browneyesmom

Ooo... really? We got some granola bars this afternoon & they will be in the car... thanks for the tip, Tami! Both my husband and my ex will be there also... might have to send out one of them for food! lol I hope not too long as we do have a flight home in the afternoon. I now have 3 pages double-spaced of questions for him.

Yes, you most certainly could have a false negative. They have to do a good swab of your upper palate, at the back of your throat to hope to get an accurate result on a strep rapid or culture. How are you feeling now that you've been on the meds a few days? Any better? How does your throat look now?

We have our first appt with Dr. B Wednesday morning. I have been working on a list of questions the last few days - it's 2 pages long! Yikes! Any last minute input from anyone about anything I want to be sure I don't forget? Thanks everyone... you've been such a help to us!

Welcome TexasDad... glad you found us, but sorry it's under these conditions. I'm off to get some rest... leaving in the am to see Dr. B, but wanted to welcome you.... looking forward to getting to know you and I hope your son continues to improve!

hahaha Sarah... we can dream! Thanks for the input, Kim; I appreciate it a lot!! I am making a list of questions to bring with us and will have a notebook with me to take notes. That is an excellent idea and I have also found that it helps me in doctor appts to do this & review later. I have not been copying the scripts for my records though... great idea!!

lol... it can be VERY confusing... if only there were more docs who were experts - now, wouldn't that be awesome! I should rephrase that to say, "WHEN there are more... won't that be awesome"... I do believe it will happen, in time. So, Sarah, which doc office are you calling? Dr. B or Dr. K? I'll certainly post after we get home! tpotter, do you see Dr. B? I've been wondering what to anticipate, but I guess every situation is different, depending on the child. She does have a deficiency of IgA & IgG; however, she's been so severely ill (as most of our kids here have, alas), including the several ER trips & hospital admission, that I wonder how that might factor into his treatment plan for her. Does anyone know if he does PEX?

Bump... we'll be there this Wednesday morning... & so hoping this will be a positive turning point for her... anyone else?

Yes, a first degree family member with a penicillin allergy does increase the odds of an allergy to penicillin or one in the family of those. I too, would suspect those meds are involved in this study.

Hi Anne, sorry that I do not have any info for you as I have not seen her. We have our first appt with Dr. B this coming Weds. I did want to confirm though... is Dr. Latimer accepting new patients again??? If so, I'm calling!!! I hope your appointment goes well and you get the answers you need.

My daughter is about the same... much improved from before the Christmas hospitalization, but a long way to go still. We see Dr. B for first visit this coming Wednesday. I choose pediatrician... if you are not getting satisfaction there with that one, find a new one who will work with you. Three PANDAS children is just too hard to even think about doing without the support of a pediatrician on board with this. I hope things improve quickly.

I'm so sorry, Peg... prayers starting now! Hugs

Yes, it's good to have the markers, but honestly, when I see behavior that looks like PANDAS, that's what leads me to get out my penlight and take a look! Last time she got the strawberry tongue of scarlet fever... SHE brought it to MY attention... oh, what the kids have to know at 11 years of age with this!

Sooooo sorry you are having such a rough evening... I have so been there, so many times and it is horrible - we get shell-shocked. Please take good care of yourself... I hope he is resting now and you can get some rest yourself. Glider rocker!!!! I still have mine from when DD11 was born! Thanks for posting that suggestion! There are times that I've been able to rock her in the recliner and it does seem to help soothe her. Take care, Denise

It could also be that antibiotic is simply not effective for him and he needs a different one. If you do not see improvement by morning, I would take him back in to the doctor. At the very least, it will help set your mind at ease. Aw, I know it's no fun when they look at us like we have three heads, but really... at some point, they are going to have to open their minds a crack and look into it, yes? If croup and he wakes having trouble breathing... you probably already know this, but either bring him into a small bathroom, shut the door, turn on the shower and steam up the room while you comfort him on your lap OR take him out into the cold night air - EITHER will help open up his airway and ease his breathing. I hope you all get some good rest this evening and things look better tomorrow... please update when you can. ♥

Nope Dawn, I don't think that's so off the radar. Frankly, I'm suspicious what the deal is too and why they are releasing this right now.

