250mg when she was 7, 42 pounds.

 

Have you tried other antibiotics?

Also, check the household for strep carriers (throat cultures).

 

 

Did you read Saving Sammy? having the right antibiotic is important, but having a high enough dose is critical too. that's why Sammy ended up on 1000mg of Augmentin XR 2x daily (not saying to switch to Augmentin, just saying that the lower doses didn't do it for him)

 

could he be coming down with something? is anyone else in the household sick? could he have Lyme?

Edited by EAMom
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My DS8 has been on prophylactic Augmentin since June 2011. When he gets sick w/ a virus or bacterial infection or is exposed to someone who has strep, his symptoms ramp up. When they do, he goes to treatment dose Augmentin, which is 250mg bid or even 500mg bid until the symptoms start subsiding.

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My ds8 was on a too low dose...250 once a day so his pandas doc upped to 500 a day unless he is sick, then bid. (augmentin)

Nicklemama, I was curious what the dose is for your son is when not sick? My son is also 8, but weighs 72 pounds. Also, how do you know when to stop treatment dose?

Thank you for any info:)

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My daughter is 8 and weighs 64 lbs. She was on 250mg of Zith daily along with Minocycline when she got peri-anal strep. They stoped the Zith and gave her 10 days of Augmentin. We had stopped the Augmentin on a Friday (and restarted the Zith), and on Sunday she had a throat swab that was positive for strep. She is now on Biaxin. So my experience is that Zith did not cover her at all. Also, my daughter only gets mildly elevated strep titers. In fact they are very close to normal and her pediatrician once said she thought it was probably normal for her. Wrong!

 

We are having spring break next week so we have decided to take another trip to Florida for a follow up with Dr M. and get a short 1 week CBT refresher. Also, we have an appointment with Dr. B the end of the month. My husband is working his butt off trying to make enough to pay for all these trips and the medical bills are stacking up. But what else can you do????

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patric- DS weighs 60lbs. He takes 250mg sid prophylactically and 250mg bid or 500mg bid when he flares. Which one given depends on what is in the medicine cabinet. His ped wrote for 20 days treatment w/ 4 refills at 500mgs bid to be given when he flares. Dr K says give it for a min of 14 days. That's what I do. If he's still in a flare at 14 days, I go longer until I see improvement. I do this when he gets sick and flares. If he flares w/out being sick, I give him 200mg of motrin 3x a day, spaced out about 5-6hrs. This usually only lasts a few days and then he gets better again.

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Thank you nicklemama! This info. Is very helpful! I did not know about the Motrin. I will try that if there is a flare. Also, dr K. Told us 14 days too, but my gut said a little longer, so we just took him off of the treatment 500mg bid to once a day dose. I hope this does the trick. Now we are trying to get the probiotics right. We bought the Jarrow sach B. yesterday in 5 billion size. (accidentally left it on counter instead of in fridge, so I hope it didn't go bad). Just not sure how many to give or how often.

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We give DS Florastor, which is Sacc. Boullardi, twice a day. I don't know how much is in each capsule. I think around 3 billion. We've been doing this since he went on abx in Oct 2010. I have never refrigerated it. If your instructions say to, then I would. A day on the counter is not going to hurt, I don't think. I read that somewhere.

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Tiffany-

 

Viruses, colds, loose teeth and even illness exposure can cause pandas flare ups.

 

My kids are on very low prophylactic doses, yet if we see any increase or return of pandas symtpoms we immediately put them on full strength treatment dose of abx along with regular (3-4 x day) advil dosing, for about 5 days. Many times (not all) this does the trick.

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Thank you all for the answers. My youngest DD has been sick with a nasty cold, so maybe that could be contributing? Also, he does have a loose tooth right now, I did not realize that that could cause a flare up. I have Saving Sammy, but have not read it all the way through yet. One of my obstacles is, although we have a ped that is working with us, he does not know much about PANDAS, I have sent most of the information to him through email. We have done Augmentin before with not much improvement. Cephalaxin has worked well for him, but the dr did not want to do that for prophylaxis. Isaiah had his tonsils removed in 2010 (before his PANDAS diagnosis), he has not had a positive throat culture since before they were removed. I am interested to see if his ASO titers have gone up since the last time (they were 681 the last time they were taken.) The dr. said that if they have gone up we will up his dose for a bit.

 

Thank you all for the responses. I appreciate them so very much!

Tiffany

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