Megs_Mom

Wow, that is a really tough question. Our daughter went from being an incredibly social person, to having pretty major issues with her peers for many reasons. Some were related to contamination issues (often hard to see, as she tried to hide the true reasons), others related to extreme anxiety causing her to overreact to everything - and something a little harder to pinpoint. While she was ill, her social development seemed to slow down to an almost dead stop - while the other children kept changing. As a result, she quickly fell behind. When she got well again, her social development skyrocketed, and she was able to catch up, over the space of about a year. Anyway, when she stopped developing, she did seem "odd", almost asperger's like. It was like she was not "getting things". She also could not look an adult in the eye outside of our family. She was very very literal, and could not lie or mislead you to save her life (scrupulosity). I guess my point is that PANDAS is a tricky disease. I would be the first to strongly encourage you to find the right therapist - as whether this is entirely PANDAS or contributed by another challenge - tools are wonderful to have. So have you not found a true ERP therapist for kids at this point? I can't remember what area you are in - PM me if you wish, and I'll tap into some other networks & see if there is a good option in your area. We actually hired a person to help us - and we immersed her in ERP training with us. Our daughter was so severe that we had to do work with her pretty much every moment she was awake. I still remember her therapist suggesting that we only do ERP for 30 minutes a day. I asked her - what about the other 15 - just let her scream in terror??? It was hard for anyone to understand how severe our situation really was. We were very lucky to find a young woman that was very intuitive and helped us a lot. I think you have a good idea about having someone with you all the time for a while. I wonder if you find an ERP therapist, if you can ask them if you can have a few 4 hour sessions in your home -that should be enough to see a truer picture of the challenges. Or maybe you could look into an aide of some type - to give you enough of a break that you can think clearly about your therapy plan - and to have someone else to brainstorm with about what to try next. You are such an amazing mom - I hope you find better answers soon. Your situation has been so hard.

I am never sure why the argument either. Ultimately, all we each care about is bringing joy back to the lives of our own child - and for most of us, then to help others find that same place. But honestly, I don't care if there are 20 different diseases that cause the same sorts of illness. And I won't be surprised if many of them co-exist or cause others to be more severe in presentation. I just care that we identify each of them, learn to test for them and how to treat in the least invasive, most effective ways. I also tend to think that the most severe or resistant cases hand around longer on the boards. So it seems natural that those with classic pandas have moved on - and those remaining are finding additional causes to their children's issues. We tend to be pretty systematic in our approach. We try not to over-react when things are good, and to try anything reasonable when things are bad. Honestly, I am thrilled to learn of the possiblity of Lyme involvement. I really don't think that is our case (I also wonder about the overnight part of it - if it arrives in one day - can that be Lyme?) - but if it is, the Azith is taking care of it at this point. If we go south again, you can bet that Lyme tests will be at the top of our darn list. On the flip side, learning about Lyme has been an interesting part of trying to heal my husband - we are still on that path, and I can speak first hand, that it is as confusing and complicated as our search for PANDAS was. Only time will tell me of the right answers for our entire family. But we want to hear and learn as much as we can on all issues that cause neuropsychiatric issues. I think I tend to listen & absorb - but not to take anything as something to panic about - I have been here for awhile, and remember so many issues that have arisen, taken over the boards for a while, and then calmed down and become simply a part of the conversation. Strep, titer, myco, lyme, immune deficiencies, etc. We are living in a strange time, and it is so hard for us, as parents, to manage our lives that are often torn apart, and to juggle being part time researchers and part time case managers. A little panic seems like the sanest response to what is demanded from us! My strategy is to print anything that makes me perk up and take notice. And then to take some time to think about it. I have a giant (huge!!!) binder with all the ideas I have gathered over time - so many from this site. Then I make a list at the front, of tests or major concepts that I might need to explore at some point. This helps me stay calm and makes me feel like I have options to explore if times get rough again. I wish I'd had all these ideas when she was so sick that I would have tested her for anything! That would have been better than the H&*^ of having no options but accepting a child that changed overnight into a seriously ill, terrified little soul. I have been many "moms" already - that of a normal child, of a child with OCD, of a child with unexplained co-morbid symptoms, of a child with special needs, of a child with PANDAS, and back to the mom of a normal child. I have no idea what the future will bring, but have faith that the work and determination of so many here, will contribute to all our children having answers in the near future.

