1tiredmama

I have Lupus. My grandmother, who died in her 40's from a "bad heart," may well have had undx'd rheumatic fever. She had severe neuropsychiatric problems--maybe PANDAS, we'll never know.

Yes, it can run in the family, just like other disorders can. Dr. L. was the one to tell me to have a second child evaluated after taking family history on the first child. She said it happens. As with your ds, my dd is not as clear-cut as the severely affected child, but I'll trust the expert to tell me how to proceed. I wouldn't give it another thought--set up an appt for your ds.

Thank you for sharing your success story. I'm some glad that Drew is doing so well! Like allboysmom, I am curious as to how long your daughter was affected by PANDAS before treatment. My son is nearing 18 and has been affected for well over a decade. It's anybody's guess as to how much progress we can expect with treatment. Thank you to Drew for enlightening the medical professionals on PANDAS! You are doing your part--YAY!

I hear you, Lisa. My son, too, was and is a very social guy. Once he hit middle school, the gap between him and his peers began to widen, and each year he fell farther and farther behind. He is 17 now. It has been disturbing to watch. As a teacher, I've tried desperately to coach the quirky/impulsive kids through social situations to keep them up with their peers. But, it's really, really hard. Hard for the child, the other kids involved, and the parents. From what I've seen, kids are pretty accepting of differences in elementary school, but not so much beyond that. When my son was 9, I had no idea he had PANDAS. His illness is a 14 year long runaway train. But you know what is behind your son's behavior. Your efforts to dx and treat this will be of tremendous benefit to your child. You have one up on many parents simply by recognizing that something is not right--you would be surprised by the number of parents who prefer to live in denial while their kids flounder socially. Do you ever role-play when the dust settles? Like try out a new ending/how could things have been handled differently sort of thing? Have you tried role-playing as a pre-emptive strike before going into a situation that you know might lead to embarrassing behavior? It has proven to be a useful tool for us. Some kids need some prep work, even if it's only a reminder to use a particular skill, before going into most social situations. Try not to worry too much. He will continue to mature. He may mature at a slower pace than his peers, but he will keep moving forward.

Your post warms my heart. I am so happy for you and your dd.

I don't know if a pedi would treat it proactively. Try not to worry. It happens at my house several times a year. I remove the tick and keep an eye open for ANY signs of illness/rash. I don't know a whole lot beyond the basics of lyme, but I figure we are in good shape if we catch it early. I can tell you that, even with all of our bites (we live in a wooded area,) no one has contracted a tick-borne illness. I hope it turns out to be a benign event for you.

This might be a no-brainer, but we all wash our hands the moment we come in the door from being out. I implemented this many years ago to cut down on stomach viruses, and it really works. We rarely get sick. When we do, it tends to be an air-borne infection that someone picked up in school. Also, wipe down objects such as remote controls, gaming controllers, cell phones, house phones, and computer keyboards (don't forget the mouse) with something like Clorax Wipes, especially during cold and flu season, or after your kids have had friends over. I do door knobs, too, when I know something's going around. Oh, and also, I wipe down the refridgerator/freezer handles daily as part of kitchen clean-up.

The first ENT that ds saw told me that his tonsils look healthy and removing them was unlikely to be of any benefit. When I discussed Dr. L's reasoning for wanting them out, I was told that all tonsils harbor germs. That all tonsils will culture positively for something. Any thoughts on this? Ds did end up getting his removed by another ENT.

I requested it and got it. No questions asked. Our ENT is fantastic! He also had the forethought to write ds a prescription for liquid Augmentin so that he does not have to swallow his daily horse pill. As the mom of a teen patient, that never would have occurred to me. Thanks for the advice, everyone!

Thanks, Kiera! No, you are not too late. Surgery is on Wednesday at 1:00 (technically "today" since it is after midnight here.) Out of curiosity, why do our kids need the extra abx?

Hoping someone sees this in time. Ds is scheduled for surgery at 1pm today. Should he have IV abx during the procedure? He is already taking Augmentin. Thanks!

