Panda VS. Aspergers

[worriedMOM62]

Hello I am new to this forum & I guess I am just looking for some kind of advice or guidance about my situation. I am a mom of 10 year old girl who was diagnosed with aspergers about 2 years ago. My daughter has struggled quite a bit in terms of school with her anxieties related to her diagnosis. She was a preemie and has some developmental delays in regards to riding a bike, walking late etc, but other than that she is a very bright little girl. She is very creative, thrives in her reading, but struggles deeply with math to the point that she was held back in 3rd grade only to still be in the same spot she was in before. We had many issues with the school, as she had an anxiety attack at school & was refused to call me at home, & was spacked, which caused more issues that I am not happy about. It was quite a fight to even get the school involved to help her obtain an IEP. When all of this started, meaning her behavior changes she was 7 years old, before then she was a very happy little girl, never acted the way she does not, everything happened over night. And its like one day everything changed, she just became this moody child, always worrying about things, particularly OCD related behaviors, worrying about me being late to pick her up, which resulted in reminding her everyday that I was going to be there. Other ones included her clothes to the weather. It's hard for me to believe it just happens like that & I almost feel like my little girl has been stolen for me. She is currently in counseling & right now I am choosing not to use medication solely because she is a very picky child & there is no way to get her to take it. So I made a deal with her if she went, then we would see how she would do. Well she did some counseling, it seemed to slow down some of her behaviors for a year or so, but it seems shes getting worse again. Things have progressively gotten worse with her behaviors. And it really makes me remember back to the first appt she had with the Psychologist, when the Pandas was first mentioned. Back then I really didn't really buy into it as I just assumed that my daughter was just the type that had developed general anxiety, but things are starting to really make me think. My daughter has recently has 4 bouts of strep this past year & ive noticed each time after she starts to get better, her behavior really changes. It is really starting to worry me to the point where I dont know where to turn. She refuses to go to sleep, when she does sleep, she wakes up within 3 hours, she throws random tantrums, her worries are to the extreme, she doesnt want to eat, really unrealistic fears that were never there before, I really dont know where this is coming from. I really throught she was going to grow out of this but its like something is going on and its really making me wonder if this is in fact not aspergers, because she seems to only exhibit the behaviors at certain times, they wax and wane. So anyways I am just looking for any advice that anyone can give me. I just want whats best for my daughter & if that means taking her to a dr that knows how to help, then i am wlling to do so. thanks you so much for reading this.

[MomWithOCDSon]

Much of what you describe appears to be very indicative of PANDAS. I would seek a strep test and a professional opinion by a PANDAS-knowledgable doctor ASAP.

 

Some PANDAS kids do exhibit some autism-spectrum type behaviors, like Aspbergers; my DS definitely does. And the extent to which these behaviors are tied to actual Aspbergers, and how much they are just a symptomatic behavior of the PANDAS is up for discussion. But I do know from experience that treatment for PANDAS has improved my son's Aspberger-type behaviors, so there's definitely some connection.

 

Good luck to you, and keep seeking answers.

[Iowadawn]

We are glad you found the forum. WELCOME, unfortunately.

 

This is the pretty much my mantra because we spent so many precious years trying to figure out our son. You are lightyears ahead in that you have at least heard "PANDAS". The forum lists doctors who are treating PANDAS---Run, don't walk to someone who can assess your girl and offer appropriate treatment, if necessary. Do not waste time trying to educate a doc. Do not waste another day trying to figure out what could be wrong with your daughter. No one on the forum will say if we think your girl has PANDAS--there are enough symptoms you mention that warrant further investigation, though.

 

Dawn

[peglem]

We are glad you found the forum. WELCOME, unfortunately.

 

This is the pretty much my mantra because we spent so many precious years trying to figure out our son. You are lightyears ahead in that you have at least heard "PANDAS". The forum lists doctors who are treating PANDAS---Run, don't walk to someone who can assess your girl and offer appropriate treatment, if necessary. Do not waste time trying to educate a doc. Do not waste another day trying to figure out what could be wrong with your daughter. No one on the forum will say if we think your girl has PANDAS--there are enough symptoms you mention that warrant further investigation, though.

 

Dawn

I second this advice! And, aspergers and autism are collections of symptoms- w/o explaining underlying cause.

Edited August 3, 2010 by peglem

[EAMom]

Worries and anxiety, math learning problems, "random" tantrums, eating issues, overnight behavior change at 7 years old, repeated strep infections, autistic behaviors, sleep issues, improvement with treatment for strep infections...all of this reaks of PANDAS to me.