I am never sure if I should respond to these rage posts or not, as we had a younger child, and I am not sure if we are talking about the same thing or not. For us, all rage was related to being unable to carry out a compulsion, or an overwhelming amount of intrusive thoughts hit her and she could not handle it. This triggered a panic attack, which if you have ever had one, is a very very frightening thing, even to an adult. The panic attacks caused a fight or flight reaction which is very intense. Learning tools to deal with a panic attack, for both her and for us, was key to handling them - and once we learned to have these horrible feelings without reacting (as much), we could then see the complex and overwhelming OCD that was causing them. We also saw a window of opportunity right before the rage started. Once she learned to communicate this, we found 2 things would work - one was an OT technique of squashing, which we could do at home will firm pressure & pillows. She would ask for this. The second was hanging her upside down or having her stand on her head. This would calm her enough that the panic would resolve more quickly. We also learned some techniques to explain the panic attack to her & then some physical activities that we could do during the panic, as once triggered they would take about 20 minutes to receed. Pretty much, we needed to "wait" for it to stop. We did things like running, punching a bed, yelling, talking about how it felt, using a clock to measure when it would end, etc. After she got really good at this (about 3 months of practice), we were able to learn breathing techniques which we did together - she is too young to do on her own. This helped to reduce the time of the panic attack. Panic attacks are very frightening. The feel both physical and emotional. The rage that can result is astounding if someone is thwarted while in a panic. To imagine how this feels, close your eyes, and imagine that you are watching someone grab your child from the playground & run to the car with them. Now imagine the feeling of panic & rage - you start to scream and run towards them to stop it from happening. But someone - perhaps a policeman - holds you back and refuses to let you go after your child. That is truely how it feels inside a person that is having a panic attack. Like their life depends on an action - but they don't really know what it is or how to stop it. Awful.

We have an LLMD for my husband. I find this question fascinating, but don't think you'll get an absolute answer - so much research is ongoing. Our LLMD thinks that "something" needs to cause the immune system to be vulnerable to PANDAS. This could be an underlying immune deficiency, Lyme, etc. So she thinks we are seeing an illness that is like an onion - once we peel off an outer layer, we may find the underlying challenge beneath also needs to be healed. If we don't find the inner layer, our kids may continue to be susceptible to PANDAS exacerbations. I tend to think this is a good possibility, although I remain open to other answers!

Quick update - we did get the increase to 250 per day. We have been doing this for about 3 weeks now, and so far - she is as consistently close to 100% as I have seen. She even told me tonight that "sometimes I forget I have OCD, mom". That is a pretty amazing thing. I'll keep you all posted, but we are not seeing the breakthrough OCD that normally would start right around this time of month. I'm keeping my fingers crossed - she is not sick either, so I'm sure that helps. She is a very happy kid right now. We'll keep this up for a few months and then see if we can dial it down slowly - but so far, I am feeling very affectionate towards Azithromyacin.

Whoops. Sorry abt that, my box was full! I cleared it and sent u a pm. Let me know if u don't get it.

Charlotte NC? We have decent doctors here - PM me or Suzan or MDmom if you need some names.

