Antibiotics and PANDAS

[emma1]

I am giving my daughter Pen V in the morning and at night. I am giving probiotics at dinner, to keep them separated from the antibiotics. I have two questions.

 

First, are those giving Pen V giving it on an empty stomach (one hour before or two hours after a meal) -- I am having trouble getting the Pen V in during the morning and still having time to give my daughter breakfast.

 

Second, I want to add (slowly) a multivitamin, fish oil, and magnesium taurate -- but when would I give those? Can I give those at the same time I give the antibiotics, or will any of them impair the absorption of the antibiotic?

 

Any suggestions would be most appreciated.

[michele]

We give pen vk in the morning right after breakfast and again after lunch and right before bedtime with a snack. I give the other vitamins and fish oils (stopped now) and taurate and Zinc Picollinate the same time during the lunch doseage. Then I give the probiotics seperate at dinner. I did not have any instructions to take Pen VK on an empty stomach. It just seems to fit in best for us to do it this way.

Michele

 

I am giving my daughter Pen V in the morning and at night. I am giving probiotics at dinner, to keep them separated from the antibiotics. I have two questions.

 

First, are those giving Pen V giving it on an empty stomach (one hour before or two hours after a meal) -- I am having trouble getting the Pen V in during the morning and still having time to give my daughter breakfast.

 

Second, I want to add (slowly) a multivitamin, fish oil, and magnesium taurate -- but when would I give those? Can I give those at the same time I give the antibiotics, or will any of them impair the absorption of the antibiotic?

 

Any suggestions would be most appreciated.

[emma1]

Hi Michele! I checked and actually what it says is that the Pen VK "is better absorbed" when given on an empty stomach. I truly don't know what that means. Is Andrew getting 250 mg three times a day? We are on 250 mg twice a day! Is that too little??

 

How is your son doing? Did you switch to zithromax? The jury is still out here regarding Pen VK. I am not sure it is working. I know about all the "superbugs, etc" but I wish it were easier to just get what works right now.

[michele]

I question giving the daily prophylaxis everytime I give it. He does take three times a day 250 pen vk. All these pills makes it hard to remember which to give on an empty stomach. The tics are still there so that is some of my wondering do we really need this? However I am a chicken to stop it fearing he may explode with symptoms again. The typical dose of pen vk is 250mg. twice a day. Right now we are finishing up Augmentin which was for a flare up where he was compulsive about using the potty to urinate. He seems much better now emotionally. But I did notice his finger cracking against his face tic where he cracks right hand then left hand has now progressed to a finger cracking followed by a tip toe crack up on his right foot then his left foot. So that being said I think more tics may be developing in the future. It must feel good because he says it hurts if he doesn't crack. At this point the treatment for Pyrrole isn't helping the tics. I did up him to two 30mg. Zincs and one taurate 500 mg. a day. I have not tried the amino acids or nystatin yet. I read Chemar gives a natural Candida product so I wonder if it would be better for the yeast overgrowth. I wish we could get a try of Zithromax but I've had no luck finding a Dr. here to give it for him without strep. I thought maybe the DAN Dr. but his assistant said I would need to talk to him about possible side effects and it would cost another $50 and I just had a $200 phone conversation last week with him so I will wait for it now.

Michele

 

 

quote name='emma1' date='Nov 9 2007, 10:10 AM' post='18627']

Hi Michele! I checked and actually what it says is that the Pen VK "is better absorbed" when given on an empty stomach. I truly don't know what that means. Is Andrew getting 250 mg three times a day? We are on 250 mg twice a day! Is that too little??

 

How is your son doing? Did you switch to zithromax? The jury is still out here regarding Pen VK. I am not sure it is working. I know about all the "superbugs, etc" but I wish it were easier to just get what works right now.

[emma1]

Michele, I know that Dr. Murphy did not recommend zithromax -- why was that again? My doctor is set on this low dose Pen VK because of its use with prevention of rheumatic fever. I am finding that it is not working as well as the high dose augmentin. But we are on 250 twice a day -- that seems really low considering my child takes an adult dose of most meds.

 

I was reading posts of those who only need to give zithromax every 5 days -- that sure sounds nice.

 

Anyone with a PANDAS child -- has Pen V worked to get rid of all symptoms for anyone? We were symptom-free on augmentin -- glorious for almost three weeks. And you are encouraged to take with food, which works so much better. Is anyone on long-term augmentin?

[michele]

Emma,

I don't know why but she recommended Augmentin or Omniseph. Because of her recommendation I could get them but not the stronger Zithromax. I guess they reserve it for more serious infections because there is some resistance to it in the midwest. I would love to try it. My son has been a little wired the past few days. I don't know why but Dr. Demio said the yeast overgrowth can make them act kind of drunk like because of too many endorhins being released. I guess I really need to try the nystatin. Something you need to consider with the long term antibiotics, I look back and wonder if the prophylaxis has led to the yeast overgrowth. I would be scared to try the chelation but I hear it really helps with treatment.

