GatsMom

Mine does that with benedryl! Mine does well on Loratidine 10mg. He also did well a few years ago on Singulair that was given more for immune modulation than actual allergies but certainly helped with his seasonal stuff as well. Over on the MB12/Valtrex yahoo group today a mom (one of the brilliants, too) reported big success with her son's PANDAS symptoms with Ketotifen (an anti-allergy/antihistamine with secondary effects on the adrenergic system. I called our pharmacist whose been watching my son's journey for 5 yrs to ask her about it. She says from what she can see it's not available orally in the U.S. (The mom online is in western Europe). It is sold here in the form of an eye drop marketed as Zyrtec Itchy Eye Drops or Clariten Eye. Possibly available in Canada with an Rx. May be worth further investigation.

You may want to think about adding zinc, too. If you child is a low methylator (and honestly, I'd bet most PANDAS kids are) she will be deficient in zinc on a good day. It will help lessen the severity of cold symptoms. Try to give it away from other supps, particularly calcium. My son is 16, 125lbs and I dose 50mg before bed along with his melatonin and probiotics. Zinc was one of the first things our DAN! put into his lineup years ago and even when times are good, I add it and vit c back through the winter months. HTH

I'm sure sorry you're having a rough week but I, like many, think you are one amazing young woman! Oh yeah and p.s. my nearly 17 yr old PANDAS son saw your pic and is suddenly way more interested in latitudes and the copious amounts of reading I do on his behalf than ever before...go figure!

Would you mind sharing the mg strength on all the components of this bedtime cocktail as well as the age of your child? Many thanks.

Our DAN! originally put my son on Amanditdine stating it was an "old antiviral". I would have to attest to its efficacy as my son had the mother of all herx's after 72 hours on it. Later, when his overall health improved, OLE pulled a big trigger for him.

My son is an ibuprofen responder. Hope that took the edge off for your son. I've learned to substitute vit c and/or zinc drops sometimes to at least get a little nutrition into him. At one time I even used gummy multivitamins. He always preferred a mint and I know the peppermint soothed his stomach which was always an issue, too.

I sure needed to read this...especially this week. Thanks you great moms!

I think we know each other from the other forum...? I don't have older kids but I am always shocked when I read something that is so earily similar to some of the thoughts I have had. I have told my husband several times over the last couple years that sometimes I just want to get in my car and drive away and not come back for a month. And guess what, one day over the summer I did just that (except i just went to my mom's, she and I got in a fight about whether or not my kids had pandas , and I was back home within 24 hours...sigh!). So unlike me to just up and walk out of the house, leave the kids with DH and just go, but I think a person can only take so much sometimes! I wanted to comment on what the other "mum" said, about getting to a good doc yourself. My levels, too, were way out of whack, vit d, mag, dhea, thyroid, blood sugar. this was after about 5 years of neglecting my self. I am feeling SOO MUCH better physically, in fact I just got off my antidepressant and am maintaining on 5HTP, and we too are still in crisis (gut stuff). I started doing yoga, too. My point to all this is that if you don't do these things you WILL crash. That's what it took for me to start making this a priority. I see that you did the DAN protocol, just wondering if you have tried LDN? That is huge for my boys for pandas. Also, when DS6 recently had strep I tried some 5HTP to take off the edge and it did wonders for his moodiness. Just some random thoughts...hope it doesnt' go against what you needed at the moment! Hi Stephanie, yeah that's me from the other board also. As a matter of fact I started both he and I on 5-htp today 100mg. Neither he nor I are on anything resembling an ssri, SAMe or methionine so there was nothing standing in the way and I keep hearing more and more about it. I'm just praying for no stomach upset which can be a deal breaker in a hurry for him. I've been reading the chatter about LDN too and the only reason I hadn't tried it yet was because of herx potential..the other big deal breaker around here, but I'm ready for a low and slow trial. We've got methylation well supported now. I've got Lyme on the brain right now as we've never had an Igenex test and the kid is no stranger to stomping around out in the woods, camping and 4wheeling with friends when i remission. Any idea how to find an LLMD in this area...tall order, I know. One more thing worth mentioning. We're on day 50 of zeolite drops for metals suspected from a couple really bad vaccs at 15 mos and 11 yrs. Everytime I try to ramp that dose to something close to normal he gets edgy. Currently we're getting 6-8 DROPS per day in. Since he'd been doing so well I took it to 10-12 drops on Saturday and things have been getting edgier by the day. Amazing. Some research has also found this zeolite has an antiviral quality and I'd bet my house that's what's tripping him. He is SO sensitive to antivirals. The OLE we take is as much for its antiviral qualities as abx and he takes less of that than your little guys do and can tolerate no more. I keep it up b/c I KNOW he needs this. I don't have a DH...what I have is a PITAXH if that makes sense. He loves Gat but he has huge responsibility issues which gets him off the hook for research/caregiving/tutoring/advocating/etc. My 23 yr old DD is my lifeguard who occasionally pulls me out of the pool I'm drowning in. I'm hoping the 5-htp does it for me, I really don't want to go the ssri route. Regardless of meltdown, I've forced myself to the gym for an hour spin in the evening the past 2 nights. Very stressful but very necessary. Stephanie thanks for all you do! Email me privately if you know the dosing schedule for LDN.

