thereishope

I'm very surprised about the no to antibiotics as well. Can Dr T help you with that? He really needs to be on prophylactic antibiotics right now. If his nose is dry, try to get to put a topical antibiotic on it to avoid cracks and infection.

Those kind of ear infections are the worst. Someone did post here once that ear infections can be strep. Your doctor may look at you like you're crazy, but if she gets a perforated ear drum again and it leaks, they can swab the leaking fluid to see if it's strep.

I think it's going to be hard to get insurance companies to cover things like IVIG for PANDAS until it is more universally accepted by the medical community. Insurance companies do not want to haul out money and IVIG is expensive. They'll continue to ignore it as a dx as long as they can. Some have had success getting IVIG approved with insurance by using accepted codes that are not "PANDAS". So one can always try that route for now. Hopefully an IVIG study will find it's way to happening again. I think that would be a huge help to the movement of trying to get PANDAS recognized as a disorder and get treatments, like IVIG, recognized as a needed treatment. Unfortunately, I have no ideas of how to help with getting IVIG accepted as a treatment for PANDAS by insurance companies. I am also still fighting just to get things like proph/long term abx accepted by my local docs. So many hurdles we, as a community, still have to jump through.

So, on Monday it would be 9 days on Ibuprofen. If it was me, I'd keep giving it. As always, try to space it out as much as you can. It's an awful feeling to know that your child is sick but you don't know what it is. I think all of have heard one too many times "Well, it's probably just a virus. Let it run its course". When you go on Monday, just innocently ask them if it could be Walking Pneumonia (aka Mycroplasma P). Is she home schooled or go to school? Ask her if others have a cough. If you inquire about a throat infection and they swab her, remind them she is on antibiotics and the chance of a false negative is there. Do they understand that she has PANDAS? If you explain how her behaviors have changed since changing abx, do you think they will listen? There is always a chance it only a viurs, but a virus shouldn't take more than a week or two to run its course. How long was she on the high dose Augmentin for?

I don't know any connection to what Ibuprofen might have with white blood count, if any. So, I can't give any advice on that.How long will she been on if you keep giving her Ibuprofen until Monday? How often are you giving it? What is with these kids and that cough! I feel like I'm becoming a broken record, but with a fever and cough, I'd go to the dr. Have him/her listen to her chest and if you have to, outright ask about the possibility of Mycroplasma Pneumonia. What doesn't make sense about the possibility of Mycro P is that the Augmentin she was on wouldn't have kept Mycro P at bay when she was on it and you say the cough came on after stopping the Augmentin like it was a cause and effect. Hm... Still, it doesn't hurt to rule it out, even through only a clinical observation. My ped said he's seeing a lot of it right now. How high is her fever?

So, it's like the abx is drawing out the bacteria and that's why symptoms are surfacing after starting it. So, if you look at it from that perspective, I would think it means the meds are working and now his body can start fighting it!

I just clicked on the one I have in my favorites and it worked.. http://www.facebook.com/pages/Pepsi-Refres...82.309749594..1 Otherwise, when I went to fan pages, I just typed Pepsi Refresh and the PANDAS one was an option.

Glad you're getting things sorted out. Is Dr T aware of the hacking cough? Are you taking him to a ped to listen to his chest. I'm starting to get "Mycroplasma P" paranoid about all these kids!

If your ped says he'll give abx depending on results of a strep test, remind him that there is a possibility of a false neagative and you cannot get the "true results" of a strep test until 3 weeks after finishing abx.

Is your ped the one who mentioned the PANDAS dx? I ask since that may make it easier to convince him to continue. You can throw the phrase " PANDAS is like RF of the brain. Prophylactic abx are used for Rheumatic Fever". The exposure to strep you child had can also be contributing to an upswing in behaviors. Double whammy...going off abx and exposure.

Here' s the thread that smartyjones referred to for an easier way to chart behaviors. http://www.latitudes.org/forums/index.php?...ic=6685&hl= I did the old school method and kept a journal.

Found it. I'll post it. Also, all I do is copy and paste what's in my browser when I'm on the page I want to quote.

Can you break down for us what meds she is taking and for how long she has been on them? If you see a big worsening of symtoms for days w/ no improvement resurfacing, I'd probably try to change the meds or go in for a strep test while reminding your doctor of the possibility of a false negative because she is currently taking abx. When you see a worsening w/o infection, you have to look at it from a lot of angles. Like already mentioned, can she have a virus, allergies, high stress (esp during the early stages of recovery), is anyone else in the family sick? You can go ahead and get family members tested for strep again since some kids do react full force to exposure only. I'll have to google "petechiae". I haven't heard of that before.

