4Nikki

Thank you all for the responces, they are all so helpfull.

I'm not sure what PEX is, I read this list on the pandasnetwork.org http://pandasnetwork.org/resources/providers/provider-list/#WASHINGTON there is on psychiatrist on the list, have your tried him?

Two weeks is about the longest I've seen a non-joint swelling last. Have you tried the sport injury trick of altering ice and hot every 30 mins always ending with ice. Coaches would say the ice is for the swelling and heat to promote healing by increasing blood circulation.

I think I'm going nuts too. DD's uncle was over for a few days a put notions of demonic possession into DD's mom's head. I gotta say, we had a scene last night right out of the exorcist. Mom was praying over DD during an episode. DD looked at her with sharp eyes, grabbed the standing fan and threw it at mom while shouting the "B" word. If you knew my daughter's life demeanor, you would surely say she must be possessed. I had to restrain DD for about 20 minutes of rage. ok... so now I have a headache.

I wish i had answers, this so sucks. We put in. Backup plan. DD Dr. Found the best phyciatric hospital for DD. But to get her in she has be admited under a 5150. This is bevause she has a develoental disability and needs one to one care. DD's case manager for regional thought the only way to do dial 911 bit we found put it is actually the phyciatric emergency team that actually does the process. We called them in and they made an assessment. Thier recommendation was to admit her. We wanted to make sure she would go to the right place and not to the nearist place. So we are working out the details with her case manager after putting the PET in tpuch with DD case manager. Now the case manager is providing help after being made aware of how the system works, it sounds really stupid and it is.

Thanks you all for the responses. Well... I contacted the clinic and they gave me a referral. Turns out they aren't taking any new cases right now because the doctor is on maternity leave. They are forecasting to start again in the beginning of next year. Was told they got overrun with inquiries from all over the states as soon as the clinic opened and had to turn away out of state patients.

Thinking about moving close to Stanford for a new job but I wanted to know if anyone has experience with the new clinic.

Doctor visits can be horible. We made it through two over the weekend the last one DD wasn't raging but she was having anxieity attacks. I had to calm her down three times. The last doctor's office was the worst we've ever been to. We had to wait for two hours. even after explaining to the staff the situation they just kept telling lies to appeas. I'm not inclined to ever let that happen again.

DD has been rage free for two days now and we also made it to the doctors office. She actually was pretty calm. I could see the anxiety building up as we were in the exam room for quite a while. I managed to change her mood with distracting her a couple of time. She made it back to the car ok. We have a lab and another doctor's appointment tomorrow. I'm hoping she can manage it again. Two weeks ago she refused to see the doctor and it was easy to tell she would have a panic attack if we pushed her so we backed off. but then she was ok to do her labs. DD used to need advance notice but now if try that and it's too long of a wait it makes her flip out.

I found waiting is about the worst for DD. The more spontanious the better.

Can you vent for me? I'm too tired!

My dd couldnt talk much but since she got this condition she became a motor mouth. And then ther is the singing, she needs voice lessons. Its like watching the bad auditions on american idol. But at least i can tolerate dd.

DD15 has been on Medical Home School and even that is hard sometimes.

What does that mean? I understand that too much of anything can be toxic to the body. Take oxygen for example. Too much oxygen can cause oxygen toxicity which can wreak havoc on the nervous system. So what happens of there is too much glutathione in the body?

I don't see how these type of insurances can get specific patient records written permission. So even though life insurance is not prohibited from considering genetic data. Wouldn't it be illegal for them to obtain specific patient records? Might be worth more money filing a law suit if that happened. Also wouldn't disability insurance and long-term care insurance be an oxymoron? I would think that identifying genetic problems actually strengthen any arguments for. I don't see a problem with having genetic data available for research as long as there is no whom it cam from attached to it.

