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Questions about antibiotics, supplements, diet


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I have some questions for those of you that have gone the antibiotic route.

 

A little history on my son. He's 10 and weighs 78 lbs. I noticed his OCD symptoms during the summer of 2007. They were much worse by December and he was diagnosed formally in February 2008. We've done several rounds of therapy, usually during the school year because his symptoms seem to let up considerably by Summer (less exposure to strep I'm thinking). From 2006 to 2008 he had strep many times. In late November 2008 we finally had his tonsils taken out. Prior to the operation we realized he had a sinus infection and strep again so he went on antibiotics pre-op. I can't remember what they were (not amox). Then a 2 week course post-op of amoxicillan. We then had the best Christmas season we've had since he was 5. We never dreamed it was the antibiotics. In February his symptoms were back full force and we put him on Zoloft. Usually by March his symptoms are better again (end of strep season?) but we thought it might be the Zoloft. By summer he was much better again. When school started his symptoms came roaring back and added a whole slew of tics. His placement tests were awful. Usually he places in the high language arts and high math groups and his teachers are amazed at how bright he is. This year he was placed in low math and middle language arts. His handwriting was so horrid on his tests that the principal showed me to prove he was where he belonged and I had to admit that it was really awful. Looking back I now realize that his brother and several of his friends were diagnosed with strep that same week. Instead I had him tested for a learning disorder. The testing happened about a month later and the occupational therapist said his handwriting was OK. By then it was better. I assumed it was getting back into practice after summer. Because his tics had gotten worse I purchased the Bontech supplements. In October I had a throat culture done and it came back negative. His doctor wanted to bump his Zoloft up to 150 mg. I was questioning whether it was even doing anything at that point. Within 2 days my son was totally manic and could hardly sit still. I knew it was the medication and we began to wean him off entirely. He finished his last pill last week and we have noticed zero difference except he gained 15 pounds in a year. We started a new therapist in December 2009 who suggest Inositol and SamE. He has been taking 18g of Inositol since then and his disturbing thoughts have completely vanished (afraid he might kill the cat he loves so much, afraid he might kill his little brother and spend the rest of his life in prison, afraid that he wants to rape me...fun stuff). So at this point he is taking a whole regimen of supplements and I'm a little over zealous about high fructose corn syrup, caffeine, MSG and Red #40. He has been taking 15 Bontech caps, oregano oil, 200 mg SamE, zinc, chroumium picolinate, inositol, 1000 mg fish oil, flax oil, vitamin C, vitamin D and 3 mg of melatonin. I had entertained the PANDAS possibility since it all began, but until reading Saving Sammy I didn't really understand how it worked and I didn't think they treated it any differently than regular OCD and TS so I didn't pursue it. After reading the book I went back and looked through journals and medical records and wrote it all out and realized that it probably is. His doctor doesn't know enough to make a formal diagnosis, so we are treating it "as if" to see what happens. I'm confident that the antibiotics will help.

 

I must admit that his symptoms have never been incapacitating. He is definitely on the milder end of the spectrum compared to so many other kids I've heard and read about. He is functioning and he is happy. As long as he doesn't have the dark thoughts, at this point he doesn't really mind the other stuff too much. His friends and school mates have been very accepting but with Jr. High looming, I worry it won't stay that way. Also, he is starting to go through puberty and I'm worried that the hormonal changes with make things worse. And his neck tics do make him sore after a few bad days. I worry about long term damage.

 

OK so here are my questions:

 

He is taking a 10 day course of Augmentin. The doctor prescribed 875 mg twice a day. So 1600mg roughly a day. That seems about right to me after reading Saving Sammy. His doctor couldn't seem to find an XR version at that dose. I asked for the XR version mainly because I thought I read somewhere that it seems to be easier on the stomach. Is that true?

 

Those who have done antibiotics, have you kept up with the usual supplements as well? Many of the supplements already can cause stomach upset or loose stools so I'm wary to add them to Augmentin.

 

Did your child have stomach problems? When my son was a toddler he had TONS of ear infections and ended up with a nasty yeast infection from one of the antibiotics. I've added a Culturelle between doses. Is that enough? Should he be eating yogurt or drinking kefir as well?