Hi Peg – I am rather fascinated by this post – and have been thinking about it for a few days. How do you do ERP for a child that cannot clearly communicate her fears? Honestly, I would be hard pressed to give you any advice, as you are so attuned to your daughter’s needs. You really will be the best person to figure out how to do ERP for your daughter. All I can do is give you some ideas that would work with a verbal child, and then you can try to adapt some to your daughter and see what works. I don’t think you’ll take offense if these are not right for your child – and maybe they will help someone else. I’m not a doc – just a mom, so take it with a grain of salt! I’ve been thinking back to how we’d work with a 3-5 year old, assuming that is where she is developmentally. OCDMom is correct, these are intrusive thoughts – most likely . If she could talk, she would likely tell you something astonishing, like she is afraid the doors will crush her, or that the elevator will fall, or that it will never open – or even something like if you get into an elevator, you mom will die the next day. Or even something really simple, like if I touch the doors, I will throw up”. Intrusive thoughts are similar to what you and I experience when we are anxious about something – but they tend to feel much more intense and “real” to a person with OCD – and they tend to flood into their brains much more often. It really did not matter too much what the thought was – it mattered what she was avoiding or fixating on. When we did ERP for a 3 year old, we did the very simple mantra technique, combined with beating up the worry bug. We told her that everyone has a little worry bug that flies around their heads telling trying to get them to NOT do things and trying to make them worry about things. We explained that we could smack the worry bug just like a mosquito. She used to enjoy helping her dad stomp in into the ground, putting it down the garbage disposal and throwing it out the window. It was very concrete in her mind at that time. We also did a mantra – which was composed of the following 5 steps: 1. Acknowledge that the thought was caused by the worry bug. 2. Say what he is trying to trick me into doing and say that we don’t have to listen to him. 3. State what we want to do. 4. State that we can do this thing no matter what. 5. Say that this is hard, but we can have a great day. Generally, for a 3 year old, this sounded something like this: “That is just the stupid worry bug. He doesn’t want me to go on the playground so he is telling me about germs. I WANT to go on the playground, and I can do anything that I want. I don’t have to listen to the stupid worry bug. I am going to go on the playground, and I am going to have a great day today.” (she LOVED being able to say the word “stupid”, as this was normally not allowed). I often would start this myself and she would listen & cry. Then I would ask her to think it with me. We would repeat it up to 20 times in a matter of 10 minutes or so. She would slowly work up to saying each sentence right after me. If she would sit with me while we said it, or say it herself, she would get a prize from the prize box. If she actually did the thing she wanted to do, she got another prize. But for that age, in many ways, it was her parents doing the work, and her listening – her OCD at age 3 was overwhelming & effected everything that she did – including eating – so we did ERP pretty much all day long. After a few weeks, we would hear her saying something like this herself. I like the “Worry Hill” book, only in its explanation of anxiety and about how it has a natural peak, if you can wait it out. Once you learn about this, you can literally watch the peak coming and then see the downhill move towards more peace. Our daughter peaked at about 15 minutes, if we did not throw fuel on the fire and if she did not do constant compulsions. Her next exacerbation was at age 6, and this no longer worked for her. She knew it was her brain, and it made her really mad to be told that it was not. We spent a lot of time educating her about OCD and how it was a part of her brain, but was a part that was not working quite right & that she could use another part of her brain to get to do what she wanted to do. We called it courage work, and agreed that she would be in control of the speed. We slowly learned how to break any task down into tiny tiny pieces so that there was some part of any task that could be tried without severe anxiety. This was very effective for physical compulsions, but once we got into mental thoughts accompanied by mental rituals, it became much harder. In many ways, the actual thought was not important. This should be helpful to you, since you likely won’t know her exact fear. At this point, I would treat it like an intrusive thought, with a physical compulsion – since you have both avoidance and fixation, both of which are “physical” compulsions. I generally found the easiest thing to do is to make a list of tasks which are related to the obsession first, and try seeing how high these are on her hierarchy. With a verbal child, you can ask them to rank them – this will be more difficult for you as you’ll have to gauge her reaction to the tasks as your ranking. So I would be more cautious about going very slowly and introducing tiny steps for each stage. I assume the elevator fear is the primary one? And it seems like she wants to work on this as well? Some simple steps are: • to look at pictures of elevators • Read stories (you may have to write them!) that include information about elevators • Build yourself an elevator at home, out of 2 refrigerator boxes. Include the exterior buttons, interior buttons, etc. • Make the sliding doors out of cardboard and get someone to help you glide them open & closed as you push her through them. • Sing songs about elevators. • Start with only friendly stories, pictures and songs – later, you can use your judgment as to whether you should introduce very simple concepts that may be frightening her. I usually am surprised at how “minor” the scary things are, and am careful not to introduce higher level frightening things. This may be hard to judge for her, so I would start very low and see if that handles the issue. For example, I would just start by assuming she is scared of the doors, or of the small space – vs. scared she’ll be crushed or that the elevator will fall. She may not even know that is possible (although very unlikely!!!) • Write an elevator song. I have posted about this before – one of our (many) intrusive thoughts was about a robber being somewhere in the house (apparently he was very small, because he could even fit in drawers ). We