More than 1 child with PANDAS?

[ziva]

My DS7 was just diagnosed with PANDAS in Feb.11.

 

He got strep, and within 12hrs started his PANDAS symptoms. His symptoms are severe axiety, hallucinations, and auditory issues/OCD. Our ped. was great and was able to diagnose right away. He has had strep 2x since then, and almost all symptoms go with the abx.

 

I had started a log in Feb, as soon as my DS7's strep started to try to keep track his symptoms. I also started to keep track of my other two kids DS4, and DD6.

 

During this time my daughter (6yrs) has also gotten strep 2x.

During the first time she had a couple rage episodes that seemed weird enough to me at the time to log them. One in particular she was on the floor crying, almost convulsing...curling up in a ball and then straightening out and saying she felt like she was dying.

 

She is now on abx for strep again (she got it again 3wks after last time), and has been having some rage issues again. They are almost always at night between 5pm-10pm. Last night she said she felt so crazy weird/angry and didnt have any reason for it. There wasn't really anything that set her off, she just was angry. She said she wanted to kick, scream, punch, rip her curtains to shreds, and that she felt like she was going to die. She seemed really scared by how she was feeling.

 

She has never had strep (that I know of) before these two times. And with each time she presented with normal strep syptoms..sore throat, fever, not feeling well. Each time she started abx within 24hrs of feeling streppy.

 

So......my question is does this seem like PANDAS issues to you?

 

The symptoms are so different from my son, but they are also such a sudden onset.

 

And for parents of multiple kids with PANDAS, do they normally present with same sypmtoms, or is each child different?

 

She is a really sweet, and loveing child. She has never been voilent. She has been moody, angry normal stuff in the past, but NEVER like this. What seems really strange is how she explains it. I've never heard her even talk like this. It just comes over her, and she describes things so graphically.....the angry thoughts.

 

I have made an apt. with her pediatrician. But I feel like I learn sooooooooo much here, that I would post to get some point of views from the forum.

 

Thanks for taking the time to read this......I don't know what I would do without this place!

[T_Mom]

I am so sorry you are going through this--

 

I can say that we have 2 daughters and both have high Cam Kinase II indicators when in exacerbation. They have RADICALLY different manifestations of PANDAS/PITAND. One classic severe OCD w/ mild ticcing, the other SEVERE obstinate defiance, including violence directed primarily towards myself and my husband. She also has severe sudden onset OCD, but that pales in comparison to the damage that the ODD behaviors have caused in our family. --and this is a child that has always been a joy to be around before this started, SWEET and kind--

 

I hope that you are able to find help for both of your children.

 

If I were you I would have both girls tested for Cam Kinase levels per Dr Cunningham's lab asap.

Edited April 13, 2011 by T.Mom

[Tamistwins]

I am so sorry you are going through this--

 

I can say that we have 2 daughters and both have high Cam Kinase II indicators when in exacerbation. They have RADICALLY different manifestations of PANDAS/PITAND. One classic severe OCD w/ mild ticcing, the other SEVERE obstinate defiance, including violence directed primarily towards myself and my husband. She also has severe sudden onset OCD, but that pales in comparison to the damage that the ODD behaviors have caused in our family. --and this is a child that has always been a joy to be around before this started, SWEET and kind--

 

I hope that you are able to find help for both of your children.

 

If I were you I would have both girls tested for Cam Kinase levels per Dr Cunningham's lab asap.

T Mom I also have a child with extreme odd and sounds pretty much like your description, how do u handle the behavior.. Any suggestions?

[T_Mom]

Tamistwins--I only wish I knew. This is unlike any behavioral issue I have ever seen. When the ODD first started up we tried enlisting the help of a behavior counselor (multiple times per week.) Our d continued to get angrier as the weeks passed--We have tried behavioral therapy, 2-hour reward/charts, etc.,etc. She is 11. None of these worked. The only thing that works is to leave her alone.

 

She is now entirely reactive to my husband and myself--violent, screaming, etc. Threatens all types of things, throws things, breaks things. She can't stand for us to make any noise in the car, even breathing--OCD issues of all types. She has been violent towards us now for about 5 months. The OCD that came on with strep exposure this summer has essentially morphed into OCD ODD, a nightmare. We tried restraining her initially, all types of behavior rewards and/or consequences--THESE DID NOT WORK. We are a relatively calm, sane, "normal" family in the burbs -- I can tell you, I will never, never again look twice at a mother with a child "out of control"...and wonder why she doesn't "do something!" We have tried it all

Edited April 13, 2011 by T.Mom

[Stephanie2]

My DS7 was just diagnosed with PANDAS in Feb.11.