 

Is 10 days long enough to see a difference? I've read that it can take months, especially the longer the child has had it. He's had it at least 4 years, maybe longer. His doctor was concerned about the idea of prophylactic antibiotic use, which is understandable. He did mention that the NIMH doesn't recommend them, but didn't rule them out. I watched a presentation by Dr. Swedo last night where she mentioned that they were very effective. If I don't see a big difference in 10 days, I'm worried his doctor won't agree to keep going. Any advice?

 

If the antibiotics are effective, have you stayed with the supplements and/or restricted diet? Obviously some of the supplements I would keep, like fish oil and Vitamin D regardless. I'm just wondering when to stop the inositol at such high doses. And while I know artificial food stuffs aren't good for anyone, it would be nice not to worry about birthday parties and holidays so much. His tics are soooo much worse if he's had red dye.

 

I guess I'm still trying to piece it all together because his doctor fully admits that I know more about it than he does at this point so he is relying on me to bring both scientific evidence as well as anecdotal information to him in two weeks. I'm keeping a detailed journal as well. We should have his tests back today and then I guess I'll have a better picture of what is going. on.

 

Any information you all can provide would be greatly appreciated!

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Hi,

my son is also 10 I try to keep him eating pretty healthy but he is 10 so sometimes I need to let him ---we don't use any supplements --he has been on Augmentin sicne October in conjunction with topamax just started to tic again this week so not sure what is going on. I don't think 10 days is long enough--if it is truly PANDAS then long tern antibiotics are indicated.

 

Deanna

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Wow! Lots of questions! I'll try 'em one at a time.

 

He is taking a 10 day course of Augmentin. The doctor prescribed 875 mg twice a day. So 1600mg roughly a day. That seems about right to me after reading Saving Sammy. His doctor couldn't seem to find an XR version at that dose. I asked for the XR version mainly because I thought I read somewhere that it seems to be easier on the stomach. Is that true?
Yes, I believe that regular Augmentin at 875 mg. per dose is the next closest to the Augmentin XR dose at 1,000 mg. per. However, because the XR actually has a LOWER clauvanic acid component in it at 1,000 mg. than does regular Augmentin at 875 mg., I'm not sure why he wouldn't be a candidate for the "higher" dose of XR. Also yes, in our experience, the XR has been easier on our son's gut than was the regular Augmentin at 875 mg. per dose; not sure if that's due to the lower clauvanic acid contingent or if it's attributable to the time-release component which more effectively spaces out the medicine hitting his system.

 

Those who have done antibiotics, have you kept up with the usual supplements as well? Many of the supplements already can cause stomach upset or loose stools so I'm wary to add them to Augmentin.

 

Yes, we still do other supplements as well, but we try to space them out so that he's not trying to digest massive amounts of anything at one time. His XR is morning and night, probiotics are throughout the day (before school, after school, before bed), NAC, a B-complex and his other meds (he's still on a low dose of Luvox -- an SSRI, and Intuniv -- an ADHD med) in the morning, then Vitamin D3, green foods supplement and multi-mineral at dinner. Finally, melatonin and his last probiotic before bed.

 

Did your child have stomach problems? When my son was a toddler he had TONS of ear infections and ended up with a nasty yeast infection from one of the antibiotics. I've added a Culturelle between doses. Is that enough? Should he be eating yogurt or drinking kefir as well?
My son had more gut/tummy issues on the regular Augmentin than he has had on the XR, but we haven't let up on the probiotics at all, nonetheless. Plus, yes, he eats lots of yogurt; a cup for breakfast and then a cup at lunch . . . sometimes an extra cup after school or for dessert. He doesn't like Kefir. He also eats a half banana every morning as that helps prevent the loose stools, and he's naturally a little low on potassium levels, too, so this helps. Culturelle is supposed to be excellent as a probiotic; we use FloraStor and a Super-Acidolpholus Probiotic from Trader Joes that also includes some "good" yeast and lactodolpholus, etc.