A few days later and the abilify seem to be working enough that she changed and is ready to go to the labs. After that we will pass by the psychiatric doctor. At least he is very interested in her progress and condition. I just hope we can figure out what the right dosage is.They are so expensive though. I saw his bill to the insurance at 500 per hour and 325 per hour on the phone. Then he charges a minimum of 1 hour. Update, Got to the lab and they turned us away saying we needed to go to the other lab. I should have had them call the doctor. We changed DD insurance but kept the same group. we got home and after about 30 minutes she cried and then took a nap. After she awoke, she had enough courage to get into the car, DD had too much anxiety to see the psychiatric doctor though so we headed over to her PCP for a new lab form. We went to a closer lab we had not known about and there was nobody there. Yepee! straight into the chair with no waiting. Asked about in-home service and got a number he charges $45 for the home visit. Dr. B included checking for all the viruses and bart thing titers. I don't get why DD has less anxiety going into the lab to get a needle poke and seeing a doc that just talks sends her over the edge.

DD seemed to reposed well to the abilify. After she raged early that day, we gave her a 5mg tab and she made it through the day. I was thinking she would have to get used to it. The next day, we gave her another 5mg in the morning, she seemed a bit more aware than the last week. She had a pretty big mood swing so we gave her another before bed thinking the 5mg is low enough. She called me on the phone while I was at work and sounded pretty clear. Started her day with the 5 mg cause she was started her motor mouth thing which she does before a rage, She had a mood swing, I think depression, because she cried in the afternoon, but no rage. we gave her another 5mg and will talk to her doctor about it tomorrow. I don't know if this is all coincidence because so many have said it takes time for these drugs to start working. I'm hopeful, because loosing the rage really reduces the stress factor a 1000%. I noticed the pill looks a lot like the benadryl, a coincidence that it is one thing that has help us a lot as well.

While reading though your very helpful post, I was remembering other posts about questionable brands/generic. I'm wondering before we write off some of these drugs completely, if we have to start keeping track of the brands as well. My thinking is that some of these brands may not have the same active ingredients. I also remembered seeing a 20/20 or some similar show, about a pharmacist convicted of cutting kemo.

We have to do another blood draw as well but DD won't go out the house. She is not afraid of the needle, she's just afraid of the anxiety that comes once she is out. I have to ask the doctor to get them to come to the house. I will keep you and DS in my prayers. DD's doctor wanted us to admit her in the Hospital so they could do all the testing while she is raging but the regional district won't do the one on one service needed for developmentally disabled patients unless we dial 911. I told them there is no way we are going to put her through that kind of trauma. Ridiculously stupid rules! made up by people who I think have no real clue. We been approved since June 1 for in-home services that has taken us since November to get setup. It's about a week and still nobody from regional is moving. I'm thinking I have to make some craziness of my own to get some behavioral help.

Ok, I just assumed: psychiatric doctor = SSRI, I still have no clue as to what the difference between a SSRI and abilify is. But I'm willing to bet that neither does the psychiatric doctor. I hate the process of elimination game. I'm sorry, I don't mean to put psychiatric doctors in bad light, we've just had a really hard time.

I wanted to bump this thread because we just gave DD abilify, after being afraid to for 3 months after being prescribed. The bottle says to give it before bed time one a day?

I used to hate it when DD15 would lock herself in the bathroom. One time she did and she kicked a 2 foot hole in the wall. I'm afraid she will rip the toilet off the floor. Today she ripped the bedroom door off the hinges and threw it down the stairs and it hit mom in the head. Mom is resting in the bed from a bump on the head. I asked DS when he got home from school to give DD the last SSRI prescribed (Abilify) by her psychiatric doctor (that we were afraid to try) which is one of more than half a dozen (SSRI's) that didn't have any positive affect. DD has been raging twice a day now since last week. She hasn't had a moment yet and it pasted 7 hour mark. The day I started my new job, Mom was left alone with DD and she was able to manage it. Anyway, I digress. Since DD has been raging again Ive been wanting her to lock herself in the bathroom because its one place she has learned to control her rage down to shouting. When she is out of the bathroom and raging it is difficult for Mom to handle her.DD is way more combative with Mom. Mom tends to try and intimidate her out of habit but it only escalates DD rage. The different is DD will only stay in there 30-45 minutes until her mind is back in control. But she hasn't done it for 5 days now.

Try making a video. It is often more difficult to articulate the details that videos make clear.

Naw, I guess it's not shingles from that explanation. This is something that I noticed only during her rage flare up. The picture definitively looks topical but it's actually under the skin. Today she had a pretty log episode. I monitored her back and she did not get the same rash but it did become quite red. I've never heard of a rash that comes and goes.