What do you think?

[Tattoomom]

I posted here years ago about my son, who started ticcing at age 5, after a bout with Mycoplasma. His Psychiatrist said he has a mild case of Tourettes, but antibiotics really help him when he has a flare up of tics so it's hard to say. He also takes Intuniv and Zoloft and is doing quite well.

 

Back in November of 2010, his younger sister started burping constantly and we thought it might be a tic but took her to the doctor in case it was acid reflux or something of that nature. To our surprise, she tested positive for Strep throat! Along with some OCD's (she has to burp 148 times before she falls asleep), she won't step on yellow lines, she's obsessed with time, she picks her fingers around the cuticles until they are bleeding and down to the meat) and horrible nighttime regression. She was diagnosed with PANDAS due to symptoms. Her blood work was all normal.

 

My 3rd child is who I'm concerned about..... She had Autoimmune Neutropenia from 7 months old- 3 1/2. She's almost 4 now. During this time. she's endured weekly blood draws, weekly injections at home, countless ER visits, hospitalizations, a bone marrow biopsy, etc... At 2 1/2 she started having HORRIBLE TEMPER TANTRUMS. Way beyond normal for a toddler. She would scream at the top of her lungs. Sometimes we would know why, sometimes we had no idea. Sometimes she would wake up this way in the morning. She would keep us up at night screaming, fighting sleep. She's very hard to console. Most days, she seemed almost in a fog, almost spacey. We noticed her language development slowing and some regression with things she once knew (like colors and shapes) She has been very difficult to potty train. I was very worried and concerned she may have autism.

 

And then she got a UTI. And was given Amoxicillin. WOW! Ironically, she seemed to perk up. She was chatting with us up a storm. Her personality came out and she seemed much calmer. The entire family noticed the change in her on the antibiotic!! Already having PANDAS kids, we spoke to the Pediatrician immediately about the change we saw. She finished her Amoxicillin and 2 days later, had strep! 2 days after a 10 day course of Amoxicillin! So she went back on for another 10 days and we ALL noticed the downward spiral when she went off the abx. So the Ped. agreed to do a trial of 30 days of Amoxicillin.

 

Does this sound like PANDAS? Can PANDAS cause autistic like symptoms? (foggy brain, daily tantrums/fits, regression, speech delay) Obviously, for some reason the Amoxicillin helps her!

 

She recently started seeing a Psychologist and she thinks she has PTSD from her past medical history. While I don't discount that, I asked about PANDAS since it's already in the family and she didn't even know what it was

 

 

EDITED TO ADD: I left out a key important part of this puzzle! She was diagnosed with a sinus infection at 2 1/2 that persisted despite antibiotics. She had a CAT scan to confirm the sinus infection, so we know for sure she had one. Anyway, coincidentally, that's when all of her tantrums/regression/spacey/foggy weird behavior started! We even had her hearing checked because she acted like she didn't hear us when we spoke to her. We finally got the sinus under control, but the ENT did say if she gets more infections, he'd recommend having her tonsils out. She recently started speech and was diagnosed with pragmatic speech and processing delay. And the ANXIETY. My gosh. She has no finger nails left.

Edited July 28, 2012 by Tattoomom

[cobbiemommy]

Maybe you should trade your Psychologist for an Immunologist. (ha) All kidding aside, has your children's streptococcal titers ever been checked? IGa, IGg, or IGm? It sounds like maybe there is more going on beneath the surface. My child's bloodwork always came back fine, with the exception of low IGg. But when we dug deeper with the help of Dr. B, we found a lot of immune system problems. He is slowly but surely doing better with the right antibiotics and immunoglobulin.

 

Just a thought...

[Tattoomom]

All 3 kids have had strep titers done and they were all normal. When you say low IgG, is it a specific test or are you just speaking of the Immunoglobulin panel? What type of immune system problems does your son have? Does your child need IVIG?

 

 

 

 

 

 

 

Maybe you should trade your Psychologist for an Immunologist. (ha) All kidding aside, has your children's streptococcal titers ever been checked? IGa, IGg, or IGm? It sounds like maybe there is more going on beneath the surface. My child's bloodwork always came back fine, with the exception of low IGg. But when we dug deeper with the help of Dr. B, we found a lot of immune system problems. He is slowly but surely doing better with the right antibiotics and immunoglobulin.

 

Just a thought...

[beeskneesmommy]

Amox worked for my son's Strep the 1st time and then became worthless. Cephalexin worked for a couple more bouts of Strep, then worthless. Strep kept coming back and with it, more prominent PANDAS symptoms. After he had his tonsils out, he had a major episode and my beautiful boy looked severely Autistic for several days until the Augmentin I insisted upon kicked in. That was 9/2010. It has been a long road, but ALL of the symptoms that you are describing are what my son looked like on and off, to a larger or lesser degree, throughout the process of slowly healing over the past 2 years. I would get your kiddo to a specialist ASAP. We see several, but primarily Dr. Bouboulis who has taken our son very far over the last year. Best to you!

