4Nikki

Gave DD a benadryl and she took a nap. A few hours later mom took a look and there was no more rash. So now im wondering if this is happening. During a flare up like an allergic reaction. I saw an add about shingles virus how your body has it if you ever had the chicken pox and i am wondering cause DD had a very bad case at the age of 3

Wow DD's Dr. is fast. She said it looks like a type of fungal rash and needs only cream.

Anyone know what type of rash this is: http://www.tiikoni.com/tis/view/?id=007d9b1 DD has started having rages again and we just got a new lab form for testing. I couldn't find it on types of rashes. Sent the pic over to DD's Doctor but wanted to know if anyone had any thoughts.

I heard about this before from a friend with a toddler. She was very worried because she said there are a few other things that can cause it including genetic. The doctor said in her case it was a yeast infection and prescribed like nystatin.

I have no idea if this helps because the links have all this stuff I've not see before so I did a look up. Methylation Made Easy Part 1 of 4 Methylation Made Easy Part 2 of 4 Methylation Made Easy Part 3 of 4 Methylation Made Easy Part 4 of 4 Additional Link http://metabolichealing.com/key-integrated-functions-of-your-body/mthfr-genetics-and-methylation/mental-illness-or-methylation-mutation/

I just read "You should not use Zithromax if you have ever had jaundice or liver problems caused by taking azithromycin." What is in it that would have a problem with past history of jandice? Or what does jandice leave behind?

T.Anna my DD15 finished her Abx seems like a few weeks ago now and her raging has persisted but at much lower rate so I feel your pain about wanting to turn the corner. During DD rages I have to keep her from banging her head, choking herself or pulling out her hair. She hates the rages and wants it out of her head. A few days ago DD started for her bed as she does when she needs to control her rage except this time she started gathering her things. bags, tablet, cords spray bottles etc. with her in her bed. She was afraid they would be taken away and kept pulling and holding everything close to her body saying "mine" including tray tables she uses. She started crying and kept pulling everything closer saying mine. She didn't rage but her crying was pretty intense. She just had this obsession about her things. That night I fell asleep at ~1am waiting for her to sleep. I woke up about 3am and she still was not asleep. Finally I gave her a benadryl at 4am, she finally slept at 5am. I was able to sleep for 30 mins. I woke up at 6am and made coffee and started reading my email. DD came down the stairs at 7am. She has not slept since but she also hasn't had any rage. I have a very big headache from lack off sleep myself. She gathered up belts and strings any kind of rope she could find and tied all of her things together. I am apprehensive about disturbing this obsession, I also dread the rage. We have been trying to get her to see the allergist for the past couple of weeks but her anxieties take hold. So I'm hoping this week we can get her at least to see Dr, B and get new lab tests.

Thank you EAMom. it does help.

Ok, I was browsing some stuff about Tonsils and why Strep was so hard to get rid of and came across a bunch of videos on Youtube. One Doctor was removing a huge stone through surgery and was saying many have Tonsils all wrong. That the purpose of the Tonsils he said is to help filter toxins, bacteria and viruses. He said that stones can hold bacteria. He said that stones in the tonsils can hide the bacteria from swabs. He also said that only the stones should be removed and not the tonsils. Here is a DIY Video:

Sorry for this, It is not meant to offend. So lets say that DD takes this test and it comes back and say "Highly Likely" PANDAS/PANS. Is it some sort of paper that I'm going to wave in every specialty Dr.'s face. I have a test that says DD has PANS please fix my DD. What is the point? Every specialty Dr. is going to want run their own test to verify numbers when prescribing treatment. I already know DD is sick. I want to know is it the bacteria, a virus or something else. I wants to know specifics. Where is the value in getting a general opinion? I read some postings about 23andme and took a look at the site. That to me provides something tangible. If I can use the Cunningham Panel results to get approval for IVIG or other treatments from DD insurance then it has lots of value. But I'm thinking it's DD history that gets the approval. Maybe I'm just not understanding the whole thing because I'm so tired of working so hard to help DD keep control.

I think there are limitations to the scope of PC physician so even though your PCP understands Pandas, there may also be other Neurological issues that need to be addressed like for example, genetic diseases. What ever the case, if your PCP is recommending it, then I'd seriously consider making the necessary accommodations to get the neurologist's opinion. Sometimes when I get stuck at my work, I ask my coworkers opinion. Sometimes it's useless. Other times they help me to address the problem from a different approach and then there are times the answer was actually obvious.

Mr DD doc dont charge us for phone calls. She said she would charges 60 per visit when i lost my job but didnt charge us when we did visit and nothing for the referrals. So ya i'd say the 150 is a bit much.

I found that its hard to tell somethng to someone that already knows because they wont listen. They have lots of experience at solving the problems we are addressing. I used to get this more when i was younger with my work. One thing i would do to get them not to be defensive was to ask them as the expert for help. I would identify the problem and any typical differences , and proceed to identify why the common solutions dont work. This is the point i would get a clue about listening or being set in ttheir way. We are on our second pcp and what i did to save time was write a history summary about DD. Many doctors are about time management due to the nature of their profession and anything you can think of that helps them with that is a win win.

From reading the first few and last few paragraphs of the article it looks like they have been under the microscope since 2009.

