Topaz1968 Posted August 22, 2010 Report Share Posted August 22, 2010 My son is 9 and saw Dr. B last week. He started on abx about 5 days ago. However, instead of getting better, all of sudden symptoms are worse. I know he is excited as we have family in from out of town, and school is starting in a couple of weeks, so that may be the cause. I was just hoping the medicine would start kicking in by now. He has started a throat clearing tic, which he never did and now he is having nightmares and more frequent bad thoughts about murders and killings, etc. He is not sleeping well and I know this can also be part of it. He is taking Tenex, which he started about a month ago. It is so hard to keep track of everything, I am not sure what to do. He does not want to go to sleep because he is scared of the nightmares, this whole thing is driving him crazy and I am scared it may be too late to help him. I am so nervous and scared for him, I hate to see him this upset. Has anyone experienced this at all? Thanks Rachel Link to comment Share on other sites More sharing options...
Worried_Dad Posted August 22, 2010 Report Share Posted August 22, 2010 Hang in there, Rachel. If your ds has an active infection, then the abx can absolutely make things worse before they get better. Are you familiar with the Herxheimer reaction? If not, SF Mom has posted some great stuff on this: http://www.latitudes.org/forums/index.php?showtopic=7800 We've seen this kind of spike with some of our son's treatments (both abx and IVIG - Dr. K calls it "turning back the pages" post-IVG, for example). We saw a brand new vocal tic emerge, for instance, after our 1st round of IVIG. It's very scary, for parents and kids... but if the abx is doing its job and killing off the infection, the immune system does get stirred up before things settle and you start to see improvement. Other folks on here have posted about 10-20 days or more of treatment-dose abx before they saw the noticeable progress begin. Dr. B is top-notch, from what I've heard. If you have doubts, definitely contact him... but it's not at all unusual for children's symptoms to worsen in the first week or two after starting serious PANDAS treatment. As you may already know, many parents have also seen short-term symptom relief from ibuprofen when PANDAS children are really struggling. Maybe try some Advil PM for your ds at night to help him get to sleep? Melatonin also helps many sleep-challenged kids on the forum. Our son had terrible sleep issues, but these seemed to help him. If things get really rough, you could also ask Dr. B about a steroid taper to help reduce inflammation and moderate the symptoms. You definitely have more options to explore if necessary. Good luck. You're in good hands with Dr. B! Link to comment Share on other sites More sharing options...
saidie10 Posted August 22, 2010 Report Share Posted August 22, 2010 So sorry your son and family are going through this. It is truly heart wrenching to see your child suffer. Have you talked to Dr. B yet? Is the Tenex for sleeping? We give our DS Melatonin and it worked wonders for us! He went from getting 4-6 hours of sleep to up to 10 and that really helped with mood and tics... Link to comment Share on other sites More sharing options...
Topaz1968 Posted August 22, 2010 Author Report Share Posted August 22, 2010 (edited) Thank you, Worried Dad, so much for the reply - that really helps. A lot of great information there. At least I know it does happen. I had heard that about the ibuprofin - great ideas for the night time Advil - thanks!!! I will look into the Melatonin as well. I just read about The Herxheimer Reaction - that is also great info!!! I am learning so much here Thanks again - I truly appreciate it Edited August 22, 2010 by Topaz1968 Link to comment Share on other sites More sharing options...
Topaz1968 Posted August 22, 2010 Author Report Share Posted August 22, 2010 (edited) Thanks Saidie - I am definitely going to look into the Melatonin The Tenex is supposed to be for his tics. Not sure if it is working or not. Edited August 22, 2010 by Topaz1968 Link to comment Share on other sites More sharing options...
trggirl Posted August 22, 2010 Report Share Posted August 22, 2010 I can tell you that for us, we started Intuniv, which is the same as Tenex only longer acting, and we had the same results. My daughter had nightmares and bad thoughts and horrible tics. I think it could very likely be the Tenex rather than the antibiotic causing your problem. We were not on anything else at the time so we know without a doubt it was the Intuniv. And as soon as we stopped the Intuniv, she improved. We then started Augmentin and had wonderful results. Link to comment Share on other sites More sharing options...
dcmom Posted August 22, 2010 Report Share Posted August 22, 2010 I will second Melatonin being a lifesaver for both of my girls! Link to comment Share on other sites More sharing options...
Megs_Mom Posted August 22, 2010 Report Share Posted August 22, 2010 I am scared it may be too late to help him. There are quite a few threads about this - even very severe cases find help and hope in treatment for PANDAS and related illnesses (PITAND). Thankfully, this illness does not cause permanent brain damage - so don't feel like because you have not found relief yet, that this means it's not out there. It is. I know how hard it is every day - and no child should have to feel like this for one minute. But as they heal, they forget much of how bad it really was. The one that never quite recovers is the parent! I know it is impossible not to worry - but just wanted to send you some words of faith - that I believe there are answers for all of our kids, and thank God for the doctors that are willing to help us. I would second (or third) the advice above to call Dr. B, and see what he advises. We also find that a dose of Motrin about 30 minutes before bedtime can really help. We did not use melatonin, but have heard wonderful things about it. Link to comment Share on other sites More sharing options...
