4Nikki

Our dd raged 4 months straight until she was given antibiotics for strep. Then started back after two months and was given antibiotics for bacteria infection. She raged on a cycle with this treatment but the rages stopped after the dosage. None of the ssri class drugs worked with her and even made it worse. Benadryl was the first thing to actually help her through the night. Ibuprofen helped curb the intensity. We learned using pillows for blocking worked better because restraining make her more intense. Ibuprofen with a stimulate worked best for our kido. We tried using just the stimulate but it didn't work with out the ibuprofen. One ER doctor prescribed a anti seizure med that worked through nasal delivery. It was the stuff used in surgery and works on anyone, but a difficult prescription we had to get it at a compound pharmacy. I think the only reason the doctor prescribed it was because dw is a or nurse. We had to put everything away no shape objects or things to be thrown. Dd would try to pull her hair out of her head. Or choke it out of her. She would wind cords so tight around her hands and arms it cut off circulation. She broke everything. Ripped a bedroom door right off its hinges and threw it down the stairs. She tried slamming the door on her hands. It took us a year to understand services that could help. Some of these people can be dangerous to your family life, because not all are well informed, but there maybe times, they can be just the help you need. Service help can vary greatly depending on where you live. I haven't come across any good information on restraining, except from one experienced Emergency response team. We had them come to our home and do an assessment. They had recommended a specific home that could help if we were to overwhelmed. One other thing, pay attention to his diet. Sugar exacerbated dd's rage. We found gluten free also helped dd.

When dd was raging multiple times a day ibuprofen 1000 took the edge off but didn't stop it. Benadryl helped get her through the night. What stopped it was antibiotics. We later found that advil cold and sinus worked well. Turns out it's 200 mg ibuprofen and 30 mg pseudoephedrine. The ibuprofen is a anti hystamine and the pseudoephedrine is a blocker. I sure everyone has different levels of dosage and react in different ways to different drugs. Since there is no known method for making a proper analysis of your child by their doctors, its us parents are stuck with multiple visits to many doctors and tests after test. And still it is trial and error and process of elimination. I found this forum to be a source of reason. There is no way to know what works for your child so it's up to you to keep track and log every step you take and your child's reactions. One thing I've noted with our dd, it takes about 30 mins for an anti-inflammatory to kick in. 10 hours seems a bit long for a reaction.

Only thing I've ever been sure of is Dd's sudden onset of symptoms and rage were caused by something and the culprit has been her autoimmune system. Dd has had probable diagnosis but they have all turned out to be the result of her immune system causing the problem. The c panel test was requested by the doctor to help point us in a direction that could confirm pursing treatment for pans/pandas. @powpow, what are immunosuppressive treatments? Dd has had two steroid treatments, and during the dosage her verbal tics increased. But then went away after the dosage was completed. When ever she flares with illness we give her ibuprofen with a stimulate which seems to work best and sometimes benadryl for night sleeping.

I also have a couple of questions. We have been awaiting results DD doctor just told me she has B1, LYSO, AND CAM results are out of range. I have no idea what that means. Can someone chime in? The lab never sent us a login to get the results on line. I think this is because the procedure for payment was differ than what most have gone through on the forum. The hospital lab did the processing for us and made the payment.

From what I've experienced, It's all a guess as to why it works. Most doctor's I've asked just shake thier head, and say we don't know. When you look up how ibprophen works, it say it blocks the production of Prostaglandin. We have also had some success with Beladryl. Beladryl is also a blocker but a histamine blocker. I can tell you we started out giving DD 1000 mg of Ibprophen and it seemed to help curb the rage. But then we found that a 200 mg dosage of Advil Cold and Sinus had more of an affect. It has pseudoephedrine HCl 30mg in it. When we told her neruo, he said it might seem like a contradiction to give stimulant to a raging child but it is prescribed to ADHD children. We tried just the stimulant with out the ibprophen and it had no effect. Lately DD was diagnosed, but not confirmed with Albright and the genetic doc said it can wreak havoc with PMS.