I feel for him with that cough and fear of throwing up. It's like one of those when you feel like you can't take a deep enough breath. After awhile his abdomen might hurt from the forceful movement too. Now don't do this w/o talking to a dr, but do you think cough medicine would help? I am usually anti-cough med, but with Mycro P, people cough because (oh, can't think of the technical term), something paralyzes and can't move, that causes the cough. Again, I'm usually anti cough meds, but if his fear of throwing up is increasing, talk to his doctor about the possibility. Who's his dr? Dr T. Please just talk to his doctor first before giving anything.

I'm glad she's doing better!

I'll post it on the PANDAS groups on fb.

I posted a response on the thread in the link listed to ensure she would read it instead of posting it here.

Hi. I'm from the PANDAS forum. First, let me say that when I read your son's story, I admit, I look at it from the PANDAS point of view. Sometimes Ican read anyone story and see PANDAS lingering in it. When my son was 5, his behavior started to change. This all coincided with him starting kindergarten so I could find a bunch of excuses for why these odd things were happening. But there started to be more and more problems.At the ped's office for his 5 year check up, he behaved horribly ad I todl everything that had been going on. She said she read about PANDAS before and would run a strep test just to be sure. My son had no sore throat, no fever,nothing. rapid came back negative. But two days later, I got a phone call, the culture they also ran came up +. He did in fact have strep. That spiralled into going to see a neurologist and learning everything I could about this disorder. So, the first thing I have to say is to get your son a strep test. If the rapid comes back negative, make sure they run a culture. If the culture comes back negative, then you can have blood tests done to check for past infection. Just because your child has no symptoms of strep, it doesn't mean they do not have it. Do not wait until April. Go to your pediatrician and get a strep test. So, back to your son's symptoms.I'm going to compare them to my son's. My son had separation anxiety, would let out a scream for no reason out of nowhere, did raspberries at us and at stangers if they tried to give him any attention. He had sensory problems too. You couldn't touch his head, or touch is shoulders a certain way, etc.My son also had a lot of OCD. The things with OCD is that a lot of people don't really understand it or realize their child is exhibiting it. My son did have the textbook dirt, germ, contamination fear with his first exacerbation, but also had ore subtle ones. here is a list of OCD symtpoms as seen by parents on the PANDAS forum... http://www.latitudes.org/forums/index.php?...ic=6153&hl= What I would like to ask is if these chages occurred out of no where, progressed very quickly or have been simmering since you can remember. Has he been sick recently? What vaccines did he get at his last appt and when was that? Did these changes coincide with anything? By any chance is there a family history of Rheumatic Fever or Chorea? I'm also going to post a PANDAS Fact Sheet for you to read.. http://www.latitudes.org/forums/index.php?showtopic=6265 Please, ask us any questions you want. Hopefully the answers to those questions I asked will help me and otehrs give you an opinion on PANDAS. Also,you can use you same user name for the PANDAS board so fee free to visit both the TS and PANDAS forums.

My son never had tics, but many say tics are the hardest symptoms to get rid of. I think with my son, reasoning first resurfaced, then I slowly saw other things fade away. I think it's good to keep a journal of what went on during the day. There's times a symptom disappears and you don't even realize it until you reread through your journal and remember he had it in the first place.

Michael (from Tampa) said he had a cough too I think shortly after starting meds for mycroplasma. Do you think the meds are making the bacteria come more to the "surface" and making some symptoms appear? Weird.

I like the new one better. Was he laughing right before the picture was taken? He looks like he's smiling a little. He looks so cute! I do like it! If you message me your email, I can email you the image. I only worked on it for maybe 2 minutes so if you hate it, it won't hurt my feelings. I figured if it was something that was a "maybe", I'd put more effort into it.

I quickly threw together an idea but I can't figure out how to post it on here! It's not a photo so we could change anything on it. I do have it saved as a jpeg. Let me brainstorm how I can post it.

Found it... http://www.facebook.com/#!/pages/Pepsi...82.309749594..1 Good job on the photo but I think it's needs a little tweeking. It's gonna be hard to do it w/ keeping the child's privacy. Let me think on it and I'll come back w/ some suggestions.

I can't find it. Is it a group, fan page, or cause? Can you post a link to it?

Try to see if he'll let you do the photo.. I think it's hard to sum it up in a "clip art" picture. I think a photo of a child looking the way you described, would draw the attention of people who are just skimming through the options to vote on. p.s. I'm not crazy about the bear idea either. I was just trying to think of a stock photo:)