Suzan

Us too, I've been noticing that dd8's teeth are discolored too. She can brighten them up but the next day they looked stained again... hummmm.... Susan

Susan, I was thinking of you and Meg and the ulcers last night as dd's stomach was hurting (as usual) and her throat "felt hot inside" and I started wondering about heart burn which made me wonder about stomach acid.... LOL, knowing NOTHING about any of this, I thought I'd post.... I've just skimmed through all these great posts above and not absorbed much yet. But I'm wondering if dd is experiencing something similar. Susan

Yes, we use Kids Calm. It's true that too much will cause diarrhea but we have not had that trouble here. I give whatever dose it says on the container for my kids with no trouble and I do use the salts and the supplement at the same time but, when we were using the supplement, my dd was not much into baths and we weren't doing the foot soak yet so the soaks were not a daily thing. One dd is 8 (67 lbs) and the other is almost 7 (43 lbs). If I'm remembering correctly I give them 1/2 tsp 2x a day for my older dd and 1/4 2x a day for my younger of the CALM and they like the lemon flavor the best. Start small and work your way up as much as they can take with no negative bowel effects. I like to take it too, it helps me sleep Susan

Oh I am so sorry. I can imagine you crying in the office because I'm sure I'd do the same thing! Thinking of you guys..... Susan

I use melatonin every night to get my hyped up kids to sleep. We don't have much trouble once they get to sleep (at least any more but trust me I was sleep deprived for years!). I hear there is a time released melatonin that might help with staying asleep. In addition, I find that keeping the magnesium levels up this will help them sleep. Epsom Salt baths or magnesium supplements like CALM. GOOD LUCK! Susan

No Tourettes or tics here at this point. OCD, ADHD, Sensory Integration Disorder mainly.....

Our doc writes a prescription for a month at a time with 1 refill and so far I have not had any trouble getting the insurance company to pay for it. I noticed improvement after 2 days with a huge difference after 5 days. We did 250 mg for dd's weighing 43 and 67 lbs. 4 weeks at full dose and then I started cutting back. Now we are on 500 mg 1x a week. I'll do that while it works and stock pile the antibiotics so I can up it when I need to. I never thought I would be a hoarder of abx! Susan

We see a Dan! doctor in Charlotte, NC. He new to PANDAS but helping us nicely. Of course Dr. Latimer is an expert....

The blood draw was horrible. I think she will be traumatized forever now about this. She swears she will never willingly walk into a lab. They could not get enough for everything but we got most of it. I forgot they also were checking her vitamin A and D and IgG subclasses (those were missed in her last immunology tests). They could not get the Vit B2 or 6. Hopefully the doctor will say he doesn't need it. She's been stuck 6 times in the past 24 hours I sincerely hope these show something that ends up being helpful. Susan

GOOD LUCK, thinking of you guys... Susan

Ped has us on zith, 500 mg weekly so he's agreeing that this is OK. I guess we will just continue until further notice. We discussed her history and current symptoms and she gets canker sores with every cold, episode, etc. I know this was one thing that got him on the new titer checks. I think we got distracted and overlooked some of his ideas but I hope not, especially since this draw is proving to be difficult. I think I'll call tomorrow to be sure we got everything. Susan

of course now that I've looked up HSV virus I'm a little freaked that it is herpes but I know it does not have to be sexually transmitted... but still stress producing info....

Hi everyone... I took dd8 to see dd6's neurologist today in the hopes that he'd have some ideas of what is going on with her. He was very interested in Dr. Cunningham's test and research paper and agreed based on dd's clinical presentation that she does have PANDAS. He also agreed that it seems like there is something else going on with her immune system. He recommended she start taking Origin of Life broad spectrum multi vitamin right away. Then we took a bunch of blood (well tried anyway, she was stuck 4 times and they could not get it. Talk about starting up fears of giving blood so we go back tomorrow to try again). He ordered the Anti-dnase and ASO titers. Not sure why since he believes she has PANDAS anyway. Anyone know why this would be helpful now? Also, Copper, Zinc, B2, B6, B12, Ferritin (iron stores), CRP and HHV6, HSV1 and HSV2 which are apparently virus titers. He said he believes she's also having an immune reaction to these viruses or something like that. He's using a diagnosis code for ADHD. I'm not totally sure where he's going ultimately with all of this. But I thought I'd post what happened with us today in case it's helpful or in case anyone has any comments on what he's doing. He agreed with long term antibiotics for her. We talk again in a couple of weeks after the results are in. He is not an immunologist so we may end up getting referred somewhere else if it's above what he can do for us but I am feeling like I have some direction again and I don't feel quite so lost. Susan