I was pondering the cost of getting the test done. DD has the clinical symptoms. Other than that, I don't know of any other test that would sort of confirm a diagnosis of PANDAS/PANS. Perhaps the lack of anything else not showing up is somewhat a confirmation, but insurance companies want a positive test result not a negative that says what else can it be. Typically since most doctors have no experience with PANDAS/PANS, they are not willing to diagnose what is considered rare. One issue is prescribing long term antibiotics. I'm in the West and from what I have read it appears much tougher to get treatments.

OK, So DD has a new doctor that wants to run the Cunningham Panel for treatment confirmation. So there is the Cost Issue. And I'm questioning is any thing going to show up in the tests? (We had expensice MRI and LP done with unremarkable results. DD blood work numbers go up and down al the time for different stuff.) The hospital gave me these codes to check with my insurance company for coverage and said thier charge is $1200. 83520 – Immunoassay for Analyte 88230 – Tissue Culture for non-neoplastic disorders; lymphocyte 86352 – Cellular function assay in volving stimulation and detection of biomarker So my insurance says the tests are covered, but I have a deductable of $400 in-network and $1000 out-of-network. Then 80/20. I would have though since the hospital is in-network then and the specimin is collected by them but sent out for specialty then the whole thing would be considered in-network the way it is when the in-network lab sends out speciality testing. When I looked at the Moleculera Labs charge of $925, my brain automatically went into a mode where I'm thinking I need to save that $300 the hospital is charging. After a half hour of pondering this issue, I think I decided to shake my brain and just let the hospital do everything. Any thoughts? I'm thinking we have to do it so at least there is a chance to know if she has pans or not.

Well... aren't kinda of the same thing? A Steriod Treatment. One is the same dosage over a period of time, while the other is a dosage that is reduced over a period of time. The difference is one is more of a abrupt stop while the other gradual stop to the system. I would think it just matter how sensitive your child is to receiving.

What out for the SSRI's (psych meds) they made DD worse.

Ask the Lab, if they have home service or if there is someone is doing home service in your area. We have found that many doctors actually order home service for patients that are older or have mobility issues. Before we moved to Northern Washington we found one oof the technicians would come on a saturday and charged $60

Do you mean responsive to antibiotic or another treatment? (grasping at straws here after steroid burst was unpleasant to say the least) I mean before DD had her first steriod blast, her symptom before going into a rage episode. Was, when the verbal tic showed up, it was like she was in a unresponsive trance. That changed when she receive the steriods. DD's verbal tic happend more frequently but without the trance like state and a intense rage followed. She even had the verbal tic while she was sleeping. After the Steriod blast, her episodes were far less in frequency and less intense to the point that they became more like mood swings. The big change was that when her verbal tic started, she as no longer in an unresponsive trance like state. You could have a conversation with her and she was aware of her verbal tic.

DD had a steriod blast last April and it also increased her verbal tic while taking it, but it because less intense after completing the dosage treatment. There was also a change where before the blast, when the tic started she was unresponsive after the blast she became responsive. DD has just started another Blast treatment due to some returning rage symptoms.

I've been afraid of getting DD an allergy shot because she has overall been doing better handling her symptoms. First, I have no clue, but I just fear that its a bad idea giving a kid a shot to send the immune system pumping antibodies when it's been the system that attacks her body. Like I said, I have no real clue. Its want to say it feels like my intitution at work, but my brain tells me, its my fear. Then again, we have had some success giving dd stimulants with ibprophen when she has ADHD symptoms and Doc says we think that might be counter intitutive but when you understand it, it makes sense. I was thinking it might be a good idea to get a really goods air purifier. I know my own allergies flare up with more stuff in the air. I just have to put away a little more budget for picking one up.

yea I second nicklemama, we have purchased the generic stuff from riteaid and csv and in the case of alergy medication the generic stuff, although it says it's the same, it didn't perform the same as the branded. I'd say if you are sure the source is "exactly" the same and has same production just a different label then it's just about the label.