I know the feeling, like PANDAS is sucking the life out of you... It seems you are giving all you've got in terms of treatment. It is so draining, the mental stuff... They want you there, they want you to support them, their need is real, but you look at them and you know it doesn't make any sense. They know it doesn't make any sense, but they can't help it, and you can't help them, cause no matter what you say or do, it doesn't help. I HATE THAT. So frustrating... My original PANDAS ds, now 13, is doing better now that we started Lyme treatment. My dd10 I'm pretty sure has PANDAS and/or Lyme, and we are seeing an LLMD on Friday. With her, the fears, the doubts, the tears, the depression, the constant need for reasurance is totally freaking me out. I don't want to do it. I keep shutting her off, I change the subject, I send her off to do something. I feel like I'm being a meany, but when I try to help her out, we just go around in circles, and I get very frustrated (maybe I'm a little PANDAS) Well, I am not sure if this help you at all, other than misery loving company... I see you've tried many things and I am not questioning your decisions, but a T&A might not be such a bad idea if progress is not significant. According to our doc, the tonsils can become an absess and then they just kind of block off the abxs and you don't get anywhere. She said they had patients on antibiotics for months and months without progress and once the tonsils were out, then the antibiotics started working. Hope you feel better. You know you are not going anywhere. I do sometimes fantasize about a different life, but it's a waste of mental energy. It is what it is, and we have to make the best of it. God bless, Isabel Isabel, you really nailed it. Exactly it. It was going to take me 25 years to get my 2 kids to age 18. I couldn't wait to be a parent, totally committed to it. Now 23 years into a 25 year job, I've hit the wall. I have so little patience for the insanity and it is the most thankless job on the planet. Thanks so much for taking a minute to remind me these may be horrible feelings but there is also a degree of normalcy in them...especially when you've been going at this as long as we have. I had to laugh at the "you know you're not going anywhere" part, probably right but honestly something has to improve soon. Thanks again!

Like everyone, I'm so sorry you, your child and your family are going through this. Like Emmalily, my son whose 16 is tripped up often with a gag reaction. Also like your son, he spits when the gag reaction is at its worst and it will often be the catalyst to a full blown panic attack. While he's better now, there was a day when he was highly sensitive to tags/seams/rough clothes/heavy blankets or coats. Just writing to tell you that bad as it is, you aren't alone and there are people here who will understand to the point of giving you understanding of his condition.

Whats the dosage you use your yourself? I actually happen to have this product in our arsenal, bought originally for me more than a year ago. It's still in date so I can start it today as I take nothing else but a multi and omegas.

Appreciate you input! What abx are used for lyme? Do you work with a LLMD? Thanks very much!

I keep coming back around to Lyme. We have not tested thru Igenex, only labcorp. My ds16 is positive for strep titers and mycoplasma p. (or at least he was in april). Thru winter and spring we did 7 weeks of Azith 500 right into 6 wks of the Sammy dose of Augmentin XR right into 10 days of Biaxin CR once the myco was discovered. His gut was a train wreck. he was so, so sick. Homeopathy and TCM helped stabilize him after the abx nightmare. For homeopathy we saw the great and powerful Michael Payne. He was difficult to talk to, relied too heavily on zyto BUT he did put Gat on a remedy called Psy Stabil that was quite effective. See the ingredient/condition list below. Just found out there's a homeopath in our town, a female who specializes in vaccinosis (and we can trace back to 2 major vacc injuries that were certainly fundamental straws on the camels back). http://ronniesremedies.com/psy-stabil.aspx Regarding crying. I'm an expert. It is the one single act that has kept me standing. Things are just now improved enough that I can get back to the gym for short periods of time and it helps to close my eyes and spin. Thankfully I have a cousin with a PhD in psychology whose very helpful as there is zero money for me to obtain counseling. Lyme wouldn't surprise me. When he's in remission he's a total outdoor kid and we live right outside the Great Smoky Mtn Nat'l Park. A time or two in his life I remember pulling a tick off him. Thanks for the word on meds for me. I guess anything's better than me getting in the car and driving off. Just knowing someone else understands is so helpful and I'm very thankful for this board.