would sing a song about it, to the tune of “hi ho the derrio”. It went like this (yes, I know, I should write music – hold the compliments please!!!) “There’s a robber in the house, there’s a robber in the house, hi ho the derrio, there’s a robber in the house.” We would sing this verse a few times, then change it to each room of the house “there’s a robber in the bedroom, there’s a robber in the bedroom….” And so on. We would add verses in between, such as “I don’t have to be scared of robbers, I don’t have to be scared of robbers, hi ho the derrio, there’s a robber in the house”. Or we might say “stupid OCD wants me to worry, stupid OCD wants me to worry, hi ho the derrio, stupid OCD is a meany”. Something about the simple familiar tune and the repetition of the worry was very helpful. Again, after about 15 minutes, the anxiety would die down & this would become boring. This is very similar to what is called “loop therapy” for teens and adults, where they write their fear down, record it & then listen to it over and over again, until they are bored with it. We never did loop therapy, we always used tools like reading it together, or singing – more appropriate for her age. There is also a question of just being able to get her past an elevator. The above may help with this, but you may also need a time/distance tool for her. We found these types of tools helpful for a young child who could not understand time and parameters. So if we were trying to move her past something, we would use tools like music, color, drawing and reading. So for example, we might use a fairly short (but very familiar) song to explain time. “When this song is over, we are going to move to the doorway”. This allowed her to prepare for the movement herself – and it changed the ritual, which is the entire concept of ERP. Or we might lay out 8 of those colored play mats that link together to show distance. You can do this two ways – to avoid the elevator, you can have something like this on the ground, and tell her a story about how you will go around those mats and it will be fine. Or you can use this to slowly inch closer to the elevator over time. You may start on the red square (always put in the same order) and then discuss moving to the edge of the red, or moving into the yellow square. We do not have experience with an autistic child, so finding someone that can adapt communication tools to OCD work might be helpful. We did tap into the autistic community when our daughter was ill at 3 & 6, as they seemed to be closer to understanding our issues than anyone else. We learned a ton from those parents and from our OT therapist. I think you have posted before on social stories? I like these a lot – in this situation, I might set up a plan for about 3 months. Each week, try writing a new social story for the step that you think she is ready to take, using a tool for communication, and a reward program. Read her this story 4-5 times a day for a few days before trying that step. Then repeat that step for 3-4 days until it seems boring to her. That was always the sign for our child – boredom with a step meant we could move on to the next one. You may want to have these social stories use a different child at first – if she finds even pictures or stories about elevators scary. But if not, most kids like to hear their own names in a book. Obviously, don’t make the social story about a step that she is not ready for – keep it focused on the step that she is about to take. Ok, so I spent all my time on the elevators. On the objects that she fixates to, my best guess is that there is an obsession attached to them, that you will never truly know. I’ll give a voice to Allie for a second – which will likely be wrong – and in many ways, it does not matter what she is thinking. We’ll just deal with the compulsion, and it will heal the obsession. But so you can have something to think, here are some examples for what she might be thinking – remember that we ALL try to bring meaning to our feelings. “If I hold on tight enough to this doll, then my stomach will not hurt”. “If I let go of this toy, then my mom will fall and get hurt”. “If I can keep everyone from touching this doll, then I will not be yelled at in school”. “If I let anyone take this doll away from me, then I will die”. “If I lose this doll, then the refrigerator will fall on my head”. You can see where these would all be urgent enough to make her refuse to let you have them! So the approach is to deal with the physical compulsion (to hold the toy) with ERP. Again, for Allie, I would likely tell a social story, in which you have another child have the doll, and be scared to let anyone touch it. Then you would come up with your list of baby steps, and build those into each weeks social story. Here are examples that she could do, that should help to break the cycle of OCD that she feels about the specific object. Once you have done 1 object, then you can use that one to teach about future ones. (However, I will give you minor warning not to expect too much - our daughter had over 50 things she could not touch in her room at one point. For the first 15-20 items, there was no learning that translated into the next item. We had to approach them one by one. However, around the 20th item, she broke though, had me put them all in a pile, and dove headfirst into them.) Ways to have a child do ERP for toy that they are obsessed about: have them release the toy onto a plate for 5 seconds, then 10, then 20, then 60, then 2 minutes, etc – no one else touches it. Then have them put on a plate, and move away from it, for 5 seconds, 10, 1 min, 2, etc. Then have them put on a plate & go into another room for 5 sec, 10, 2 min, etc. Then have someone safe be allowed to touch it with one pinkie for 5, 10, etc. Then with their whole hand. Then have that person take the toy into another room for a few seconds at a time, returning it to her each time. You are essentially training her brain that nothing bad will happen. You then reward her for each tiny step (even the 5 seconds) with a hug, praise, m&m’s – whatever works. Each time, remind her of her prior success. Repeat success steps multiple time before moving on to the next step. There are a hundred creative ways to do this. Hide it under a bowl. Play hide & seek with 4 bowls. Have the one toy do a play date with another toy. Generally, for parents (and obviously, you have the best experience about this in all your work with Allie), the question shouldn’t be “how do I fix this situation”, but instead, “how do I take the first tiny step with my child”. Each of these steps may require the courage of a lion, but each step is a move in the right direction.

