4Nikki

Had attempted many MRI's the past 2 Years and could never get DD to sit though one completely. The MRI Doc said just forget about it because there is nothing remarkable. We got a new Neurologist and she was adamit about getting a MRI so we did and it showed nothing and now we have another $2k bill.

http://www.nimh.nih.gov/labs-at-nimh/research-areas/clinics-and-labs/pdnb/web.shtml Sorry wrong link: fixed it.

Awsome posting gives us sometthings to go to the doctor with.

DD's Neuorlogist tried to go the ADHD stimulant route when we discovered the the ibpruphen with a little stimulate worked for DD, but the ADHD only medication did not work. we still don't know why.

Some good stuff. thank you so much, I didn't feel I could leave mom with DD flaring. Any clue about how many were there?

I have no real knowledge of TS, but when I looked up the defination and origin, I found it to have the same BS as other syndroms/disorders that were given a name but the turth is the origins/cause have not been identified. I also read that TS is overwhelming inherited. If this is actually the case, then sounds like you being sold a used car.

She explained that her immune system was in an inflammatory state because of the PANS. Her recommendation was to work at modulating the immune system. I would like to know more about this. State.

This doctor was featured today on MSN homepage regarding a girl's misdiagnosed bipolar dx. Kudos Dr. Frankovitch! And yes, a rheumatologist!! We have been struggling to get a diagnosis and find some treatment for DD, but everything comes up megative. DD just had her first rage/panic attack in the mall while shopping. She had been self controlling both mom and DD overestated how long she could handle it. Luckily i was there. She was headed out the door passing the last set of clothes racks and displays then hit the floor. The in the mist of her screams the first thing she did was grab the dresses closest to her hand and start tearing. I had to hold her from doing more damage she just screamed. The security guard was surprisingly calm and asked if we wanted the paramedics, but i had it barely controlled all the while DD was screaming at the top of her lungs. She screamed she was afraid and hugged me very tight. afer about 5 to 10 munites, i had no awareness of how much time truely passes, and coaxing DD to get to the wheel chair so we could get to a safe place, the car, she allowed us to help her in the chair. Mom said the store owner was accomidating and told us not to worry about it. The guard told me later he was a special ed teacher. He said being a guard was his part time and could tell i knew exactly how to care for DD. DD has a tooth infection that i'm hoping get fixed on wednesday. Sorry for the off topic, but we just want to find a doctor preferraby north west washongton that wont waste our time chasing traditional diagnostics checking based on probability and do some real troubleshooting. Traditional care is costly and yealds nothing for DD's treatment specifically when we haven't found the cause. DD tests show she is normal but every doctor including her phciatric , have been able to do nothing except to say her condition is pathology. I was planning to go but with DD's flare i didnt feel comfortable leaving her.

Maybe in ruling out that they cant help and probably more importantly ruling out "psychosis" which appearemtly is a taboo fo social workers.we felt DD's physicist was pretty honest. His policy was his door was always open and when he realized DD's illiness was beyond his field of expertise he maid a referral.

Wonderful news.

I just dont understand the "Belief" statements and attitude. Pandas/Pans is not about having having faith. Its about using modern technology to find the cause of an illness. Why do doctors have to fight about a name.

Thanks for that. I couldnt see from the webpage onmy phone what time the event started and the smaller sessions breakout.

I can sense a ton of value here just reading the session description. DD has been flaring lately and we think its from a tooth infection. Problem is DD just had a mri and lumbar puncher which yealded only more bills. DD has pans symptoms but no diagnosis. Suggestions have been to check for low levels in her system, meantime her neuro was trying to read off a diagnosis of explosive rage disorder and then said "We" dont beleive in Pandas as if she was speaking for neurologists. I told her after she got finished reading back the description of. this disorder that it sounded like the people who came up with the definition couldnt find out what was going on and just called it that. She seemed surrprised by my response so I continued to explain my reasoning was because my job is about troubleshooting and its my nature to pick out weak premise that support a weak assumptions. Unfortunately I wasnt witty enought to challenge her statement that she doesnt beleive in pandas at the time. My thought after pondering our discussion that believing in something is about having faith and there is a disconnect there. I send her an email to followup our next steps but havent received a response yet. She is suppose to be asking some of her connections in childrens hospital seattle about direction. I got a few names of pandasnetwork.org for doctors in the seattle area.that we'd like to bring DD to but we are going to address her tooth first. I'm a little diappointed that the session says men, not because i opposed to it, but because DD's mom has more PTSD.that DD's dad.

I dont think ican even form an opinion with this story because there appears to be much left out. How can the hospital claim medical abuse over treatment without a confirm diagonsis? The story appeats to be detailed but you have to make assumptions to fill in the missing pert to form an opinion. The storys says the state proved its case, but makes it sound like the parents are being punished for being verbally abusive to hospital personnel. How do they make the caynon leap to medical abuse for the child proof that the parents are bad. Too much left out of the details to make rational sense of the case especially in front of a judge where family law is the welfare of the child is paramount.

