Christianmom

I think the problem is only with extended release antibiotics like augmentin xr. Here's a link about the topic: http://www.latitudes.org/forums/index.php?showtopic=11088

I have read the posts concerning the problems with taking digestive enzymes if your child is on augmentin xr. So when my son was recently switched to augmentin xr, I stopped the enzymes. But he is complaining of stomach pain now (the reason I had him taking enzymes in the first place). Is there something else I can give him in place of the enzymes? He is already on immunoprobio, 2 capsules per day. Thank you.

For those that have done this Metametrix test, did you have your child stay off antibiotics for three days as per the instructions? When I asked Metametrix about it they said it was necessary, not just a suggestion. What did you do?

Wow, thanks for the information. I was giving my son enzymes with each meal and just saw that they do contain cellulase. My son is on augmentin XR, so I will stop giving him the enzymes. How did you ever figure out this connection?

Since I posted, PANDAS doctor changed my son's antibiotic dosage and naturopathic doctor said he wants to change homeopathy remedy in a week. So I will not be trying the collodial silver for a little while as I don't want to try two changes at once. But if the new changes don't help, I will be trying the colloidal silver. Thank you all for your input!

So glad to hear the good outcome with ignatia. Thank you for posting. Are you still on your antibiotic? Also, had a question for those who had negative results with homeopathy. Did you feel that you had a good homeopath? I say this because there can be a big difference between one homeopath and another in terms of their experience and training. And though I don't know that much about homeopathy, I can see how the wrong homeopathic rememdy could make a child much worse. I can even see how these negative results could last as I think the thought behind homeopathy is similar to that of vaccines which we know can have lasting negative results for PANDAS kids. Or do you feel instead that no matter which homeopath you had gone to or what remedy had been used, your PANDAS child would have done poorly?

My son is having the following tests (mostly viral) run tomorrow and I noticed the doctor didn't specify a lab. With my insurance, this means that they will all be done through Labcorp. I was wondering what you guys think of this. Is Labcorp an OK lab for these tests? Sorry I don't have the exact test names. This is how the script reads: Chlamydia pneumoniae IgG/IgM, Coxsackie B titers, HHV6 titers, EBV panel, Parovirus B19 titers, HPV titers, CMV panel, Herpes simplex titers, c3a and c4a complement

I'm not sure I know what I'm talking about, but I thought even 10 days was long for a burst. Did you mean a 45 day taper? I think it is important to taper down if steroids are given for longer than 10 days.

Hi PhillyPA, I mentioned this post to my naturopath and he asked if you could specifically ask this person what foods they avoided that helped. In other words, did avoiding certain nightshade foods help more than others? Thank you.

Did your friend's son have symptoms of nightshades allergies ("sleepiness, abdominal cramps, diarrhea, in the first hour after ingesting nightshades and often migraine headaches") that made your friend avoid the nightshades for her son? Or did her son just have the severe OCD and tic symptoms?

My son takes curcumin phytosome 500 mg. twice day. Can't say that I've noticed much difference, definitely not anything dramatic. But maybe he isn't on a high enough dosage.

I can't help you out there, but I'm sure others will post. I think your PED will probably believe you and hopefully will research it. My only thought was that they may still be leary to write out blood scripts as it requires a diagnosis code. I would just use Dr. T's scripts. But getting your PED involved is great. I put my son in with my personal doctor's practice and she talked for an hour with me, wanting to know all about PANDAS, never thought I was crazy as she trusted me. But by the sam token, though she is willing to work with Dr. T, she didn't want the responsibility of recommending treatment. She was afraid she could not give my son justice. So basically she wanted Dr. T to take the lead. So far I have just dealt with Dr. T directly for this. I only have the local doctor for a backup in case my son should have an emergency and need to be seen (for example a reaction to an antibiotic). So far my son has not had any "emergency" type of symptoms that have ever required us to take him to the ER. So maybe my case is different.

You will find that Dr. T, though great in many ways and very caring, has administrative problems and is very over-worked. Because of this I have all labwork faxed to my son's family doctor as well as Dr. T's office. That way I can run down to my son's local doctor and get a copy of the results. I then scan them into my computer and send them to Dr. T (that way he has all my son's bloodwork together in an e-mail and doesn't have to go looking for a bunch of faxes). I know this sounds crazy, but it is a way of helping Dr. T keep all your son's labwork together. Every time I have a consult with him, I re-send the labwork in an e-mail, so we can talk about it. This is also helpful if you do go to another doctor as you already have all your son's labwork in one place. Any new doctor will probably want a copy of all labwork.

Not trying to encourage you to go to Dr. Elia or not, but just wanted to say that I think the long wait would be for your first appointment as I would guess it is an hour or two long. Any future appointments you should be able to get in much quicker. Might want to ask how long you have to wait for a short follow-up appointment.

