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How many mg is 5ml of Augmentin?

 

I would try 500mg of Azithromycin 1x daily for a month. (Also, add in Ibuprofen 200 mg 3x daily to start for the first few days, then 1-2x daily longer term.)

 

I would also get throat cultures on all family members (checking for carriers). Also, consider getting new titers on your PANDAS son (as well as other family members if the cultures are neg.) If there is a carrier in the family, that will impact your PANDAS son.

 

Also, does anyone know if there is Lyme (etc.) in Austrailia? That might be something else to test for. Also, mycoplasma would be good to check for...

 

The "very swollen glands" in his neck make me think that there is still some type of infection there.

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Okay, I looked this up. Augmentin liquid comes in different strengths, so depending on the concentration, your son also is likely on too low a dose of Augmentin:

 

S

trengths of Augmentin

Augmentin suspension (liquid) is available in the following strengths:

 

 

* Augmentin 125 mg per 5 mL (available in 75, 100, and 150 mL bottles) -- banana flavor, containing 125 mg of amoxicillin and 31.25 mg of clavulanic acid per teaspoonful (per 5 mL)

 

 

 

* Augmentin 200 mg per 5 mL (available in 50, 75, and 100 mL bottles ) -- orange flavor, containing 200 mg of amoxicillin and 28.5 mg of clavulanic acid per teaspoonful (per 5 mL)

 

 

 

* Augmentin 250 mg per 5 mL available in 75, 100, and 150 mL bottles) -- orange flavor, containing 250 mg of amoxicillin and 62.5 mg of clavulanic acid per teaspoonful (per 5 mL)

 

 

 

* Augmentin 400 mg per 5 mL (available in 50, 75, and 100 mL bottles) -- orange flavor, containing 400 mg of amoxicillin and 57 mg of clavulanic acid per teaspoonful (per 5 mL).

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Okay, I looked this up. Augmentin liquid comes in different strengths, so depending on the concentration, your son also is likely on too low a dose of Augmentin:

 

Hi, KelC:

 

This was my 1st thought as well when I read your post. You undoubtedly remember from "Saving Sammy" that too low a dose was ultimately ineffective for Sammy Maloney. They started him on pure penicillin with temporary improvement that quickly faded. Then had to ramp up his augmentin XR dose to 1000 mg twice daily to see and maintain progress. Any attempt to lower that dose during the 1st year led to a resurgence of symptoms.

 

Our experience has mirrored that. Our son was on the "standard" prophylactic dose of augmentin (500 mg once daily) for many months, and it was useless: he contracted further infections while on that dose. When we got a doc to write the script for the "Saving Sammy" dose of XR (1000 mg twice daily), we saw significant improvement within 10-14 days that has remained steady for over a year now. XR has given our PANDAS son his life back!

 

So I'd caution that - with PANDAS - if the abx dose is too low, or too short, it does little if any good. Another abx is certainly worth a shot, but I'd also suggest asking your doc to increase your son's augmentin dose and give it a solid month at least. Our son is about 55 kg and 14 years old, btw.

 

Also, we tried an SSRI (zoloft) and many other psych meds (ativan, klonopin, zyprexa, risperdal, etc.). They were worse than useless for our son - they actually made symptoms much worse. Proceed with caution on those, definitely start with a very low dose and increase it very slowly if you go down that road.

 

Best of luck, and welcome!

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Our daughter was put on Prozac (an SSRI) by a psychiatrist shortly after diagnosis. It did more harm than good. It made her giddy and impulsive and caused a loss of inhibition. Once I took her off of the Prozac against our psychiatrist's advice, she was much better.

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Ditto on the SSRIs; this giddy, goofy, impulsivity, ect. is known as behavioral activation and is common in PANDAS. Then, some docs will put your child on the psych med rat wheel where they prescribe a mood stabilizer to balance out the behavioral activation, but then the child can become cognitively blunted, dull; then they want to add a stimulant, ect., ect. Our experience was a disastrous mess and years of wasted time before we found out it was PANDAS. You are way ahead of the game!

