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....

From what I understand from Dr. K, I don't think there is really a "time" in which the steroid burst will last. I believe that every child is different. Improvement could last for weeks or for months. If there is a positive reaction to the steroid burst along with all of the other pandas characteristics then, from what I understand, IVIG is definitely an option. I know that there are many other parents on the board who are more knowledgable in this area, but that is my understanding. I am glad to hear that there has been improvement with your dd! Jen

Asaxon, I did consult with Dr. K via phone. He was very helpful and was able to give me the dosage. I too have tried our doctors and they have yet to prescribe the steroid burst for the same reasons as you are explaining. It is very frusterating! I do feel your frusteration. I have thought about just doing it myself as you descibe as I do have some in the medicine cabinet from previous rashes, croup, etc. The dosage for the burst is so high that I just don't feel comfortable doing it without being under the supervision of a doctor. My daughter (age 5) had croup a few months ago. She was put on a steroid; however, not as high of a dose as the burst. (I really was unfamiliar with the burst at the time.) Even though our daughter was so sick, my husband and I both saw dramatic changes in her behavior while on the steroid. She was better than she had been in months! (She also had a steroid administered via breathing treatment in the hospital.) I am not sure if this is a fluke or not given that it was not administered the way a typical steroid burst would be administered. (it was a much lower dosage and not for as many days) Hang in there. I still have had no luck with getting one of our doctors to prescribe the burst. It just so happens that our kids are "rashy" kids...any chance your daughter is? Even though the dosage is much different, maybe next time your daughter has a rash, go to the doctor and let them know that she is very itchy, etc. Even though you would not see the effect of a true steroid burst, maybe you will see a difference as we did? I know it is a long shot..but maybe just keep it in mind. Best of luck! Jen

Does he tell you what his thought encompass? My son has the "obvious" OCD of repeating questions over and over even though the answer is obvious, has many eating rituals, and he does other tings that I can't understand why. I wonder if some is still dirt oriented. I thought that had passed w/ the first PANDAS episode, but perhaps some resurfaced. Anyway, those are easier to eliminate. However, I do think he has OCD oriented thoughts as well. He'll stare off into space and when I look into his eyes I feel like I can sense the thoughts. If that makes sense. Like maybe he's do a checklist in his head, he feels he needs to be thinking something specific, etc? I really don't know, he won't tell me what he's thinking. But right now, I'm at the stage of dealing with the "physical" OCD I can see. I will deal w/ the thoughts later. I will definitely let you know if I come across info on it. Have you also visted forums specfically for OCD to learn from adults who have had that issue and have learned to overcome it? One final thing, the other day he watched a tv show that gave him bad thoughts before going to bed. He said that every time he tried to make it stopped, it showed him the pictures again. I was telling him to yell at it and tell it to stop. He said when he did, this ting would appear again. He was even envisioning it choking him. He began to personify these thoughts. It was the first time he had done that. I felt so bad for him. He had me yell at the thing in his head and tell it to stop. Then he would pause and say "Mommy, it's doing it more often now". Like you said, the more he tried to make the thoughts stop, these thoughts fed off of it and came back stronger.Finally and a couple hours, he fell asleep. I still wonder if OCD took advantage of that show and did that to him. Luckily, he hasn't brought it up again. Vickie, My daughter was having some of the same problems as your son. She would tell us that there was a bad guy in her head and she had to get him out. She would say that he would make her think about bad things and also tell her to say bad words. This started about 3-5 days after her initial episode. We also have had the repetitive questions with obvious answers. We brought this (the guy in her head) up to her psychologist who gave us ideas on how to help her through this. Basically she needed to know that she was the "boss" of her body and not this thing in her head. First, the psychologist had us name the "bad guy". (Our daughter named him slimey.) Then, we drew a picture of him so that she would know that we believed her and also we were to understand that he was real. After that, each time slimey would tell her something, she would have to boss him back out loud. I would then pretend that I was slimey and melt or fade away, etc. It was exhausting, but somehow it worked after about a week. She still brings it up every now and then, but clearly knows she can boss him back. I think she might internalize a lot of it now. We do treat Taylor's resultant OCD as OCD and so far we have been able to manage. She is doing well and is currently not on any meds.

I searched through the forum looking for any links to articles or studies regarding steroid bursts. Dr. K had suggested that as our next step and I would like to do that; however, the pediatrician is still "researching" and has yet to find any "medical literature" supporting it. (I am frusterated to say the least. I wasn't requesting much. From my understanding, doctors hand out steroids all the time for rashes, hives, etc.) I haven't found much in the way of "medical literature" either. I was hoping to speed up the process by dropping some off for her. Thanks!!

Kim, Ironic that this came up at this time. I specifically asked Dr. K about this last week because my daughter had to have a cavity filled and her dentist uses nitrous. (I was not aware that it could potential cause problems, but thought I would ask anyway.) He was quick to say that it would not cause an exacerbation. She went to the dentist Thursday and she received the nitrous. I did not notice that it affected her in any way. Though....she may now have strep. We ended up in the ER yesterday to culture her. They did not have a rapid test. I am waiting for the results this morning. I am going to read through the posted articles. Interesting.

Hi Sam, My daughter is five and she is not currently on antibiotics. Knock wood, she is doing ok for now. We haven't had an MRI, but we did do a CT scan. That said, I had a phone consult with Dr. K yesterday and he said that it was fairly common not the pick up the brain swelling with CT scans. I have heard that about MRIs as well. I found it interesting as to what constitutes a pandas diagnosis. He said the following: 90% history (acute onset of particular symptoms) 5% positive culture/elevated titers 5% positive reaction to a steriod burst I thought that was very interesting. Hang in there! It sounds like you have found a doctor that will be able to help your daughter. I have read from others that the ibuprofen does help with the inflammation. It may impact the MRI results as well?

Yes, it is the same doctor. She is wonderful. She understands our kids so well. She is a special person that has the ability to think outside the box. I have a hard time thinking the way that she does. We are definitely lucky.

Hi Suzanne, We have dealt with CHOP neurology. For us, it was not helpful at all. PM me if you are interested and I will fill you in on the details. There is a woman Dr. Josephine Elia who apparently is the PANDAS expert at CHOP. We did not know about her until the NBC 10 News special that was aired earlier this month. She is not taking appointments until July. Also, she doesn't accept many insurances. Without insurance a visit is a little bit pricey. We haven't seen her yet. We did receive the paperwork to fill out. I am not sure where you are located, but if you are in the Philly area, there is an absolutely wonderful psychologist if you are interested. Her name is Dr. Tamar Chansky. She has been very helpful to us. Hang in there! Jen

Hi! Yes, during my daughter's first episode, she told us that there was a "bad guy" in her head and she could not get him out. This upset us, of course. Her psychologist explained to us that this was very normal for a child of her age going through this. She was four at the time. (Not sure how old you daughter is?) She was having intrusive thoughts and her psychologist told us that this was her way of verbalizing what was happening inside her head. She gave us strategies of ways to get her to "boss back" the voice in her head. It worked like a charm. I am not sure how effective it would be for an older child, but it certainly worked for her.

Thanks. That is good to know. I would assume that is what they mean by treatment. Will you do a steroid burst now or if things get worse again?