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Where do I find a DAN Doctor...still not sure what the DAN movement is


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Hi There,

 

I'm trying to make long term plans to keep my dd healthy. Hopefully she will get IVIG soon but I'm afraid after she might get sick again. I saw that people get DAN doctors and the abbreviation section only said something about the DAN movement. Can anyone explain what a DAN doctor does and how to find them?

 

Thanks!

 

Kristy

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DAN! just stands for Defeat Autism Now! It's a group of dr's that have pledged to follow a certain protocol to treat autism and related disorders. We have been following the dan! protocol for my dd for almost 2yrs now. She has autism and several of the comorbid issues that go along with it. Your dd doesn't need to have autism to go to a DAN!, they will help with PANDAS, ADHD, asthma, etc. Not all DAN!s are created equally and it would definitely be a good idea to ask around to some of the parents that have been in "the game" for a while. We had to go to several dr's before we found one that we really liked. I live in southern Cali and we use Dr. Thomas Lin and Dr. Jerry Kartzinel. we've had awesome experiences with both.

 

Here is a link for a list of DAN! dr's. http://www.autism.com/pro_danlists_us.asp

-Amber

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Thanks so much Amber! I think going to a DAN! doctor would be really good for my daughter even though she has not been dianosed with Autism. With all of the things going on with her though it would just be nice to have someone around who understood us. :-)

 

I'm so glad I found this forum!

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It is really refreshing to finally find a dr. that is willing listen and help. I got so sick of being told that my 14mos old was a liar and was over-reacting. Seriously?

 

You were told that a 14 MONTH old was a liar and was over reacting? How does a toddler lie and overreact? UGH!! My son had PANDA as a toddler. He had chronic sinusitis and his behavior was unmanageable (biting, head butting, climbing on things, climbing out of crib, couldn't sleep at night) whenever he was off high-dose augmentin. Once he went on high dose augmentin he was a different child within 48 hours. I was told he was "aggressive", and "bad" at 14 months, and the adjectives just got worse as he got older.

 

Your child is so fortunate that you are recognizing PANDAS now. My wish is for Parents of young children with PANDAS to one day have a book to follow - kind of "what to expect - the PANDAS toddler years"... to help sort things out!

 

Keep notes on what you do. Maybe one day you will write the book!

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Can you believe that? We had a pediatric gastroenterologist tell us that all kids with autism over-react and make things up. He also said that if she were a normal kid and could tell him she was actually in pain, he would consider scoping her but since she was clearly autistic, it would just be a waste of time. He said that us parents just get so worked up trying to figure out what is wrong but at the end of the day, there's nothing you can do to help them. He then sent me home with a bottle of miralax and a script for nystatin cream in case her butt was itchy. I was speechless. It's ok though, our DAN! gave us a script for prevacid and she has been sleeping like a rock since so we got the last laugh on that one. She may not be able to talk but she gets her point across when she's in pain!

 

Your son sounds exactly like my dd..... irritable, aggressive, anxious, miserable. That gives me hope about treatment to hear the augmentin helped because zithro doesn't seem to be doing anything right now.

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Can you believe that? We had a pediatric gastroenterologist tell us that all kids with autism over-react and make things up. He also said that if she were a normal kid and could tell him she was actually in pain, he would consider scoping her but since she was clearly autistic, it would just be a waste of time. He said that us parents just get so worked up trying to figure out what is wrong but at the end of the day, there's nothing you can do to help them. He then sent me home with a bottle of miralax and a script for nystatin cream in case her butt was itchy. I was speechless. It's ok though, our DAN! gave us a script for prevacid and she has been sleeping like a rock since so we got the last laugh on that one. She may not be able to talk but she gets her point across when she's in pain!

 

Your son sounds exactly like my dd..... irritable, aggressive, anxious, miserable. That gives me hope about treatment to hear the augmentin helped because zithro doesn't seem to be doing anything right now.

 

Did he actually use the term "normal kid" ??

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I'm not sure if the term that was used was "normal" or n/t or verbal or something to that effect. At that point in the conversation, I was full of rage and having visions of slashing tires. The worst part was he kept patting me on the back as if I was a helpless victim. Very condescending.

 

Can you believe that? We had a pediatric gastroenterologist tell us that all kids with autism over-react and make things up. He also said that if she were a normal kid and could tell him she was actually in pain, he would consider scoping her but since she was clearly autistic, it would just be a waste of time. He said that us parents just get so worked up trying to figure out what is wrong but at the end of the day, there's nothing you can do to help them. He then sent me home with a bottle of miralax and a script for nystatin cream in case her butt was itchy. I was speechless. It's ok though, our DAN! gave us a script for prevacid and she has been sleeping like a rock since so we got the last laugh on that one. She may not be able to talk but she gets her point across when she's in pain!

 

Your son sounds exactly like my dd..... irritable, aggressive, anxious, miserable. That gives me hope about treatment to hear the augmentin helped because zithro doesn't seem to be doing anything right now.

 

Did he actually use the term "normal kid" ??

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Do you know what the kg/mg is to be considered "high dose" Augmentin? Right now, DS9 is on 1000 mg Augmentin and he weighs 78 lbs. If I did the math right, that's 28.5 mg/kg. I want to try high-dose Augmentin, but don't know exactly what that is!!!

 

Thanks!

 

 

It is really refreshing to finally find a dr. that is willing listen and help. I got so sick of being told that my 14mos old was a liar and was over-reacting. Seriously?

 

You were told that a 14 MONTH old was a liar and was over reacting? How does a toddler lie and overreact? UGH!! My son had PANDA as a toddler. He had chronic sinusitis and his behavior was unmanageable (biting, head butting, climbing on things, climbing out of crib, couldn't sleep at night) whenever he was off high-dose augmentin. Once he went on high dose augmentin he was a different child within 48 hours. I was told he was "aggressive", and "bad" at 14 months, and the adjectives just got worse as he got older.

 

Your child is so fortunate that you are recognizing PANDAS now. My wish is for Parents of young children with PANDAS to one day have a book to follow - kind of "what to expect - the PANDAS toddler years"... to help sort things out!

 

Keep notes on what you do. Maybe one day you will write the book!

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