We use Dr. Branner in Charlotte NC (don't have his info handy, let me know if you need it). He understands what PANDAS is, but are not "pandas docs" - they are GI specialists and will deal with that portion of the issue. We used Branner for our initial endoscope & he is great too - just less of a network of specialists who understand our daughter's care. Sounds like you might need a good network. Our daughter's issues were very similar, and much of the choking feeling was acid reflux triggered by whatever causes the PANDAS. Her's was so severe that she developed 5 ulcers at only 7 years old. We use Prevacid and it has worked wonders on the GI side of things, which I think can be very important in treating the overall disease. We did Celiac testing and then an Endoscope. She did not have damaged villi, thus no Celiac - but did have Ulcers. Good luck with all this - you are clearly touching all bases, and you will find answers. So sorry you are both going through this.

He is a neuro and he diagnoses w clinical neurological exam, review of history, and testing as needed. We do not have titers. He has a lot of experience, but is less aggressive initially. He is a great person, and also works a LOT with autism.

Hi - here is Dr. Storch's info - he has a great team of therapists - a friend of mine is there now wiht her son. Dr. Eric Storch at (727) 767-8230 or email him at estorch@health.usf.edu. I completely understand having tried ERP in the past and it not working. We found that many therapists were not great, or not age appropriate, or not trained well. I don't think that Dr. Storch will take a child unless he evaluates the situation and thinks they can be helped by the program. I have seen very desperate children helped, but it is very individual to the child and situation. Again, not suggesting this instead of medical therapy, but as a tool while you are being treated medically. Wish I could offer more help or suggestions. Either way, I hope you find the right answers for your child. If you want to try a little yourself at home, you could tell her about "brain tricks", where OCD tries to trick us into thinking bad things will happen like choking. You can tell her about other kids, whose OCD tried to trick them about other things. Then you can tell her that you can actually beat up OCD by using your own brain. As a first step, brainstorm about things she could do with food, that would help to beat up OCD - without eating. So for example, can she just touch her tongue to a popsicle, but NOT to eat it. Can she hold a bite in her mouth, then spit it out. Are different foods scarier than others. You give her complete control, but see if there is anything related to food that she would be able to do. It might literally be to look at a picture of a popsicle first or talk about eating it. If you find something tiny that she can do, and she tries then you congratulate her for her bravery. This will not get her eating anytime soon. But she is not eating now, and if she takes even the smallest step in the next few weeks, it might make her life easier. Anyway, this is likely not a great solution for you at this point, but since I got a few notes about this today, figured I'd post anyway. So sorry she is suffering - and hope Dr. Beals can help.