I don't know but wanted to give you my support. Thinking of you guys and I hope it all calms down quickly. Susan

We get great relief from emotional outbursts from epsom salt baths. They calm her right down. We do a nightly foot soak since dd8 prefers to take showers. Susan

I have heard that it does not affect strep but I try to keep it out of our probiotics. I have not been limiting yogurt but the kids aren't big into yogurt. Susan

Congrats on making it through orientation! Sounds like Taylor will do just great (and I cried too when my girls walked off down the hall on their first days of school!). Staying healthy, that is the scary part. Good luck and here's to a strep and flu free year! Susan

What brand of probiotics do you use? How many pills, etc. does it take to get to the 200 b? Thanks!

We use Kirkman's Spectrum Complete. It was recommended by my dd's neurologist. Our Ped recommends Klaire's Complete or Threelac for our proboitic. I use them sometimes and then go for something cheaper for a while. I give proboitics 2x a day right now, the stuff I'm using now is 10 billion per pill. All are on the expensive side though so I keep looking for stuff I like just the same but cheaper. Susan

My dd is a whiner not a yeller and responds to most things with an initial negative whine or explosive emotion. Probably drives me just as crazy though. It's usually a clue that she is not feeling well so when it ramps up I try to pull out my hat of ideas to get her to feel better. Mostly I try to stay calm and not get mad which is really hard and I try to remind her to use a quieter voice, big girl voice, etc..... Susan

I totally agree. Without the test results we received from her, we would not have been able to get antibiotics from our doctor and I probably would still be doubting and wondering. I hope she will be able to continue her work... Susan

For us it was urgent, unexpected need to urinate and night time bedwetting, excessive wiping and neither of my girls feels comfortable to properly wipe their bottom. Also, not sure if this is related, but dd8 ALWAYS has to have a BM when we are waiting for the doctor to come into the room at a doctor's office. What's up with that?! Susan

I did see that article, it is great. I actually sent it along to someone else I know who has a middle school aged ds who is having major troubles with anxiety and school and she found the article really helpful. Thanks for reminding me about it. I'll go read up on it again....I like the idea of sharing it with the school. dd has a new teacher this year who is also leaving on maternity leave after 1 month. It's not feeling like a good start to the school year! She's starting up with the "Mommy, will you check on me, how long? In 5 minutes? Don't forget" before we go to bed. And she's asking if I can drop her off at school the first week instead of the bus, just the little comments starting, and the emotions kicking into high gear. It's simmering..... Thanks for your prayers. We need it! Susan

We will be getting one for the first time this year. I have no idea what t expect or how to go about it. The school is going to help so I hope we get something that is good. I know for DD8, I'm putting something in there about her sensory issues and hopefully that she will be allowed to wear something to cut the noise in the classroom. She was not allowed by her teacher last year and I did not push it but she's stressing about the noise level. And she is in a Montessori program. They should be quiet but with 24 kids in a class, it's hard I'm sure. Also, hopefully something about having access to a bathroom when she needs it (no with holding bathroom visits for any reason as long as I don't think she's abusing it) and if she's getting out of hand in any way, a trip to the water fountain, or some other errand to redirect her before just getting regular discipline. That never works but a nice walk or other job really helps turn her around. She usually gets keyed up because other kids in the classroom are crowding her or touching her too much. Our school just went to uniforms so I also will have permission to allow her to wear a non-collar shirt since those throw her into a sensory fit and cause her actual pain! Oh gosh, I could probably type on and on about what I hope for. I'm getting totally stressed about school starting next Tuesday. She's an emotional wreck and I think she's getting stressed too. I can feel the separation anxiety welling at our house. Susan

We are ready and on board here for any type of information collection! We are one of the "failed titer" families currently searching for a doc who might be willing to start the search with us. Susan