momtotaylor

smartyjones - I just posted under another thread and then saw your post. I wish I could offer some advice! I feel the same way. My daughter is in school for half a day as well and she would NEVER even think about using the potty at school! We, like you, structure the bathroom or she would not use it. We go once in the morning, before we go anywhere in the car and before bed. She will use the potty (if it is clean enough) at someone else's house, but she would NEVER go in a public bathroom. I too am worried about next year when she is in school the whole day.....

dcmom....Julia and Taylor seem to be the same in that they resist going until necessary to avoid the "wetness" feeling. I also insist on going once before school, before any activity and then before she goes to bed. (On a weekend, she is on her own unless we go out somewhere. I do insist that she goes before we get in the car. So there are times that she will sleep all night and then not go to the bathroom until 2:00 PM.) I never thought of setting times throughout the day and giving her a prize! That is actually really a great idea! Thanks. On the hairbrushing issue....she doesn't like it, but I would not say that it is a full blown refusal. She will whine and complain, but in the end we get it done without much issue. Brushing is as far as we can go though. I can count on one hand the number of times that we have worn a ponytail or anything else in her hair over the last year!

Hi Suzan and dcmom....you are right, this is still one of the things that has stayed with us. Even though she is doing well at the moment, her potty rituals still stick. There is definitely nothing in her underwear, but she just feels "wet". She also changes them on occassion at this point. (Not as often though.) Most people can run into the bathroom and be out within a minute. We have come a long way, but after going she sits and drips for about five to ten minutes and wipes a few times. If we are in a rush and I try to hurry her along and wipe for her she gets very upset and says she is not done dripping yet. At first, she would not even wipe herself, but now she does. This has remained with us for over a year! Suzan, were you able to take her for the swab? I will be thinking about you guys....

So far we have lost two teeth. We did not have a problem with either one. However, my daughter had the same issues with the tooth fairy taking her teeth. Both times she wrote a note that read, "Dear Tooth Fairy, please do not take my tooth." She was alright with it when she knew that she could keep her teeth.

Glad to hear you are back and that your son is doing well. You must feel so relieved that that part is over. I have anxiety even thinking about it at this point. Congratulations and good luck. Please keep us posted!

Hi Susan, Please don't beat yourself up about it. I feel like every choice we make as the parents of these children is so carefully thought out. You did what you felt was best and it was the best decision. I think the tooth pulling would ultimately be even worse! My dd5 had some dental work about five months ago now. She had a small cavity. I was very concerned about the nitrous oxide too. I had asked Dr. K at the time and he assured me that it would not be a problem. For us, it wasn't. Our dd was not in the middle of an exacerbation at the time. Was your daughter doing well prior to? Hang in there. Good luck with the birthday..... Jen

That is HUGE news! I am so happy for you all. I consider all of those very big accomplishments. I wish you continued successes!

Hi Eileen, I am glad that you are home and with no complications! Please keep us posted on your progress. I am very interested to hear your experiences.

That is a great question. I was researching pneumonia online the other day because my non-pandas child currently has pneumonia. He was diagnosed on Saturday and the doctor's visit was a whirlwind. I did not get to ask enough questions. I am not sure how she diagnosed him with bacterial pneumonia vs. viral pneumonia. While doing research, I came across the strep pneumonia and I almost fell out of my chair. I am not familiar with it at all. The good news is that my pandas child has not reacted to it at all. I am stuck wondering what, if anything I should do for her! Cute story with the covers in the bed. I too always look out for all of those warning signs. I am glad he was able to jump out of bed!!

I feel your pain! This is our biggest problem at the moment. I take our dd shopping for "comfy clothes". She feels them inside and out and usually rules mostly everything out. I cannot "make" her wear something. We have tried and it turns into a terrible tantrum every time. (A lot of crying an anxiety.) I know exactly how you are feeling. Last year she would not go to school. This year, she will go! I am happy enough that she is going that I have definitely made concessions with clothing on a daily basis. Taylor will not wear socks either. She will not wear pants. I would prefer her to be at school so I pretty much let her pick out what she wants to wear. I have told her teacher to expect some "strange" outfits for the season. If she isn't cold, then I try not to worry about it. She never complains of being cold. Hang in there! I understand. We too have spent so much money on clothing!