GREAT responses! Thank you all so much for the information! I'm too exhausted to read tonight, but will try to look over this more tomorrow. I also need to prepare for our trip to see Dr. B this coming Wednesday! She recently mentioned that she thinks sodium might be a problem for her in making her feel worse. Hyper-natremia has some interesting coinciding symptoms, so I'm looking at that as well as a possibly source of exacerbation. I rarely ever use salt in cooking, but she goes out to eat or has prepared foods usually with my ex (her daddy). Given her hypoglycemia issues, this could become rather complicated as we have to limit her carbs & simple sugar intake, so I'm going to have to do quite a bit of research on this. I also offered to her dad that if this becomes too complicated with her diet, that I'd be happy to prepare her foods to send with her on his visitation times. When I asked about Gluten free, I didn't realize there would be posts about Casien free. VERY interestingly, she had a dairy intolerance/allergy as a newborn - horrible painful colic, poor little babe. I removed ALL dairy from my diet so I could continue nursing her and she did great then - was a very happy baby/toddler. One sure has to wonder...

We have issues here with changing from clothing to pajamas and back to clothing in the morning - in part, there is the worry for her about 'accidents', which she insists occur more when she is bathing, brushing her teeth or changing her clothes. My solution was to just purchase soft leggings and long-sleeve t-shirts so at least she is more comfortable.

Oh, wanted to note that a doc told us that if the swab is not done properly... makes no difference if it's positive or negative... may show false negative because of a poor swab - including cultures - said those are about 95% accurate.

Gracious, Emerson! I'm sure that hurts! I'm so glad you saw your pediatrician and got some resolution to this - thanks for posting the info. My DD11 often gets the red petechiae on her upper palate, just above her uvula. She has not tonsils anymore, but when I see that, I always know strep is still there. I hope you feel better soon!

Great thread - thanks for sharing this information!

... and, just wanted to add that it IS helpful to know other families are facing similar issues, so thank you for sharing your experience! One, it gives me a little more credibility when I report to docs that other PANDAS parents are seeing similar things and two, hopefully, we can help each other find solutions together... this board has been such a blessing to me on so many levels!

Thanks Lisa... and hugs back to you - I've been following your posts as well. ♥ I *might* have a little insight as to the "why" part. She told me that she has noticed that she has more accidents when she is either bathing or brushing her teeth. Honestly, she had 3 in the tub recently and I know it really upset her and this has clearly been more of a worry for her since then. However, I think more of it may simply be that she is distracted by doing something else and not so aware of the urgency. Flip side is sometimes she presents as having urgency and can't go! Poor dears... has to be a flippin' nightmare for them to feel they can't trust their own bodies! I don't know if this helps anyone, but here are some things I'm trying... freshening toothbrushes - don't have any actual toothpaste, but at least she brushes a little - better than nothing got a spinbrush toothbrush... she's more inclined to use it b/c it is fun... although, last night, had to break out one of the dry ones for her encouraged her to not worry about the urinary accidents in the shower/tub... that it will just go down the drain and I can clean it - seemed to diminish her worry a little - enough to get her back in there after 2 days of refusal. I keep bleach spray on hand, so it really is not a big issue to me and I don't want her to fear it... we'll just deal with it if it happens. I'm planning to get some of the bath wipes sold in stores like Wal-mart for those who are unable to get into a tub or shower and have them as a backup - I have not told her this I keep "goodnights" on hand for her and just offer if she wants those or the underpants - I let her choose I've bathed her outside the tub, while she sat on the toilet... yes, I know it sounds desperate, but I assume most here who have been there will 'get it' as to why I did so

It's very hard to find them, especially in winter! I have to get them sometimes for our Worship Dance group, for both myself and DD11. Check Target, Wal-mart and online to get a few to have on-hand.

No question! She holds it together as well as she can at school (and with her dad for visitation, as well as other places), but falls apart at home. She recently told me that she realized she was trying to pretend to be happy and that nothing is wrong and control everything because she does not want people to worry about her but that when she is in her normal environment, it all just comes out. I asked what she meant by her normal environment and what that looks like. Her response was, "When I'm with you." This is basically what her psychologist told me he thought she was doing & why she does not have the more severe episodes with her dad or at school.

Thanks Vickie! We *might* qualify... I am pressed for time right now, but emailed for more info.