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I keep losing my posts! I'll keep this short. We did not try SSRI's largely because our untreated peak of OCD was at around 8-12 weeks with slow improvement from there, and we did not want to use a medication long term that might not be needed - and that also took 4-8 weeks to work. It would be hard for us to know what was working. Since you object to using this at this point, you may want to point out to your doc that ERP therapy is strongly recommended over SSRI's for children, and ask for a referral while you try a stronger dose of abx. This may buy you some time, and worst case, your child may learn some helpful tools. Here is the study that shows that for regular OCD in kids, SSRI's are not the first line recommendation: http://pn.psychiatryonline.org/content/39/23/32.1.full. We use azith, and have seen great results with that. Different children, different triggers - sometimes need different abx. While he looks for a therapist and you get on the list, you should have another month to try treatment for the Cause of the issue - if you had success with prednisone & abx before, you know it is an infectious trigger.

 

Would your doc consult with a US doc?

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Okay, I looked this up. Augmentin liquid comes in different strengths, so depending on the concentration, your son also is likely on too low a dose of Augmentin:

 

S

trengths of Augmentin

Augmentin suspension (liquid) is available in the following strengths:

 

 

* Augmentin 125 mg per 5 mL (available in 75, 100, and 150 mL bottles) -- banana flavor, containing 125 mg of amoxicillin and 31.25 mg of clavulanic acid per teaspoonful (per 5 mL)

 

 

 

* Augmentin 200 mg per 5 mL (available in 50, 75, and 100 mL bottles ) -- orange flavor, containing 200 mg of amoxicillin and 28.5 mg of clavulanic acid per teaspoonful (per 5 mL)

 

 

 

* Augmentin 250 mg per 5 mL available in 75, 100, and 150 mL bottles) -- orange flavor, containing 250 mg of amoxicillin and 62.5 mg of clavulanic acid per teaspoonful (per 5 mL)

 

 

 

* Augmentin 400 mg per 5 mL (available in 50, 75, and 100 mL bottles) -- orange flavor, containing 400 mg of amoxicillin and 57 mg of clavulanic acid per teaspoonful (per 5 mL).

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Thankyou so much to everyone who has replied. To clarify - the 5ml contains the 400mg of Amoxicillin so he's getting 800mg daily (weight around 33kg) I would have thoguht that this was a fairly decent dose. As the doctor was reluctant to try the use of the abx as a prophylactic I doubt that he will agree to an increase in the dose.

 

My son has had therapy for the initial severe anxiety that he had and he has had enormous benefit from it. His therapist left the practice and it was felt that he had made enough progress. As the OCD is now the major symptom - along with the confusion, lack of concentration etc - I wasnt sure that the therapy could be of much further benefit and we felt it was also important to focus on addressing the underlying cause. Has anyone had success with therapy for these trypr of issues.

 

I have told the doctor that I wanted to avoid the SSRI's for this very reason - I dont want a bandaid measure that covers up the problem and doesnt address it. And in particular - doesnt alter his personality any further - we already feel as though we have "lost" who he was.

 

I dont believe that our doctor will consult with a US doctor - I will ask the question however Please dont get the impression that our Paed. is being unhelpful - he is a lovely guy who really wants to help but he has I guess a standard set of information regarding treatment and is understandably reluctant to move outside his comfort zone and take on board information that I have sourced online - particulary when it is not Australian research.

 

Has anyone heard of any doctors in Australia who specialise?

 

One more thing - has anyone not had success with the Augmentin and found success with the Azith.?

 

I will take on board all of your suggestions - Thanks so much again! Off to the doctor in a couple of hours - not sure what time it is there but if anyone could offer anything further to this I would be grateful...

Edited by KelC
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KelC --

 

I had another acquaintance in Australia in a similar position, and I believe he has struggled to find local doctors who understand PANDAS, as well; I do believe, however, that he finally arranged for his doctor to have a conference call with Dr. K. here in the states regarding some treatment protocols. Perhaps that would be an option for you.

 

I also want to say that we have had a different response via the judicious use of an SSRI. While I would agree with some of the experiences here as well as the Murphy/Storch paper you've already been given a link to, I will also offer that we're currently supplementing our DS13's care with not only Augmentin, supplements and ERP but also low-dose Zoloft. And when I say low-dose, I mean low-dose. Some of these kids can become "activated" by as little as 1/5th the "average" dose, but our experience illustrates that an appropriately low dose can be helpful.

