Advice for my 6 year old daughter. *update 5/13
Jan 31, 2015 3:08:29 GMT
miominmio, blue tulip, and 10 more like this
Post by heatherx on Jan 31, 2015 3:08:29 GMT
Update 5/13
i thought I should do another update in case anyone was wondering. My daughter has had a rough road these last few months but I can finally see great improvement. We had to pull her out of school for several weeks in March but she is now back full time and thriving. Her teacher told me she's never seen a child deteriorate so fast in her career.
We have struggled through our older two kids and strep infections, which caused Lexi to decline. Now that it's cleared up she's doing much better. Her doctors are amazing and always there for us. We are actually being interviewed along with our team at the PANS/PANDAS clinic at Stanford for an article in the Wall Street Journal later this month. I'm hoping this helps raise awareness for other families struggling with this terrible disorder.
While my little girl isn't fully recovered I'm very grateful for all of the pieces of her we've gotten back. I just wish she could say " I love you" again but I'll take what I can get!
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UPDATE 2/10
Well, it's PANDAS. We have the best team around that is going to help us through this. They believe this is her first flare-up and we caught it early. She had a lot of blood work done yesterday so they can use it as a baseline. There is so much they are trying to learn about this disorder so we have a long road ahead of us. I am so relieved that we have answers and got them so quickly.
I'll add more info in the next few days when I feel like I can string more than a few sentences together. Thanks for everything. You will never know how much the advice, support, messages etc have meant to me.
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UPDATE 2/6
I just got a call from the PANDAS/PANS clinic at Stanford Hospital asking if I could be there on Monday at 3pm. I said absolutely, finished our conversation and then proceeded to cry my eyes out. At least this time it was happy tears knowing my baby girl is getting the help she needs, especially because she has gotten worse since my original post. I could use some more prayers and good thoughts to get us through these next few days. Thanks everyone!
**************************************************************************************************************************************************************
UPDATE 2/2
We saw a pediatrician today, not the one we normally see but my husband has been so upset that I pushed it up. We told her our story and she printed out a handout and read it to us. She knew about it, but nothing specific to it. She did a rapid strep test (that was negative) and a regular one. She also sent us to the lab to check titers. We were referred to a pediatric neurologist and a pediatric rhuematologist. One is at Lucile Packard/Stanford in Palo Alto and one is in Walnut Creek, CA. My husband felt like she dismissed us really easily, especially since she didn't know anything about PANDAS, and he went back in to the room to speak with her alone. She listened to his concerns and had no idea about some of the points he made about PANDAS to her. She said she was going to consult with her colleagues about my daughters situation. I'm crossing my fingers that these specialist appointments come quick because my heart is breaking for my little girl who knows something is wrong. Your advice and comments have been so wonderful. Thank you from the bottom of my heart!
***************************************************************************************************************************************************************
I was a long time lurker of the old boards and now this one. I could really use some pea wisdom to get me through until our doctor's appointment on Tuesday.
My beautiful, funny, sweet, loving and well behaved 6 year old daughter has changed rapidly in the last 2-3 weeks. She's gone from being the easiest kid to not responding to us a lot. It started off with her not saying "I love you" back to me. She said she didn't want to lie to me. I was heartbroken but thought it was just a phase. Then she did it to her Dad. She will barely respond to direct questions. I can ask "Do you want to take a shower or a bath?" and she will just stare at me and make small facial gestures. She will however chase me laughing home from park, randomly have big conversations, fall asleep cuddling in my arms and read stories to me for hours. Today she played dress-up and sang songs out loud forever. So, her behavior is completely fine a lot of the time.
Her teacher has noticed it, too. We have been talking about it for 2 weeks now and she keeps an eye on her and watches any learning, friendship and other issues. At first she said she's totally fine in class. Today she told me that she won't answer direct questions from her anymore either. She does all of her work, listens to everything she says.....she just won't respond to direct questions.
I've tried numerous talks with her, asking everything from if she feels okay to if anyone has told her to keep secrets from us. She is with me all the time when she's not in school and they haven't had a babysitter in forever (we always use the same one that they love). I'm sure that no one has hurt her in any way.
It's getting worse every day. She now does the same things with her sister and brother who she adores! They are heartbroken, too.
She also has started repeating a few sayings. One is "I take it back. Yes. No. Yes. No. Beep. Beep. Beep" and a "blah blah blah" noise. Last week it was shaking her hand from a thumbs up to a thumbs down really, really fast. She has never done this before.
The only things that happened leading up to all of this was me getting really sick with a cold/flu the entire Christmas break and then she got sick and missed 3 days of school the second week back from break. She also moved to a different reading group in Kindergarten. It's in her same normal class but she just stays later on Thursday/Friday instead of Monday/Tuesday. Her teacher and I have both asked her if she wants to switch back but she won't give us an answer and honestly, I don't think that's the problem at all. I don't think this is just a phase. This is not my daughter.
