4Nikki

DD is mostly not able to articulate how pain, othen than my tummy or head hurts. By visual disturbances would light or obsessing over the position of a window shade be a disturbance? DD has a small dog so.i immagine she may have gotten bit or scrached especially when she is in a naughty mood and wants to pull his tail. So uncharacteristic of her because she normally is super sweet. DD will be retested again I'll ask Dr. B to include stuff that can come from bug bites and dogs.

I'm sure we haven't checked for bartonella. would it have shown up on the bacteria discovered in her urine or does the labs have codes for it? Also shouldn't the Augmentin/Amox have cleared it out? What does burbur do?

Update: It worked but then didn't work. I was able to delay or skip a cycle but not keep it from happening. We had a lot of fun playing and DD tried her best to control her outbursts in her bed. She is staying by her bed always now. "My heart breaks when she is screaming, “I can do it anymore! I want to change my life! LEAVE ME ALONE!" I think I lost 5 lbs from this last episode. The stress is exhausting. I did not have to restrain her but she was going absolutely berserk. I gave her pieces of paper to tear because seems like it helps as a form of venting. During her first onset, back in November, she would run and break things. Tearing paper is much better than breaking windows.

Ok, I'm have absolutely no idea if what I'm doing has an effect. My DD has been raging or would have intence crying episodes and I've calmed down from my panic enough to notice the times over the course of her antibiotics. She raged about every 4-5 hours and averaged 3 times a day within the 1st hour of waking up. I would give her ibuprofen 600mg, if I could get her to take it or quercitin first in the morning after we got something in her tummy. And 50 mg of Benadryl at bed time to help her sleep through the night. For the most part I think this was effective or at least not as intense as the fist part of the year Jan-Feb. It may also have been the same and I was just more overwhelmed as it was a bit of a shock. So yesterday I decided not to give her any ibuprofen mostly because she was refusing in the morning so I though she might be right and it's a good idea. Then I decided not to give her any Benadryl and she made it through the night without any sleeping problems. This morning she awoke more aware than she has been over the past month. I'm hoping the raging is starting to subside. Because it's Motherday, I was cooking in the kitchen and an episode started to hit her again. I've learned that letting her self manage with encourgement is way better than just restraining her from chocking herself and pulling her hair out. Apppearently just blocking her arms is enough she is much less combative which keeps her from going into a full rage and. Although I still have to be on guard. At the time for the next eposide she was doing her OCD thing and I decided I would try and break her mode before she went too far. It seemed to work she went through the time period with out any mood swings. So I'm wondering if this is what is meant by Cognitive Behavioral Therapy? i.e. Changing thier thinking behavior to something else. Also I'm wondering if this is what it is then why wouldn't hypnoTherapy work as well?

Same here: DD just finished a her perscription of Augmentin 2 days ago and has been raging the whole time. Although I feel like the ibuprohin has helped to curb in the intensity. Seems like she is able to have more self control with the ibuprofin than with out it. She will stay in her bed to rage rather than having the need to run throw and breaking things. Benadryl 50mg only for bedtime has been working for us and she sleeps through the night. I found that if I give it to her 25 mg durning the day she can't sleep at night. DD is still having rages even through we have finish the Augmentin. Dr. B said we should bring her to childrens hospital where they can figure out what meds will help. I was thinking of using something else but came across this: http://curezone.com/forums/am.asp?i=1440542 "Can antihistamines like Sudafed and Benadryl make auto-immune conditions worse?" "Sudafed (pseudoephedrine) yes, Benadryl (diphenhydramine) no. The difference is that Sudafed is a stimulant, and Benadryl is a sedative. Stimulants weaken adrenal function, which is a big part of autoimmunity."

"He tested for a variety of rare antibodies, on the hunch that the girl might have some rare sort of autoimmune disease, in which the immune system attacks healthy parts of the body." So how can i get our doctor to test fot these rare antibodies that attack GAD. DD has many of the same symptoms.

