Need advice for PANDAS son

[nurseg]

Hello everyone,

Just wanted to know if anyone has a PANDAS child on prophylactic Keflex, and if so, at what dose? My son has finally been diagnosed with PANDAS after having a second strep infection 2 wks ago. His first was back in March and 2 days later started having a neck/head jerking tic. I've posted here a few times, but read several times a week, and have so much confidence in the ones who post here. We were on 10 days of Keflex (just finished the last dose on Saturday). Those 10 days were AWESOME!! We saw very few tics( if any) most days, mood was good, and he was sleeping all night in his bed. This is the best he's done since this all began. We started Zithromax prophylactically yesterday morning, and can already see we're backsliding a little. His tic has increased and he came to my room the last 2 nights.

I just wonder if we should give the Zith more time, or that possibly he's resistant to it? He was on Zith for a month back in June, and we didn't see much of a difference then either. Any advice/suggestions would be much appreciated. Thanks, Glenda

[EAMom]

Glenda,

 

Wow! great news on the response to Keflex!

 

Sorry I don't have a dose for you...my daughter (about 45-50 pounds) was on a stronger version of Kelflex (2nd generation cephalosporin) in May but it didn't help her at all.

 

In June we started Azithromycin and it has worked wonders (we're still on the same dose we started at, 250mg/day.)

 

I think it just shows that you have to be persistant with this disease and keep on going until you find out what works for your child.

 

I would say that if your son didn't respond to Azithromycin after a month, and you don't think it's helping now, then you should use Kelflex for prophalaxis. I have heard of PANDAS kids on Keflex.

 

Have you tried amoxicillin or pennicillin? Rheumatologists like pennicillin for prophalaxis since it is so narrow spectrum. That is one problem with Azithormycin anyway, it is pretty broad spectrum, so you are more likely to get resistance to other bugs. (We are staying on the Az since our daughter didn't respond to amoxicillin and don't want to run the experiment of taking her off the Azithromycin for a long time.) I don't remember if Keflex is more or less broad spectrum than Azithromycin.

 

Anyway, that is something you might consider eventually, is switching from Keflex to Pennicillin for prophalaxis. For now, I would stay with what works.

 

Did you son "just" have tics or were there other symptoms (depression, OCD, emotional lability)...from your post it sound like you did have the mood changes and separation anxiety?

[nurseg]

Glenda,

 

Wow! great news on the response to Keflex!

 

Sorry I don't have a dose for you...my daughter (about 45-50 pounds) was on a stronger version of Kelflex (2nd generation cephalosporin) in May but it didn't help her at all.

 

In June we started Azithromycin and it has worked wonders (we're still on the same dose we started at, 250mg/day.)

 

I think it just shows that you have to be persistant with this disease and keep on going until you find out what works for your child.

 

I would say that if your son didn't respond to Azithromycin after a month, and you don't think it's helping now, then you should use Kelflex for prophalaxis. I have heard of PANDAS kids on Keflex.

 

Have you tried amoxicillin or pennicillin? Rheumatologists like pennicillin for prophalaxis since it is so narrow spectrum. That is one problem with Azithormycin anyway, it is pretty broad spectrum, so you are more likely to get resistance to other bugs. (We are staying on the Az since our daughter didn't respond to amoxicillin and don't want to run the experiment of taking her off the Azithromycin for a long time.) I don't remember if Keflex is more or less broad spectrum than Azithromycin.

 

Anyway, that is something you might consider eventually, is switching from Keflex to Pennicillin for prophalaxis. For now, I would stay with what works.

 

Did you son "just" have tics or were there other symptoms (depression, OCD, emotional lability)...from your post it sound like you did have the mood changes and separation anxiety?

