Iowadawn

Get in touch with the Department of Ed in your state. They do not like to hear this kind of stuff. Getting someone at the state level to crack the whip may be what it takes. Federal funds are involved & the prospect of losing funds b/c someone isn't playing by the rules may be an incentive. The trouble with the 504 is that there isn't any oversight--who is in charge of keeping track the plan is carried out & followed. An IEP has TEETH. Do NOT give up. Dawn

Thank you for this good and encouraging information. Weird/ atypical/fits no one's box for sure here! So, your entire family went? How does this family thing work? Curious how low & slow on the Zoloft. I don't think the docs here get "Low & Slow"! Thanks! Dawn

Thank you for this good and encouraging information. Weird/ atypical/fits no one's box for sure! So, your entire family went? How does this family thing work? Curious how low & slow on the Zoloft. I don't think the docs here get "Low & Slow"! Thanks! Dawn

In our case we had liver problems developing & prolactin elevation which can't be messed with. I wouldn't go down there without seeing Dr. Murphy. Our Dr. now wants to add it as just prn med. Our ds13 goes bonkers when he mentions this "b/c I CAN NOT have that now!!" No amount of explaining has done any good so far. Ugh!

In our case we had liver problems developing & prolactin elevation which can't be messed with. I wouldn't go down there without seeing Dr. Murphy. Our Dr. now wants to add it as just prn med. Our ds13 goes bonkers when he mentions this "b/c I CAN NOT have that!!"

Thanks for the info! How old is your Ds & how long had this been going on. Our son's tried med list is LONG. Risperdal had to be aborted due to serious complications. Can they tell us if we have too much meds.

We are seeing a LLMD and treating as aggressively as he can tolerate. IVIG is scheduled for this weekend,also. We are getting a lot of really good improvement and then these very disruptive spikes that are anxiety driven. Stuck thinking gone wild--classic OCD, no. Thank you for your reply! Dawn

He is improving. Painfully, but improving. But, we are wondering if we are missing something, or should be doing something differently, if we need to get very aggressive about these disruptive behaviors, our other kids, etc. A comprehensive take on the him and our whole situation. We have had to abort the cyst/biofilm treatment for now. Our LLMD said that we would need to step back from this stage of treatment, in light of this new charge. GSE was a disaster as well, and we were lowering dosage, etc. The whole court thing is a SAGA in itself. We ask for prayers for those inclined to do so. We are a couple weeks from receiving the Mental Health Waiver which will allow approximately 2000 a month to help serve his needs here at home--the goal is to keep him out of an institution. Our son is sick. Our goal all the way along has been to get him the treatment he needs, be able to keep him & others safe, and remain in control of his care. This has been clear. We have been give kudos from the state about how well we are doing and the MHW will be the assistance. We believe there are nefarious motives behind why they charged him at this particular time with the MHW almost in the bag after 20 months of being on the list--especially when he was hospital material and an ambulance was requested. Again, this is a very drawn out saga, too complicated to try to explain on the forum. Bottom line, our son is NOT a delinquent, he is medically & psychiatrically sick. Pray justice prevails. This is just plain wrong. Dawn

It does! Thanks.

Thanks for your replies and good wishes. One particular thing I am wondering about is their therapy programs to address poorly regulated mood/behavior due to anxious/stuck thinking. Autistic traits, too. Our son has had problems with the aggressive/volatile/tamtrumming/dangerous behavior. Maybe this just falls on one end or the other of OCD. Perseverative thinking. When he is good he is very, very good & when he is bad he is horrid. He has had two different Cunningham tests showing 184% CaM Kinase II activation. A couple autoantibodies elevated as well. This was before treating for TBI. Will he get a thorough medical work-up as well as intensive therapy? Also wondering their feelings about congenital lyme & tick-borne infections. They don't poo-poo it? COme down on the ILADS side of treatment? Again, PM me if you want, or just post. Just bumping this. Thanks. Dawn Dawn

