peglem

Careful! This backfired on me- created more sleep issues. She wouldn't sleep for fear that we'd slip her something!

Some parents find that peanuts or peanut butter helps because peanuts have tryptophan. Peanut butter (especially crunchy) is a great medicine hider as well-that strong flavor hides a lot of sins! (Don't think it'd work for valerian though) I come from years of raging child episodes. Something that helps us is to never ever let my daughter go for more than an hour without food. I don't know if she's having blood sugar swings or what...but this really minimizes the rages.

Your antiD2 is very high! And camK is well w/in PANDAS range.

Yes, I do run in for a swab at any sign of strep. And yes, they can swab her nasal cavity for strep.

Just wanted to let you know, those threads are authored by Buster (with input from others on this forum) who is dad to a little girl who had life threatening anorexia due to PANDAS. He is careful to provide links to the science behind the info because that is often needed to get doctors to believe and help. I understand what you're saying, though, about wanting to hear actual experiences- just didn't want you to think Buster was an outsider!

*BAM* another thought just hit me...make sure nobody else at your house has strep (many people have asymptomatic strep so you can't just rely on symptoms) because if your daughter got worse again after improving it may mean she was re-exposed. Because PANDAS is caused by the antibodies to strep (rather than the strep itself), and even just exposure to strep causes the immune system to produce antibodies its worth seeing if other people in the home (who were exposed to your daughter's strep before it was treated) may be triggering a relapse.

I'm a bit unclear. Apo? Did the tics come back after the course of amox was finished or while she was still on it. I'd be willing to bet the ODD is a PANDAS symptom as well. Here on some links to informational threads that will help you get started (all found on the "Helpful Threads for PANDAS" pinned at the top of the forum) http://www.latitudes.org/forums/index.php?showtopic=6265 http://www.latitudes.org/forums/index.php?showtopic=6266 http://www.latitudes.org/forums/index.php?showtopic=6688 If you need help finding a PANDAS savvy doc, let us know what area you're in and maybe we can help there as well.

It confirmed for us. And at a time when the only official info on PANDAS treatment was "treat it the same as regular OCD and tics, it got our pediatrician (who was already convinced it was PANDAS) moving and in touch with the experts. We had no other labs indicating that there was something amiss and these results helped him to get the assistance of specialists that had just blown us off before.

We have a wonderful pediatrician. But early on, I told him what this was like and when we had appointments she would do little things like smack herself in the head and he would ask, "Is that what you mean?" But that stuff was so slight compared to the really bad stuff, that it wasn't even on my radar. Once she had a real episode in front of him- well, it made a big difference- he went from being helpful to being militantly helpful!

I remember times (God forgive me) when I'd prepare my daughter for dr. appointments by making sure she was hungry and had no ibuprofen so the docs could see what I was talking about. Just describing it does not suffice usually.

Listen hon, all of us who endure this really extreme behavior with our children lose it from time to time. The stress is just too great, and so horribly, horribly scary. Forgive yourself. You will get your daughter back- you're working too hard not to. And I have to tell you, though it seems inconceivable right now, you and your daughter will get something positive out of this in the end. I'm praying that God will bless you with some peace very soon and Dr.B will have some answers for you.

OMG! You are so good!

If school nurses would send parent notifications that its strep season and include PANDAS symptoms for when to get your child checked for strep.. I know the very few notices I've had for strep in the schools only listed typical strep throat symptoms and I think it would help to educate parents, who may otherwise be sent directly to psychiatry. Also, look closely at their SPED populations- some of those children are likely to be undx'd PANDAS.

I know you're kind of stuck with the ds6 in the middle of a taper- but, probably not a good idea to do steroid w/ the other until infection has cleared. W/ the immune suppression you risk giving the infection the upper hand.

I started reading it, couldn't manage the whole thing, then sort of skimmed through. Worth reading if you can comprehend, I guess.

Yeah, I'd treat everybody at the same time. You don't want one lingering infection to reinfect those who have recovered.

What I do is stick the pill at the back of her tongue and follow up with 2 syringes of water.

We've had 3 or 4 five day bursts. Usually we see immediate improvement on them, and a resurfacing of symptoms slowly afterwards. The 1st one we ever did, my daughter got ill afterwards, with a fever.

Yes, I've heard good things about him on this forum. I hope you have a good experience with him and your daughter gets a lot of help.

I've started to reply several times, but it seems to come off as a rant...so forgive me, I'm just giving my honest, non-expert opinion. I'm highly skeptical of specialty labs that invent, interpret, and sell lab tests that are not accepted as valid by the medical community. How they could possibly test brain neurotransmitter levels through the urine is incomprehensible to me. I'd want to know what markers they are testing and understand the logic behind it before I'd be willing to base treatment on it. Clinically, low dopamine levels are associated with tremors. That being said, tyrosine isn't likely to be harmful anyway.

I'd stop them, especially since she is no longer on abx.

Studies have not been done (yet) for IVIG in PANDAS. However studies w/ other autoimmune diseases seem to show that for autoimmunity higher doses are more efficacious and several studies indicate that IVIG is inflammatory at lower doses, but anti-inflammatory at higher doses. Here are a few abstracts that indicate the anti-inflammatory effects are dose dependent: http://www.ncbi.nlm.nih.gov/pubmed/21207645 http://www.ncbi.nlm.nih.gov/pubmed/19883419

I think the camKII activity is elevated as the result of the anti-neurals, and indicates dysregulated neurotransmission.

Email, Kathy Alvarez or Dr. Cunningham. They will help you interpret.

Every 3 to 4 weeks, my daughter gets 1.5g/kg. We do it in 1 day (which really makes things easier!). But when we started last march, she was getting less than .5g/kg, which I think is the standard dosage for immune deficiency. The higher doses are used for auto-immune issues. After 2 at the lower dosage- my daughter was getting worse. I did a bunch of research and brought it with me to the immunologist, thinking I'd have to show why I wanted the higher dose. But he just said after reviewing the literature, I believe she needs 1.5g/kg, and we've been doing much better with the higher dose. Honestly, I don't remember what the research was exactly, that I brought to share with the doctor, but I'll bet your immunologist could find out, just like mine did.