SpenceOhana Posted March 11, 2013 Report Share Posted March 11, 2013 Hello my DD9 is on her 2nd round of 5-day zith. She was just recently diagnosed with PANS or PANDAS (no strep detected, but she had respitory/sinus infection before onset). Anyhow, during the first round her OCD symptoms subsided, then returned 5 days later after first round. Ped agreed to prescribe another round. Going to talk with her tomorrow about doing at least 30 days or 3-6 weeks of antibiotics. But I did read on the PANDAS network site the following, "In some children, doctors have noticed the generic Azithromycin by name of “Greenstone” is not working well. SANDOZ and TEVA are doctor preferred.". I just realized that the Pharmacy has given us this Greenstone brand. What are all of your experiences with this? And are the other brands really expensive? Also I've given our daughter Ibuprofen along with her antibiotics. How long have you given your children Ibuprofen for you? Is it bad to give long term? Lastly when we started both rounds of antibiotics and Ibuprofen I noticed our DD9 pupils were dilated. It would only stay like this for 1 night. Is this just a PANDAS symptom? Link to comment Share on other sites More sharing options...
Hopeny Posted March 11, 2013 Report Share Posted March 11, 2013 I have two kids on long term Zith suspension right now. When they first started I requested Teva. On three ocassions when I tried to give it to my 3 YO she projectile vomited as soon as I gave it to her. I tasted it and it was absolutely vile. The Greenstone has less bits in it as is much less bitter. When I googled it I see that they were acquired by Pfizer (I think or another major co) which gave me a pretty good comfort level. I will not use Dr. Reddy though which is manufactured abroad. Curious to hear what others say. I didn't know Sandoz made Zith. We use Cefdinir too and for that its Sandoz. Link to comment Share on other sites More sharing options...
airial95 Posted March 11, 2013 Report Share Posted March 11, 2013 We've not seen any difference with the brands of azith. As for ibuprofen, we use it daily when in a bad spot. Our ped has indicated that as long as we don't exceed the recommended daily dose, it's safe for prolonged use. We usually give in the AM, and then redose after school if needed. If we don't redose after school but then find it's needed, we decide based on how long until bed time, if it's 1 1/2 hours or less, we try to ride it out. Dialted pupils - common symptoms in PANDAS kids in a flare. Link to comment Share on other sites More sharing options...
Agnes26 Posted March 11, 2013 Report Share Posted March 11, 2013 I'm no help with the abx question because DD is on Augmentin, but I'm curious about Dr. Reddy's. Our pharmacy switched to that brand round about the time DD started to decline. *sigh* It never occurred to me that the switch could be an issue. Hopeny, can you go into more detail about your concerns about the manufacturer? Sorry for the hijack. As for ibuprofen, our doctor said the same as Ariel's. Link to comment Share on other sites More sharing options...
Mayzoo Posted March 11, 2013 Report Share Posted March 11, 2013 (edited) I have tried greenstone, warrick and sandoz in the azith tabs. All seemed just fine. The FDA requires generics to be within a +/- 5% strength of the brand. If you have a preference, you will have to inform the pharmacy in advance (24hrs usually) and ask them to order the name you want. As long as you have insurance, the cost will remain the same. If you are a cash customer, you will not notice a significant difference, but maybe a slight difference. The pharmacy can tell you how much in advance of ordering it how much it will be. I worked in pharmacy for 20 years as a licensed technicians, and if your pharmacy is unwilling to work with you in this manner, you really need to find another pharmacy. I prefer independent pharmacy over chains as they are more likely to work with you, but with that said, I use a chain right now that is awesome with working with me, so my statement is very generalized. Azith and IBU are fine together, but make sure they have food in the tummy. We used IBU daily for about 8 months during a really rough spot. Of course, long term is not preferred, but if it is needed, then it is needed. We are tinkering with homeopathic anti-inflammatories/ABX now to see if we can get off traditional IBU and ABX. For the IBU we are using lecithin, omega 3-6-9, and propolis caps. Kiddo just had her tonsils out as well and we did not reinstate the IBU after the pain was no longer an issue. So far, so good. Yes, dilated pupils are one of the symptoms of PANDAS. Edited March 11, 2013 by Mayzoo Link to comment Share on other sites More sharing options...
