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michele

penicillin and PANDAS/Pitands

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Michele,

I am so sorry that you or anyone has to go through that. The evidence is clear that Penicillin is no longer the best choice in treating strep and I don't know why a doctor, when presented with this, would not make the right choice. All of my doctors agree that Penicillin is not the best choice. I have even been seen at a walk-in clinic on a Sunday when my doctor's office was closed and those doctors agree that penicillin is not the best choice. You always have the option of going to a different doctor. I wish you the best of luck. If there is anything I can do to help, please let me know. I know how hard dealing with this can be.

Colleen

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This is a very short video (about one minute) that does a good job explaining why penicillin is not the drug of choice for strep throat. There is also an article below the video, giving more detail.

 

http://www.sciencedaily.com/videos/2006-10-07/

What are the new drugs? I didn't see any names. My dd was dx'ed with PANDAS about a year ago. Neither Amox nor Penn really did any good for her as we never saw a remission from her symptoms. It took about 7 or 8 months for us to see a real change (for the better) in her symptoms.

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CKJ,

Cephalosporins are grouped into "generations". First generation cephalosporins are the oldest such as Keflex, Duricef, Cefadyl. Second generation are a wider spectrum antibiotic, less resistant and examples are Ceftin, Ceclor, Cefzil. Third generation cephalosporins cover an even broader spectrum of organisms and are Omnicef, Suprex, Vantin. There are even fourth generation cephalosporins that are the newest, but reserved for very serious infections that do not respond to the older cephalosporins. In general they try to start with first generation, reserving the next generations for use with infections that do not respond to the current cephalosporin being used. My daughter has responded great to cephalexin (Keflex). They can be used prophylactically also.

Colleen

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In response to your question on where to get max EPA fish oil. You can get fish oil at most any vitamin store, but it is essential as mentioned before to get the proper kind. I use the type that is used in most studies as it meets these recommendations. It is made by Nordic Naturals and I buy it off of vitacost.com. Another good brand sold there is by NSI. Be careful of what they make for children as some of that has omega 6's also, and you do not want that. Just get the regular adult dose and give the lower end of the recommendations. I think it says 2-4 daily. My son is 11 and she said he could take two daily. I am posting a link to an article that discusses the benefits of EPA and fish oil.

 

Literature Review of Essential Fatty Acids

Dedee

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CKJ,

Cephalosporins are grouped into "generations". First generation cephalosporins are the oldest such as Keflex, Duricef, Cefadyl. Second generation are a wider spectrum antibiotic, less resistant and examples are Ceftin, Ceclor, Cefzil. Third generation cephalosporins cover an even broader spectrum of organisms and are Omnicef, Suprex, Vantin. There are even fourth generation cephalosporins that are the newest, but reserved for very serious infections that do not respond to the older cephalosporins. In general they try to start with first generation, reserving the next generations for use with infections that do not respond to the current cephalosporin being used. My daughter has responded great to cephalexin (Keflex). They can be used prophylactically also.

Colleen

 

Why would a ped immunologist think it was best to treat PANDAS with penicillin versus these newer cephalosporins? Do you think he is going by older research? I left messages for three day regarding the dyes in pen. suspension and that others found Keflex or azithromiacin work better in response to PANDAS and his nuses message was that he thinks pen. is the best.

Michele

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I am not sure. I took my daughter to a pediatric allergist about 1 1/2 years ago to test her for an allergy to Augmentin after she developed hives while taking it (it turned out she was not allergic). But, during the course of the visit after discussing which antibiotics she had taken for strep, he said he was going to write a letter to my doctor stating he felt Penicillin was "adequate" for treating my daughter's strep. He actually was taking it upon himself to "correct" what he thought my doctor was doing wrong in prescribing cephalosporins. I should have told him how I did not agree, as I have seen first hand that it does not work on her strep, but didn't and never plan on seeing him again. I guess it is like in any and all professions, everybody makes mistakes sometimes. He may be going on old research or is just stubborn to accept that a treatment that used to be the gold standard, is just not anymore. A lot of doctors, if "bugged" enough by a persistent parent, will just give in and try it your way. If not, there are many doctors who will go along with the newer drugs. I was lucky that my doctor and his two partners ageed with the research about penicillin not being the best. Could you print out the articles and send them to him with a letter stating your reasons for not wanting to use penicillin and wanting to try a cephalosporin? Whatever you decide, I wish you the best.