 

Is 10 days long enough to see a difference? I've read that it can take months, especially the longer the child has had it. He's had it at least 4 years, maybe longer. His doctor was concerned about the idea of prophylactic antibiotic use, which is understandable. He did mention that the NIMH doesn't recommend them, but didn't rule them out. I watched a presentation by Dr. Swedo last night where she mentioned that they were very effective. If I don't see a big difference in 10 days, I'm worried his doctor won't agree to keep going. Any advice?

 

In our case, we saw "results" in about 48 hours, but then he leveled out and the improvements took turns stepping forward and back now and again over time. The key for us, though, was that within 8 to 9 days of taking him off entirely, thinking maybe after 3 or 4 weeks, the abx had done all it could, he would regress dramatically. So we'd put him back on the abx again. Our son has also had it for a long time . . . 6 years, would be my guess . . . so we expect it to take a while to improve in a way that "sticks." We're about to enter Month 4 on the abx. My advice would be to keep a fairly detailed journal about his behaviors. It might not be an entirely horrible thing . . . especially since your son is at least functional . . . if he were to be taken off after that 10 days and then you and the doctor could watch what would happen. Again, in our experience, it took about 8 to 9 days for the old, "dismissed" behaviors to return in full force. At any rate, with a journal in hand, you have more information to lobby for continuation of the abx. With our pediatrician, she can be difficult to reach by phone, and appointments are usually a week or more out, especially if you want to see her instead of one of her partners or a nurse practitioner, so I've taken to dropping her letters every couple of weeks (she doesn't use email, either), just to keep her up to speed on DS12's progress and to reiterate how grateful we are for her continued support via the abx.

 

If the antibiotics are effective, have you stayed with the supplements and/or restricted diet? Obviously some of the supplements I would keep, like fish oil and Vitamin D regardless. I'm just wondering when to stop the inositol at such high doses. And while I know artificial food stuffs aren't good for anyone, it would be nice not to worry about birthday parties and holidays so much. His tics are soooo much worse if he's had red dye.

 

Yes, we'll stick with the supplements, for sure. As for a restricted diet, I think that goes to quality of life; maybe you can ease up a bit. As for the inositol, do be mindful that this is supposed to work like a natural SSRI, so if he is serotonin deficient naturally, keeping up with that is probably a good idea, as well. I've heard of no side effects associated with it.

 

Good luck!

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I continue with his Omega 3's, multivitamin with DHA and it has a low amount of inositol in it. I stay more organic than I used to be. I try my hardest to weed out food dyes, high fructose corn syrup, etc. I don't see a direct reaction from those things, but I see it as trying to keep his body as "clean" and "pure" as possible. I don't know if anything like that could have somehow aided in messing up his immune system.

 

I do let him have occasional cupcakes with bright frosting that screams "I am all artificial", but I also don't do all the time so it really is a treat for them.

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I have some questions for those of you that have gone the antibiotic route.

 