Not really sure if this is helpful. DD when nuts breaking and throwing things at the onset. As we started to understand the cycle and that lying down enabled her to self control more. We guessed she has some sort of compulsion for breaking that seem to calm her so at first we started giving her thinks she could scatter that was easy to pick up. Then we started to give her sheets of paper she could tear and that seemed to work well. Most of the time now if she feels it starting to happen she will lie down to self manage it. Also at first I was restrainer her arms and holding her down so she would crash into things and more importantly knock herself out with a blow to the head, chock herself or pull out her hair. Believe me if we let her she would pull her hair out by the roots. But then I learned that just blocking her arms from reaching her head she was less combative. I encouraged her to scream and yell to vent. You might want to inform the neighbor, our called the police. So again, I'm not sure if this is the good way to do things because we are still waiting for the behavior consultant to start servicing.

Did a quick search and found this https://www.pparx.org/

Came across this article: http://www.saturdayeveningpost.com/2011/09/12/in-the-magazine/health-in-the-magazine/viral-link-mental-illness.html Apparently he has a lot of publications: http://www.ncbi.nlm.nih.gov/pubmed?term=Yolken,%20Robert%20H[Full%20Author%20Name]&cmd=DetailsSearch Dr. Robert Yolken of Johns Hopkins Children’s Center http://www.hopkinschildrens.org/robert-yolken-md.aspx I wish I could find a doctor near us that had this kind of savvy.

Since DD stopped her raging 5 days now after her course of Abx, I haven't been giving her anything except for quercetin a few times. She doesn't seem afraid to leave her bed she just seems prefers it there I think because she feels safe. I'm not sure because she can't find the words to describe it. I know she has anxiety which was and is one of her primary symptoms. She seems tired a lot now. Yesterday she took a bath all by herself and then cut off half her hair which was to her elbows and now is to her shoulders. She can't explain why but perhaps she did this for the same reason she took a bath? I'm thinking self motivation, because for the past couple of months we have tried making a trip to the hair stylist but each time she can't do it. I asked her before if she felt afraid and she said know. So I just asked her if she is standing up does it make her feel dizzy and she nodded yes. uh?

DD won't say why she don't want to take a bath Could be a lot of things. At one time I thought is was sensory, the feel of the water possibly hurting her. I wish I knew. When I give her a sponge bath, I wash her hair in kitchen sink, but that can still be traumatic. I've asked DD many times and she always answers, I don't know. I've asked her if she is afraid and she doesn't know what to say. She does that when she doesn't know how to find the words. I'm afraid to ask her if she is afraid she will go down the drain she might start obsessing over it. We are waiting for a in home behavior consultant schedule. I hope they have experience.

This is absolutely a wonderful idea. Dd is above average visual learner but delayed everywhere else. She is also mostly nonverbal aswell.

I have doubts about how effective CrowdMed can be in coming up with a diagnosis in a few hours without the clinical testing. My work involves troubleshooting everyday and I am very good at it. CrowdMed is great idea for lessons learned and cases under the scope of probability. i.e. DS has a rash all over 2 days with cough, fever and its been going around, Doc concludes because he is the right age 95% have measles that he has the measles. In my DS case this was an incorrect. 9 doctors diagnosing everything from kidney failure, liver infection, to Hepatitis C. couldn't figure it out. His dermatologist took a skin biopsy and discovered he was actually having an allergic reaction to medication he was being given. That $199 could have never been achieved by CrowdMed without all the previous history, testing and process of elimination preformed the previous doctors.

That is wonderful. I don't get why they don't want to take a bath? I have to do baby step to get DD in the bath. Start with washing the feet, then the legs and something even her hair before she decides it is ok to take a bath.

For me It's a red flag when you can't get an appointment for 6 months. It can be worth a trip to the actual clinic for some face time with the appointment assistant when your working on a medical problem. This way you can be adamant about getting a realistic schedule rather than than one designed for moving patients through the office. With out medical group the primary is not the only one that can make a referral. DD's psychiatric doctor was the one that referred us to UCLA for an assessment.

Wow! I really appreciate all the responses. Yesterday morning was her last rage. She has now past 6 times without a rage. She has had some emotional swings but only a little brain fog. The last three days I have just been giving her Quercetin rather than ibuprofen. It's been a heat wave here and she actually wants to go outside for a shaved ice cone. She is laughing again. Our little girl has started coming back. We actually made it to and from the shaved ice and fruits restaurant where there was a small crowd and she had no anxiety. This is simply amazing! She refused to eat anything I think because she is scared to have a reaction. She only eats rice and fish and now won't touch sugar or bread. Even if mom and dad want to let her try. Let's see how she sleeps and if she can make through another morning. Update: Mom with DD's Aunt wanted to take DD on another short trip and DD was so excited. She changed right away and was ready and waiting for mom and aunt to be ready, but it was taking way to long DD was waiting for an hour and started getting anxious. As she started with her motor mouth routine it was obvious she was trying to control herself from out bursts but for the fist time aside from constantly repeating a word she had a verbal tic, that sounds like a honk, during a mild anxiety attack that turned into a crying session. This only lasted about 10 minutes. DD calmed down and one hour later they are off on their trip. I wished mom would wait for a while longer before riding the horse but that ain't going to happen.

We haven't gotten a definitive for her infectious trigger. This is the second time she has had rages, the first we did know anything about infections and we went through about 3-4 months of them before we noticed her inflamed throat and got her a prescription of amox. She was pretty much rage free with odd anxiety attack or emotional liability after the antibiotics for two months. We were able to take her bowling a few times but she still has anxiety with large crowds. I think you may be right about CBT and ERP we are still waiting for more tests and recommendations from her assessment by UCLA.