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michele

penicillin and PANDAS/Pitands

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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

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Hi Michele.

 

Someone named Heather ( I think) used to post here - her son got MUCH worse on antibiotics too. You can search for her posts. In the end I think she believed it was due to the increase in yeast due to the antibiotics - are you using probiotics? The other culprit may be the color in the antibiotics. Or it may be that he just needs a different antibiotic. On the correct antibiotic - PANDAS kids should get better not worse.

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Michele,

Penicillin VK suspension (oral liquid) has as a main ingredient Red D & C 40. My son goes berserk when he has Red 40. He was on liquid Keflex for a PANDAS flareup b/c of strep and was out of control after 24 hrs. on it. I called our Dr. and asked if he could prescribe Keflex capsules that I could dump the powder into water which he did. I checked with the pharmacist who said that was fine to do. After seeing such an incredible behavioral change with the Red 40. I started googling it and found this is a very common occurence with children and Red 40, in particular. I don't know if this is an issue for your child, but something to look into. If he is on Pen VK for strep, Augmentin may be a better choice and it does not have red dye. Most capsules of any antibiotic are fine to open and dump into water, they just may taste bad. Make sure to OK it with a pharmacist.

Colleen

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Michele,

Penicillin VK suspension (oral liquid) has as a main ingredient Red D & C 40. My son goes berserk when he has Red 40. He was on liquid Keflex for a PANDAS flareup b/c of strep and was out of control after 24 hrs. on it. I called our Dr. and asked if he could prescribe Keflex capsules that I could dump the powder into water which he did. I checked with the pharmacist who said that was fine to do. After seeing such an incredible behavioral change with the Red 40. I started googling it and found this is a very common occurence with children and Red 40, in particular. I don't know if this is an issue for your child, but something to look into. If he is on Pen VK for strep, Augmentin may be a better choice and it does not have red dye. Most capsules of any antibiotic are fine to open and dump into water, they just may taste bad. Make sure to OK it with a pharmacist.

Colleen

 

Thanks for the interesting input. I never thought about it. However Andrew soes get hyper on red drinks and dyes. How aout the zithromax is it red?

Michele

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Michele,

Penicillin VK suspension (oral liquid) has as a main ingredient Red D & C 40. My son goes berserk when he has Red 40. He was on liquid Keflex for a PANDAS flareup b/c of strep and was out of control after 24 hrs. on it. I called our Dr. and asked if he could prescribe Keflex capsules that I could dump the powder into water which he did. I checked with the pharmacist who said that was fine to do. After seeing such an incredible behavioral change with the Red 40. I started googling it and found this is a very common occurence with children and Red 40, in particular. I don't know if this is an issue for your child, but something to look into. If he is on Pen VK for strep, Augmentin may be a better choice and it does not have red dye. Most capsules of any antibiotic are fine to open and dump into water, they just may taste bad. Make sure to OK it with a pharmacist.

Colleen

 

Is there a certain amount of keeflex? My husband is on it for cyst infection. Can Andrew try his?

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Michele,

You say your son will start kindergarten in September? Just curious, does your school do a registration/pre-screening for the kindergarteners? I think that is held in May at our school. If so, how did that go? That is where they will probably notice any obvious issues.

 

I wouldn't worry too much about preconceptions. Believe me, there are going to be quite a few other kids who will be diagnosed ADHD. And I know of a couple of moms who just had to get that diagnosis even though they are not positive it fits, in order to get the proper services and extra help their child needed. If there are any behavioral issues come school time, the teacher will let you know (probably lots of phone calls!) I mean, you could just wait and see what happens, but I would definitely start to get your ducks in a row just in case that becomes an issue. I know it feels hard right now, but I truly believe the school will want to make sure he gets the help he needs. I think one of the things he may get is an "aid" who shadows them and gives them the extra attention and help with schoolwork that they may need in the classroom, but I believe they don't make this obvious, the other kids don't know the other teacher is there for someone specific, they are just an "assistant". ... . Maybe most of this will settle before school starts.

 

Faith

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Yes, unfortunately the liquid Zithromax also has Red 40 in ti. The usual dose for Keflex is 25 to 50 milligrams for each 2.2 pounds of body weight per day, divided into smaller doses. It is given for 10 days. Our pharmacist said it is fine to open the capsules and dump in water. It tastes bad, but I could get my 4 and 6 yr. olds to take it. You do not want to mix Keflex with anything citrus.

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How frustrating for you. I do also remember that another PANDAS mother here has a son who got worse on antibiotics. I think she kept him off of them. PANDAS and especially PITANDS presents very differently in each child. If your child has PITANDS, then antibiotics is probably not the answer for you. You can try the suggestions offered regarding the food dye, but I think it is important to also identify whether you are attempting to treat true PANDAS or PITANDS. That may be part of the issue. Again, remember that each child will react differently to treatment, and just like the other mom here, penicillin may not work for your child. I know that Dr. Murphy says that with some children it seems to be a miracle cure and for others it has the opposite effect. This is such a frustrating illness, and I am so sorry that your son is struggling and that you are as well. You may want to try some Max EPA fish oil for his ADHD, there are several studies that are showing after a couple of months on the appropriate fish oil, that ADHD children show less hyper tendencies and more ability to stay on task. Make sure it does not have any omega 6, and that the epa / dha is 2:1 ratio. Good luck with your son and let us know how he is doing.