This is the first time i've read about garlic helping with rage. DD is struggling now but has a tooth infection. She is not on antibiotics yet wenoticed sugar is starting to bea catlysist so wearecutting it ,out of her diet again. I dont know ?, how to check if yeast is a problem.

Thank you. I will ask the doc. I dont have any understanding of IgG levels and i dont recall seeing it on the blood tests.

DD is overloaded with Anxiety and the main reason she can not attend school. We were introudced to Benedryl by an ER Doctor after we brough her in due to rage episodes which helped with DD's sleep issues and amaizingly it made her more alert the next morning. If we gave her 25mg it would help a little, if I increased it to 50mg, it did the trick for her to be able to sleep through the night but by afternoon the next day she would have trouble focusing. If she continued symptoms and had an episode, it would be more intense so we gave Benedryl only when needed. At the time, when I explained the use of Benedryl to DD's neurologist, he prescribed just the part that helped her to sleep. Much better than using Benadryl. I didn't consider the possibility of the Ibprophen and phenylephrine HCI could be reacting with her other medications which is Abilify, Doxepin and Fluoxetine. I'm concerned that nothing will show up doing the Cunningham panel like her blood test that nothing shows up unless she is having full blown symptoms.

Will be paying for both procedures for a little while and they yealded negative tests. Except for when DD was sick with strep throat, fever or had a bacteria infection, no tests have ever yealded any definative results. We still don't have a diagnosis on what DD has that can give us some direction on treatment. No doc has been able to tell us why Ibprophen with phenylephrine HCl 30 mg keeps the rage away. Ibprophen by itself seems to help but in higher dosages 600-1000mg. Ibprophen 200 mg with phenylephrine HCI is more effective in the lower dosage. DD is going on 5 months with only a few rage episodes compared to multiple times a day without it. Stuck!

I dont care what the illness is called as long as it can be treated. You are lucky this immunologist cares enoght to look futher. My experience is that they have thier hands tied about what they are allowed to do. DD numbers were elevated during a flare but without the flareup and high counts i think immunoligist can do litlle.

None of the doctors even know what to diagnose DD other than somekind of autoimmune illness, by accident we discovered that ibprophen with a stimulant works to keep the flares to minimum intensity. DD has toouch anxieties to hold still for a clear mri but on the ones she did hold still .nothing can be seen

I want to try hypnosis, i saw a documentary on sective mutism where the cause is said to be anxiety. They were trying with some success a hypnotist . We just been sobusy with relocation we havent had time to track ome down.

http://www.walgreens.com/topic/pharmacy/healthcare-clinic/price-menu.jsp http://www.amazon.com/Rapid-Response-Strep-A-STR-15S25-Strips/dp/B001DD04SQ Since when is it bad medicine to test for a suspected infection? I would ask the doctor to refuse to run the test in writing. Perhaps it would get her to think a little more about what she is telling her nurse to say to you. Process of elimination is not bad medicine or bad troubleshooting. It helps to narrow down the suspected culprates. If the doctors knew everything on exactly how the body worked they wouldn't have to guess. Doctor's that claim to know everything are either fooling themselves or are trying to fool you. DD was experiencing a series of bad flares, it was the first time we noticed her throat, and it was inflamed, we went to the doctors office the next day and her throat was no longer inflamed but insisted on a titer test which came back positive. I don't know if DD has PANDAS/PANS and hasn't been confirmed nor has it been taken out of the diagnosis pool. I don't care what the illness is called, I only care that it can be treated to help DD.

Ibuprofen 200 mg, Pseudoephedrine HCl 30 mg is what works for DD. She can stand a higher dosage of Ibuprofen at times but it works consistently for DD when nothing else seems to.

Tried using some stuff from Canada recommended by Stanford and the supplement comes like alka selze tablets that dissolve in your drink but DD had episodes.

I just read part of the story and I'm not sure but there appears to be a conflict between doctors opinions and the story seems to imply BCH is abusing the system because they think they are right about a diagnosis and feel the need to protect the child. I'm sure there is much more to this story still to unfold including the parents taking the hospital to court for using the system to prevent them from performing their right as parents and caring for their child in seeking a second opinion. Everyone in the story and side stories are after the best interest of the child. Using loop holes in the system sounds pretty risky on the hospital part and should eventually bite back pretty hard, This is because not only are they potentially damaging the child, they are damaging the parents. It's one thing to abuse a child, it's another thing to use the system to force your opinion. I would say keeping malicious records is prudent and necessary, if you feel people in the system, think they need to be passionate about your child's care. In our DD's case, if doctor's had this much passion about finding and treating DD's illness I would welcome it. But we haven't found any that know what they are doing. It's been all guessing so far. DW and I know what works and what doesn't work. We keep records of what medications have been given what works and what doesn't work.