 

What are your daughters symptoms now?

 

 

Michele

Michele, I know that Dr. Murphy did not recommend zithromax -- why was that again? My doctor is set on this low dose Pen VK because of its use with prevention of rheumatic fever. I am finding that it is not working as well as the high dose augmentin. But we are on 250 twice a day -- that seems really low considering my child takes an adult dose of most meds.

 

I was reading posts of those who only need to give zithromax every 5 days -- that sure sounds nice.

 

Anyone with a PANDAS child -- has Pen V worked to get rid of all symptoms for anyone? We were symptom-free on augmentin -- glorious for almost three weeks. And you are encouraged to take with food, which works so much better. Is anyone on long-term augmentin?

[emma1]

Mostly some ocd things (counting, repeating things) -- very quiet, and not obvious -- but definitely there. No tics -- yet. With the augmentin, there was nothing. It was wonderful. I wonder -- does anyone stay on augmentin or is it too strong long-term?

 

I was researching Pen VK, Michelle, and it said that the tablet contained "lactose" -- do you think your son could be reacting to that? We are not milk free -- tried it, but it made no difference. Not sure the lactose refers to milk, but that is the only context I've seen it. I know the Culturelle we use has whey in it too.ing

[Dedee]

Hi Emma,

 

Just jumping in on the Augmentin issue. My son also did great on Augmentin and Dr. Murphy did kind of bat around whether or not to have him on it daily or not. In the end we left him on Amoxicillin 250 twice daily because he was doing fine. Actually he probably did better on the Augmentin, meaning that we truly saw no tics what-so-ever while on that. However, I think her reasoning was that we would hold on to that for when he had flare ups, thats when we give him about two weeks of it then go back to the Amoxicillin twice daily. I think Amoxicillin is somewhat different than Pen V although it is still a Penicillin base. I wonder if you would see different results with that or have you already tried it? Hope you find an answer soon.

 

Dedee

[emma1]

Hi Dedee! Thanks for responding. I am starting to feel discouraged. We tried amoxil (875 mg twice daily) and augmentin -- both were regular dose. The only low dose we have tried is Pen VK at 250 twice a day. I am wondering if this is just too low to get rid of symptoms. I wondered about Amoxil, but the one we used had colors and dyes in it. What dose do you use? I am thinking perhaps the dose is just too low.

 

I am also wondering -- I know your son takes fish oil and perhaps other supplements -- do you feel anything else, beyond antibiotics, helps?

[Dedee]

Emma,

 

The amoxicillin we use is in capsule form so I don't have to worry about dyes or flavors. He also takes calcium / mag, a multivitamin, fish oil, and probiotics. I only recently added a B-vitamin last week which so far he is tolerating well. We are very slowly weaning him off of Celexa which he has been on for several years. He is doing very well so far, I am just very scared and sort of waiting for the other shoe to drop. My goal is to one day be able to manage him only with the supplements, low dose antibiotics, and lots of love and prayers. This has been a long bumpy and very emotional road. Let me know if I can help.

 

Thoughts and prayers - Dedee

[emma1]

Thanks so much for the information. I know suppressive therapy is supposed to be low dose, but I can't help but think perhaps this is too low. I am trying to give it a fair trial. It would be good if we could use this low dose, but I've gotten so spoiled with the weeks of no symptoms.

 

I do so understand you "waiting for the other shoe to drop" statement. I am finding that I am really starting to stress out about this.

 

How is your son doing now? Do you "tolerate" some symptoms to stay on amoxil? I finally added fish oil. I am trying to go slow and not add too much too fast. I am assuming that a negative reaction would be pretty immediate, but otherwise, I won't notice much.

 

I hope you son is doing well. Dedee, you seem like you have really done all you possibly could to make this work for you child.

[Dedee]

Actually he is doing very well right now. He just brought home his report card a couple weeks ago and it was his first one with all A's. He was so very proud of himself. It is a complete full circle to where we were this time last year. I had noticed about a month ago that he was having a few more head tics than usual and I increased his calcium and also added the B vitamins. Of course I didn't say anything to him and he never mentioned it either. I also gave him a 10 day omnicef course that I had samples of because I thought he had been exposed to strept from some friends at school and I guess I was trying to ward off evil spirits so to speak :-). Now we are back on all the regular stuff and everthing seems to be back to normal with just some rare tics that only a Mom would notice. He really is such a happy kid this year and has even made a good friend that he has some things in common with. This is such a HUGE difference from the emotional lonely weepy clingy little boy he was last year. Of course, I watch everything like a hawk, but I mention very little. Not that I want him to think that I am ashamed. I just want him to go on with his life without feeling different. I do ask him about once a week how he is feeling, and he always smiles and says "Good Mom". So I just Thank the Lord and go on my way. We will see how things go as I continue to taper off the rest of this Celexa. Keeping my fingers crossed on that one.