Context? Typically we have to 'spoon feed' the school on DD condition(s) and keep situation(s) under control. So no worries about the school getting info. (On a side note, I've not seen in any documentation where the school must destory medical history records when access is given on a time limited basis, so I'm guessing once medical records are released, they become part of your childs school records, which makes me wonder if those records have the same protections?) At the other end, I have read about parents being sort of intervened on about providing the right care for their child, which to me is the school over-extending typically at the behest of an overzealous.

Dd does but only with mood symptoms. I woul have his hearing checked.

The internet is absolutely amazingly filled with Free material and and help for learning anything. Google / Youtube have tons of stuff that make it easy. In addition I recommend going through how to seach google. There are tips and complete lesson from google on how to search. Here's is an example of what is available for school stuff: http://www.free-phonics-worksheets.com/ We bought our DD a Electronics Phonics pad that we have been using over the years she is a visual learner.

Same as mayzoo for our DD as well.

Since the first onset of DD's symptoms we sought mental health which ended up being a failed treatment option. After being enlightened about of PANS/PANDAS, I've been at work over the past year and a half explaining to different services and doctors how DD's symptoms have been the result of pathology rather than a learned behaviour. However, since DD received a steroid blast treatment a few months ago her symptoms have changed and when she used to be unaware, she is now aware and able to manage some self control with encouragement and motivation. DD's symptoms have been traumatic over the past two years and she now has Learned Behaviours as a result of illness initially causing the Behaviours. I believe Therapy is now a viable treatment option. (not that it hasn't been during her periods of being unaware) I often hear that mental health treatment through government and social services is covered. Has anyone any experience going the route they can share about getting services implemented?

Only thing I can guess is that the throwing and breaking is some sort of venting relief. I've been trying to Google it from my phone but that don't work so well. Most of what I've found is from people that think it's a naughty reaction but I doubt that very much.

Most traditional medicine is going to refer you to Psychiatry with what is perceived as out of control behavior issues when a Neurologist can help eliminate many physical causes of symptoms.

Seriously? Soap! (joking...) Practice good parenting skills. Children follow your example. In General people are realistic and can understand if a child is sick, don't worry about edicate if they have to be in public. I would concentrate over your child's welfare first. You can drop a hint to a to the concerned gawker if it brothers you that much, they don't have to live with what you do. We try not to puch DD's anxiety too much as she can have an episode if she is out of the house too long. She's has a episode 3 times in public over the past two years. Twice shop owners and security people were extreamly understanding and helpful. The other time it was DD's birthday and we were on our way back from a hospital trip (long drive) and DD felt she could do a little clothes shopping. She knew a panic attack was comming and we tried to make it back to the car but couldn't. I had to educate the security. A little embarrassment was well worth seeing DD pick through the clothes racks the way she used to enjoy finding an outfit.

DD started out with this during raging. Throwing and breaking things which seemed to help her as if she was venting. We had no choice but to restrain her because of the damage she would do. She then started targeting other things, people and herself which also required restraining. Her rages we so strong that she ripped a door off its hinges and threw it down the stairs. She threw her brother across the room, DS lost it and hit her back and that created a lot of anamosity that was very difficult to overcome. She would try to pull her hair out, choke herself or break her hands between the door and the jam or the floor to get whatever was inside her out. She started tying her hands with anything she could find extension coords etc. so tight her hands had no circulation. We experimented with different approaches to change things. We found that restraining actually increased and lengthened the episode intensity. We found it was better to help her self-manage rather than restraining. Pillows and blocking rather than restraining helped reduce both the intensity level and duration. Giving her paper to tear up helped with what seemed to be a need to vent. Every day, fighting the rage episodes, I would help her to her bed and tell her it was her safe place and she eventually used that safe place to self-manage. She would also write on walls, so I gave her paper to write on and she started writing on the paper to help her vent as well. We had lots of luck with her phone and tablet throwing of the items not breaking but eventually they did. We took them items away, when she did throw them, but eventually through self-managing and reminding her to protect, at every on-set, she eventually stopped throwing them. (After the first tablet was broken, I always bought protection for peace of mind.) It took time and heart felt acceptance from DS that DD's rages were not something she could control, before the animosity dissipated. After DD's steriod blast her symptoms changed from being unaware at the onset of her verbal tic to aware. She now does her best to self-control but shouts very loud to vent. Sometimes she slams doors but I try to keep a presents suttle enough to self-manage show she doesn't let it go out of control. If I leave her be, the behavior will exculate.