SpenceOhana Posted March 11, 2013 Author Report Share Posted March 11, 2013 I have tried greenstone, warrick and sandoz in the azith tabs. All seemed just fine. The FDA requires generics to be within a +/- 5% strength of the brand. If you have a preference, you will have to inform the pharmacy in advance (24hrs usually) and ask them to order the name you want. As long as you have insurance, the cost will remain the same. If you are a cash customer, you will not notice a significant difference, but maybe a slight difference. The pharmacy can tell you how much in advance of ordering it how much it will be. I worked in pharmacy for 20 years as a licensed technicians, and if your pharmacy is unwilling to work with you in this manner, you really need to find another pharmacy. I prefer independent pharmacy over chains as they are more likely to work with you, but with that said, I use a chain right now that is awesome with working with me, so my statement is very generalized. Azith and IBU are fine together, but make sure they have food in the tummy. We used IBU daily for about 8 months during a really rough spot. Of course, long term is not preferred, but if it is needed, then it is needed. We are tinkering with homeopathic anti-inflammatories/ABX now to see if we can get off traditional IBU and ABX. For the IBU we are using lecithin, omega 3-6-9, and propolis caps. Kiddo just had her tonsils out as well and we did not reinstate the IBU after the pain was no longer an issue. So far, so good. Yes, dilated pupils are one of the symptoms of PANDAS. Thanks for the info. You mentioned "tabs", right now they are giving my daughter liquid form of zith...for older children can they get it in other forms? Link to comment Share on other sites More sharing options...
Mayzoo Posted March 11, 2013 Report Share Posted March 11, 2013 (edited) I have tried greenstone, warrick and sandoz in the azith tabs. All seemed just fine. The FDA requires generics to be within a +/- 5% strength of the brand. If you have a preference, you will have to inform the pharmacy in advance (24hrs usually) and ask them to order the name you want. As long as you have insurance, the cost will remain the same. If you are a cash customer, you will not notice a significant difference, but maybe a slight difference. The pharmacy can tell you how much in advance of ordering it how much it will be. I worked in pharmacy for 20 years as a licensed technicians, and if your pharmacy is unwilling to work with you in this manner, you really need to find another pharmacy. I prefer independent pharmacy over chains as they are more likely to work with you, but with that said, I use a chain right now that is awesome with working with me, so my statement is very generalized. Azith and IBU are fine together, but make sure they have food in the tummy. We used IBU daily for about 8 months during a really rough spot. Of course, long term is not preferred, but if it is needed, then it is needed. We are tinkering with homeopathic anti-inflammatories/ABX now to see if we can get off traditional IBU and ABX. For the IBU we are using lecithin, omega 3-6-9, and propolis caps. Kiddo just had her tonsils out as well and we did not reinstate the IBU after the pain was no longer an issue. So far, so good. Yes, dilated pupils are one of the symptoms of PANDAS. Thanks for the info. You mentioned "tabs", right now they are giving my daughter liquid form of zith...for older children can they get it in other forms? Azith comes in liquid, 250mg tablets and 500mg tablets. The tablets are fairly small. You can ask your pharmacy to show you one for size, but I would say they are the same size length as an IBU caplet, but a little thicker in the middle. The color, shape and size will vary slightly based on the manufacturer. The tablets can be broken, cut in half or quarters to accommodate varying dosages. The tablets are bitter, nasty so even though can be crushed, do not try to get those with idea of masking them. Pudding and ice cream still can not mask the nasty, bitter taste of a tablet. My kiddo hates all meds liquid regardless of flavor, so she "self determined" to swallow pills at an early age (6-7yrs old). She just refused liquids and requested pills when possible, so I tried it and she was fine with almost all sizes of pills that early on. Now she can swallow anything. Edited March 11, 2013 by Mayzoo Link to comment Share on other sites More sharing options...
SpenceOhana Posted March 11, 2013 Author Report Share Posted March 11, 2013 Do the pills have a bad taste? I'm wondering if my daughter would prefer these, she really dislikes have to take the liquid every evening. Link to comment Share on other sites More sharing options...
T_Anna Posted March 11, 2013 Report Share Posted March 11, 2013 My DD9 (non pandas) learned to swallow pills by watching a YouTube video we found (there are many). She is allergic to amox and hates the slimy liquid of Azithromycin. T.Anna Link to comment Share on other sites More sharing options...