 

When your dd has had strep infections, have you done throat cultures about 3 weeks after the course of antibiotics are done to see if the infection has cleared?

 

I would recommend starting off with a current throat culture (GABHS--do the 72 hour culture if the rapid is neg) on your dd and ALL family members to check for carriers...this is something you can do while you are waiting for an appointment with a PANDAS doc. (If your ped balks, you might have to lie and say that strep has been going around and your dd had a sore throat etc.)

 

Where do you live? Maybe somebody can recommend a PANDAS doc.

 

Here is a flowchart http://www.latitudes.org/forums/index.php?showtopic=6688

and thread on FAQ's http://www.latitudes.org/forums/index.php?showtopic=6266

 

and list of helpful docs http://www.latitudes.org/forums/index.php?showtopic=5023 (some of these are willing to learn, others are true experts).

 

I'm glad you've found this forum, it's the first step towards recovery!

[3boysmom]

Ditto...don't waste time figuring it out...go seek help! We too have an aspergers diagnosis and now PANDAS!

[thereishope]

Welcome. Personally, I would look into it. There are red flags that you posted. Also, a good number of parents on her have been told by someone (whether it be school, a therapist, doctor) that they needed to look into possible autism or Aspergers and it was the PANDAS symptoms. Because she has carried the Aspergers dx for 2 years, I agree to seek out a doctor already familiar with PANDAS/PITAND. I think you may encounter more of a battle with a basic ped that isn't familiar with it.

 

 

 

 

Hello I am new to this forum & I guess I am just looking for some kind of advice or guidance about my situation. I am a mom of 10 year old girl who was diagnosed with aspergers about 2 years ago. My daughter has struggled quite a bit in terms of school with her anxieties related to her diagnosis. She was a preemie and has some developmental delays in regards to riding a bike, walking late etc, but other than that she is a very bright little girl. She is very creative, thrives in her reading, but struggles deeply with math to the point that she was held back in 3rd grade only to still be in the same spot she was in before. We had many issues with the school, as she had an anxiety attack at school & was refused to call me at home, & was spacked, which caused more issues that I am not happy about. It was quite a fight to even get the school involved to help her obtain an IEP. When all of this started, meaning her behavior changes she was 7 years old, before then she was a very happy little girl, never acted the way she does not, everything happened over night. And its like one day everything changed, she just became this moody child, always worrying about things, particularly OCD related behaviors, worrying about me being late to pick her up, which resulted in reminding her everyday that I was going to be there. Other ones included her clothes to the weather. It's hard for me to believe it just happens like that & I almost feel like my little girl has been stolen for me. She is currently in counseling & right now I am choosing not to use medication solely because she is a very picky child & there is no way to get her to take it. So I made a deal with her if she went, then we would see how she would do. Well she did some counseling, it seemed to slow down some of her behaviors for a year or so, but it seems shes getting worse again. Things have progressively gotten worse with her behaviors. And it really makes me remember back to the first appt she had with the Psychologist, when the Pandas was first mentioned. Back then I really didn't really buy into it as I just assumed that my daughter was just the type that had developed general anxiety, but things are starting to really make me think. My daughter has recently has 4 bouts of strep this past year & ive noticed each time after she starts to get better, her behavior really changes. It is really starting to worry me to the point where I dont know where to turn. She refuses to go to sleep, when she does sleep, she wakes up within 3 hours, she throws random tantrums, her worries are to the extreme, she doesnt want to eat, really unrealistic fears that were never there before, I really dont know where this is coming from. I really throught she was going to grow out of this but its like something is going on and its really making me wonder if this is in fact not aspergers, because she seems to only exhibit the behaviors at certain times, they wax and wane. So anyways I am just looking for any advice that anyone can give me. I just want whats best for my daughter & if that means taking her to a dr that knows how to help, then i am wlling to do so. thanks you so much for reading this.

[nevergiveup]

Plz run the cunningham test, it gave many of us reassurance that the diagnosis of pandas was legit. Plus it helps experts prescribe immunomodulators

[worriedMOM62]

I live in the Oklahoma city area, so I don't even know where to start. I already know i can't walk into my family physician saying i think my child may have "pandas" they would look at me like I was crazy I am positive. So if anyone knows of any dr's near me, please let me know. Thank so much for the feedback.

[Stephanie2]

Many doctors who treat the underlying medical problems associated with autism/aspergers have found that some of our kids have PANDAS as one of their underlying issues. Look for a DAN doctor (Defeat Autism Now) who specializes in PANDAS (off the top of my head: www.icdrc.org, and Dr. Lin in California - don't know contact info)! Also, check out this website and become a member to get a list of MD's: www.pandasresourcenetwork.org