SSS most any of us have the same story about doctors that don't know what to do. Even the ones that are eager to start but give up. As parents we are the voice of our children. We need to Do our due diligence in seeking a doctor that can help. There are some, even some that are part of the group insurance. When you find one that is unavailable, "I can't accept any more patients" insist! DW, can get overly passionate at times but it produce results. I have similar health plan. The FSA account really helps, only this was my first year and didn't put enough into it. DD already reached the maximum out of pocket by the third month and we don't pay deductible s any more for the rest of the year.

The CIA says they do not believe in coincidence so if you are trying to figure something out, it's probably a good go by. Initially I sent an email to Dr. T. office to ask for a phone consultation. I was surprised to got a response within first hour. I was sent the phone number to call and make an appointment. I was told the first consult would be $450 and the succeeding would be $300. Seemed reasonable for a office that did not accept insurance. (Which by the way, was promptly charged without invoice/receipt after phone call consult.) Set up the initial consult date. I provided the office with a complete history write-up on DD, blood work, mri etc. I did this to get the general questions and the just of DD's issues out of the way. During the first consult, I had to go over what I sent in the history write-up (I didn't think I would have to do this but then again this is nothing new. I think based on experience, that most people don't read first. So I just chalked it up to a waste of time/money.) Dr. T. ordered a plethora of blood tests. The second consultation, Dr. T sent a copy of the blood test results and a possible diagnosis. He gave advise about treatments explaining it would be good to see if DD responds and said he would do a short follow-up after the treatment was done to determine the next steps which he also discussed as said he would order some blood tests after to recheck levels. This could have taken 10 minutes but the conversation lasted quite some time rehashing, again, what was in the initial history write-up. The follow-up after the second consultation didn't happen. I sent follow-up emails explaining DD's reactions day by day but received no follow-up reply. After repeated calls to his secretary and repeated promises to talk with Dr. T. and repeated promises to return my calls regarding the follow up, nothing. I then proceeded to ask for copies of the charges (invoice, typically business do this without asking before making charges or at least provide a receipt) I wanted the receipts so I could try to get some reimbursement from my insurance and set up another paid consultation to get the follow up treatment. Ah, about 6 weeks after, I was sent the copy I requested in the mail but only the invoice for the last charge. Now all of this could easily be explained, if this were say a poor office manager, but whatever the case, it became clear to me that the office "policy" is not make any phone consultation appointments, even for a few minutes, without their being a charge involved. (I premise this conclusion by the first statement and grief over trying to make follow up.) I can't say that this is completely unethical on Dr. T's part, but I will say for someone to have a persona helping our kiddo's that the office policy certainly appears to be apathetic. My general perspective is, If you have to do so much to figure something out about a business, I would suspect something. My first thought is that it's his staff sucks at managing the business but I couldn't tell you what's truely amiss about his office. With what seems to be his current policy, I would recommend, if you need to consult Dr. T and have to use the phone, that you plan on having a budget of at least $1200 to get you though the initial diagnosis and treatment. Budget much more, if your going to have him start from the beginning. Did Dr. T. Help? I'd say yes. but he didn't do anything beyond any other doctor we have seen other than having seemly having more experience with DD symptoms. Is he worth it? I'd again I'd say yes, but only because we have something to chase at finding tangable help for DD.