DD had a crying bout for about 15 mins and brain fog for about an hour. She kept opening her eyes wide and looking up. We have had a hard time getting her to wash her hair and its got tangles now in the back. When she was crying she would pull on tangles and pull out some strands of hair. I had to restrain and block her from doing it. She started obsessing over it saying her hair is falling our and she's going to go bald. She also would chock herself and say I can't breath. The lights bothered her whe she look up athough it was dim light I could see her eyes from her tablet light and I could only see about 1 mm of color the rest was her pupils. I read about checking to see if the pupils are dialiated, but I have no idea what that means if they are. I also don't understand why the light from a computer or tablet doesn't bother her but not the regular light does. Is all of this OCD? I'm not sure if this is part of the Agumentin battle or if it is related to the glutin free sugar free cookies she ate because the reaction time from the cookies is about right when she had sugar before.

DD has 4 more doses left. Ibuprofin has helped to curb the rage but she has a lot of "brain fog" (not sure if I'm using the term correctly). She is trying to self manage but a lot of the time its like walking on egg shells.

That really helps, I've not heard of Bartonella but will look it up. DD had a urine test and it was positive for many types of bacteria. I will try to see if I can pick any descriptions up from the results. Forgive me for not knowing but I'm not sure what Detox is, I glanced at it before but though it was detoxification as in getting the drugs out of her system. If that is what it is then do you mean she should get any other meds out of her system so there is no contradiction to the antibiotics?

Anyone have rage reaction to augmentin? Dd has been having multiple rages and day 5 I noticed after Augmentin she started having diffictlty. Im a little exhausted because her rages are intense.

Seems like most on the forum have so much more to test way above what we have been doing so far. I hope we are able to nail it down before we go through as much. I feel blessed to have found Dr. B she is very froogle and wants to make sure we have the right treatment.

Dr. B came back and said the new results showed she has many types of bacteria infections. One is a urinary tract infection. I couldn't understand her over the phone about the others she was saying the something about the white blood count and another ??? number. I'm going to pass by her office to pick up the test results and a discount card for Agumentin. Still trying to get DD switched to wife's insurance. I asked Dr. B about check for other Viruses and she said at this point we can test for EBV but for others we need to other things first and also get with an autoimmune specialist. I'm thinking it's better to pay out of pocket, than it is to continue to use my insurance card and wait for the bill and see if it's cheaper to pay the preimum. Dr. B is only charging $60 per vist and free over the phone for non-insurance patients. Sent out half a dozen resumes monday got one back yesterday waiting for the interview schedule. FC

I think it was just an overall number, Dr. B sent us back for a more comprehensive AutoImmune lab test. DD has been flaring now for the past 3 weeks. The past few days have been the worst sence her onset last November. We enjoyed about 6 weeks of no flare ups since she had the ABX. I'm expecting lab results tomorrow. I got laid off an my insurance ended yesterday. I'm trying to get DD moved to my wife's insurance esle I will struggle the private payment. Really very bad timing. ;(

DD has been having raging issues the past 2 or 3 weeks, but I have no clue as to why.

My DD15 came back with no strep in the cluture and a normal ASO Titer 150. But her doctor showed us numbers that said her AutoImunie was abnormal. Dr. B said her normal patients come back with numbers of 8 to 10. DD numbers were at 160. She has order another AutoImmune test she called a panel. So doesn't this mean DD doesn't have PANS? DD had an anxiety attack at the doctors office so we couldn't hang around to ask the question.

Now I'm overwhelmed again. I never had chemistry. So google will be my buddy in bed again. DD's Mom is gonna think I'm ignoring her again. She gonna take away my phone. Don't get me wrong, I really apreciate the feedback. DD just had 6 vials of blood taken yesterday morning out for tests. PB says we will know on Friday. We were supposted to get some recommendation from UCLA but had to reschedule. So we are setback a few weeks not on making a plan. (sigh...) Doctor's should never be allowed to go on vacation.

DD couldn't look straight and could not focus at her onset during for first 4 months. If she tried to look at you her eyes would roll and even with lazy eye movements mostly she seemed incoherent. I even tried to hold her head but nothing could get her to focus or look straight. I think it was the abx was cleared it up, but it could have been up by it self or because we started her on GF & Sugar free dier not really sure because we hadn't had any testing.

My DD 15 started having extreame anxiety about being out of the house about 1 year ago now. She has been mostly non verbal for 11 years and only 4 and 5 word sentances outside the home with select people the past two years. The exception is when doing her ocd thing in the house, she turns into a motor mouth. I just thought of this, this afternoon, upon returning home after being out of the house with DD for most of the day. I was thinking her anxiety "need" is she needs to be at home to do her ocd thing. So I asked her and she said yes. So ok, I have no clue. but does anyone else experience this kind of anxiety?