You could ask Dr. T to send you actual scripts for the tests (that's what we did). (The PED may be hesitant to order the tests because it will requires a diagnosis code of OCD (or something like that) that they might not feel comfortable giving.) Then you can just take the scripts to your local hospital or lab (like Quest) and have them done. You will want to make sure they participate with your insurance. But your insurance should be OK about an out-of-state (out-of-network) doctor ordering the tests as long as the tests are actually done in-network. With my insurance, all our labwork is considered in-network though Dr. T's fees are out-of-network. I can empathize with the waiting. I thought the labwork would never come back for my son though it was only a week and a half. Praying for you.

Even if you don't go to CHOP, you might want to make an appointment, because she requires paperwork that Dr. T does not. She will want to review the paperwork before she sees your child for the first time. Also, she may take you sooner if you tell the secretary your chid is a PANDAS patient. Dr. Elia is a psychiatrist and a lot of her new patients are not as critical as your child, so she may take your child a little sooner than another.

Dr. T will prescribe. I have a wonderful local doctor for my son now, and she is willing to work with Dr. T in any way she can. But Dr. T has always been my son's prescribing doctor. The original doctor I went to when my son first had problems didn't believe in PANDAS (got rid of him right away). Dr. T was then recommended to me, and I have worked with him ever since. I will post if my son tries the higher dose if we do. Right now we are waiting to see if there is any change after adding the augmentin xr 2000 mg to the biaxin 1000 mg. Too early to tell yet.

The reason I was asking is because Dr. T suggested trying it with my son, though we haven't yet. It was his suggestion, not mine to him. He assured me that there was no danger in this dosage, but it prompted me to look it up. I was amazed that 4,000 mg. is what is given for even just a sinus infection as you said. That's what prompted my thinking that perhaps "Sammy's" doctor prescribed 2,000 mg. because of his weight. I remember reading that at one point he was very thin, but I don't know if that was the point when his doctor started the augmentin xr. My son is asymptomatic as well. He has always been extremely healthy and appears to be 100% healthy even now. So it is very hard to tell how sick he really is--severe OCD is his only symptom. Dr. T's thoughts were that perhaps there is infection that we just aren't getting rid of because the antibiotic dosage isn't high enough. My son is 120 lbs. I'll post if we have any success. Thank you for your reply!

I read on this website that the adult dosage of augmentin xr is 4000 mg (two 1000 mg. tablets twice a day). http://cold.emedtv.com/augmentin-xr/augmentin-xr-dosage.html Actually, if you read the dosage given at this website, a child over the age of 88 lbs. could be given this 4000 mg dosage as well. Has anyone's child been given this high of a dosage? If so, what were the results? I wonder what the weight of "Sammy" was when he was put on augmentin xr. Perhaps he was only given 2000 mg. because of his weight.

MomWithOCDSon and Worried Dad -- How many mg. of Augmentin XR per day?

So glad to hear of your improvement as I know you have suffered so much. Do you know if Angelica will require you to come off of antibiotics before treating? That is my biggest drawback to homeopathy--I'm not willing to take my son off of antibiotics as he regresses when I do.

I was wandering if I could get a list of the antibiotics your children are currently on as a reference for my son. Are any of your children on more than one antibiotic? Which ones? I am interested in the ones your children are on right now, not those they may been on in the past that didn't help. Also, do you feel that the antibiotics your children are on are working? My son was on biaxin 1000 mg and just recently had augmentin xr 2000 mg added. Biaxin gave some relief but nothing exceptional. Can't say about the addition of augmentin xr yet as he hasn't been on it for very long.

So the thought then with PANDAS kids is to treat the strep with antibiotics, then do steroids or IVIG until the inflammation goes away, assuming the strep infection is gone? I can see how the PANDAS doctors are thinking this way as they are quick to offer steroids and IVIG. But what if the infection isn't gone? And how do they know? And what if there is more than one infection besides the Group A strep? Sorry, just some random thoughts as I try to figure out all this PANDAS stuff. I do think, at least in my son's case there is still infection. Not sure if it's lyme exactly. The doctor is running lots more tests looking for infection--viruses, mold, gut anaylsis.

I would like to request a viral panel from my doctor tomorrow, but don't know how to ask. What tests are important? Would anyone happen to have specific information that I could give to the doctor (lab test name and cpt. code). I would prefer a test done through Labcorp or Quest as they are in-network for us. Some tests I've heard about--HHV6, HTLV-2, EBV, CMV, Coxsackie

I would like to request a viral panel from my doctor tomorrow, but don't know how to ask. What tests are important? Would anyone happen to have specific information that I could give to the doctor (lab test name and cpt. code). I would prefer a test done through Labcorp or Quest as they are in-network for us. Some tests I've heard about--HHV6, HTLV-2, EBV, CMV, Coxsackie