4Nikki

worried: My sarcasm is not directed specifically at any doctor or organization. It's frustration about how doctors are backed into a corner forcing them to opt out of the group systems and charge higher rates. The problem for (us) is that we can't benifet from group purchasing power then we have to pay single rates. I hate the hyprocracy through. [Let's continue: Doctor opens own practice - doesn't take on the group insurance bureaucracy - delayed billing payments + now can bill at 3, 4, 5 enven 6 times higher rates than group insurance rates + collects immediately + Cuts overhead + prioritizes new patients optimizing accounts receivable due to lack of overhead because there's not enough time to make follow ups] So your point is "You get what you pay for" [?] I started out trying to find doctors within the group insurance, then I discovered, most don't have the expertise, and the one's that do, are overwhelmed. The mature doctors with the experience having thier own practice, seem to have the most expertise and it shows in what they charge for services. [sometimes we get lucky] I find that the better service for your buck is with larger university/research hospitals where they can process insurance and have the resources to find out what's wrong with our kids. Mature doctor's often hang around one or two days a week.

Short answer is Yes. The Doctor's will try tell you it's "not" about money. But the truth is, It's all about the money. The Group Insurance system is predicated on a fixed billing rate. Doctor's working outside the main stream have to spend more time per patient and can't afford the fixed rates so they opt not to bound by group rates. Since these doctor's care so much about the patients, they will help you file the forums need to get reimbursements. (sarcasm) To be fair they are running a business. You have to be proactive about getting the information, perscriptions etc. that you need. Don't wait for them (the organization) to do anything.

It covers Mental Illness. No one understands PANDAS. I made too much money to qualify for Medicaid but In Southern California, I used the school system. My DD qualified for services but it took me a year to understand the problems with the system and how to get anything done. You have to make a good relationship with the case manager and at the same time get them to understand urgency. Problem is most doctors that accept MC do only traditional treatments and diagnosis. In California most doctors treating PANDAS, PANS, DANS doctors don't accept ins. I'm not sure about the Standford clinic I'm pretty sure they do.

DD's DO and the ER Dr. said her numbers don't make sence because the 'Anti' stuff is way elevated with the TSH in the normal range. The DO said that dosn't happen with Thyroid patients. Dr. T said this is why Hasimoto's Encephopathy suspected. Every Dr. except for her first PCP is quick out the gate with DD's condition because they all know it's pathological however we still haven't found one that can finish the race, including Dr. T now fails to respond to simple emails whereas before, his responses were within a few hours. I want to give him the benifet of doubt, but that only goes so far with me.

We had a hard time just getting a schedule at childrens hispital. Appearently they have a screening process and don't even schedule a child unless the case meets a certain criteria. We finally got our approved referral (took two weeks) over to childrens hospital to see an Encrinologist. They initially scheduled us for September even with DD's mom doing her best to put an urgent stamp on things. I followed up the call to ask the procedure for priority scheduling and they said there is a doctors number and to get DD's PCP to call it in. I did and it was moved up by two months so now its a 4 week of waiting. Does anyone know how often are the blood test taken? TSH 2.65 FT3 5.44 FT4 1.06 FT3+FT4 1.60 ANTI-TG 131 <40 ANTI-TPO 89.4 < 35

