ajcire

I am sure this question has been asked but I didn't do a search through. I am curious if most of you with children with pandas do or do not get them the flu shot. I am so torn on this.. really second guessing myself. I have 3 kids and have only gotten it for my child who has asthma because I really feel with him I need to. I am so torn on what to do about my other 2 especially my one ds who has pandas. If for some children the flu can cause an exacerbation of symptoms than which is riskier, the vaccine or the flu? I know it's a personal decision and I thought I was at piece with my decision not to but now I am second guessing it. I had told myself that if something ever goes wrong with this decision I will at least know it was what I thought was best at the time... but now I'm not so sure...

That's a great idea to ask my ped next time I am there to show me. I think he will be willing to.. I just think my kids are extremely cooperative for him but won't be for me. Ok, silly question... when your order them it comes with everything you need right? it's not just the strips and then I have to order the stuff to test it separate or anything? Can you link me directly to what you got on amazon?

My pediatrician believes in pandas and I have only seen a specialist once who had put my ds on prophylactic antibiotics and he told me that he understood my dilemna but he wasn't comfortable with the antibiotic use. He didn't lecture me though and respected my decision at the time to continue it. I stopped after a year because I too became uncomfortable with how uncomfortable my trusted pediatrician was with it.

Whenever my ds has had pink eye he has also had strep.. when I go in to the peds with pink eye they now automatically swab him. They said pink eye can result from untreated strep.

Thanks. Yeah it's a real problem when they don't get fever or sore throats to clue me in more. My son had a headache with this last bout and was just "off". I knew enough to ask the dr to check for strep despite his lack of strep symptoms. Sigh. I have no idea how long he might have had it for though.... He was starting to have sleep issues though several days before. I guess that in hindsight that's when I should have had him tested for it.

Thanks! I am mostly afraid I will waste them not doing them right... not sure how well I will get that swab...gain.. and my littlest got his first positive test this month too 2/3 of my kids don't have tonsils and not sure if that will make it harder or not?

Thanks... lol, I like the other price better but not sure I will find them anywhere for the 28.00. Of course since it cost me $25.00 each time I go in to the dr. I guess it's a good deal. 3 kids.. 2 with strep, 1 didn't have it but I still had her checked just cost me $75.00 not including the antibiotics... and on top of it I have concerns that it might not be gone. Sigh. Guess the price on amazon isn't so bad afterall.

Thank you! Have you found them to be accurate? Have you gotten positives on them that were accurate? I just checked and for now the are out of stock there. Will look around for those ones.

My pediatrician told me off the record that he would never ever suggest this to anyone but in my case he (stressing off the record) thought I might want to look into home strep tests. He is willing to test them whenever I am concerned as he has seen first hand that I am usually pretty on about when they have strep... but they don't get sore throats, already had tonsils out and it's not practical for me to keep doing this with multiple kids. Can anyone tell me how difficult they are to use and where they ordered them from?

I can't dislike the book just because at age 18 he got better.. it's the story written from the perspective they had on what happened. I can't really find fault with it. My ds is very mild... things have come and gone with no real logical explanation.. and some things crop back up with no good explanation.. It definitely definitely made me think of pandas when I read it.

Interesting. My ds had a very bad reaction after having his tonsils out.. they said it was due to the anesthesia. It was not a pandas flare he had... and it lasted a full week but the ped had told me it could have lasted much longer... but the ENT acted like he had never seen this type of reaction to it before. My daughter (not pandas) had no reaction to it.

Fixit.. ah yes.. the example I was given was... if your kid is wearing a red shirt and falls out of a tree and breaks his arm... it doesn't mean it was because he was wearing a red shirt...

I have read on here about math often. It's interesting to me because math is my son's biggest strength even at his worst with pandas.

My son is mild. I don't know if the T/A helped or not. His symptoms were mild prior and are mild now. The pediatrician who didn't really believe in the pandas told me that as a mom if I did believe it was pandas that she would suggest I get his tonsils out. The ENT was very willing to learn about pandas. He had not been familiar with it but was taking my non pandas daughters tonsils out due to clear cut too much strep... she met the guidelines. When I asked about my son he took out his laptop, googled pandas and told me he would be very willing to remove my son's tonsils based on what he was reading and what I was telling him. He gave me antibiotics for a week prior, gave intravenous during (but he always does.. not just for pandas) and for a week after.

When my ds was on the liquid zithromax daily the pharmacist gave it to me the months supply broken down into the amount for 10 days at a time in powder form and told me the amount of distilled water to add to it. I would talk to the pharmacist if you need it for a prolonged period of time.