Mayzoo Posted March 11, 2013 Report Share Posted March 11, 2013 Do the pills have a bad taste? I'm wondering if my daughter would prefer these, she really dislikes have to take the liquid every evening. If swallowed whole or just cut in half, I have not noticed any flavor. They have a thin coating on them. If crushed, you will not likely find anything to mask the bitter flavor of them. Link to comment Share on other sites More sharing options...
Hopeny Posted March 11, 2013 Report Share Posted March 11, 2013 I understand that Dr. Reddy's has hade some manufacturing problems, I just ask CVS to order other brands and they will. I go to CVS because they can add extra flavor and my local phramacist doesn;t have the flavors: http://www.fiercepharma.com/story/dr-reddys-discloses-it-recalled-some-generic-seroquel/2012-11-30. Just my opinion that its easier for the FDA to inspect/regulate plants in the U.S., imagine what kind of logistics it takes to inspect an plant in India. Plus you have to think of their suppliers, who the use and where the ingredients come from. and then there is transport, how is the stuff transported and what types of temperature fluctuations are they subject to? stndards just vary too much globally for me to get comfortable with it. Link to comment Share on other sites More sharing options...
airial95 Posted March 12, 2013 Report Share Posted March 12, 2013 My 5 year old has been swallowing pills for some time. Even the giant Augmentin horse pills. We initially used a cup called the Oralflo - you can find it on amazon. It's like a modified sippy cup that you drop the pill into and they drink it down. Worked great - and one day he just decided he wanted to do it on his own. Now he swallows multiple pills at a time. It's great because we can get longer rx's (suspensions only last 10 days), so I'm not hitting the pharmacy weekly. As long as the dosages work for you child. Mine is on Rifampin too - but he's too small for the min dosage that comes in the capsule - so they had to make it into a suspension for him, only med we have a problem getting into him - even though it tastes goood. He just doesn't like to do the liquids now that he can swallow pills. Link to comment Share on other sites More sharing options...
SpenceOhana Posted March 12, 2013 Author Report Share Posted March 12, 2013 Thank you everyone for your input. Waiting to hear back from her ped today. I hope she gets on board and presribes zith for at least a few more weeks. I think I will ask her to try it in pill form, my DD9 will probably prefer that once she learns to swallow it. Link to comment Share on other sites More sharing options...
Hopeny Posted March 13, 2013 Report Share Posted March 13, 2013 Since I just got this today I figured I will post, another warining about Zith Azithromycin (Zithromax or Zmax): Drug Safety Communication - Risk of Potentially Fatal Heart Rhythms AUDIENCE: Family Practice, Patient, Pharmacy, Health Professional ISSUE: FDA is warning the public that azithromycin (Zithromax or Zmax) can cause abnormal changes in the electrical activity of the heart that may lead to a potentially fatal irregular heart rhythm. Patients at particular risk for developing this condition include those with known risk factors such as existing QT interval prolongation, low blood levels of potassium or magnesium, a slower than normal heart rate, or use of certain drugs used to treat abnormal heart rhythms, or arrhythmias. FDA has issued a Drug Safety Communication today as a result of our review of a study by medical researchers as well as another study by a manufacturer of the drug that assessed the potential for azithromycin to cause abnormal changes in the electrical activity of the heart. FDA previously released a Statement on May 17, 2012, about a study that compared the risks of cardiovascular death in patients treated with the antibacterial drugs azithromycin, amoxicillin, ciprofloxacin (Cipro), and levofloxacin (Levaquin), or no antibacterial drug. The study reported an increase in cardiovascular deaths, and in the risk of death from any cause, in persons treated with a 5-day course of azithromycin (Zithromax) compared to persons treated with amoxicillin, ciprofloxacin, or no drug. The risks of cardiovascular death associated with levofloxacin treatment were similar to those associated with azithromycin treatment. BACKGROUND: Azithromycin is marketed under the brand names Zithromax and Zmax. Change to “FDA-approved indications for azithromycin include: acute bacterial exacerbations of chronic obstructive pulmonary disease, acute bacterial sinusitis, community-acquired pneumonia, pharyngitis/tonsillitis, uncomplicated skin and skin structure infections, urethritis and cervicitis, genital ulcer disease RECOMMENDATION: Health care professionals should consider the risk of torsades de pointes and fatal heart rhythms with azithromycin when considering treatment options for patients who are already at risk for cardiovascular events. FDA notes that the potential risk of QT prolongation with azithromycin should be placed in appropriate context when choosing an antibacterial drug: Alternative drugs in the macrolide class, or non-macrolides such as the fluoroquinolones, also have the potential for QT prolongation or other significant side effects that should be considered when choosing an antibacterial drug. Healthcare professionals and patients are encouraged to report adverse events or side effects related to the use of these products to the FDA's MedWatch Safety Information and Adverse Event Reporting Program: •Complete and submit the report Online: www.fda.gov/MedWatch/report.htm •Download form or call 1-800-332-1088 to request a reporting form, then complete and return to the address on the pre-addressed form, or submit by fax to 1-800-FDA-0178 Read the complete MedWatch Safety Alert, including a link to the Drug Safety Communication, at: http://www.fda.gov/Safety/MedWatch/SafetyInformation/SafetyAlertsforHumanMedicalProducts/ucm343350.htm Link to comment Share on other sites More sharing options...