We are in So California, typically all the professionals we were connected with wanted us to admit her to a facility. We were thinking we could get urgent care would give the abx but we also don't want to circumvent her primary care doctor. DD with Dad's encouragement can keep it under control, but mom and big brother have a very hard time. Right now she is controlling it in her safe place. I have important work in the morning and can't be home so I'm more worried tomorrow when I'm not around. DD has an appointment with her primary care doctor Monday. Mom has an injured shoulder and DS has school so it will be difficult for mom to handle DD. We will get UCLA recommendations Tuesday and DD will see a Dentist on Wednesday. I'm not sure if DD will have enough control to make it through Wednesday. So I just talked with DS and he will miss his class tomorrow to help.

DD is not on Abx, we are still trying to get her diagnosed. Tried to get in to see her new doctor but she wants to see her before making any prescriptions. Her first prescription was amox for 10 days because of the strep. We felt the need to change her primary doctor because she just had a tough time believing DD behavior is anything but stubbornness. DD struggled with keeping control yesterday but we were able to keep of the rage away by keeping her mind occupied with other things to do till the ibuprofen wore off. After a 30 min episode before bedtime, we gave her ibuprofen and benadryl. She was able to make it through the night ok. This morning she work up and started off with what we think is her OCD. She also has a noticeable sore throat. Mom is trying to contact her doc and we are thinking to bring her it urgent care. Our problem is we don't have the test that identify anything except for a positive AOS titer. New doc needs all the feed back from testing that hasn't been done yet before she make a plan. DD went into the bathroom where she can have privacy to do her OCD thing. We stopped her from typically going to her bedroom to do her OCD to break the repetitive behavior where she can't seem to keep herself from loosing control there. She readily accepted this, I think because she wants to be in control. I spoke with her and she wants to see the doctor to get the bugs out even though the has extreme anxieties with going out. For 14 years she has been mostly non verbal but this OCD thing makes her a nonstop motor mouth in the house.

I'm pretty sure my DD15 has selective mutism. I'm not so sure if PANDAS/PANS has contributed to it or not, but with the anxieties would seem easy to make a connection. She could speak at home but would not utter a single word except for a few select people outside the home. And this is with years of contact. We did not recognize she had this condition until about 11 months ago, because of her global delay. Like PANDAS/PANS it is a problem that most of the doctors and schools are not even aware of in California. You can search youtube there are a few good documentaries.

I read some of your posts and I feel so inadequate to handle my DD symptoms. It's been about 6 weeks since My DD has completed her Amox. She was extreme symptom free after fights the past 4 months and now the past four days she has daily crying bouts and started with a little rage today again. I'm only able to help her fight the symptoms with Anti Inflammatories and over the counter alergy meds. We don't know how to the the professionals on board with identifying the cause but that's to many of the posts on this site we have been able to help DD manage the symptoms. DD is calling....

Karl is an awsome writer.

I think It's really about money. 504 is so federal moneys become available. I'm guessing the district is pulling money for something like being absent. Since the school probably already budgets the money then absences would mean they fall short. I doubt they plan for ccontingencies these days. so any oppturnity to generate funds would make them act. Anyway I have no Idea kust rambling.

OMG, Before we had even heard the word, Pandas, we stopped. Giving. Gluten and sugar to our DD15. Because we read that diet could have a big effect on Autism symptoms. DD15 was full tilt having multiple.rage episodes a day after having them for three months. Mom was at the breaking point, we were absolutely desperate and clueless! As soon as i read back diet to mom, she immediately connected hot chocolate to the rage episodes. The first week the rage episodes stopped. Let me say that again. "The first week week, of no gluten, no sugar the rage episodes stopped. We still dont have understanding of the complex issues or if DD15 actually has PANS but she definitely has the symptoms and when, i fill in the forms, i use most of the lines. But I can say there is a connection between sugar, because when DD15 even got juice or an apple there was a reaction. We were not aware of strep at the time, so i cant say if the sugar was a type of catalyst or something else but that is what my best guess is from what i have been exposed to so far.