 

He got strep, and within 12hrs started his PANDAS symptoms. His symptoms are severe axiety, hallucinations, and auditory issues/OCD. Our ped. was great and was able to diagnose right away. He has had strep 2x since then, and almost all symptoms go with the abx.

 

I had started a log in Feb, as soon as my DS7's strep started to try to keep track his symptoms. I also started to keep track of my other two kids DS4, and DD6.

 

During this time my daughter (6yrs) has also gotten strep 2x.

During the first time she had a couple rage episodes that seemed weird enough to me at the time to log them. One in particular she was on the floor crying, almost convulsing...curling up in a ball and then straightening out and saying she felt like she was dying.

 

She is now on abx for strep again (she got it again 3wks after last time), and has been having some rage issues again. They are almost always at night between 5pm-10pm. Last night she said she felt so crazy weird/angry and didnt have any reason for it. There wasn't really anything that set her off, she just was angry. She said she wanted to kick, scream, punch, rip her curtains to shreds, and that she felt like she was going to die. She seemed really scared by how she was feeling.

 

She has never had strep (that I know of) before these two times. And with each time she presented with normal strep syptoms..sore throat, fever, not feeling well. Each time she started abx within 24hrs of feeling streppy.

 

So......my question is does this seem like PANDAS issues to you?

 

The symptoms are so different from my son, but they are also such a sudden onset.

 

And for parents of multiple kids with PANDAS, do they normally present with same sypmtoms, or is each child different?

 

She is a really sweet, and loveing child. She has never been voilent. She has been moody, angry normal stuff in the past, but NEVER like this. What seems really strange is how she explains it. I've never heard her even talk like this. It just comes over her, and she describes things so graphically.....the angry thoughts.

 

I have made an apt. with her pediatrician. But I feel like I learn sooooooooo much here, that I would post to get some point of views from the forum.

 

Thanks for taking the time to read this......I don't know what I would do without this place!

 

Yes my boys present differently. one gets adhd and tics, where the other does not. One is VIOLENT, where the other just has emotional meltdowns. One has hallucinations where the other does not. The one feature that they both get strongly is the OCD. the rest really varies.

 

Also, one has recurrent strep issues where the other does not. One remits within 24 hours of abx, where the other takes 5-10 days. They both do not respond to steroid bursts, only to steroid tapers. One has miraculously remitted with homeopathy, one has not (yet...I'm working on it).

 

Oh, and yes this sounds like pandas. And be forewarned, when i brought my second son's pandas issues up with the ped, she did not buy it that they could both have it. She thought my younger son was imitating my older (but from the above description, it is clear that that is impossible). I tried to explain to her that a 15 month old (that's how old my younger was at first exacerbation) cannot possibly imitate this many pandas symptoms and get them so darn accurate! Either that or I have a budding actor on my hands!

Edited April 14, 2011 by Stephanie2

[rockytop]

Just want to "ditto" what everyone else has said. Sorry to say- but this behavior sounds so suspicious.

I have 2 daughter for sure with PANDAS- both present differently- actually just like t.mom explained her situation.

a third daughter (age 5) has mild vocal tics for almost a year and then fears, screaming, difficulty with clothing and yes, saying she wanted to die. I thought- there is NO way this could happen three times. Our PANDAS doc did not blink an eye and after a month of prednisone- no tics, no fears and she is happy again. NO strep for sure- but who knows.

 

My point is that all 3 presented very differently.

 

Yes, your doc may not believe you-- do you have video? that always helps!

 

Do you have a doctor that specializes in PANDAS? ours has many sibling patients.

[ziva]

Just want to "ditto" what everyone else has said. Sorry to say- but this behavior sounds so suspicious.

I have 2 daughter for sure with PANDAS- both present differently- actually just like t.mom explained her situation.

a third daughter (age 5) has mild vocal tics for almost a year and then fears, screaming, difficulty with clothing and yes, saying she wanted to die. I thought- there is NO way this could happen three times. Our PANDAS doc did not blink an eye and after a month of prednisone- no tics, no fears and she is happy again. NO strep for sure- but who knows.

 

My point is that all 3 presented very differently.

 

Yes, your doc may not believe you-- do you have video? that always helps!

 

Do you have a doctor that specializes in PANDAS? ours has many sibling patients.

 

My ped. has only seen 4 cases of PANDAS in her practice .. my DS7 being her fourth. I don't think any of the others are siblings. But she has been great with him, and she is really willing to work with us, and learn along with us.

 

I just took my son to see Dr.K last week, so I am going to email him about my daughter as well.

 

This is all just blowing my mind! I feel like I am just getting a grasp on my son and what we need to do for him, and now adding my daughter to the mix is so crazy.