SpenceOhana Posted March 13, 2013 Author Report Share Posted March 13, 2013 Since I just got this today I figured I will post, another warining about Zith Azithromycin (Zithromax or Zmax): Drug Safety Communication - Risk of Potentially Fatal Heart Rhythms AUDIENCE: Family Practice, Patient, Pharmacy, Health Professional ISSUE: FDA is warning the public that azithromycin (Zithromax or Zmax) can cause abnormal changes in the electrical activity of the heart that may lead to a potentially fatal irregular heart rhythm. Patients at particular risk for developing this condition include those with known risk factors such as existing QT interval prolongation, low blood levels of potassium or magnesium, a slower than normal heart rate, or use of certain drugs used to treat abnormal heart rhythms, or arrhythmias. FDA has issued a Drug Safety Communication today as a result of our review of a study by medical researchers as well as another study by a manufacturer of the drug that assessed the potential for azithromycin to cause abnormal changes in the electrical activity of the heart. FDA previously released a Statement on May 17, 2012, about a study that compared the risks of cardiovascular death in patients treated with the antibacterial drugs azithromycin, amoxicillin, ciprofloxacin (Cipro), and levofloxacin (Levaquin), or no antibacterial drug. The study reported an increase in cardiovascular deaths, and in the risk of death from any cause, in persons treated with a 5-day course of azithromycin (Zithromax) compared to persons treated with amoxicillin, ciprofloxacin, or no drug. The risks of cardiovascular death associated with levofloxacin treatment were similar to those associated with azithromycin treatment. BACKGROUND: Azithromycin is marketed under the brand names Zithromax and Zmax. Change to “FDA-approved indications for azithromycin include: acute bacterial exacerbations of chronic obstructive pulmonary disease, acute bacterial sinusitis, community-acquired pneumonia, pharyngitis/tonsillitis, uncomplicated skin and skin structure infections, urethritis and cervicitis, genital ulcer disease RECOMMENDATION: Health care professionals should consider the risk of torsades de pointes and fatal heart rhythms with azithromycin when considering treatment options for patients who are already at risk for cardiovascular events. FDA notes that the potential risk of QT prolongation with azithromycin should be placed in appropriate context when choosing an antibacterial drug: Alternative drugs in the macrolide class, or non-macrolides such as the fluoroquinolones, also have the potential for QT prolongation or other significant side effects that should be considered when choosing an antibacterial drug. Healthcare professionals and patients are encouraged to report adverse events or side effects related to the use of these products to the FDA's MedWatch Safety Information and Adverse Event Reporting Program: •Complete and submit the report Online: www.fda.gov/MedWatch/report.htm •Download form or call 1-800-332-1088 to request a reporting form, then complete and return to the address on the pre-addressed form, or submit by fax to 1-800-FDA-0178 Read the complete MedWatch Safety Alert, including a link to the Drug Safety Communication, at: http://www.fda.gov/Safety/MedWatch/SafetyInformation/SafetyAlertsforHumanMedicalProducts/ucm343350.htm Yikes, this makes me worry. Especially since DD9 is allergic to penicillin. What other antibiotics do PANS/PANDAS kids take? Link to comment Share on other sites More sharing options...
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