DD's has something going on too. Dr. says a possible is Hashimoto's Encephalopathy. Finished her Steriod Blast for 10 days to see if the Thyroid responds. Her biggest symptom chages were her anxiety level when from a 9-9.5 down to 5-6. She can take a bath and is now aware where as before the blast would have brain fog with her verbal tic. I'm not sure how long we are going to wait after the blast to retest her numbers. W're trying to get a Endo at childrens hospital. <40 ANTI-TG 131 <35 ANTI-TPO 89.4 ASO 134 STREP <376 Anti-DNAaseB 215 MYCOPLASMA <0.09 IgG 0.28 <0.76 IgM 0.03 IFA PARVO B-19 <0.9 IGG 5.6 <0.9 IGM <0.9 COXSACKIE A A2 IgG/IgM A4 A7 A9 A10 A16 A24 COXSACKIE B B1 B2 B3 B4 B5 B6 HHV-6 IgG 80 IgM <40 CDC LYME <0.91 Titers GENUS SPECIFICS WesternBlot, IgG NEG 18,23,30,31,34,37,39, 83,93 WesternBlot, IgM NEG <0.9 LYME C6 AB LYME-LIKE IgG/IgM BART_H NEG/NEG CDC IgG/IgM BART_Q NEG/NEG IgG/IgM ERLICHIA_CHAF NEG/NEG IgG/IgM ANA_PHAGO NEG/NEG IgG/IgM BABESIA MICROTI NEG/NEG IMMUNOGLOBULINS IgG 1220 IgA 147 IgM 94 IgE 211 G4_E PROD IgG4*IgE G4_E RATIO IgG4/IgE A_M RATIO IgA/IgM IgG subclasses 732 IgG1 663 366 IgG2 406 61 IgG3 65.1 49 IgG4 54.4 Other tests TSH 2.65 FT3 5.44 FT4 1.06 FT3+FT4 1.6 <40 ANTI-TG 131 <35 ANTI-TPO 89.4 CERULOPLASMIN FERRITIN ANA NEG ANTI-DNA (FARR) COPPER ZINC 4.7-35.2 HPRO 13 84.8-352.5 PRO 221 #DIV/0! HPRO/PRO 0.059 0.1-0.8 HLYS 0.4 94-278 LYS 250 #DIV/0! HLYS/LYS 0.0016 #DIV/0! HYDROXYCOL_IDX 36.8 47.2-98.5 HIS 95 30-131.4 ORNITHINE 66 13.7-63.2 CITRULLINE 34 0-3 ARGININOSUCCINATE 0.1 32-150 ARGININE 109 #DIV/0! OTC INDEX 1.94 #DIV/0! KREBS COUPLING INDEX 340 #DIV/0! NO_INDEX 3.21 #DIV/0! UREA_INDEX 1.65 54-205.0 LEU 169 27.7-112.8 ILEU 93 102.6-345.4 VAL 316 0 BCKAA_INDEX 4.97 ABNORMAL A(627;<537), K (250;<198) CYS (25; >27) V (316; <285), L (169; <148) FASTING? YES ENDO LH FSH ACTH PROLACTIN HEMOGLOBIN A1C 6.1 38-106 Vitamin A Caclitriol >32 25-OH-VIT D 13.9 CBC WBC 8.1 HGB 12.4 HCT 37.2 MCV 83.6 MCHC 33.3 PLATS MPV ABSOLUTE NEUT 4.6 LYMPHS 2.7 MONO 0.6 EOS 0.2 BASOS 0 ATYP <76 ACE 29 Renin Aldosterone 9.3 paraneoplastic eval <26 Anti-TPO Anti-TG <55 Thyroglobulin Anti-GAD65 <5 Anti-Adrenal antibodies 1 1 0.06 2 2 0.36 3 3 3.55 4 4 0.38 PNEUMOCOCCAL 5 5 4.03 ANTIBODIES 8 8 1.99 yellow=PCV7 9N 9 0.21 pink=added in PCV13 12F 12 0.18 14 14 0.62

Question: Since the DNA testing is a non-medical procedure, and thier are concerns about privacy why not just use a pen name (avatar) ?

This stuff works wonders on burns. Just like burn ointment but also takes out pain. http://www.ihealthtree.com/dmso-cream--rose-scented-2oz.html If you get some, be carefull to use it lightly because its strong and not fda approved. The dmso penetrates the skin bringing the aloe vera with it.

So my son when he was 8 years old jumped off his bed and hit his head on the tile floor. two days later he had paralysis on the left side of his face. he had a hematoma that needed to be cleared up. A blood clot that kept the signals from reaching the left side of his face. Not knowing anything I had to read up. To sum up what I read, it is that a seizure is when the signals don't get where they are suppose to and endup somewhere else. I also read that the body is pretty more resilient when your younger than older and it looks for new pathways to get where it needs to go. So I interplate this to mean that anything that blocks the signals from getting where they need to go as a type seizure. If signals are going somewhere else, not only will the function not happen properly but they may cause other things to happen. In my sons case the blockage was a blood clot. In my DD's case we think it's Inflammation of the neru-somthings but her behavior has nothing to do with demonic anthing. It is mostly pathological.

Sorry, when I first looked at the link, it looked more like a snake oil add. You know, the kind that pops up to sell you the miracle weight loss in a pill doing a web page search usually shows links on first couple of google 'pages'. It's a lot of money to pay for something that has no track record. Vitamine k supplements cost about $5 for 100 tabs which is a lot cheaper for something that could possibly help. I'm not down on fish oil, I think it's great for what it does do. We actually started giving DD fish oil but in liquid form to make it easier for her to take the higher dose and it has is orange tasting without the fish burp you get from a lot of fish oils. We have had the most success with speech theropy. Before DD, came down with PANS symptoms, we were starting to look for hypnosis therapy after seeing a documentary on selective mutism, which appearently is born from anxieity. DD was born by emergency c-section due to cord coil which seems to be one of the common links for children with developmental issues. Another posibility for our DD is Apraxia. We visited to a place call The Listening Center in Southern California and the speech pathologist there had told us about this diagnosis being one for some of her patients. They used something called the Tomatis method and said they have been lots of success with it. It was a bit far to drive from our place and we did'nt have the additional budget because the pathologist was out of network. Another thing that escape many is being tonge tied. HTH

Thanks powpow, I will try. I don't really care what name people give a condition. I only care that we help our children to get the right treatment. It seems to be a big deal to some doctors. I would most definitely like to shoehorn HE as the culprit to dd's condition because it looks more hopeful in treating than does pans. I will try to post updates. We are o nm our second day of the steroid treatment but I think it's too early to make any assumptions. Dd has gone into the first stage of her symptoms she has before a rage episode each day now but it has changed. We would usually first notice her verbal tic then the tic would increase in frequency followed by rapid eye blinking which accompanied negative behavior and progressed to being unawareness and then rage. Twice now she starts withe the verbal tic but now she is aware rather than unresponsive. It lasts about the same amount of time but so far that's it.

