Kathy4Him

ds was tested every month as his liver enzymes were elevated and continued to go higher for almost 2 yrs. High dose steroids over a month finally lowered them, but Dr was diligent about checking.

cyberdog, your story parallels my son's who had sudden onset ocd at age 19 and it has become severe, he just turned 24. It took me a long time and many tests and also ssris to convince dr to try abx. He has been on sithromax since October 2012. We have also recently used biaxin for a few weeks. At one point another dr prescribed minocycline but we did not use it. I hope it works for you. please let us know!

Nancy, I am thinking the same thing. My son who is now 24 has NEVER been violent, never had the rages...except the time Dr put him on zyprexa and he tried to throw his cell phone, took him off that quickly. He is the most non violent child, always smiling does not even curse...ever. I hate that anyone would try to characterize a pandas child as violent and capable of such violent acts. I always wonder about tv shows, movies, and video games in these cases, among other things. With that being said, my heart and prayers go out for the mom who has to journey thru this nightmare. So sad!

Sending hugs to you and praying for you and your son!

Thanks moms, I guess I don't really know what is a herx what is not, when we gave ds biaxin a few weeks ago within a week or so he started with movements such as turning his head right to left which increased as days of biaxin went on. He began to move much slower throughout the day, eating breakfast by 12 pm and taking 5 hrs upstairs to get showered, dressed, whatever he does till he would come downstairs, this of course unless he had counseling mon wed fri at 2pm. I thought the med was making him worse so after 2 weeks changed back to zith. within 4 days head turning stopped. Now I wonder if I should have kept him on biaxin. Do you moms think med was helping and that is why he was acting the way he was? I have no idea what to do. Dr. wanted to try biaxin for 2mthsat 500mg day. Does herx tend to make ocd worse and how long does it usually take to see a difference for the better? Thanks so much, I am def. in need of help. Kathy

Moms, what are some of the things you see with herxing?

I have consistently asked him to increase to 500mg, his response: "duration not dose" UGH!!!!

I know I can find this in old posts but hope you will not mind reposting as I am hoping to get an email off to Dr. by morning. My ds 24, is on zithromax 250 mg daily. We have also used biaxin 500 mg daily in lieu of zith. He is allergic to penicilllin, augmentin, keflex and omnicef. His Dr. told me tonight he will consider using combo abx and wanted to know what is working for others. In addition, he is open to vancomycin, clindamycin, acylovir, zovirax, and rifampin. Please let me know if any of these are helping and what abx combos are helping. Worst thing are ocd behaviors and tics Head turning. Thanks a million, you are all the best!! Kathy

I tried to pm you but you cannot receive any new msgs. I was wondering what it was that helped your son? Thanks!

Thanks, Heather. I was able to read article, I just did not see a link to generic meds to watch out for.

Can you post the link please, I must have missed it. Thanks

Ronald McDonald House is only available to families with children under 18. We stayed at the Hampton by the waterfront. The mgr gave us a deal as we were there for 4 wks. Checked out on weekends to visit family in Orlando and he saved our room which was extra large.

I have noticed a few of you are using antivirals. Our ds Dr recommended amantadine but we have not tried it yet. Can you tell me if you are seeing success with ocd symptoms, and which antiviral you are using? Have any of you used amantadine? He is on 500 mg biaxin daily. Thanks! Kathy

Thanks LLM, I see all 3 things are included in 23 and me. The trouble for us is due to his ocd being so bad right now, he is refusing to do labs, urine test and x rays and won't let dr swab cheek so we were going to get dentist to do it while cleaning his teeth. I bet I can't get him to spit either. Will talk to his Dr. about this. Would be quite a savings!!! CYP2C9 CYP2C19 and CYP2D6 are the genes tested.

D's mom I do not know and I have wondered will there be withdrawal when we stop it. My son has not been able to tolerate ssri's at any medium to high dose. His Dr. just gave me info last week on a genetics test done by Iverson Genetics to check his metabolism of drugs. We are going to do it. It is just done by swabbing inside of cheeks. Do not think BCBS will cover so cash cost is $1150. However for anyone with medicaid, I understand it is covered in full. Some of you may want to check into this if your child has problems taking certain meds. We have had the problem with elevated liver enzymes in the past and this test will help identify why, if caused by meds.

I buy the New Chapter Brand from I Herb online. 300 mg a pill. pills are very small so easy to swallow.

I wanted to share our experience with lemon balm so far. We had tried it with our ds, 23, a few months ago and after about a week determined it was not helping, and may be making him more depressed and fatigued so we stopped it. About a month ago, we stopped prozac 20 mg switched to very low dose of luvox, 25 mg, and started lemon balm again...300mg twice a day. We did this with his drs approval, primary care, rheumatologist, and neuropsych were all in favor of this. Since this is the 3rd time we have tried to stop prozac over the last few years with no success due to awful withdrawal, I was hoping lemon balm would help with that. So far, it has been a positive. We are on day 15 of no prozac. Dr. told me it would stay in his system for 21 days. So far, he has done well. Stress level is fairly low, he is smiling a lot and still eating which is a really good thing. I attribute this to the lemon balm as the last time we tried this15 months ago with no lemon balm, it was a disaster. stopped eating for 3 days would only drink 1 glass of water, severe panic attacks, dropped to 118 lbs in short period of time. I am glad we tried it one more time. I will keep him on it until he we are sure prozac withdrawal is not a problem. Important to note, it does not help with ocd symptoms. He is on 250 mg biaxin twice a day.

iowadawn, please send me the site. thanks!!

My son's Dr prescribed this today. I am wondering if anyone who is using this has an update? Thanks

Probiotics actually caused tics in my ds, 23. We stopped them and tics stopped. There are so many differents kinds so you may have one that is helping.

I would imagine we moms can all relate, and in some crazy way it unites us and well...misery loves company. lol. I have had some really tough moments in this almost 5 year struggle, but we have to hold on to the hope that our kids will get thru this and be healed one day. Some how, some way, God will make a way!! Until then, we have to continue to search, research, and encourage each other in this journey. I am so thankful for this forum and the pandas fb sites, just to know I am not alone.

My sons Dr. just told me last week that night sweats were a good indication of fever and infection.

Joan...was your son the baseball player I read about on McLeans sight, youngest to go to OCDI? My son souns similiar in that we have been doing this almost 5 years and he is paralyzed with ocd fear. We have looked into Mclean but he was not medically stable at the time. Thinking we need to reconsider now. Can yo share how treatment helped? Thanks! SO happy he has gotten his life back!!

4Nikki, the same thing has occurred with our son. In the beginning, June 2008, he spoke normally but as time went on we noticed changes. he would send me text from college that would say "made" which meant he arrived at campus words that made no sense. Then in Nov 2009, he just stopped speaking all together. Then he would say a few words to a few people but usually they made no sense. Since Nov 1 2012, he has begun speaking again, a sentence here and ther, 5 times he has spoken for an hour or more. hard to get words out and some make no sense but he is trying.

Falling Apart: I was also concerned about that as my ds, 23 was on prozac. His neuropsych said it would be fine, his rheumatologist said it would be fine. I was cautious but decided to try. It is fine so far. Literature does say it contradicts with prozac and several other ssri's. Could not find anything on luvox which we are switching to at a very low dose of 25 mg.