Call Eric storch in Florida or email. He will respond quickly. They are very kind and can do intensive but careful ERP, to help her use other part of her brain to overcome the fear enough to eat. They get pandas too. He may be able to work w you via skype, but many have gone there for a few weeks when emergency like this. Does anyone have his email handy? If not, I will find and come back later, am traveling. So sorry to hear all this. Our daughter in similar situation due to choking, contamination and throw up fears. Even seeing too much food would send her into screaming panic attack at the worst. ERP did NOT cure, but did help her survive without hospital while we found medical help. I am so passionate about this as tool because I think it saved her life. I am not usually so dramatic about this, but your story breaks my heart. Also try liquid motrin in a dropper over 30 minutes, drop by drop if necessary. Then try liquids in another 30. Motrin reduces inflammation, and helps fight fear. We also found throat pain due to acid reflux, prefaced REALLY helps. Again, do one crumb at time if necessary.

I agree with this - we tried not to ever mention food - we'd just have tiny bites of yummy choices in front of her - this was especially effective if she was playing a game or watching TV. By the way, our dauthters stomach issues did coincide exactly with onset of PANDAS. I do think that the amount of acid they have in their stomachs is way out of wack due to something that happens with PANDAS. We now use Prevacid & it is a lifesaver for us. The pill is a meltaway, so she does not have to swallow or eat. It tastes fine. We see an uptick in stomach ache first before we see OCD, then we see PANIC, then respiratory illness. It's a wierd pattern.

Hi , that is how our daughter started at 3. She had an ear infection and was given azithromyacin in the first two weeks of onset. It resolved completely for 3 years. We also did ERP therapy, which has always been a great support tool for us, although never a cure. We think she only has pandas, not lyme as well. What medication is she getting? Do you have a good neuro Lyme doc? If you give her motrin 30 minutes before food, does that help? I am so sorry - the food issues were always the most terrifying to me. How old is your daughter? We were able to do enough liquids and tiny bites of food to get by. I'm glad she has docs that are giving her iv, but will pray you find the right medications soon.

Sigh... yeah, tragedy is the right word. Hopefully, the tide is turning. Kind of stressed today: our local docs are running out of patience with the long-term augmentin XR and want to discontinue, right as we're heading into peak strep season, our son's back at public school (after 3-year absence), and every other member of our family has unexplained elevated ASO. I just don't understand how the medical mind works, I guess. Dear God. That is my biggest fear as well. I hope you have someone else to prescribe. I don't understand the medical mind as well - given your families situation, that would be insane. I'd ask for a script through March, and then look for a back up doc between now and then. Hope this does not happen.

I'm glad he is doing better. Our dd's primary presentation was severe and debilitating OCD. If we had this left as a compulsion, we would say that we were only 50/60% of the way there - this is such a large part of life. Sounds like this has been an OCD symptom for over a year now? I tend to think that children's brains are quite good at learning behaviors - so I fall into the camp that thinks that therapy for kids with severe OCD symptoms is part of the process. If you are not willing to do ERP therapy with him yet, you could spend the next 3-4 weeks simply educating him on what OCD is, explaining how you can retrain your brain to beat OCD up, and builing a heirarchy of OCD fears. This takes a while anyway, but is generally a very low anxiety part of the process. Without proper preparation, ERP would be too hard for most kids anyway. You could start by just reading a few pages of "What to do when your brain gets stuck" each night. If you need ideas about how to break down this fear into a heirarchy of tiny steps that may be less intimidating, feel free to ask - but as starting suggestions - it sounds like he has this same fear with all family members, but it is worst with you? So you can start by working on him with this with a different family member - that alone should reduce some anxiety. You might see if eating vs drinking are different fear levels. You could see if any different foods rank lower. You could suggest thinks like "what is the fear ranking if your dad just licks an apple once, what if he takes one nut & holds in it his mouth but does not chew, what if he puts a fork or spoon with no food on it, what if you are blindfolded while dad takes a bite", etc. Hope you continue to see improvement from the medical treatment alone - if not, getting him ready for some therapy might really help in the long run.

Our Ped put a note on the top of our file, so anyone that opens it, finds her directions. I did not have to ask for this - she assured me (on a bad day) that she would do this, in case she was out of the office on a critical day. This might be something to ask for, for future issues.