I'm searching for that email now but you really hit the nail on the head. For a few weeks I have an overwhelming feeling that it might be my time to get off the train. For the last five years and intensely during this last until very recently I somehow find the strength to go another day. I've always been so thankful for that tenacity but now it's nearly gone. Career and financial ruin, all nurture going out, nearly none coming back in, and a kid who's recovered enough to break away when he's motivated for short periods of time but not recovered enough to grant me my life. I work in the fringe of healthcare and I know all too well what this can add up to within any organism. Thank you all so very much. All day everyday I watch people go on with lives, whining about day to day things and all I can think is that I'd give anything to have a life where a low checkbook balance was my biggest concern. Your responses help me to recognize that I'm not alone and I'm so grateful that you've all chimed in.

Amber, did the 5-htp give her any stomach upset as she started on it?

This month marks one year for this hideous exacerbation. Abx, TCM, homeopathy, DAN!, methylation support, TrueHope...everything short of pex, T&A and ivig. All of them gave some small order improvement but with a quick plateau. His gut is 100 times better but still no school, anxiety and panic attacks ranging from 1 per day to 1 every few days. His quality of life is slowly improving and I can't say honestly that anything but time has really helped. In the end, it will be the separation anxiety that kills me. I've looked repeatedly online for resources for sep anx in a teen and how to survive it as the parent they are on top of. I've been parenting for 23 years, so dedicated to these kids so having the feelings I have is foreign and so uncomfortable...and I'm ill-prepared for how to dig myself out of it. Does anyone else have this going on?...a burning desire to just get in the car and drive before there's nothing left of you? ugh. It's such a horrible disease. Any of you parents of the older kids, please feel free to offer some guidance to a mom that's going down fast. Thanks a bunch.

I'm interested in this as well. We're on our third big trial of GABA in the last 5 years and I still can't see a difference. Have read recently that L-theanine is the better choice because it's more usable by the body.

We've had a very similar recent course except we've not done ivig. Healing summer after a horrific winter. 3 weeks back to school after seeing pretty impressive results with Truehope protocol (which I still believe has significant merit) then a huge crash out of nowhere 4 wks ago. Hasn't been back to school since. In the last 10 months we've tried everything but ivig (homeopathy, TCM, diets...everything). I started reexamining the pieces of the DAN! protocol he was on in middle school (that turned things around steadily) and found all elements we used supported methylation. Have you considered that this kid may be a low methylator with some heavy metal issues complicating things further. My ds16 isn't autistic but boy does he respond quickly to supps to support methylation which, coincidentally, are supps also used to chelate heavy metals. Not that you don't have enough to think about, but I'll just throw it out there to consider. Mine's not back in school yet but much better than 4 wks ago and I saw the change, literally, 3 days after starting him on the supps. Otherwise, my prayers are with you, I know exactly how it feels to see hard won gains gone in a day and a high school age kid lose hope in his life. Gat's mom