Thanks for any advice you could give me. I am heartbroken.
i thought I should do another update in case anyone was wondering. My daughter has had a rough road these last few months but I can finally see great improvement. We had to pull her out of school for several weeks in March but she is now back full time and thriving. Her teacher told me she's never seen a child deteriorate so fast in her career.
We have struggled through our older two kids and strep infections, which caused Lexi to decline. Now that it's cleared up she's doing much better. Her doctors are amazing and always there for us. We are actually being interviewed along with our team at the PANS/PANDAS clinic at Stanford for an article in the Wall Street Journal later this month. I'm hoping this helps raise awareness for other families struggling with this terrible disorder.
While my little girl isn't fully recovered I'm very grateful for all of the pieces of her we've gotten back. I just wish she could say " I love you" again but I'll take what I can get!
----------------------------------------------------------------------------------------------------------
UPDATE 2/10
Well, it's PANDAS. We have the best team around that is going to help us through this. They believe this is her first flare-up and we caught it early. She had a lot of blood work done yesterday so they can use it as a baseline. There is so much they are trying to learn about this disorder so we have a long road ahead of us. I am so relieved that we have answers and got them so quickly.
I'll add more info in the next few days when I feel like I can string more than a few sentences together. Thanks for everything. You will never know how much the advice, support, messages etc have meant to me.
************************************************************************************************************************************************************
UPDATE 2/6
I just got a call from the PANDAS/PANS clinic at Stanford Hospital asking if I could be there on Monday at 3pm. I said absolutely, finished our conversation and then proceeded to cry my eyes out. At least this time it was happy tears knowing my baby girl is getting the help she needs, especially because she has gotten worse since my original post. I could use some more prayers and good thoughts to get us through these next few days. Thanks everyone!
**************************************************************************************************************************************************************
UPDATE 2/2
We saw a pediatrician today, not the one we normally see but my husband has been so upset that I pushed it up. We told her our story and she printed out a handout and read it to us. She knew about it, but nothing specific to it. She did a rapid strep test (that was negative) and a regular one. She also sent us to the lab to check titers. We were referred to a pediatric neurologist and a pediatric rhuematologist. One is at Lucile Packard/Stanford in Palo Alto and one is in Walnut Creek, CA. My husband felt like she dismissed us really easily, especially since she didn't know anything about PANDAS, and he went back in to the room to speak with her alone. She listened to his concerns and had no idea about some of the points he made about PANDAS to her. She said she was going to consult with her colleagues about my daughters situation. I'm crossing my fingers that these specialist appointments come quick because my heart is breaking for my little girl who knows something is wrong. Your advice and comments have been so wonderful. Thank you from the bottom of my heart!
***************************************************************************************************************************************************************
I was a long time lurker of the old boards and now this one. I could really use some pea wisdom to get me through until our doctor's appointment on Tuesday.
My beautiful, funny, sweet, loving and well behaved 6 year old daughter has changed rapidly in the last 2-3 weeks. She's gone from being the easiest kid to not responding to us a lot. It started off with her not saying "I love you" back to me. She said she didn't want to lie to me. I was heartbroken but thought it was just a phase. Then she did it to her Dad. She will barely respond to direct questions. I can ask "Do you want to take a shower or a bath?" and she will just stare at me and make small facial gestures. She will however chase me laughing home from park, randomly have big conversations, fall asleep cuddling in my arms and read stories to me for hours. Today she played dress-up and sang songs out loud forever. So, her behavior is completely fine a lot of the time.
Her teacher has noticed it, too. We have been talking about it for 2 weeks now and she keeps an eye on her and watches any learning, friendship and other issues. At first she said she's totally fine in class. Today she told me that she won't answer direct questions from her anymore either. She does all of her work, listens to everything she says.....she just won't respond to direct questions.
I've tried numerous talks with her, asking everything from if she feels okay to if anyone has told her to keep secrets from us. She is with me all the time when she's not in school and they haven't had a babysitter in forever (we always use the same one that they love). I'm sure that no one has hurt her in any way.
It's getting worse every day. She now does the same things with her sister and brother who she adores! They are heartbroken, too.
She also has started repeating a few sayings. One is "I take it back. Yes. No. Yes. No. Beep. Beep. Beep" and a "blah blah blah" noise. Last week it was shaking her hand from a thumbs up to a thumbs down really, really fast. She has never done this before.
The only things that happened leading up to all of this was me getting really sick with a cold/flu the entire Christmas break and then she got sick and missed 3 days of school the second week back from break. She also moved to a different reading group in Kindergarten. It's in her same normal class but she just stays later on Thursday/Friday instead of Monday/Tuesday. Her teacher and I have both asked her if she wants to switch back but she won't give us an answer and honestly, I don't think that's the problem at all. I don't think this is just a phase. This is not my daughter.
Thanks for any advice you could give me. I am heartbroken.