Hello al! Right before we found ourselves in hot doo doo & now headed to juvenile court with our sick PANDAS/Lyme ds13 (That's another story for another day--just keep us in your thoughts & prayers) we started batting around the idea of heading south to Florida to Dr. M and her program. I get the feeling that the approach taken down there is more comprehensive in approach and that our son would get a good looking over medically, psychiatrically, immunological & have psychological issues addressed aggressively during an extended stay. We need some feedback on what all happens, how comprehensive, ya da yada yada. PM-ing me with specifics & your experience, especially with kids with complicated , or what has been chronic in PANDAS & Lyme-land. We do not know--are we missing something, on the right track, we/he would benefit from intense psychological treatment for the anxiety & explosive behavior that can plague him & us, How they address the lyme issues, tests, communication with docs back home. How long is wait to get in? Would we or should one of our professionals contact Drs. M & S? Has there been much resistance to getting in network coverage (we have BCBS) if a doc or two say this is necessary and unavailable treatment in Iowa. Our son is headed to court. If this would be beneficial getting it scheduled sooner than later may help demonstrate how sick he is & that we aren't deadbeat parents that can't control their son. PM me or just post. I would be ver thankful for the input--1300miles is a long & not cheap experience if it wouldn't do much good, but very short & money well spent if the help we receive is beneficial. THANK YOU!! Dawn

This is AWESOME!!

((HUGS)) and A LOT of empathy from 12 years of behavior/roads like your experiencing--9 years before we had the PANDAS dx, 10 before the TBI. And I am losing it now reading your email, shedding a tear for you and your child as I shed one (OK, more than one) for our ds13. A charge of Assault on a Police Officer with bodily injury was leveled on him today. My boy is sick. Your girl is sick. All I can say is I understand your pain. Dawn

Just throwing in a comment---Loratidine made matters worse (behavior-wise). The counselor we went to at the time said she had seen similar reactions in other kids & adols. Wish I had more to offer. We are really struggling again, right now. DAwn

What dose of Augmentin, Fightingmom? Good to hear this!

A PANDAS turned Lyme/PANDAS mom checking in here. Ditto checking into the Lyme/co-infections. Boy, those symptoms make me cringe thinking of our experience. Don't discount the IVIG. Dawn

yes, your son sounds like a candidate for the NIMH/Yale IVIG study. pandasnetwork.org will have the ifo you need. OCD has many different forms & presentations--not just the handwashing compulsion/obsessed with germs example we easily recognize. My son is very much like yours with the explosive rages. Dawn

Leaning in more of the direction of Bill & LLM. I doubt there is a disease out there with diagnostic criteria that fits all cases. We gotta start somewhere. Like the saying goes: when is the best time to plant an oak tree? Answer: 40 years ago. When is the second best time? Today. MHO. Dawn

From what I have heard or read, yes. Before & after.

Can I come over?? **sigh** Oh, how I can relate right now. I am not a "huggie" person, but for you a ((Hug)) and a prayer.I wish I could click my heels and make this all go away for you and all of us. Stay strong. Dawn

Our son is fighting bartonella. He bolted out of school today & ran home--smashed a coffee pot in the Sped teacher's room when he got wigged out over math. Actually, the doc appt this afternoon is what is fueling (stuck on it) the behavior issues he has had the last few days. I just looked at his back--a couple bart rashes have shown up in the last day. It has been a while since seeing any. I have read somewhere that when the psychiatric symptoms are out of proportion to the physical symptoms of Lyme to suspect bartonella. Dawn

Abandon the therapist, really. You do NOT want a member of you "team" talking residential treatment. She hasn't a clue of what to do with your child, and basically says this when the only recommendation is placement. SHe obviously hasn't a clue about PANDAS with comments she is making. IMHO: run away & don't look back. Don't get sucked into sticking with her b/c of your feelings of her. Our son has a hx of doing so much of what you son does behaviorally when he is not operating on all cylinders. There is no one--psychiatrist, psychologist, Lyme/PANDAS treating doc--even after boo-coo in patient stays--that has recommended residential treatment for our son. In fact, all have it in writing that RT would NOT be in Evan's best interest. PM any time. Dawn

OK, I need someone to put up a link to Business Wire site that has the press release regarding Viral Genetics submitting a Pre-IND briefing document to the FDA for a drug to treat chronic lyme. This drug was developed off their targeted peptide platform. A BIG milestone. It is a great read. They are also investigating the use of this platform for a variety of other bugs (like strep) that certain people have problems clearing. Dr. Karen Newell-Rogers is behind this research. Would someone be so kind to put the link up? Dawn

We have had BCBS here in Iowa. Fought for coverage, but have had several IVIG's now. We are on our second year with approvals for a year stretch at a time. Thenmama's past posts have been very helpful. I am confident that we avoided the initial denial by including some of the info she presented when we sought approval again in January Dawn.