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Michele,

I am so sorry for what you are going through now, especially with your doctor. I have been there before and ended up "firing" two of our doctors as they would not consider the "evidence" I presented to them related to the treatment of strep/ PANDAS. I am a registered nurse and am aware that some physicians take awhile to "come around" to new treatment options, but keep in mind that they are just people who work for you and if you are not satisfied with their job you can move on to a physician who will work with what you feel is best for child. Could you show him some of these articles that show the failure rate of penicillin and the success rate of cephalopsporins? Sometimes physicians don't know what mothers know and just need to be shown such.

Here are some links to articles that may help:

 

http://findarticles.com/p/articles/mi_m322...71/ai_n13684250

http://www.urmc.rochester.edu/pr/news/story.cfm?id=981

http://www.medicalnewstoday.com/medicalnews.php?newsid=35136

http://www.aafp.org/afp/20050315/tips/11.html

http://www.sciencedaily.com/releases/2005/...51218111320.htm

 

I will also pray for you and your family.

Colleen

 

Why would a child immunologist not believe this?

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Well, I just wanted to jump in and say a little about the penicilling issue. My son takes amoxicillin daily as it helps his PANDAS symptoms. Amoxicillin is a penicillin based antibiotic. When I spoke to Dr. Murphy about switching, we discussed issues such as starting on the strongest medications first with nothing more to work with once your child becomes resistant to that particular antibiotic. Of course, if you are in the middle of a true strep outbreak and penicillin is not working that is a totally different story. In my case, my son is doing well on amoxicillin, so really there is no reason to look for something stronger. I believe, again, that you need to think these things through on a case by case basis. As in most medical issues, there is no blanket therapy that works for everyone. While one person may do well on a weaker antibiotic, others may require the stronger more broad spectrum therapy. There is no need to pull out the big guns, so to speak, if they are not called for. However, if the penicillin does not seem to be doing the job, then you know my opinion on that...fight for whats right. Just wanted to put in my 2cents. Hope everyone has a good week-end.

 

Dedee

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My five year old was recently put on penicillin V oral for his symptoms for PANDAS. We were so hopeful this was finally a possible solution to his problem which has recently become worse but has existed for years. Now five days later he is behaving even worse then ever. He has no self control and is getting on everyone's nerves by being loud and obnoxious. He has had one temper tantrum after the next. Today he tried to jump out of the car because I wouldn't stop for a Happy Meal which is one of his repetive favorite things to get. He is obsessed with Happy Meal toys, Webkinz and movies. He is very emotional and is crying and carrying on all day. Could it be the antibiotic? The change in routines now that summer is here? The foods he eats? I called yoday to get him a consult wih a behavioral specialist. This is so hard. I am worried about school in the fall. They already gave him a diagnosis of ADHD for school purposes. I am afraid if I tell this this off the bat they will label him before he ever gets a chance. What can I do?

Michele

 

 

Hi Michele! I hope I might be able to finally help someone, after all the help I have gotten! My 6 year old was diasnosed with PANDAS in March. He is on a PCN injection called Bicillin LA. It is given every three to four weeks. The ID doc told us it only targets the strep virus so it was good as a long term use antibiotic and wouldn't hurt the good bacteria. I am still giving him a probiotic just incase! My son was having the same self control and emotional issues about two weeks ago. The only help the behavioral specialist could give us was the "positive reward system" We reward the good behavior with a poker chip and when he has five of them he get's a treat. I understand this is a medical issue so she can only help us learn to deal with his behavior not treat it. I can tell you we have been using a product called Min-Chex(you can google it) for about 8 days and my son is back to his normal(before the strep) self! Tics are maybe once a day, OCD gone, and only 1 a day melt down a night when he is really tired. I have taken a lot of information from this sight and have started my son on Omega 3 along with his multivitamin. I understand how you are feeling. This has been the hardest three months of our lives. With Pandas I know the behavior comes and goes, but this has been the first time since it all started that my son seems happy. We are all here for you!

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