I wanted to bump this thread. Dr. T listed DD as possibly having HE. Her Anti-TPO was 89.4 with range being @<35 and Anti-TG was 131 with range being @<40 she also has very low Vitamine D and high liver levels. I read through the 16 clinical features and dd is probably for at least 12 of them. I aslo read something about brittle bones but missed placed the reference. I was thinking there is a link because I read Vitamine D is what is need to calcium production? We are going to start a steriod burst today. Does anyone have experience they can share because dd's scary symptom is rage and the only thing we dabled in was the progesterone cream which seemed to help but because of the flare this past month we hadn't gone completely there. Joybop was wondering if you tried the motrin?, because we had lots of success the first 6 months with dd symptoms which turn to rages using advil cold and sinus. but just last week it started having the opsite effect and we turn to benadryl. I was thinking it might have to do with alergies.

Respidone actually made dd symptoms worse and when we increased the dosage it became a trigger. None of the SSRI's class of drugs we tried worked positivly on dd either, ibprophen 600 - 1000 mg helped reduce the intensity for DD's rages initially, but when we found advil cold & sinus 200 mg, it worked like magic. (until now). I think what's happening is her immune system is reject it because help liver levels are increasing, which is why we can't use it anymore.

DD has started flaring about 3 weeks now and has had a few bad rage episodes as her verbal ticking and incognizant symptoms are getting more intense. She had a rage episode last thrusday that was over the top all while we received new blood test order from Dr. T. mom can't handle DD's rage when it's a 11 on a cale of 1-10, it's just to dangerious so we decided we couldn't wait till wednesday (results follow up) to get some of the results interpreted. We have been able to control the rage episode once the verbal tick show up with advid and Pseudoephedrine HCl 30 mg, but dd has starting rejecting it and it now a trigger. When we arrived at the ER DD verbal tick had kicked in so they allowed us to wait in the physic ward. The ER Doc thought that anti-seizer medican might help to abate the rage and consulted the on call neuro. He prescribed intransal PRN #3 and told us to ask Dr. T about the use of lamictal. We have turned toward benadryl and stopped everything else this past week until we get some new direction.

Took dd to their er, gave recent blood tests results and history to er doc and he thought anti seizure medication might help with the rages. It a nose delivery. Anyone tried?

Here's a link to very interesting link about glutimate. http://www.dana.org/Cerebrum/2007/Protecting_the_Brain_from_a_Glutamate_Storm/ And what sounds like risky terrain for drugs, but also very interesting about NMDA receptor http://forums.phoenixrising.me/index.php?threads/anyone-tried-ketamine.4020/ This may not be exactly what our kids suffer from but i think it has some insight s.

Thanks for that All, We should get our DD's 30 vials of blood tests ordered by Dr. T back this week. I'm not so sure if any of them will show glutimate levels. DD is very sensivitive to something and we are hoping Dr. T will tell us what that something is.

I heard from a work colleague about a 2020 episode that sounded simular to pandas but didn't see the show. She said they showed brain scans and discovered higher/lower levels of something as a culprit. I found a link on the abc site but won't get a chance to watch till tonight. http://abc.go.com/shows/2020/listing/2014-05/23-2020-0523-the-children-who-break-away

If you where following up the consultation order, then I would expect he is obligated by simple ethics to complete the visit even if he wasn't paid. I'm assuming you received a copy of your test results, have you tried sending him an email?

Dd does the same thing with watching the same show over and over, sometimes she writes the same words over and over on paper or the wall or opens a note pad on the computer and types the same phrase like it was like a exercize or punishment and i forget to mention to doc its part of her ocd routine.

What about repeating a single word every 3-4 seconds and entering into a non-responsive state?

Also had a phone consult with Dr. T and he ordered some blood tests that we hadn't seen of before. The thing I liked was Dr. T, he seemed to have a clue where the other Doctors we have seen just scratched their heads in wonder. He was also familuar the doctor was that read DD's MRI even though we are in Washington. He mentioned things that could be rulled out based on the LP test results which is the typical analysis that our Dr's that we have been seeing and never bothers to volunteer. We have to pry to get any info out of the Doctors.

There is a fish oil called barlean's fish oil that makes a liquid orange tasting product. The factory is only a few miles from my office. We bought some just to test it. DD doesn't mind it at all. Very reasonably priced at the factory store $15 for a 8oz bottle. Not sure what it cost in supplements isales.

There are some youtube vids of people and doctors removing stones from the tonsils. Appearently some think the tonsils are a filter for collecting things like bacteria. I have no clue but i can see its possible for strep to hide in there.

Thinking more about the MRI and what has been said here, I'm wondering about the timing. How can and scan show anything if we dont stop the anti-iinflamitories? Wouldn't the time to take a picture be during a flare? It's not that hard to figure out we are wasting money on tests if we are not testing during activity, dont ya think? Having said that is the easy part. Getting dd tested during a flare is way different level.