ajcire

Glad you asked. I'm not understanding this brain barrier stuff either but I thought I was the only one.

I spoke to soon. Last night was right back to it.... but it went much better when I didn't touch him at all and just let him go through it. Called the pediatrician to ask... the nurse said to give it a few weeks... that while it's not common, it's not uncommon either. She tried to assure me I have not done anything permanent here.

Thanks everyone. I definitely found out that waking him was a bad idea... that was when he got so hysterical he was throwing up the second night. The problem was that I didn't realize they were night terrors at first. I assumed he was waking in discomfort like my dd had done... so I was trying to calm him down to offer him tylenol and or a drink or ice pop... big mistake. Tantrums... yes it was about 90 minutes into each night.. like clockwork. I held my breath at the 90 minute mark last night. Wornoutmom, no he has no recollection of it.... In fact he was so proud of himself for not crying at all about his tonsils... he woke up patting himself on the back. I was thinking HUH? He told me that sometimes he wakes up and just takes a sip of water and goes back to sleep.. That is sooooo not what happened. And yes, I imagine the screaming and crying was not helping his throat. I feel a bit more prepared now if it does happen.... to just let it happen so long as he's safe. But gosh, mommas instinct is to wake him up and hug him tight.

Kimballot, thanks for that! The only night he had the prescription pain med was Friday night (he had the surgery friday morning) and I didn't give it to him again because I thought maybe that was what caused it that night and he really didn't want to take it) Tantrums, that is a good idea to break the sleep cycle. Last night was MUCH better. I brought him in my room though but I am doubting that is what made it better. He was funny because he used to beg to sleep with us when this pandas stuff came to a full head and then we got that under control... last night I set him up in my bed and he looked at me and said, "Ok, but why am I sleeping in here?" He flipped and flopped like crazy but no waking, no crying, no moaning. Tonight I am going to put him back in his room. I am hoping there was really something to that 24-48 hour thing... I don't know if I just didn't pay enough attention to the papers we got but the anesthesiologist should really mention this as a possibility so that if it happens parents don't freak and know that there will be an end in sight.

Thank you Dut! And oh how I hope that time frame holds true for us... cause he had this done Friday morning. I will say last night was a little better than the night before.. he was still up a lot but the night before he was so inconsolable he was throwing up. He just was in such a panic and so out of it.

I haven't asked anyone but the ent and you guys yet. I saw Dr. T but it's been a while since I've had a reason to be in touch with him. In every other way I would actually say my son is more easy going and mellow than he has been... The only thing I have seen an increase in but today I think it was less was a throat clearing and he has had a throat clearing tic in the past so I immediately thought that... I immediately thought oh no it's the tic back but my mom and dh think it's just because his throat is irritated... My son says it's because it's irritated this time but not sure he's being honest on that. BUT today I think it was a lot less than yesterday and the day before. His overall mood though is good and he even told me the other night I no longer need to do something that was part of his bedtime ritual... His symptoms in general are mild. His most severe time was almost 2 years ago now and although I felt like I was in crisis with him, I realize now that even that was relatively mild in comparison to what many others go through. I hope I didn't do any permanent damage by doing this. I was so happy we did it when I heard the state of his tonsils... When he was first coming out of the anesthesia though I got this sick feeling in my stomach because of the way he was reacting as he came out of it... it was really upsetting to me to see him that way. They told me it was normal and very common and that my dd who didn't react that way and had such an easy time was the less typical scenerio...

I can't give him ibuprofen I don't think because of bleeding I think they said... only tylenol. The only thing keeping me from totally freaking right now that I have done something awful is that the dr. said he removed really yucky infected tonsils from him.... other than that.. I'm' feeling pretty guilty right now.

He is on antibiotics... was on pre-op, IV during and is still on just for the rest of this week. No pandas symptoms have ramped up.. just these night terrors.

I know many of you on here's kids have had tonsils and adenoids out... My dd had hers out without any issues a few months back... woke up a bit at nights in discomfort but did really amazing. My ds had his out on Friday and since then he is having scary night terrors. At night he looks like he did when he first came out of the anesthesia (this freaked me out when I saw him after the surgery because my dd didn't go through that) I spoke to the ENT today and he said he had only one other parent report a problem like this and then indicated it went on for weeks... I can't do this for weeks. I haven't slept in 3 days. I'm getting worried... I googled and it seems to be it is not as uncommon as my dr. made it sound... Anyone go throught this? How long did it last? Any long term effects?

Does Dr. Cunningham know just how close she is??

