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My daughter just got "officially" dx!


airial95

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We have suspected in the past that our 5 yo daughter be mild PANDAS, she does get very hyper-sensitive to things (especially her brother touching things) when she's sick, but she always goes back to normal once the infection clears. She's always been a very sensitive child (a drama queen if you will - the world revolves around her and she lets you know it!!), but at times she over-reacts, even by her standards.

 

I mentioned the possibility to our awsome PANDAS friendly pediatrician about a year ago, and he mentioned that often parents of very sick kids start to project symptoms onto their healthy children because they're over-vigilant. (I think we can all relate...we see PANDAS everywhere!!) My husband agreed with the Dr that I was seeing things. We started taking notes though, and at that point, eventually I reluctantly agreed there was a possibility I might be overreacting.

 

In February, she tested positive for strep with no symptoms (we swabbed her b/c our PANDAS son was positive). We noticed the hypersensitivity again, some seperation anxieity, espcially at pre-K and my hubby and I both started to think maybe there's something to this...after a 10 day course of abx - she was fine. (Which is NOT the case with our son)

 

In July, she told us one day that her throat "tickled" (didn't hurt, just tickled). Sure enough positive culture - this time, she wet the bed, only once, but at the time she had strep, and she hasn't done this since she first came out of pull-ups at 2 1/2. Also, the same hyper-senstivity to anything that went wrong. Now, my husband was more convinced - as was I.

 

At this time, she also started to get a loose tooth. I know symptoms flare with that, so this was even one more piece to the puzzle that she may may have it too.

 

My PANDAS son got strep (again) a couple of weeks ago. For the first time, we haven't seen any improvement on the abx. We ALWAYS get her (and us for that matter) tested when our son comes up positive. For some reason, this time we didn't. (I have no idea why - it wasn't until we realized she might have strep that we realized we didn't have her checked!) In the meantime, we started to notice our daughter was becoming hyper-sensitive again.

 

On Saturday morning, my son was wigging out over breakfast (common when he's in an episode) and my daughter started wigging out because her brother touched her chair. She couldn't sit in that chair now, and she couldn't eat her breakfast. Having them both freaking out at the same time convinced my husband beyond a doubt she was PANDAS. We gave them BOTH a dose of motrin. It worked like a charm on my daughter. Yesterday she was a sobbing mess the whole time at the bus stop because I had already left for work. That sealed the deal for us.

 

I went into the pediatrician yesterday after school to have her tested, and have my sons abx extended since he's not doing well. I was prepared to fight with him about the fact that she IS PANDAS, and I was going through why we thought it as he was examining her. He didn't say much. He did a throat culture, even though he didn't see any other signs of strep, just to be sure (no elevated heart rate, enlarged tonsils, etc...). As we waited for the culture, he examined my son and we kept talking. He wasn't saying here or there whether he agreed with me, but I did mentioned Dr. Murphy's assertions that it is common in siblings.

 

When he looked at the culture, the look on his face was pure shock. She was positive. He said that based on her last three asymptomatic infections, and the descriptions I was giving him of her behavior this past week, and in the past, he no longer has any more doubts...he thinks we're dealing with PANDAS in her as well. I'm not crazy. He gave her a 30 day rx, and suggested that at our next appt with Murphy we see if we can get her in too.

 

Now, I have suspected this for a while, I've posted about this on the forums before. So why does it feel like I just got punched in the stomach? Is it terrible that I'd prefer to be seen as some crazy mom sho sees PANDAS everywhere than actually be right and have to deal with it in BOTH of my kids??

 

She pitched a hissy about school this morning, didn't want to go to the bus stop, even if I took her (taking the bus has been her favorite part of Kindergarten so far). I ended up keeping her home with me because she was so freaked out (and technically, she hasn't been on abx for 24 hours...but it's a catch 22. I want to keep her out until she's "safe" to go back, but that just feeds the school refusal and seperation anxiety...the dilemma of all PANDAS parents I guess!)

 

Ironically, I called last week to set up a meeting with her school to discuss getting notified of strep in her class because of my son...I guess I'll be changing the agenda of that meeting a bit!!!

 

Last night I just cried after they went to bed. My husband kept reminding me that it could be worse...there are kids out there suffering with far worse than what our kids have, and we've done a good job of handling it so far, we'll just have to keep on keepin' on.

 

To make matters worse, my mom called, and just like she (initially) did with our son, she said that there's nothing wrong with my daughter, all kids behave differently when they're sick. She's fine, stop making a big deal of it. I reminded her that she said the same thing about my son until the day she had him running naked through her house peeing all over the place...but it didn't matter. I eventually just had to get off the phone because the last thing I needed was her lack of understanding. (My favorite line - "When your uncle was here from Spain (he's a well known geneticist) he said that he didn't see anything wrong with Broderick at all, he looked fine." DUH!!! Of course he did, he didn't have strep then!!!)

 

At this point, I've rambled so long, I'm not sure what I'm even venting about anymore. I'ts just been a rough couple of weeks...

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My heart goes out to you.

 

I have often said that my older son saved my younger son's life. Because we knew about pandas, we knew what my younger son had immediately. He was treated early and is happy and healthy today.

