Iowadawn

My Stars & Garter belts!!!! What the heck!! I wish I could run over & give you a hug---that from a not-so-huggy person!!!! If you are encouraged by a Bible verse check out Isaiah 43:2-3. I have meditated on this OFTEN throughout Evan's & our family's journey. I can certainly pray the same for you!! Stay strong!! Dawn

We added colloidal silver spray after a year, specifically for the bart b/c of lackluster gains that looked like yours after a year of tbi tx. ALong with a protocol of abx and IVIG every 8 weeks we have started to gain some serious ground. At the moment IV abx are not recommended by the llmd or his psychiatrist b/c of the fear that he would pull out the picc line in a rage. We are doing much, much better!! Got a long way to go, though. Dawn

I remember Claritin causing the blecky behavior to get worse in my son. The counselor at the time said that she had had a similar reaction in some kids. Dawn

DITTO tpotter post. Get a doc's letter stat! And then an IEP or 504. No offense to your daughter, but a couple days at school and they'll wish she was home WHERE SHE BELONGS right now. Every state is different, but most, if not all, have agencies that provide a variety of services like special ed, speech path, autism resource, OT, PT, educational consulting....my husband works for one in this state. They are called Area Education Agencies here. In Nebraska are called Educational Service Units. This is where (again, where we live) to get the process going. Your state dept of education would be able to tell you how to start. Or someone from your state should be able to, also. PM me. You have to call off the dogs asap, before they get weird on you. Don't do nothing, or the school will do it for you if they are of this type of mind-set. We have been fortunate with our school system--they have bent over backwards for us. Dawn

Will Do!

You said 50% chance of IVIG. If you are accepted into the study, in the end it is 100% chance after 6 weeks if you happen to be in the placebo group. I would go for it. The chronic lyme for you jumps out at me. Has that been ruled out in the kids? Best wishes! dawn

Thanks for sharing this about Dr. C. Were the antineuronal antibody results similar in the Lyme? I have heard that the Cam numbers were similar. So. am I correct to conclude that because other bugs can trigger and cause high results (NOT just strep) it is useful to help dx PANS. It can't be considered just a PANDAS test. It's late---am I making any sense. How is she going to "market" the tests, for lack of a better term. Dawn

Trust me, before something very UN-good happens, keep him home. He is not operating on all cylinders, learning is NOT going to take place to any degree. Peers may see this and then that adds a new dimension. It is MUCH better in the long run to keep him home than risk this type of behavior and the serious problems that can occur. A person wouldn't send a kid if another organ (you pick) was causing serious symptoms. My vote from our experience is KEEP HIM HOME. And we have had nothing but very cooperative, bend-over backwards school personnel. My been-there opinion. Dawn

Yes. We were sent to one by a psychiatrist who wanted confirmation. Unfortunately, we dumped him when we could see that he wasn't up on tx. BUT, that was before we found the TBI component. BUT, I'm sure we would have been laughed out the door with IGenex testing. Dawn

I do not think that Dr. K is exactly on the Lyme/TBI boat, yet. I know he is on the same wavelength that "it isn't just strep". My guess is that he probably comes down on the IDSA side of dx/tx of Lyme. I can be more specific in a PM. Dawn

Yes, we have tics (v/m) here. We had them when we were being treated as strictly PANDAS. We have them as we treat for TBI. Other infections besides strep can cause PANDAS (PANS or PITAND) symptoms--Bb included. Kiddos with other bugs and PANS sxs--Bb included--have caused elevated results on the Cunningham tests. The researchers are starting to get that word out. Autoimmunity. I am guessing that the docs just are not seeing Lyme as capable of causing an autoimmune reaction? Or even neurological Lyme? My thoughts. Dawn

Just a little additional info. My boy was healthy as can be (not as much as a sniffle) until I quit breast feeding him at 10 months. A week later we were in the doctor's office and from that time on his health hx is littered with illnesses and symptoms. By 20-22 months he was "operating on a different frequency" we often said & other family members would comment. Dawn

I second the IVIG questions!! Dosage? (We are using 1.5g/kg) Where are they at in differentiating neuro-lyme and an auto immunity (PITAND) reaction with TBI?

Florastor is our Friend!! Our boy has been on a boatload of abx w/o a yeast problem. Can't say enough good about it. Dawn

Our experience that the cephalasporin family of antibiotics has been highly effective for strep. Dawn

Boy, I wish I could wave a wand and make it ALL go away--for your kids, my kids, & everyone's kids!! And I am the LAST person to give advice on fighting the depression thing. I just want to encourage you to take a big, deep breath, say a prayer, and come back up with a fighting spirit--for your kids and your family. (((Hugs & Prayers))) from the Midwest. Yes, this royally stinks. Dawn

Can be a bunch of stuff, but not normal I would say. Can be a babesia sx. Dawn

Any news from Swedo concerning THE white paper? Is the lab start up so that the tests can make their way to FDA approval, or more for research? The naysayers are going to look REAL funny, REAL soon. They are being very picky on the IVIG study for this very reason. They need to shut these thugs up for good--much like the h.pylori/ulcer doc did by infecting himself. Thanks for being patient with all our questions, tpotter.

Did Dr. Newell Rogers mention the role of CLIP is playing in these post infectious disorders. Very basically, this peptide is key with the immune system going into overdrive. This CLIP theory or not so much theory any more (I don't know) is part of her research. Just wondering if she happened to highlight this in her presentation. Dawn

BoyIowa-I PM'd you. We are in Iowa and see Dr. P. We have gone the Dr. K route. We get IVIG done in Des Moines now. Dawn

Our PANDAS/Lyme ds12 has always had lots & lots of pimples on the pack of his upper arms. The backs of his upper arms always got very red & "slapped" looking after IVIGS. After a year of lyme & co-infection treatments (after PANDAS) and these are almost gone. After the last IVIG they didn't get hardly red at all. I don't know, but they are almost gone. Dawn

400 & 150 here in the midwest for the LLMD we see.

The LLMD we visit has successfully treated some 25 cases of LIA. He said if caught before age 7 (If I remember correctly) it can be totally reversed. Dawn