Topaz1968 Posted August 22, 2010 Author Report Share Posted August 22, 2010 Thanks so much for all the great replies - it is so interesting to read about all the experiences and how much there is in common. My father is an immunologist and I will be sharing this info with him today. I am definitely going to start with the Motrin. My son slept very well last night and already seems a little bit better today. I will be sitting down with his new teacher and the school soon to discuss the latest updates. At the end of the last school year, I had a PPT with the school and now everything has changed. I still hope to get him the 504 plan that the doctor gave me a note for. I think he is going to need it. Any good threads on this for school? Thanks again I am so happy that I was referred here - such great support Rachel Link to comment Share on other sites More sharing options...
LNN Posted August 22, 2010 Report Share Posted August 22, 2010 I don't have any personal experience with Tenex, but had the same thought that it could be part of the problem. Without abx, meds like Tenex or SSRIs may help for a time. But after awhile, in Pandas kids they seem to be less effective and in some cases, can add to the problem they were supposed to help. However, stopping any medication should not be done without a doctor's supervision and you would need to discuss some sort of taper strategy. My son gets extremely wired when he's excited. The Christmas of our first year of Pandas was a nightmare of excessive, unchanneled excitement. I remember it vividly. While I'm a big fan of the benefits of prednisone, we personally had a bad experience starting it while an infection was active. I think it made it worse. We've had awesome experiences with it when we started it after we were sure the infection was gone. So if you wanted to consider prednisone, my caution would be to make sure he's been on antibiotics for several weeks first and I might remove the tenex from the equation before adding something else as well. It's hard to not throw everything at this at one time, but adding and taking away at the same time can make it hard to know what worked and what didn't. Now to contradict myself - the ibuprofen may give temporary relief. We found it most effective when we gave it three times a day instead of just "as needed" - it kept things from building up. But it's not something you can use long term without doctor supervision (e.g. for months at a time). It's harsh on the liver. But to get you through a family visit, it may take the edge off. And to second Meg's Mom - some Pandas behaviors may need CBT/ERP therapy to help the kids re-train their brains to not indulge OCD. They may need something that helps modulate their immune systems. But as far as permanent damage to anything in the brain - there doesn't seem to be any. And the kids do seem to forget things that you yourself will remember for a long time. It's a long battle, but just because the answer may feel like a needle in the haystack doesn't mean the needle can't be found. It just takes more patience, more stubborn determination, than you wish it did. But you're not in this alone - you now have a group who will help you through this. We hand out hankies, but we also hand out lots of research and warrior knowledge. Hang in there and keep us posted. Laura Link to comment Share on other sites More sharing options...
PKM Posted August 22, 2010 Report Share Posted August 22, 2010 My son had a bad reaction to clonidine (which is an antihypertensive like Tenex is). He had a dramatic increase in movements and had a lot of trouble sleeping (no nightmares - he just couldn't sleep while he was taking it). My son's negative reaction was immediate though (the next day). So it sounds like it could be a "turning back the pages" type of reaction or like TRG girl said - maybe the Tenex is playing a role. PKM Link to comment Share on other sites More sharing options...
Topaz1968 Posted August 22, 2010 Author Report Share Posted August 22, 2010 I agree that I think the Tenex is not the best thing for him right now. We go back to the Neurologist next month, so I think I will tell him I want to wean him off the Tenex. I will look into your other suggestions - so much to think about - but great info. Laura - thanks so much - always a help Rachel Link to comment Share on other sites More sharing options...
T_Mom Posted August 22, 2010 Report Share Posted August 22, 2010 This was a really good thread for me to read tonight. Our oldest d is in the midst of a mild episode, but definitely having symptoms (moderate OCD intrusive thoughts, anxiety, focus.) I tried to cut back on the abx, and did so incorrectly ...she flaired. (She was also exposed to strep/friend in mid-July.) We are switching antibiotics to Augmentin XR...I keep thinking "it" will just GO AWAY, right away. I needed to be reminded the recovery from a flair takes time, thanks-- Link to comment Share on other sites More sharing options...
cab40 Posted June 18, 2011 Report Share Posted June 18, 2011 (edited) anyone with pos exp with tenex? Edited March 23, 2012 by cab40 Link to comment Share on other sites More sharing options...
mkur Posted June 18, 2011 Report Share Posted June 18, 2011 anyone with pos exp with tenex? Tenex was a wonder drug for my son for impulse control. It helped him during the mornings at school until about 2pm or 2:30pm and then he would have problems - mostly at home. But we needed help - any help. I don't remember the mg's but he took 1/2 tablet am and pm. There is a time release version available now - not available 12 years ago. I think the time release would have helped him. It became ineffective after a year - but I think he became sicker and more problems developed - there was no treatment plan for Pandas 12 years ago. Link to comment Share on other sites More sharing options...
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