Great! Ditto here... My son's were taken out this morning and the dr. said that while his tonsils were small upon just an examination, that upon removal they were shriveled up infected tonsils. My son never had sore throats so I was second guessing myself a lot but he had positive cultures a lot... Of course before doing it the nurse said to my son... just think.. soon you won't keep getting sore throats... he looked at her like she was crazy cause he never had a sore throat... she of course figured that since our reason was recurrent strep that it meant he had. The dr. told me that it's really very common for those small looking tonsils to not really just be small tonsils but rather to be infected squished up tonsils.

Thank you! We went through it with my daughter (she is my hopefully non pandas child who was getting strep a LOT with classic sore throat/fever symptoms and had chronic tummyaches... and behaviors that I was getting a bit concerned about just because I know too much about pandas now.) and she had a quick easy recovery... ate chicken nuggets for dinner the same day she had the surgery... and hasn't had her chronic tummyaches since! I hope hope hope that it goes even just half as smoothly as it did for my daughter. My son is a different personality and I know it won't go quite as smooth though.. it helps that he saw her go through it quick and easy. He wants ice pops! I am anxious to see what the dr. says about his adenoids in the end... I have always been told by doctors that he "looks like an allergy kid" because of his dark circles under his eyes... I was then told by someone that could be connected to the adenoids.... the ENT didn't really say one way or another when I took him for a consult. He is not a kid who gets sick a lot.... (well unless you count Pandas symptoms which obviously count but I mean other illnesses). It was an easier decision to do it on my daughter because of the constant sore throats and deep down I believed it was related to her tummyaches. They had suggested I do hers before my son's because maybe she was the one giving it to him so much.. but the problem of not really knowing when he has it because he doesn't get the classic symptoms was starting to make me crazy. I totally know they can still get strep although my pediatrician told me with my daughter that she figures she will hardly see me now..I hope she's right.... so far since March, no strep despite my being crazy and having her checked 2 times for it. Interestingly enough, my peds wh admit to not knowing much about pandas told me that they think it's a smart move. One dr. there told me that as a dr. she doesn't know the answer as to if I should or shouldn't for my son (she definitely thought it I needed to with my daughter) but that as a mother not just a doctor she would do it if it was her son because she felt that if there was anything that she thought might help her child she would do it.

I'm getting my son's out on Friday. He has never even had a sore throat. He has had many positive cultures. I just decided better to do it now than to look back and wish I did. It's an easier recovery now to than if we decided to later.

I checked Itunes.. they do have episodes. When I looked the other day this one wasn't up yet. It's only $1.99 for the episodes though.

The IV antibiotic during it is standard. My son is getting his done on the 25th too. My non pandas daughter had hers out though and there was automatically IV antibiotics.

Ah yes.... I meant prophylactic dose.. I misunderstood the question. That makes sense... and yes my son was on 250mg twice a week when I had him on it prophylactically... I don't think I ever had him on a higher dose than 250 daily though even when not prophylactic.... I wonder if I would have seen something from a higher dose or not but he's just so mild that I hate to bombard him with medicine for long periods of time and high doses. I am grateful he is mild but sometimes I almost think if he was just a little less mild I would not second guess and would go ahead and treat more aggressively.. I think that's true of the prophylactic doses, but not of the "high dose" abx some of us are giving our kids. For example, my DS (any many others here) is taking 2,000 mg. of Augmentin XR daily; a prophylactic dose would be more along the lines of 500 mg. per day. It's my impression that, in general, azith doses are provided in lower numbers, but I think that something like 500 mg. daily is considered "high dose" while some families are doing 250 mg. every two or three days as a prophylactic measure. Can anyone else further clarify this? Am I way off base?

I was under the impression that my child was on long term antibiotics to give his body a chance to heal without having to fight off new strep... so basically it was to prevent him from getting new strep infections. That was what I took out of it from the pandas doctor I saw..

I thought my channel I was searching on said discovery health.. now I think it said discovery hd.. oh well.. thinking we just don't get it with our cablevision... It's on Discovery Health channel (different than Discovery channel).

Ok... I give up. I get the channel.. I think.. I know I have watched mystery diagnosis... but when I click on that channel and look it's cash cab on all night... HUH? Did Cablevision drop that when it started having issues???

Great article!

I would definitely not assume that just because they aren't here that they are cured. I think it was more just that nobody on here currently could really select cured unless they have gone a very long time after IVIG with having been re-exposed to strep without having any symptoms.

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I haven't done ivig and am not considering it for my child but if I did, I don't think I would be able to put a percent on how much better or worse from it he was because he goes through times when he is better than others... so if it takes months to see results I would have no way of knowing if it was the IVIG or him waxing and waning due to whatever causes the waxing and waning.

Chances are though those cultures were negative because she didn't have strep. I guess the only way for you to have any reason to believe otherwise would if you cultured her at the same time as a positive rapid test.

I would think the culture is more reliable than the rapid.... my kids usually show neg. on the rapid and positive on the culture.