A little history on my son. He's 10 and weighs 78 lbs. I noticed his OCD symptoms during the summer of 2007. They were much worse by December and he was diagnosed formally in February 2008. We've done several rounds of therapy, usually during the school year because his symptoms seem to let up considerably by Summer (less exposure to strep I'm thinking). From 2006 to 2008 he had strep many times. In late November 2008 we finally had his tonsils taken out. Prior to the operation we realized he had a sinus infection and strep again so he went on antibiotics pre-op. I can't remember what they were (not amox). Then a 2 week course post-op of amoxicillan. We then had the best Christmas season we've had since he was 5. We never dreamed it was the antibiotics. In February his symptoms were back full force and we put him on Zoloft. Usually by March his symptoms are better again (end of strep season?) but we thought it might be the Zoloft. By summer he was much better again. When school started his symptoms came roaring back and added a whole slew of tics. His placement tests were awful. Usually he places in the high language arts and high math groups and his teachers are amazed at how bright he is. This year he was placed in low math and middle language arts. His handwriting was so horrid on his tests that the principal showed me to prove he was where he belonged and I had to admit that it was really awful. Looking back I now realize that his brother and several of his friends were diagnosed with strep that same week. Instead I had him tested for a learning disorder. The testing happened about a month later and the occupational therapist said his handwriting was OK. By then it was better. I assumed it was getting back into practice after summer. Because his tics had gotten worse I purchased the Bontech supplements. In October I had a throat culture done and it came back negative. His doctor wanted to bump his Zoloft up to 150 mg. I was questioning whether it was even doing anything at that point. Within 2 days my son was totally manic and could hardly sit still. I knew it was the medication and we began to wean him off entirely. He finished his last pill last week and we have noticed zero difference except he gained 15 pounds in a year. We started a new therapist in December 2009 who suggest Inositol and SamE. He has been taking 18g of Inositol since then and his disturbing thoughts have completely vanished (afraid he might kill the cat he loves so much, afraid he might kill his little brother and spend the rest of his life in prison, afraid that he wants to rape me...fun stuff). So at this point he is taking a whole regimen of supplements and I'm a little over zealous about high fructose corn syrup, caffeine, MSG and Red #40. He has been taking 15 Bontech caps, oregano oil, 200 mg SamE, zinc, chroumium picolinate, inositol, 1000 mg fish oil, flax oil, vitamin C, vitamin D and 3 mg of melatonin. I had entertained the PANDAS possibility since it all began, but until reading Saving Sammy I didn't really understand how it worked and I didn't think they treated it any differently than regular OCD and TS so I didn't pursue it. After reading the book I went back and looked through journals and medical records and wrote it all out and realized that it probably is. His doctor doesn't know enough to make a formal diagnosis, so we are treating it "as if" to see what happens. I'm confident that the antibiotics will help.

 

I must admit that his symptoms have never been incapacitating. He is definitely on the milder end of the spectrum compared to so many other kids I've heard and read about. He is functioning and he is happy. As long as he doesn't have the dark thoughts, at this point he doesn't really mind the other stuff too much. His friends and school mates have been very accepting but with Jr. High looming, I worry it won't stay that way. Also, he is starting to go through puberty and I'm worried that the hormonal changes with make things worse. And his neck tics do make him sore after a few bad days. I worry about long term damage.

 

OK so here are my questions:

 

He is taking a 10 day course of Augmentin. The doctor prescribed 875 mg twice a day. So 1600mg roughly a day. That seems about right to me after reading Saving Sammy. His doctor couldn't seem to find an XR version at that dose. I asked for the XR version mainly because I thought I read somewhere that it seems to be easier on the stomach. Is that true?

 

Those who have done antibiotics, have you kept up with the usual supplements as well? Many of the supplements already can cause stomach upset or loose stools so I'm wary to add them to Augmentin.

 

Did your child have stomach problems? When my son was a toddler he had TONS of ear infections and ended up with a nasty yeast infection from one of the antibiotics. I've added a Culturelle between doses. Is that enough? Should he be eating yogurt or drinking kefir as well?

 

Is 10 days long enough to see a difference? I've read that it can take months, especially the longer the child has had it. He's had it at least 4 years, maybe longer. His doctor was concerned about the idea of prophylactic antibiotic use, which is understandable. He did mention that the NIMH doesn't recommend them, but didn't rule them out. I watched a presentation by Dr. Swedo last night where she mentioned that they were very effective. If I don't see a big difference in 10 days, I'm worried his doctor won't agree to keep going. Any advice?

 

If the antibiotics are effective, have you stayed with the supplements and/or restricted diet? Obviously some of the supplements I would keep, like fish oil and Vitamin D regardless. I'm just wondering when to stop the inositol at such high doses. And while I know artificial food stuffs aren't good for anyone, it would be nice not to worry about birthday parties and holidays so much. His tics are soooo much worse if he's had red dye.

 

I guess I'm still trying to piece it all together because his doctor fully admits that I know more about it than he does at this point so he is relying on me to bring both scientific evidence as well as anecdotal information to him in two weeks. I'm keeping a detailed journal as well. We should have his tests back today and then I guess I'll have a better picture of what is going. on.

 

Any information you all can provide would be greatly appreciated!