We had my pandas ds and my non pandas dd's tonsils out almost 2 years ago and we have not had a positive strep culture since. My dd had strep consantly prior... the ENT said that upon looking both their tonsils were not enlarged and looked ok.. but after he described them as others have said... said they were an infected mess. he said often the infected ones look small but in reality are just squished infected messes.

It sounds like it's more than tics for these kids. If the one parent said he knows his daughter mannerisms... sounds like he's seeing some other differences in her.

Yes another whose pandas ds gets bright red ears...no idea if they are hot and he's never described them that way. Sometimes it is when he has a fever and other times it just is. I haven't really seen a connection to things he eats but I admit I haven't been tracking it. He also has the deep purple rings under his eyes and the pediatrician and the eye doctor always ask if he is an allergy kid which to the best of my knowledge he has none.

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The anesthesia affected my pandas ds when he had his tonsils out...but not his tics (his tics are mild and I don't remember them being any worse after). Instead he was just not himself, pretty much had no emotions for a week... not sad,not happy.. just kinda there. It was heartbreaking... the bigger effect though was extreme night terrors and no appetite. This all ended exactly a week after the surgery. The doctors told me it was an affect of the anestheisa... I have no way of knowing if it was because of the pandas or if he would have reacted that way anyway. My non pandas dd had her tonsils out and the anesthesia did not affect her like that.

Did the night terrors stop?

Regarding the night terrors... my son who is very mild pandas.... had SEVERE night terrors for exactly one week after his surgery. The doctors said it was the anesthesia. It was really scary. He would wake up screaming and hysterical but if you tried to console him he would freak out more.. there was just nothing to do but wait it out each night when he woke up... and they couldn't tell me how long this affect from the anesthesia would last.. very scary. He had never had night terrors before and never had them again after that... Also regarding the pain meds, with both my kids the dr. discouraged me from using the pain meds unless they needed it..said to stick with tylenol unless they needed more because the prescription pain meds have other yucky side effects for the kids. I wouldn't force pain meds unless he needs them.

One other thing..From what I understand, Lauren didn't just have one symptom... it's just the puzzle pieces weren't putting them together connecting them as symptoms.

My very mild pandas ds had an awful reaction to the anesthesia. It scared the life out of me because the dr. told me it could last months.. thankfully it lasted exactly one week. He didn't have pandas symptoms but he had AWFUL night terrors, no appetite (not because it hurt to eat from the surgery), and pretty much no personality.. he was just there... It was not like him at all and exactly one week after the surgery it was like a switch was pushed and he was back to himself without the night terrors, and was eating and full of life again. I asked what he was given and was told that the anesthesia they used was fentanyl/propofol. My daughter had the same procedure with absolutely no reaction to it. If my son had gone first though I would have been terrified to have my daughter have that. Her's was first so I was caught off guard by my son's reaction.

Ah, I don't know the answer to that. The ENT had not scoped my ds so his account of small tonsils that loooked ok was just based upon looking down his throat. You might be right although I would be surprised than that they wouldn't always scope them before removing them. My ds did have positive strep cultures though despite no sore throats/fevers including having the positive culture once when he had pink eye so we did have some hints that there might have been infections. I sometimes wonder if maybe he had sore throats and just had a high pain tolerance to it and never told us. I don't know... It's never an easy decision. My son had a reaction to the anesthesia that for a few days I was really angry with myself for doing this but thankfully one week after the anesthesia affect just disappeared and he was fine.... Oh and since my dd and my ds had their tonsils out we have not had strep in the house at all.. it's been 1 1/2 years now. We don't know who was getting it first.. ds having it and my not knowing it and my dd getting it or dd having it and giving it to ds. I do believe he is affected by other things, any time his system is run down.. so exhaustion, over excitement, exposure to other illnesses... but it presents mild. I actually think my decision to do it would have been easier if he had been more severe.. I struggle with what do you do for a kid whose so mild that anything of the options don't feel right... My son is so mild that I have now chosen a wait and see approach to everything. I had him on one year of antibiotics and have had him off now for a few years and had his tonsils/adenoids out.. that has been all I have done. I don't see any big differences from when he was on the antibiotics.. we seem to have waxing and waning with time more than antibiotics. Is he quirky? yes... would other mom's of pandas kids say he's not 100%, yes.... does anyone other than my dh and I and my parents who get it notice anything with him.. no.... do I worry all the time about him.. yes....