 

Thanks for all of the help

[Tamistwins]

Tamistwins--I only wish I knew. This is unlike any behavioral issue I have ever seen. When the ODD first started up we tried enlisting the help of a behavior counselor (multiple times per week.) Our d continued to get angrier as the weeks passed--We have tried behavioral therapy, 2-hour reward/charts, etc.,etc. She is 11. None of these worked. The only thing that works is to leave her alone.

 

She is now entirely reactive to my husband and myself--violent, screaming, etc. Threatens all types of things, throws things, breaks things. She can't stand for us to make any noise in the car, even breathing--OCD issues of all types. She has been violent towards us now for about 5 months. The OCD that came on with strep exposure this summer has essentially morphed into OCD ODD, a nightmare. We tried restraining her initially, all types of behavior rewards and/or consequences--THESE DID NOT WORK. We are a relatively calm, sane, "normal" family in the burbs -- I can tell you, I will never, never again look twice at a mother with a child "out of control"...and wonder why she doesn't "do something!" We have tried it all

Tamistwins--I only wish I knew. This is unlike any behavioral issue I have ever seen. When the ODD first started up we tried enlisting the help of a behavior counselor (multiple times per week.) Our d continued to get angrier as the weeks passed--We have tried behavioral therapy, 2-hour reward/charts, etc.,etc. She is 11. None of these worked. The only thing that works is to leave her alone.

 

She is now entirely reactive to my husband and myself--violent, screaming, etc. Threatens all types of things, throws things, breaks things. She can't stand for us to make any noise in the car, even breathing--OCD issues of all types. She has been violent towards us now for about 5 months. The OCD that came on with strep exposure this summer has essentially morphed into OCD ODD, a nightmare. We tried restraining her initially, all types of behavior rewards and/or consequences--THESE DID NOT WORK. We are a relatively calm, sane, "normal" family in the burbs -- I can tell you, I will never, never again look twice at a mother with a child "out of control"...and wonder why she doesn't "do something!" We have tried it all

I hear you I am so sorry it is so hard to lead a normal sane life with all that we have to go through. We planned on driving down to Fl for spring break when things were not so extreme and now I am dreading the trip. To spend so much money that we don't have just to be miserable. I have 3 children, twins they will be 8 next month a nd a 22 month old. They are all being treated for pandas and the twins for lyme/ bartonella. Life is unbearable. The yelling, rages, demand, nastiness. I pretty much can't go anywhere. But, my little one needs to go places as I took the twins places to enjoy. Now nothing is enjoyable. I hear you about just leaving her be.. All the talking, praising, giving,disciplining... Nothing works. My kids are late to school every day nothing I can do to get them there on time they just don't care it is so odd.

Praying for us all but no ones listening.

[Dedee]

I have three children with PANDAS and all three are different in their symptoms and their severity. One reacts to strep only and runs high strep titers with only mildly high myco p IgG. The other two run normal strep titers but have extremely high Myco p IgG and IgM. My daughter is the worst and most violent. We see one of the PANDAS specialist at a research hospitals and she follows them in one of her studies. It's crazy how this runs in families. Seems so unfair to the parents doesn't it?

[nicklemama]

My son's intial episode of PANDAS was ODD. His behavior changed overnight. He went from sweet, mannerly, go along type to oppositional, irritible, angry and you never knew what would set him off. He hit, kicked, spit, scratched, bit us and called us idiots and stupid, told us he hated us, wanted new parents. He also had severe separation anxiety and if I left the house w/out him for any time at all, it set everything off. I couldn't take him anywhere and I couldn't go anywhere. I never want to relive those days. Anyway, his current symptoms are mostly tics and ocd. We just saw Dr K last week and he said changing symptoms w/ each exacerbation is very typical of PANDAS kids. I hate to say it, but your daughters symptoms sound very familiar and similar to my son's.

[Ann280]

Just want to "ditto" what everyone else has said. Sorry to say- but this behavior sounds so suspicious.

I have 2 daughter for sure with PANDAS- both present differently- actually just like t.mom explained her situation.

a third daughter (age 5) has mild vocal tics for almost a year and then fears, screaming, difficulty with clothing and yes, saying she wanted to die. I thought- there is NO way this could happen three times. Our PANDAS doc did not blink an eye and after a month of prednisone- no tics, no fears and she is happy again. NO strep for sure- but who knows.

 

My point is that all 3 presented very differently.

 

Yes, your doc may not believe you-- do you have video? that always helps!

 

Do you have a doctor that specializes in PANDAS? ours has many sibling patients.

Yes a video is good if possible..I have recorded some of my daughters outbreaks but only sound not video... felt a bit guilty about it,but I felt like some of my family thought I was making a big deal out of nothing.

You could do that and show your doctor what your dealing with. At times it's hard to not feel as if this PANDAS has stolen our children at times:(