 

Consider it a "blessing" that you knew what to look for. Your daughter is very "lucky" that her brother got pandas first. AND - on top of that that her parents were astute enough to know what was happening to her brother at such a young age.

 

The glass is always half full...

Edited by PhillyPA
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Consider it a "blessing" that you knew what to look for. Your daughter is very "lucky" that her brother got pandas first. AND - on top of that that her parents were astute enough to know what was happening to her brother at such a young age.

 

The glass is always half full...

 

agreed!

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Even though I know you are way ahead of the curve here, in knowing what to do about this, I understand your feelings. As long as your fears aren't confirmed, there's a chance your fears are wrong and irrational. Its a little hope crushing to have those fears validated.

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I am so sorry. You have every right to feel like you've been punched in the stomach. If parents begin to see signs in siblings, it's natural to want to hold on to that bit of hope that you are just looking to much into it. Now that someone who you respect and has been the rock in stating your dd is not PANDAS, has changed his mind...it just solidfies it and makes it more your reality.

 

Now that you know your daughter has PANDAS as well, you will become even more aware about possible strep around you, and who knows, in turn maybe this will help your son too.

 

You are a great Mom. I know you will help your kids fight this!

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I have been so back and forth on my 4 yr old (my 7 yr old is clearly PANDAS with absolute onset). My little one has always been clingy, had sensory sensitivities etc, etc & i can only recall one episode of strep (IMpetigo) that occurred and things got definitively worse. Dr. B. treated her for while & then I pulled back saying I thought it was personality. Well, after some unbearable weeks after a Disney trip (my older daughter had definitive exacerbation on and following the trip) I decided to put her on some Zith. ( I am fortunate to have a stash) and she's a different kid. I still want to second guess myself, not wanting to have 2 PANDAS kids, but I can't deny the change in her behavior in a week's time. Meeting with my ped. tomorrow re: my 7 yr old, but will share that I medicated my little one with success so far. This is hard to swallow. The good news is that you recognized it and you know how to deal with it.

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Sometimes you have to vent, even if it turns into a ramble. My whole thought process feels like one long ramble right now, so your post made perfect sense!

 

And yes, there are much worse things out there, but when it is your own it doesn't matter. I am thankful that it is not worse for, but also I feel bad for DS- life is hard enough without this. I don't care what I personally have to go through, I just want him to be happy and productive, as I am sure you want for your kids. It's just scary. But like you said, just keep on keepin on. What else to do?

 

Hang in there, your kids are lucky to have you :)

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It is hard to hope it is not, only to find out it is. My 3 year old daughter has just started her first relapse and for days my husband and I were trying to be real about what was happening. We were so hoping we were just imagining things or over-reacting etc., but then we knew that we needed to face it again and get on with the show. My thoughts and prayers will be with you. I cant imagine having two with this difficult problem. From what I have read, you are a very competent and attentive mother with so much love for her family. Sounds like you have great doctors around you, I know that is worth a lot. Hang in there!

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I'm so sorry, I hate to say it but when you described your daughter a year ago...well, I just figured. And I remember the feeling of shock. With my second son, it wasn't even on the radar cuz he was only 15 months old and I thought his eye tics and sudden tantrums were seizures. Silly me, I almost fell over when the local neuro brought up the possibility of pandas (and he didn't know my older son had it, too)!

 

And I can so relate to how your mom reacted. My whole family thinks I am nuts to think that my children have this rare disorder. It has really affected our relationship, I have not seen her in months b/c I just can't take the way she reacts to my children, I just lose my cool every time.

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I'm so sorry, I hate to say it but when you described your daughter a year ago...well, I just figured. And I remember the feeling of shock. With my second son, it wasn't even on the radar cuz he was only 15 months old and I thought his eye tics and sudden tantrums were seizures. Silly me, I almost fell over when the local neuro brought up the possibility of pandas (and he didn't know my older son had it, too)!

 

And I can so relate to how your mom reacted. My whole family thinks I am nuts to think that my children have this rare disorder. It has really affected our relationship, I have not seen her in months b/c I just can't take the way she reacts to my children, I just lose my cool every time.

 

Stephanie and airial95,

 

I can so relate to your frustration at family members telling you that your child is fine. We recently helped my brother move and while we were moving boxes our son with PANDAS was behaving like a perfect angel. My mother felt compelled to tell me that he can help his TIC's, does not believe that he really has PANDAS and who told us that his brain was inflamed. Fortunately I was on the phone and I politely ended the conversation. We've only had the PANDAS diagnosis for 8 weeks- and are still very much in the learning curve and trying to figure out next steps- so having a family member so obviously trying to down play what we are dealing with is very difficult. So I totally relate and understand your pain.

 

Julie

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I forgot to say- You go mom! This is tough stuff, but I agree that you are an exceptional mom and your children are lucky to have you. You've got me thinking about my youngest- both our oldest and youngest are adopted so no genetic links, but the youngest gets strep a lot. She will test negative in the office and when the culture is sent out she's positive. She's fortunately not had any OCD's or TIC's but she's had huge anxiety, horrible melt downs etc......yuck- something to look into.

 

Julie

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