 

We've continued to keep in place the supps that our DAN! started us on back when he was 11 (he's 16 now). Our dairy is organic. Moderated amounts of gluten. D3, cod liver oil, vit c, probiotics (therabiotic detox support by klaire labs), kefir, yogurt, melatonin and fluconazole for yeast. he's taking a lot right now in conjunction with augmenting 1000mg xr twice daily (day 14) and advil. He's currently unable to do school. at the point that we see improvement enough to return to school I'll add back pygnogenol, L-tyrosine & P5P for attention and focus. his stomach can't tolerate any more than what's we're currently doing. The last 3 for attention and focus really helped last time once we got anxiety and intrusive thoughts under control.

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My daughter is on 2000mg Augmentin XR as well as 500mg Azithromycin. She takes those with breakfast around 10 a.m. and before bed around 9 p.m. along with 200mg of Ibuprofen. She also takes a Culturelle mid-day. In the a.m. along with her antibiotics, she takes vitamin D3, multivitamin, and Omega 3's daily. Every other day she takes a B2. She has been on 40mg of Celexa as well, but as of today I'm shaving it down a little at a time to try to wean her off it. We'll see what happens. The more I read about pANDAS kids taking SSRIs the more I worry that it might be making things worse.

 

Initially I did see improvement at the 20mg dose. Then we raised it to 40mg and I saw no further obvious improvement. Then we figured out the whole PANDAS thing and I never quite dared change anything. Right now she's doing quite well overall and I'm willing to try tapering it.

 

Oh, and I meant to add that my daughter's diet is less than desirable but I'm just happy when she eats as she doesn't have much of an appetite. If she will eat a poptart, she gets one.

 

Angela

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My daughter is on 2000mg Augmentin XR as well as 500mg Azithromycin. She takes those with breakfast around 10 a.m. and before bed around 9 p.m. along with 200mg of Ibuprofen. She also takes a Culturelle mid-day. In the a.m. along with her antibiotics, she takes vitamin D2, multivitamin, and Omega 3's daily. Every other day she takes a B3. She has been on 40mg of Celexa as well, but as of today I'm shaving it down a little at a time to try to wean her off it. We'll see what happens. The more I read about pANDAS kids taking SSRIs the more I worry that it might be making things worse.

 

Initially I did see improvement at the 20mg dose. Then we raised it to 40mg and I saw no further obvious improvement. Then we figured out the whole PANDAS thing and I never quite dared change anything. Right now she's doing quite well overall and I'm willing to try tapering it.

 

Oh, and I meant to add that my daughter's diet is less than desirable but I'm just happy when she eats as she doesn't have much of an appetite. If she will eat a poptart, she gets one.

 

Angela

 

Angela,

so happy to hear your dd is doing quite well right now.

you mentioned vitamin D2, or it is vitamin D3 you takes? Should I test my son's blood to see if his vitamin D deficiency or just take it without any problem?

thanks,

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My daughter is on 2000mg Augmentin XR as well as 500mg Azithromycin. She takes those with breakfast around 10 a.m. and before bed around 9 p.m. along with 200mg of Ibuprofen. She also takes a Culturelle mid-day. In the a.m. along with her antibiotics, she takes vitamin D2, multivitamin, and Omega 3's daily. Every other day she takes a B3. She has been on 40mg of Celexa as well, but as of today I'm shaving it down a little at a time to try to wean her off it. We'll see what happens. The more I read about pANDAS kids taking SSRIs the more I worry that it might be making things worse.

 

Initially I did see improvement at the 20mg dose. Then we raised it to 40mg and I saw no further obvious improvement. Then we figured out the whole PANDAS thing and I never quite dared change anything. Right now she's doing quite well overall and I'm willing to try tapering it.

 

Oh, and I meant to add that my daughter's diet is less than desirable but I'm just happy when she eats as she doesn't have much of an appetite. If she will eat a poptart, she gets one.

 

Angela

 

Angela,

so happy to hear your dd is doing quite well right now.

you mentioned vitamin D2, or it is vitamin D3 you takes? Should I test my son's blood to see if his vitamin D deficiency or just take it without any problem?

thanks,

I mixed them up....I have them here in front of me now and they are B2 and D3. I am very sorry I mixed that up. ~ Angela

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