[Tattoomom]

Thank you so much for your reply! I needed to hear that these symptoms can be PANDAS.

 

 

Amox worked for my son's Strep the 1st time and then became worthless. Cephalexin worked for a couple more bouts of Strep, then worthless. Strep kept coming back and with it, more prominent PANDAS symptoms. After he had his tonsils out, he had a major episode and my beautiful boy looked severely Autistic for several days until the Augmentin I insisted upon kicked in. That was 9/2010. It has been a long road, but ALL of the symptoms that you are describing are what my son looked like on and off, to a larger or lesser degree, throughout the process of slowly healing over the past 2 years. I would get your kiddo to a specialist ASAP. We see several, but primarily Dr. Bouboulis who has taken our son very far over the last year. Best to you!

[1tiredmama]

The whole thing screams PANDAS to me. Has she been tested for mycoplasma?

 

My ds seems like he has Aspergers, but I feel certain that it is a PANDAS symptom because he was not always like that. Your little one definitely needs a PANDAS eval.

Edited July 29, 2012 by 1tiredmama

[nicklemama]

Many PANDAS kids are incorrectly diagnosed w/ autism or probably more commonly the Asperger's version. My DS is one of those kids. Once we started treatment for PANDAS, the Asperger's type behaviors slowly disappeared.

[EAMom]

She sounds like a text book case of PANDAS.

 

 

I posted here years ago about my son, who started ticcing at age 5, after a bout with Mycoplasma. His Psychiatrist said he has a mild case of Tourettes, but antibiotics really help him when he has a flare up of tics so it's hard to say. He also takes Intuniv and Zoloft and is doing quite well.

 

Back in November of 2010, his younger sister started burping constantly and we thought it might be a tic but took her to the doctor in case it was acid reflux or something of that nature. To our surprise, she tested positive for Strep throat! Along with some OCD's (she has to burp 148 times before she falls asleep), she won't step on yellow lines, she's obsessed with time, she picks her fingers around the cuticles until they are bleeding and down to the meat) and horrible nighttime regression. She was diagnosed with PANDAS due to symptoms. Her blood work was all normal.

 

My 3rd child is who I'm concerned about..... She had Autoimmune Neutropenia from 7 months old- 3 1/2. She's almost 4 now. During this time. she's endured weekly blood draws, weekly injections at home, countless ER visits, hospitalizations, a bone marrow biopsy, etc... At 2 1/2 she started having HORRIBLE TEMPER TANTRUMS. Way beyond normal for a toddler. She would scream at the top of her lungs. Sometimes we would know why, sometimes we had no idea. Sometimes she would wake up this way in the morning. She would keep us up at night screaming, fighting sleep. She's very hard to console. Most days, she seemed almost in a fog, almost spacey. We noticed her language development slowing and some regression with things she once knew (like colors and shapes) She has been very difficult to potty train. I was very worried and concerned she may have autism.

 

And then she got a UTI. And was given Amoxicillin. WOW! Ironically, she seemed to perk up. She was chatting with us up a storm. Her personality came out and she seemed much calmer. The entire family noticed the change in her on the antibiotic!! Already having PANDAS kids, we spoke to the Pediatrician immediately about the change we saw. She finished her Amoxicillin and 2 days later, had strep! 2 days after a 10 day course of Amoxicillin! So she went back on for another 10 days and we ALL noticed the downward spiral when she went off the abx. So the Ped. agreed to do a trial of 30 days of Amoxicillin.

 

Does this sound like PANDAS? Can PANDAS cause autistic like symptoms? (foggy brain, daily tantrums/fits, regression, speech delay) Obviously, for some reason the Amoxicillin helps her!

 

She recently started seeing a Psychologist and she thinks she has PTSD from her past medical history. While I don't discount that, I asked about PANDAS since it's already in the family and she didn't even know what it was

 

 

EDITED TO ADD: I left out a key important part of this puzzle! She was diagnosed with a sinus infection at 2 1/2 that persisted despite antibiotics. She had a CAT scan to confirm the sinus infection, so we know for sure she had one. Anyway, coincidentally, that's when all of her tantrums/regression/spacey/foggy weird behavior started! We even had her hearing checked because she acted like she didn't hear us when we spoke to her. We finally got the sinus under control, but the ENT did say if she gets more infections, he'd recommend having her tonsils out. She recently started speech and was diagnosed with pragmatic speech and processing delay. And the ANXIETY. My gosh. She has no finger nails left.

[WorriedDADNMOM]

Yeah screams Pandas is right on!!!!!

 

I just find this so comical yet so maddening!!!!! Everyone has the same round about story. Infections with behavior issues then improvement after abx or high fevers or treatment for Pandas.

 

My dd6 came down with tics post asymptomatic strep infection. She had been a mess really for quite some time------very Aspergerish and even some of the Autism similarities/ADHD/Sensory stuff/Mutism. We have learned about it after the Pandas Diagnosis and Pyrrole disorder diagnosis. Looking back, wow I wish someone would have told me to look at infections as a possible link to behavioral stuff

 

I would recommend a DAN doc too!!! Best of luck!!