 

Dedee

[michele]

Dedee,

Do you ever notice him having yeast trouble since the long term antibiotics? Andrew tested high for yeast and this makes him act like he is drunk. I am trying Nystatin. Have you ever used anymore then probiotics?

 

Emma,

The DAN suggested GLA instead of fish oils. Have you ever heard of this? We have not started it yet.

I encountered the nicest pharamacist yesterday. He was so helpful while compounding the Nystatin. He even told me he has a client whose children get monthly perscriptions for Azithromycin. Then he looked up their account and told me they go to the Clev Clinic and gave me the name of the Dr. It is an ear nose and throat Dr. He also said they are on other allergy meds. That is one type of Dr. we have not been to yet. I may call today and see if he treats PANDAS.

 

Interesting Dedee, I ask him the same question too "How do you feel?" It is hard to think of little else when you have a sick kid.

 

Michele

 

 

Actually he is doing very well right now. He just brought home his report card a couple weeks ago and it was his first one with all A's. He was so very proud of himself. It is a complete full circle to where we were this time last year. I had noticed about a month ago that he was having a few more head tics than usual and I increased his calcium and also added the B vitamins. Of course I didn't say anything to him and he never mentioned it either. I also gave him a 10 day omnicef course that I had samples of because I thought he had been exposed to strept from some friends at school and I guess I was trying to ward off evil spirits so to speak :-). Now we are back on all the regular stuff and everthing seems to be back to normal with just some rare tics that only a Mom would notice. He really is such a happy kid this year and has even made a good friend that he has some things in common with. This is such a HUGE difference from the emotional lonely weepy clingy little boy he was last year. Of course, I watch everything like a hawk, but I mention very little. Not that I want him to think that I am ashamed. I just want him to go on with his life without feeling different. I do ask him about once a week how he is feeling, and he always smiles and says "Good Mom". So I just Thank the Lord and go on my way. We will see how things go as I continue to taper off the rest of this Celexa. Keeping my fingers crossed on that one.

 

Dedee

[Dedee]

It's very strange that I haven't noticed it with my son. We are very diligent with the probiotics and also he uses milk with probiotic cultures. However, my daughter is on antibiotics daily for a kidney problem for 2 yrs now and I give her probiotics also. Now let me tell you, she has yeast all the time. She has it in her mouth at times and of course the usual female yeast also. I am constantly treating her. We use Nystatin for her mouth and then an ointment for her bottom. There have been a couple of times when it was really bad and she had to have diflucan. It may have to do with the different type of antibiotic that she is taking. She just turned four so it is kind of hard to tell if it gives her cloudy thinking or not. I have heard alot of bad things from chronic yeast overgrowth. Probiotics is all we have ever tried though. Good Luck.

 

Dedee

[emma1]

Dedee, So happy to hear such a positive story. I notice mild symptoms with the low dose Pen VK (we are on a lower dose than Michelle, even though my daughter is 9 years older!) -- not sure others would notice, but I watch her like a hawk. Are you giving 250 mgs twice a day of antibiotic?

 

I use Culturelle every day and I have just started one Omega 3. I notice you mention milk. I stopped using all milk for a while and noticed no change. To be quite honest, I noticed no improvement with anything -- we were definitely floundering until the antibiotic -- which worked like a miracle, relatively speaking. But after I reintroduced milk, I noticed that having a glass of milk actually calmed her.

 

Michelle, GLA comes from Borage Oil and Evening Primrose Oil. It is Omega 6 -- which Chemar has said is a no-no for those with autoimmune issues (which PANDAS is). So far, I have tried to stay away from Omega 6, though my doctor didn't seem to have an opinion on whether it would be good/bad. But Chemar really seemed to know what she was talking about. Has your DAN worked with children with autoimmune issues?

 

I remember you saying that the DAN had thought treating the pyroluria would make a dramatic difference. What do you think so far?

 

A small amount of GLA is in a lot fish oil capsules, primarily those made by Nordic Naturals and Equazen. In fact, Nordic Naturals told me Omega 6 or 9 (or both) is in all of their capsules.

 

I have pretty much stopped talking to my daughter as she is doing relatively well, and seems happy. She is at an age where "being different" is just the worst, and she once told me that my questions made her feel different. I try to just watch, though I occasionally cannot contain myself and ask, "So how are you feeling?" or "Feeling OK?" She always says yes.