Good question! I change their toothbrushes once a month or with every illness. (cold, strep, etc.)

Great idea! I have not read the book yet, but I am going to get it today. I will think about what you just said and try to come up with some ideas. P.S. Beth and Sammy should be on tomorrow between 8:00 and 9:00!! I can't wait.

dcmom, This made me smile since dd8 has issues with her underwear every morning for a while now. We rushed to the store the other day before school when I had finally had enough. You should have seen us running into the store, me saying "OK, focus everyone, we are here for one thing and one thing only" and the kids hollered out "UNDERWEAR!". I bought her a size bigger and they seem to be doing well for her. She laughs at the size for her bottom, they are huge, but somehow they have not bothered her the past 2 days. I guess she prefers baggy panties! Erica, we have gone with full (age appropriate) disclosure too. My dd really was helped knowing there was a reason she could not control herself. Before we learned about PANDAS she's ask why she felt bad or why she was afraid or worried all the time. Now she has something to refer to and we can talk about it easier. Plus, she's always around me, it's practically impossible to hide anything from her anyway! Susan dcmom and susan, We have the same problem with panties and we have had this problem for a long time now. We have purchased every size and shape of underwear imaginable!! For our daughter it is the seam, that runs across her bottom that seems to bother her. She is constantly pulling them down so that it doesn't touch her. She is five and we have her in size 10 underwear. She will only wear one style/brand. Also, she will only wear dresses so that she has easy access to her underwear! The problem is that it is getting cold and she will have to wear leggings. This is going to be a battle because the leggings will now push her underwear up against her body! Erica, We have also told out dd as much as she can understand. Even though she was four when we had our first experience with pandas, she knew that she was not the same as she was before. We felt like she deserved an explaination and we also wanted her to know that she wasn't alone. She likes to hear stories of other kids' issues so that she does not feel so isolated. Her eyes definitely light up when she hears that she isn't the only one.

Today was Kindergarten orientation. I was extremely nervous about it. All of the kids and their parents met at the school and the kids went with their teachers for about a half an hour. Then, we all took a bus ride. I know that it was only 1/2 hour, but it was GREAT! We have come so far since our first episode. There were kids there crying, but not Taylor! I couldn't believe it. She ran right up to her teacher (who she has met before since we had arranged a visit prior to orientation) and did not look back. I almost lost it. I had to hold back my tears. The teacher was impressed because apparently Taylor participated a lot. School starts on Monday and she is so excited and not even a little bit nervous. I am. I am not nervous for her to go because I know she will do great. I am nervous for her to get sick. Sigh. I know that we all feel the same way. I am a little comforted by the fact that the school does have experience with PANDAS as there is one other child there that was in the height of it last year. Crossing my fingers!

Vickie, My daughter also starts kindergarten in a week. I am extremely concerned about it as well. My daughter is really anxious about it too which makes me even more nervous. Obviously, I have been in contact with her teacher and they have met each other. Her teachers seems great and it eases my mind a bit. She asked me if I need to know about any sicknesses in the class. I told her definitely strep, but then I started thinking about other viruses triggering an episode and I started to feel like I was going to have a panic attack. I mean if the teacher has to contact me EVERY TIME a child has a virus, I am sure it will be every day. My head is spinning. She is not on prophylactic antibiotics either. I have heard of doctors within a three hour drive that do support the use of them. Our pediatrician will not prescribe. Viruses seem to be an issue for us as well so I am struggling with what to do. I am certainly willing to drive to see a doctor, but I am not sure if I want to do that at this point. I am just concerned that in November when illnesses are going around and we have another episode, I will be in a panic and scramble. You are not alone....