As a mom to a contamination OCD child, I have had to give up most of my own germ issues. It often causes me a giant mental struggle - my need to keep her healthy, and my desire not to add to her latent (at this point) fears. Both sides are so real - sometimes when I see her run her hands on the handrail at the mall, I want to scream out loud! This year, her class' "service project" is helping at a preschool - she will teach a class then assist for another 3 hours. I love the idea, and Meg is thrilled. But I just keep thinking about the germ factory that she is about to enter.... Ask me if I will be sure she takes abx that day....

Can I get that list of tests? I need to request a full immune work-up, but if I don't ask for specific tests I don't think I'll get anything useful (as has been my experience so far). Thanks! Sorry for the delay - just seeing this. If you call local allergy centers, and ask if anyone on their team is an immunologist as well as an allergist, you may find someone more knowledgeable. I started by simply telling her that our daughter was sick a lot when younger, but she ended up being receptive to PANDAS. She was recommended by another PANDAS mom, so she'd already been educated. If you can't find this, then you could give this list to your ped and just ask for the tests. It will leave you a little in the dark on interpretation however. Thyroid Panel Thyroid Antibodies CBC with Diff Sed Rate (ESR) Immunoglobulins, Quantitative (IgG) Ceruloplasmin Rheumatoid Factor (RA) ANA - Anti Nuclear Antibody Cold Agglutinins Diptheria Antibody, IgG Cryoglobulin Evaluation IgG Subclass 1, 2, 3, 4 Infuenza A Virus Ab, IgG Influenza B Virus Ab, IgG S. Pneumoniae Serotypes, IgG Tetanus Toxin Ab, IgG ANA Titer & Pattern. we also ran seperately, Celiac Panel, and some vitamin levels. The above is around 11 vials, so you may want to spread it out over a few days.

Hi Emerson. All compulsions are"normal". They can take any form. I know you have struggled to find care on the medical side of things. I hope you find help on that front soon. Do you think your parents would support your doing an ERP program, so you can help yourself find more control during exacerbations? You are such a smart brave and self aware young woman, that I bet you would be able to excel. Have you read any of the books? You could probably learn a lot yourself, but it would be easier with a good therapist. Let me know if you want a reco in your general area.

The things that helped us while seeking medical help were systematic advil every 6 hours even when sleeping, for 4 days, benadryl, and erp. I know u just did an intense erp program. Are u able to keep it up at home? It was very hard in an exacerbations, but we did a program that was essentially a pretty constant, all day effort, so she could survive. Literally erp was our life. I hesitate to even post this, as I know how hard it was to start at a 28' and if he is in upper 30's, may not be possible. Has he been able to do any since he came home? We did feel that it let us hold steady, which was a kind of success at the time. Someday, I hope there is an inpatient erp and ivig program for these kids like yours. My heart goes out to you. Is there any reason he cannot start prednisone now??? I will pray the higher dose ie saving Sammy kicks in soon.

Your family reminds me a lot of Worried Dad's son/family situation. You might want to talk with him a little bit about IVIG & abx dosage. Your posts remind me very much of his, about 18 months ago. I'm sorry to hear that things are so bad right now. I'll be thinking of you both.

Seems odd to me too - I did not love our ENT, but he prescribes 500 Azith the night before surgery with ALL kids. It IS surgery - and all surgeries have germs in them.... Not to mention what may be released from the tissues during surgery, and keeping infection out of the cut.... Told me to consult with Ped on keeping our changing our schedule with preventative abx, which I did and we just kept the course after a consult. We had about 12 days of PERFECT, then an unusually bad flare up that only lasted 8 days and was easily kept under control with an uptick in abx, and addition of Motrin and Benadryl. In the middle of it, she got a bad respiratory thing - we had abx so it never got bad enough for a doc. When we went back to our PANDAS doc recently, and they saw this on the chart, they commented that this is a pretty normal pattern - an illness a few weeks after ENT surgery. Our dd had adnoids only (don't ask, no real clue why, doc did not want to take her tonsils, said they are fine. We don't have constant strep issues, so I let it go). Good luck!

Wow, what a great story. This brought tears to my eyes. Thanks for sharing your story - and hers!