Hello, and welcome! My ds has been on Augmentin for exactly one month today. On Day 4 or 5, we saw marked relief from severe, persistent nausea. He still feels nauseous occasionally, but nothing like before. In the last week, I have noticed that his mental fog is lifting. He is more present and engaged. He is participating in conversation, and showing reasoning and curiosity within those conversations. Before he was mostly in his own head. However, no improvement in tics or anxiety. No improvement in fatigue and other symptoms yet.

Thank you, S&S! I had never heard of him or his site. I thoroughly enjoyed his webinar. He is a terrific speaker, and he sounds like an exceptional doctor.

Oh, wow! I'm so glad I asked! Thank you all so much for the crash course in probiotics. I had NO IDEA!!! I would have most definitely purchased the wrong product.

Even though ds has been on a mega-dose of Augmentin for 3 weeks now without a problem, I'm thinking that a probiotic is in order. Are they all the same?

That's an AMAZING story! Thanks for sharing. I'm so happy for you and your son.

Hi! My ds has been ticcing for 7 years (just dx'd PANDAS.) I'm thinking that the stress of the stomach upset aggravated the tics. This stress-tic relationship occurs in both PANS and Tourettes. Think of the tic "condition" as autoimmune, the ups and downs (waxing and waning) are part of the condition. Increased ticcing can occur during illness, stress (even good stress,) or for unknown reasons. I would not discount PANS based on this event. Welcome to the forum!

{HUGS} I'm so sorry that your ds is feeling so low right now. I know how hard it is to watch. I have been watching my children suffer for more than a decade, and like you, I am eager to treat this aggressively. We are waiting for PEX. It has taken me a long time, but I have come to learn that this illness is a rollercoaster full of ups and downs. I try to remind my husband and myself when the bad times hit that it will pass. It always does. Hang in there. Vent as often as you need to.

Today was AWFUL! I worked this morning, then went home, picked up ds, and made the 90 mile trip to an ENT. We got lost both coming and going, so EACH way took 3 hours! Much of that time in a city I avoid because the traffic and the layout scare me. I thought this visit to this particular ENT was just a formality as our PANDAS doc wants ds's tonsils out, regardless of how they appear. Our PANDAS doc recommended someone, but when I called to make the appt, the wait was a few weeks out. His partner could see ds sooner. I called the PANDAS doc's office and asked if it mattered who we see. The receptionist told me that either doctor was fine--they both do tonsillectomies for the PANDAS doc. Well, after the 3 stressful hours on the road, we find out that ds is not a candidate for a tonsillectomy. This ENT tells me that my son's tonsils are healthy and, given the lack of history of strep throat, there is no need to remove them. I agreed that I do not want an unnecessary surgery, but I also do not want to be sent back to the ENT later because we did not follow our doctor's advice in the first place. I explained to him why the PANDAS doc wants even seemingly healthy tonsils of PANDAS kids removed. And, this guy contradicted our doctor. I thought they were in agreement on PANDAS treatment protocol! I could have gotten this same assessment 20 minutes from home! Geez, I could have done it myself! I'm ticked off over making a needless trip, and I'm absolutely exhausted! GRRR!

Hi! I am wondering what my ds's (17) summer is going to be like. Specifically, will he be able to romp at the public pool, work at a fast food establishment, enjoy family outings? I honestly don't know what to expect, or how to plan accordingly. I'm scheduling the tonsillectomy ASAP--we meet the ENT tomorrow. As for PEX, I'm considering waiting until late July so that he can enjoy some of his summer, but then, what about school? It starts the third week of August. So... What is recovery like for each procedure? How long after PEX must one avoid the general public?

Disregard...

Oh my goodness! That is funny!

My DH does a lot of this, and there isn't a thing wrong with him. He drives me CRAZY! His stories have way too much information, and he goes off on irrelevant tangents. He'll act out some things, too. He wasn't like that when we married! Geez! I find myself tuning him out and daydreaming after I get the gist of the story. I don't feel bad about it either because I often tell him to get to the point, stay on topic, wrap it up... and he just ignores me.

Aww!!! I just love little ones! They are so innocent and so honest. Thanks for sharing the moment!

Sounds like a case of ADD (caused genetically.) Very frustrating, indeed. My ds has it, too. I keep info SHORT. Short sentences... I keep directions brief--one step directions. Conversations must be short, lacking in detail and luster, unfortunately.