4Nikki

I sure hope that not right. I was under the impression that both public and private schools had to follow the same rules at least that is what we were told regarding admitting DD in a private school and they had no resources for special ed. due to mandated state and federal requirements. We had the exact opposite experience regarding getting a physiologist involved with DD. It took almost a year for us to get the home visits started and we think the visits were very helpful. It took a lot of work on our part to make sure the visiting physiologist understood DD condition.

DD has had similar but goes on repeating "anyway". I also think it can be described as vocal tic. When she does this, she looses some cognitive ability or self awareness. If I catch her early enough she will tell me it's getting harder to think. With DD if left along, It predicates a rage episode.

I read a revised estimate, i think from nimh that said they now think that as much as .25 percent of asd children suffer from pandas/pans. if the actual number is anywhere near that then i would agree from an administrative perspective. Certainly make sense to put it in that catagory so that funding is available for children and parents that fall victim

Be sure to check her blood pressure

Update:after going back to the doctor and getting an increased dosage of 30 mg Vyvanse we noticed. Dd starting back with increasing intensity. We abandonded the Vyvanse and went back to the Advil D. and the rages stayed away. We have moved to Washington and will be getting a new doc. I hope we will be able to find the cause. Dd mri showed her brain normal without inflamation so im wondering if it is actually inflamation or some sort of reaction to the histimine. Regular advil or ibprophen help curb the rage but is not as effective as advil decongestant.

It's my understanding that PANDAS is directly born from a strep infection while PANS is other infections not strep and both cause the autoimmune system to attack the brain. The defination does not include encephalitis as a symptom. Not saying that encephalitis can't occur as a result of PANDAS/PANS or even a chance of it happing the other way around. I don't know the cause of autoimmune encephalitis but there appears to be enought simularities in treatments that it makes me wonder if some of the underlying root causes might be the same.

DD 15 started home school on Home & hospital last year and it continues this year as well. With raging issues home school is a no brainier. We have also been able to get through Regional Services for Behavior therapy plus a few hours of respite relief. It's been really beneficial,

On a scale of 1-10: 8-10 Requires restraining and protecting her screaming is over the top. Totally Exhausting 5-7 Requires close watching and blocking to help her control as she is trembling and screaming. Heart breaking 3-5 She is able to control in her safe place but needs to vent. Very worrisome. 1-2 She is able to self Control. Troubling Dr. I says the Vyvanse 20 mg lasts for 12 - 13 hours. She was Raging last month at a 8, 9 or 10 daily until we started with the Advil D 30 mg. When I had given a lower dose of the Advil D 10 mg, instead of 30 mg she had a little shouting in the bathroom for about 5 minutes about a 2 on the scale. We think the dosage Vyvanse 20 mg is too low. We have been giving it early in morning but she starts getting on edge around 8 pm in the evening, Whereas before. we were giving the Advil D. twice a day 10 am and 5 pm without episodes and she was sleeping 10-11pm with sleep drops which Dr. I prescribed to replace the Benadryl we use on occasion to help her sleep. Vyvanse 20 mg at 7 am, the problem now is she is not getting sleepy until 3 am since we started the Advil D to help with the evening edge. Mom made an adjustment of giving adding Advil at 5pm till She will see Dr, I on Monday.

Dr. I prescribed "Vyvanse". 20 mg to start, I'm not sure what exactly is in it. The ingredient in the Advil Decongestant is Phenylephrine HCl 30 mg.

Lots of good links with great information here. Thank you!

I wasn't. expecting such mixed responce. When DD had her first series of rage episodes, we were complete disbelief. DD was so shy and had not a violent bone in her body. At the onset her rages lasted about 4 months turning from an episode a day to multiple rages in a day. We were clueless and desperate to consider having he admited. We called a hotline and got clued in on PANDAS. She tested positive for strep and after taking away sugar, glutin free and a round of amoxicillin, her rages stopped for two months. The rages started back increasing as the days passed and ibprophen seemed to curb the intensity or reduce them to shouting in the toilet. Then her rages got worse. She tested positive for bacteria infections and Dr put her on agumentin, while on agumentin she raged on a cycle. three times a day. We learned that the more you try and restrain her the more combative she was. We helped her to have more control over her rage by giving her paper to tear. Mom and brother learned to use pillows. We encourged her to self control. Ibprophen 400mg has some effect but three times a day, we were concerned about long term use so we switched to advil 200mg but its not enough but still seemed to help keep the major rages away. Last month she started raging once a day, and they we brutal. A little over a week ago we tried advil decongestant and the rages stopped. Unwittingly we had given DD 30mg of stimulant twice a day and the rages stopped. I thpught because the box said releaves congestion it had anti-inflammation drug but showing it to doctor he said it wasa stimulant. Dr. Prescribed 20mg of a longer lasting stimulant as a test. We are giving it a try. The box says it is used for treating adhd. One thing more i wanted to mention DD's rages are not behavior driven. Meaning that they are not the result of a want, need or learned behavior. There are some issues, of cause and effect where she has picked up behaviors theropy is needed and were working through them. I think if she had developed rage behavior resperidol and other phyciatric and ssri's drugs might have helped, but those drugs only make it worse.