truehope.com Pretty amazing story of how the product came into being. I've known about it for 5 years, since my son's last exacerbation. Paula swore by it for her son. Back in the day I didn't try it because we were just starting on the DAN! protocol and truehope seemed to simply duplicate much of the DAN! and I didn't have the money for both. It's never left my heart, though. Our current exacerbation is in its 8th month. He responds clinically to abx but has huge gut problems from them. We've had some success with TCM and homeopathy and dietary changes (a combination of all 3) but we had still hit a plateau. My thoughts kept going back to truehope. Did a lot of research, prayed long and hard on the decision and pushed forward. The product is originally designed for bipolar disorder which Gat doesn't have...but then again, Gat's not autistic and did very well for several years on the DAN! protocol. Truehope's been around for 10 yrs and they've now had much success in all central nervous system disorders. Strep, Myco, Lyme...whatever...there's got to be some sort of CNS hitch in these kids. We're on day 37 and only day 18 on what would be considered a therapeutic dose. It's all vits and minerals and if the child is psych medication naive then its a walk on. Mine's had a history of ssri's and anti-anxiety meds so we had to work up slowly. If nothing else, I think Gat will be a better candidate for a possible repeat try at abx somewhere down the road because he's in a more homeostatic state from a CNS standpoint. My words, not truehopes...but the concepts of Jacqueline McCandless's "Children with Starving Brains" are similar to the base concepts of truehope. When proper nutrition is made available, the body, as well as the brain, will return itself to a homeostatic state. It touches on my beliefs about the body and what I've seen in my own work as well as the work of recovering my son. I'm always so happy when I hear about the kids that really do great on abx, ivig, etc. I think this is just another avenue to explore and right now we're seeing good things but I'd sure like to see how Paula's son is doing these days. It's been several years since we last spoke. She was a seasoned PANDAS mom at the time we were just getting a diagnosis. Truehope has AMAZING support but they cannot put their finger directly on other PANDAS patients to compare notes. Hope that helps.

We're in the middle of week four for my son whose 16 and a junior. He missed second semester of sophomore year. He's pushing hard to get in the school everyday but more often than not he gets it done. Everyday that he does is another victory under his belt and he thrives on those. All the while, most of his friends still don't know and we only let a teacher in the loop when we absolutely have to. School admin knows but they keep quiet. He either blends in really well or not at all...very little middle ground. We just do our best to breathe through the days when he can't get in the door. I know you hear it often from the group...but I'll add mine..you're an impressive kid for taking the bull by the horns on your own! Gat's mom

Anyone in this group who was once part of that group remember Paula or know a way to contact her? Her son would be about 18 now. She was a big fan of Truehope in her son's recovery and we're having significant success with it now for the past 40 days or so. I'd love to reconnect with her if anyone has contact info they could share. Many thanks, Gat's mom

I have nothing to base this on except my gut and my observations. My ds16 is a PANDAS kid. We are 8 months into a horrific episode. He never "comes down with" strep and never displays outward symptoms of strep so it's always an unhappy surprise when he backslides. Even though his titers support PANDAS, each of his 3 exacerbations have coincided with some other event (or stress) in his life. Age 8 and age 11 they were emotional stressors and life changes. This time, however, all was really good. The only thing going on was that I had 10 yr old carpet pulled out of my house and laminate flooring put down. The job was done on four consecutive Saturday and the house was filled with dust and fibers every Saturday night (that I would clean up completely the next day) but the next assault would come the next Saturday. If this home project didn't push this exacerbation along, it's an awfully big coincidence. One of those things I can't prove but strongly suspect in my heart was a contributing factor. Best wishes to you. ~Gayle

Hey Karen (and Misty), Do you think it would help if you were doing something prophylactic in nature? Would that help ease your mind that you are giving him an edge and not just sending him back as just another kid who may or may not contract a strep when it passes through? I'm not necessarily suggesting an Rx antibiotic but how about olive leaf extract (a natural antibiotic/antifungal/antiviral)? Also keep in mind that you probably have other protocols in place that will give him an advantage over his peers when it comes to contracting anything opportunistic...like exceptional probiotics and a good multivitamin not to mention other pieces of your protocol designed to address immune function. Try listing (in writing) the things you do to assure his safe passage through strep season that you never knew to do in your pre-PANDAS life. Gayle

We're just one case and others may disagree but in our house when he drops a behavior and picks up another, the new behavior is usually slightly less restrictive. Historically, that trend continues and eventually all behaviors dealing with the fear are dropped. Mine has the food contamination fear, too.

Emmalilly, We need to talk. We're staring down the barrel at at least another semester at home. This should be his junior year. Sweetie, I'm so sorry you're sitting this semester out but you've got such an exceptional head on your shoulders that I know you will find things to do with your time that are way more than time fillers. A blog from the PANDAS patient perspective in your age group would make an outstanding read and you have the writing abilities to do it. I can assure you, I'd make sure Gat read it. I have clients in my practice that struggle with going on disability for their conditions. I have explained it to several as looking at their recovery as their job...and all of the things the incorporate into their lives like my services, medicine, rest, yoga, journaling, spiritual growth pursuits, etc are all considered "therapies". The job becomes incorporating "therapies". I have 2 clients who've adopted this approach in the last four months (one male, one female) and both report great success with reframing how they view this "time on the bench". Just thought I'd pass it along. Hang in there, g