 

Our son had a long history of diagnosed OCD before we found PANDAS, so he had been taking an SSRI for a number of years, always at a low dose. It was helpful, and I don't see it as merely "covering up" an issue, necessarily; if serotonin and/or dopamine levels in a brain are not properly regulated for whatever reason, then an SSRI may be of valid assistance. That being said, having discovered now that his OCD is "triggered" by strep exposure, I would never go back to addressing his condition with only therapy or SSRI's; we know now that Augmentin is key to his health. Still, his management over his OCD behaviors, we felt, warranted some additional assistance, and so we've decided that we will attack this thing from all sides, including an SSRI.

 

Before abx, our psych took the typical step of consistently increasing the SSRI dosage when our DS failed to respond, and, yes, we saw the activation phenomenon and an actual increase in the undesirable behaviors, rather than a decrease. But after we began abx treatment and this forum gave us access to important information like the Murphy study, we were better informed and able to guard against over-dosing our DS.

 

So, again, just our experience and not necessarily a good choice for everyone. But because we've had such positive results, I really want to add to the balance of the viewpoints here. Plus, the Murphy/Storch study does not malign the use of SSRI's altogether for PANDAS kids; actually, it notes that there were some positive results when coming back to treatment beginning with a very low dose. Just something to consider alongside all available information . . .

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Hi I am new to this forum and am writing from Australia - where it seems that knowledge and information about PANDAS is very scarce.

 

Hi KelC,

I'm also in Australia - in Melbourne, and have been reading this forum for a while now, but not posted before. There is a doctor who is known to be the PANDAS specialist in Australia. She is in Sydney - Dr Robyn Cosford. (She has published - use Google to find - she is also very interested in chronic fatigue.) Also, Biomed doctors are likely to know the protocols. If you've not tried a Biomed doctor, do look up the Biomed practitioners on the Mindd website for a Biomed doc in your area. They are DAN trained. There are a few in Melbourne.

Good luck with your ped...all ours wanted to do was put our boy on meds. My understandiung is that if there isn't enough seratonin for the SSRI to work on, then problems can ensue. If you go that way, start with a low dose... Good luck!

Ozimum

Edited by Ozimum
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Hi I am new to this forum and am writing from Australia - where it seems that knowledge and information about PANDAS is very scarce. I have a very long story in regard to my 8 year old son but no time to tell the full story right now. I have a Paed. appointment in the morning and he will want feedback on the result of a months trial with Augmentin. We have seen only very slight improvement over the month on a dosage of 5ml twice a day (weight around 33kg's) We had initial major improvement with a steroid burst and Amoxil for a week but the improvement fell away quickly after stopping. We then tried low dose steroids with minimal improvement and now the Augmentin (which I had to push our dr to trial as I had been reading Beth Maloneys book ) this has not yielded much of a result. Our major problems are OCD - (consant questioning , checking, handwashing) some separation anxiety and just a general "unwell" appearance eg "sad" eyes, pale and very swollen glands in his neck. Plus confusion and lack of concentration and an inabilty to follow instructions or keep up with conversation. These symptoms have been sudden and radical - he was never like this before this horrible condition struck and we are heartbroken watching our once vibrant darling boy disappear before our eyes. He has an identical twin brother who is perfectly well. Anti DNase and ASO's were very elevated at the time of diagnosis (around 3 months ago) Should we ask to retest and if so will it tell us anything?

Our doctor has asked that we try SSRI's if we had no result with the Augmentin. I am very reluctant and would like to hear of others experiences and also what alternatives we are left with. We have discussed the IVIG but we are reluctant ot do this for fear of serious side effects. I hope someone can offer some advice for us to take to the doctor tomorrow.... Thanks in advance for your help and advice.

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Hi KelC,

 

I want to send you a PM but I haven't figured out how to do that! I would be very happy to talk further, if you would like. Where are you?

 

Our experience of OCD has been very hairy to deal with. I HATE strep! We are slowly getting to grips with underlying gut issues (I had no idea!) and a compromised immune system, so this is where the Biomed has been so-o-o-o good for us. Vit D level was a jaw dropper!

Ozimum

 

P.S. I think I've managed to send you a message...scroll up to the right hand corner of screen.

Edited by Ozimum
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