 

Dedee

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How frustrating for you. I do also remember that another PANDAS mother here has a son who got worse on antibiotics. I think she kept him off of them. PANDAS and especially PITANDS presents very differently in each child. If your child has PITANDS, then antibiotics is probably not the answer for you. You can try the suggestions offered regarding the food dye, but I think it is important to also identify whether you are attempting to treat true PANDAS or PITANDS. That may be part of the issue. Again, remember that each child will react differently to treatment, and just like the other mom here, penicillin may not work for your child. I know that Dr. Murphy says that with some children it seems to be a miracle cure and for others it has the opposite effect. This is such a frustrating illness, and I am so sorry that your son is struggling and that you are as well. You may want to try some Max EPA fish oil for his ADHD, there are several studies that are showing after a couple of months on the appropriate fish oil, that ADHD children show less hyper tendencies and more ability to stay on task. Make sure it does not have any omega 6, and that the epa / dha is 2:1 ratio. Good luck with your son and let us know how he is doing.

 

Dedee

 

I just got off the phone with the pharmacist and drug rep and then the Dr. The Dr. does not believe in the Pitands diagnosis because research is limiting about it. I think Andrew is more viral which points to Pitands myself. Initally he started with strep at age thirteen months and then from then on started acting strange after viral things like colds, ears, shots, etc. Not just strep. He doesn't get strep more then twice a year. The Dr. is trying the antibiotics for the PANDAS which may be the wrong diagnosis. He is borderline on blood testing and was neg. for strep. But the damage has been done to his brain and now he acts ADHD hyper and loud impulsive and emotional whinning , and OCD (collecting all of things and wanting something over and over and then repetitive not letting things go, things have to be just right never broken, marked, melted, torn, and a bit of the touretts too(blinks, rep stretches and knees bends and finger bending making loud shouts or noises. Sometimes better then others but never really completely right. Also having to go to the bathroom constantly when flaired. Well back to the red 40 dye. It is in most of the suspensions. So now what? We could break a peniciilin tablet into water. Amoxcillin is a tablet that can be chewed. However the Dr. called in penicillinV and it is his call. Today was a better day. He cried for awhile after I did not get him a Happy Meal but eventually a half hour later he let it go. We are setting a goal of Fri. for his Happy meal(he wants the toys not really caring about the food) Otherwise he goes bazerk everyday to get it. I need him tested for food allergies who does this in kids?

Michele

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Michele,

You say your son will start kindergarten in September? Just curious, does your school do a registration/pre-screening for the kindergarteners? I think that is held in May at our school. If so, how did that go? That is where they will probably notice any obvious issues.

 

I wouldn't worry too much about preconceptions. Believe me, there are going to be quite a few other kids who will be diagnosed ADHD. And I know of a couple of moms who just had to get that diagnosis even though they are not positive it fits, in order to get the proper services and extra help their child needed. If there are any behavioral issues come school time, the teacher will let you know (probably lots of phone calls!) I mean, you could just wait and see what happens, but I would definitely start to get your ducks in a row just in case that becomes an issue. I know it feels hard right now, but I truly believe the school will want to make sure he gets the help he needs. I think one of the things he may get is an "aid" who shadows them and gives them the extra attention and help with schoolwork that they may need in the classroom, but I believe they don't make this obvious, the other kids don't know the other teacher is there for someone specific, they are just an "assistant". ... . Maybe most of this will settle before school starts.

 

Faith

 

We did get the ADHD diagnosis for school purpose. I guess getting help is more important then worrying how people will view him as labeled ADHD. I have two girls who have gone through the school before him and they are quiet angels and I am used to hearing how perfect they are. I hate he has to deal with the labels of ADHD. I am a teacher I know how kids that are a problem can really make a disruption for everyone else. I pray he doesn't do this at school. Maybe he will control himself. The ped. said ADHD kids can learn to manage their behaviors for school unmedicated.

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Michele,

 

I really understand your fear. Keep praying, God will take care of you and your son. Just give it a little time and stick to the healthy diet. I really really believe we are what we eat.

 

The change in my son in four months of meat, raw fruit and veggys, has my son listed at school as the poster boy of an amazing turn around. This child was screaming for three months.

 

God Bless,

C.P.

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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

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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

 

WOW Thanks for the wealth of information. You have done your homework. I am a library science masters major so I know the time it takes to research! Are these cephalosporins used for long term treatment prophalaxis? Also are they available in a chewable or a liquid that is not red #40? in color? It does seem like some of these Dr. are old school. But the infectious disease Dr. perscribed the meds so I would hope he would know what is the best on the market for infections!

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How frustrating for you. I do also remember that another PANDAS mother here has a son who got worse on antibiotics. I think she kept him off of them. PANDAS and especially PITANDS presents very differently in each child. If your child has PITANDS, then antibiotics is probably not the answer for you. You can try the suggestions offered regarding the food dye, but I think it is important to also identify whether you are attempting to treat true PANDAS or PITANDS. That may be part of the issue. Again, remember that each child will react differently to treatment, and just like the other mom here, penicillin may not work for your child. I know that Dr. Murphy says that with some children it seems to be a miracle cure and for others it has the opposite effect. This is such a frustrating illness, and I am so sorry that your son is struggling and that you are as well. You may want to try some Max EPA fish oil for his ADHD, there are several studies that are showing after a couple of months on the appropriate fish oil, that ADHD children show less hyper tendencies and more ability to stay on task. Make sure it does not have any omega 6, and that the epa / dha is 2:1 ratio. Good luck with your son and let us know how he is doing.

 

Dedee

Where do you get max epa fsh oil?

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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

 

I talked to Andrew's Dr. office again today. The Dr. feels penicillin V is the best in his pinion for us. He said we could crush the pills in his food. Why is he not interested in hearing about cephalosporins or zithromiacin? Obviously he feels he has done his research. Now what?

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