 

Hi Lisa,

Thanks for your reply. We did try Pennicillin VK back in June for 6 wks, before the month of Zith. Not much help with it either. In terms of my son before the strep, he never had tics. He has always been a sensitive child(he reminds me of myself as a child), maybe a little nervous, but nothing I would label as "abnormal" before the strep. He has had some OCD(mild), and definite behavior changes. He has had some bad outbursts of anger especially when doing homework since this started in March. This behavior is totally out of character for him. He has always been my "easy" child. Very sweet, easy going, and mild mannered. The tic is the main problem because it's so obvious, my concern is someone at school will make fun of him which will crush him b/c he is so sensitive. I've sent an E-mail to our DAN doctor. Hopefully, he can prescribe more Keflex at a prophylactic dose. Thanks again, Glenda

[Kiera]

My ds 8 has been on keflex 250mg twice daily since August with a very good response (he's 47lbs). The plan is to lower him to keflex three times a week for prophylaxis probably at his next visit next month.

[butterflymom]

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Edited October 5, 2015 by tampicc

[Kayanne]

Is Keflex that long lasting that you can only dose 3 times a week, and still have adequate protection? I didn't think it was. I will try to look it up.

 

My daughter takes 150 mg of omnicef daily as a prophylaxis.

 

My ds 8 has been on keflex 250mg twice daily since August with a very good response (he's 47lbs). The plan is to lower him to keflex three times a week for prophylaxis probably at his next visit next month.

 

 

Glenda,

 

It does make sense to stick with what works. If keflex worked, then I would try to go back on it. Keflex and zith are both different classes of anitbiotics, so it makes sense to switch back. There are some strains of strep resistant to zith--but generally in the East (PA & Ohio).

 

I would just like to point out that a lot of parents have seen good results with full-strength antibiotics. If you drop your child down to a prophylaxis dose of keflex, you may not see the same results. My daughter has had 2 PANDAS episodes, and we didn't drop her to a prophylaxis dose until she was 100%.

 

Prophylaxis antibiotics play an important part in this disorder, but only to prevent future infection, not to actually treat a current episode. This is just my opinion. I hope you can sort it out with your doctor.

 

I should add that my daughter does not have any other complicating infections, was diagnosed and treated (with prednisone tapers) early, so therefore, we saw excellent results. Many families have struggled for too long without proper treatment, and in those cases it does get more complicated.

 

Good Luck.

[Kayanne]

---20 days of cefdinir, prescribed by ped, but reduced to 500 mg, once a day---at this point he did some backsliding, and I think dosing twice a day, and a larger dose makes a difference.

I totally agree with you about the twice a day dosing of cefdinir (omnincef). One of our pediatricians put my daughter on 150mg 2x/day when her PANDAS symptoms flared. For my daughter's weight (47lbs), 250mg daily would have been sufficient--so she was taking 50mg more a day. Also, the pediatrician had said for strep she just likes to break it up so the coverage is more consistent--some of the websites with information on omnnicef also state this is an option for strep. Omnicef (cefdinir) does last long enough for once a day dosing, but we saw great results on the twice a day dosing.

 

By the end of the 10 days on Omnicef, we were beginning to doubt if a trip to her PANDAS doc was even warranted. Dr. L extended the Omnicef, but what has really helped my daughter recover quicker is month-long prednisone. We have had excellent and lasting results.

[kferricks]

My DD 10 is on Keflex twice daily 500mg. While I have seen improvement, the OCD and crying at night are still here. Last night we decided that maybe it is not strong enough or she needs another kind of abx. So we gave her the zolof untill we see Dr. B in Dec. Still going to keep her on the Keflex because I'm scared to death that things will get even worse....

[Kayanne]

My DD 10 is on Keflex twice daily 500mg. While I have seen improvement, the OCD and crying at night are still here. Last night we decided that maybe it is not strong enough or she needs another kind of abx. So we gave her the zolof untill we see Dr. B in Dec. Still going to keep her on the Keflex because I'm scared to death that things will get even worse....