What have you done that helps with rage episodes?

I feel like It pisses me off that there are so many doctors out there making diagnosis definations instead of sharing information. Only i dont have enought kowlodge about a doctprs live in this field to know what is going on.

Wheather its little stresses or other major stresses, Stress is an obvious trigger that makes us feel like we are walking on eggs. DD is a master at emotional mamanipulation, I think as a result of being mostly non-verbal. Makes working things through, harder at times.

With regards to herx , i skimmed a little of this page https://chronicillnessrecovery.org/index.php?option=com_content&view=article&id=161 Have you heard if anyone has tried using the hyperbaric chamber to assist this?I would have thought any doctor familuar with herxing and detoxification would have thought about using the HB as an assistant?

Saw DD's Dr. Today, brought the Advil Decogestant. I was quit surprised when he said it was sufed which is a stimulant, as he commented and said it was a stimulant raising his eyebrows. And then to top it off, DDs mom couldnt find it on the iale so she asked the pharmacist and they had it behind the counter. I had not noticed it was actually a different product. The one i got. It was Advil decongestant and nasal relief, which had 30mg rather than 10mg. Dr. said it was being broken down and used as speed and might not be available for long. Very scary giving a stimulant to a raging person that can tear a door off its hinges. Dr. Gave a 30mg perscription that we will try as am experiment. He said it lasts for 12 or 13 hours and the dose is the lower dose which can go upto 70mg. Its kinda freaking me out because i hadnt noticed the dosage difference of the Advil till after i gave it to DD, which was 20mg less and this evening she had an emotional swing. She had not had any epsodes since we started her on the advil decongestant and nasal relief. So im a bit conflicted and not sure if i will get peace of mind. Especially having Dr.'s words stuck in my brain that his not sure if any Dr. would prescrib a stimulant. I've heard of the book but not read it. I'm thinking might though. So now im wondering if my afternoon sleepness going away maybe the result of a stimulant rather than a better nights rest.

After DD initial onset 5 months of episodes and first prescription of Amoxicillin she cleared up for 2 months. Then the episodes came back. 10 days of Augmentin caused rages on a cycle. Been asking PCP to prescribe at least 30 days Amoxicillin buy Dr. is Afraid. Why?

Since you have experience starting your own business, maybe you try consulting? You could try crowd funding. http://www.indiegogo.com/

OK. so I'm not sure if it's related or not. DD 16 has been having rage episodes, I took Advil decongestant to help with my sinus headache and it worked really well. so I asked DD's mom to give it a try with DD cause she was having daily rages. It's been 4 days and with no episodes. I have no idea if there is any coincidence. Phenylephrine HCl 10 mg is what's in it. The box says it reduces nasal inflammation. What I discovered is that it helps me to breathe better when I sleep and I don't get sleepy in the afternoon so I'm wondering if lack of oxygen is an issue. I'm thinking that maybe the inflammation also affects the oxygen supply. I'll run it by DD neurologist to see what he thinks.

I agree, Actually, I have been trying to feed the school district with info about identifing anxieity from the state groups desiminating to the selpa's. My wife has way too much passion about our daughter so I've taken a different course because school management doesn't get it, The school machine cant make the connections fast enough for children with complex issues and while I can avdocate to help identify other children with anxieity issues, I've been concentrating on getting our daughter services for home schooling and other services through the regional offices. It's been working but it's slow.

Our school district is not very well informed on how to handel any of the pandas/pans symptoms. We dont trust them with DD

Who would have thought that inflammation would also be connected to how our body absorbs food stuff?

DD is sensitive to the light and noise. When I'm helping DD to self control her rage, her safe place is her bed. As soon as i see her rituals or OCD like behaviors, I encourage her to self control. Most of the time she is able to manage it in her safe place but when mom starts opening the curtains to let more light in, and then taking away her need to do her OCD, as if shes chasing bad spirts, DD puts on a more combative demeaner. Just as she does when she is more combative when restrained. I found that just blocking her from grabing and throwing or chocking and hitting herself she is way less combative and shouts it out like she is venting. I had to go through this before at the initial onset and managing got easier when DD's mom was not listening to big brother. Superstitions are easy to feed when the symptoms match. I think the undiagnosed of the past were explaintions that gave in to superstitions but i'm just guessing.