I'm sorry you are having such a hard time. Has any doctor told you that it takes 6-8 weeks for an SSRI to fully take effect? I am just thinking that perhaps you could get by with a supplement that helps to boost serotonin, such as L-tryptophan or 5HTP...I'm pretty sure (but not positive) that you will see results with those within days...at least my husband did when he started to take L-tryptophan.

 

DO NOT combine these supplements with an SSRI, you would have to stop the zoloft first.

[kferricks]

My DD 10 is on Keflex twice daily 500mg. While I have seen improvement, the OCD and crying at night are still here. Last night we decided that maybe it is not strong enough or she needs another kind of abx. So we gave her the zolof untill we see Dr. B in Dec. Still going to keep her on the Keflex because I'm scared to death that things will get even worse....

I'm sorry you are having such a hard time. Has any doctor told you that it takes 6-8 weeks for an SSRI to fully take effect? I am just thinking that perhaps you could get by with a supplement that helps to boost serotonin, such as L-tryptophan or 5HTP...I'm pretty sure (but not positive) that you will see results with those within days...at least my husband did when he started to take L-tryptophan.

 

DO NOT combine these supplements with an SSRI, you would have to stop the zoloft first.

 

How long would we have to stop the zolof before we try the L-tryptophan? We took her off the zolof hoping to see a bigger improvement while taking the keflex. We did see a bit more improvement but in other areas it seems to have regressed. which is why we were thinking about putting her back on the zolof.

 

thanks for the info.

[Kayanne]

My DD 10 is on Keflex twice daily 500mg. While I have seen improvement, the OCD and crying at night are still here. Last night we decided that maybe it is not strong enough or she needs another kind of abx. So we gave her the zolof untill we see Dr. B in Dec. Still going to keep her on the Keflex because I'm scared to death that things will get even worse....

I'm sorry you are having such a hard time. Has any doctor told you that it takes 6-8 weeks for an SSRI to fully take effect? I am just thinking that perhaps you could get by with a supplement that helps to boost serotonin, such as L-tryptophan or 5HTP...I'm pretty sure (but not positive) that you will see results with those within days...at least my husband did when he started to take L-tryptophan.

 

DO NOT combine these supplements with an SSRI, you would have to stop the zoloft first.

 

How long would we have to stop the zolof before we try the L-tryptophan? We took her off the zolof hoping to see a bigger improvement while taking the keflex. We did see a bit more improvement but in other areas it seems to have regressed. which is why we were thinking about putting her back on the zolof.

 

thanks for the info.

Honestly, I don't know...I would try to google for you, but today has been really busy, and I'm heading off to work. Perhaps someone who knows can chime in?

 

Sorry, I'm not more helpful

 

Good Luck.

[Kayanne]

I'm sorry you are having such a hard time. Has any doctor told you that it takes 6-8 weeks for an SSRI to fully take effect? I am just thinking that perhaps you could get by with a supplement that helps to boost serotonin, such as L-tryptophan or 5HTP...I'm pretty sure (but not positive) that you will see results with those within days...at least my husband did when he started to take L-tryptophan.

 

DO NOT combine these supplements with an SSRI, you would have to stop the zoloft first.

 

Honestly, I don't know...I would try to google for you, but today has been really busy, and I'm heading off to work. Perhaps someone who knows can chime in?

 

Sorry, I'm not more helpful

 

Good Luck.

 

I can only find information about weaning off of zoloft for people who have taken it for some time.

 

My husband took zoloft for about 3 years. I asked him, and he seems to think that if you only gave one dose, then you could probably stop altogether, wait a day or 2, then start with a serotonin supplement. However, I would advise that you ask a doctor first. The doctor may not know anything taking the L-tryptophan or 5HTP, but they should be able to tell you how long zoloft stays in the blood, and if after giving it for a few days requires a weaning process.

 

I don't think you should rely on my husband's guess about your situation...neither of us has any medical background.

 

I am really hoping someone who is more knowledgeable about serotonin supplements and SSRI's will chime in.

 

Sorry, that I can't be more helpful.

 

Good Luck.