New here and desparately in need of help

[racie0417]

This might get long, but I need local resources (PANDAs friendly doctors) and any advice you can give.

 

I have two boys: DS(5) has diagnoses of PDD-NOS, anxiety disorder, developmental coordination delay, and is highly gifted and DS (almost 4) has sensory issues and lots of hyperactivity. On any given day our house is quite wild.

 

In late February, both of their behaviors intensified for no apparent reason. DS(5) was crying at school and not wanting me to use the carpool lane. DS(almost 4) was not wanting to go to school at all. They both love school. DS (5) is very mild mannered but started physically attacking one of his autism therapists. DS (almost) 4 bebame obsessed with Star Wars Episode 3 and would only want to watch that or discuss that movie. He was also screaming non-stop.

 

Within a week of this (which I thought was just a spurt of bad behavior due to a growth spurt), DS (almost 4) woke in the night crying that his ear hurt and his eyes looked goopy. I took him to his pediatrician--no ear infection, no pink eye, no fever, but his rapid strep was positive. At that point, I became a bit concerned about P.A.N.D.A.S. On a total whim, I took DS (5) to the ped the next day; he was showing ZERO symptoms of anything, but his rapid strep was positive. As it happened we saw two different peds. DS (almost 4) was given Augmentim due to his yucky eyes and DS (5) was given amoxicillin.

 

They finished their scripts on March 8th. That very same night, I woke with a sore throat and I tested positive for strep on a rapid swab.

 

This week our problems really began. Some of these behaviors had waned last week but were back in full force this weekend. Tuesday at 3am DS (5) woke and said he had a headache (which was my main symptom. That morning DS (almost 4) had goopy eyes. We went back to the peditrician. Both were swabbed for strep. DS (almost 4) was negative on the rapid test and they did not culture it. DS (5) tested positive on the rapid test, but the ped said that it was a false positive due to his recent bout of strep. They cultured it and it came back negative yesterday.

 

By yesterday DS (5) was complaining non-stop of headache, it hurting to swallow, and tummy pain. He was awake at 4:30am yesterday because he was in too much pain to sleep. Same thing today.

 

I took both of them to MY doctor this morning who did rapid strep tests on both of them. This time DS (5) tested negative and DS (almost 4) tested positive....the opposite of what happened 2 days ago.

 

Does this sound like P.A.N.D.A.S? How do I go about finding a pediatrician that will adequately treat their symptoms, especially in the middle of nowhere Alabama. Finally we are military and are moving this summer to about an hour away from the research triange area.

 

Any and all help is appreciated!

[queenmother]

This might get long, but I need local resources (PANDAs friendly doctors) and any advice you can give.

 

I have two boys: DS(5) has diagnoses of PDD-NOS, anxiety disorder, developmental coordination delay, and is highly gifted and DS (almost 4) has sensory issues and lots of hyperactivity. On any given day our house is quite wild.

 

In late February, both of their behaviors intensified for no apparent reason. DS(5) was crying at school and not wanting me to use the carpool lane. DS(almost 4) was not wanting to go to school at all. They both love school. DS (5) is very mild mannered but started physically attacking one of his autism therapists. DS (almost) 4 bebame obsessed with Star Wars Episode 3 and would only want to watch that or discuss that movie. He was also screaming non-stop.

 

Within a week of this (which I thought was just a spurt of bad behavior due to a growth spurt), DS (almost 4) woke in the night crying that his ear hurt and his eyes looked goopy. I took him to his pediatrician--no ear infection, no pink eye, no fever, but his rapid strep was positive. At that point, I became a bit concerned about P.A.N.D.A.S. On a total whim, I took DS (5) to the ped the next day; he was showing ZERO symptoms of anything, but his rapid strep was positive. As it happened we saw two different peds. DS (almost 4) was given Augmentim due to his yucky eyes and DS (5) was given amoxicillin.

 

They finished their scripts on March 8th. That very same night, I woke with a sore throat and I tested positive for strep on a rapid swab.

 

This week our problems really began. Some of these behaviors had waned last week but were back in full force this weekend. Tuesday at 3am DS (5) woke and said he had a headache (which was my main symptom. That morning DS (almost 4) had goopy eyes. We went back to the peditrician. Both were swabbed for strep. DS (almost 4) was negative on the rapid test and they did not culture it. DS (5) tested positive on the rapid test, but the ped said that it was a false positive due to his recent bout of strep. They cultured it and it came back negative yesterday.

 

By yesterday DS (5) was complaining non-stop of headache, it hurting to swallow, and tummy pain. He was awake at 4:30am yesterday because he was in too much pain to sleep. Same thing today.

 

I took both of them to MY doctor this morning who did rapid strep tests on both of them. This time DS (5) tested negative and DS (almost 4) tested positive....the opposite of what happened 2 days ago.

 

Does this sound like P.A.N.D.A.S? How do I go about finding a pediatrician that will adequately treat their symptoms, especially in the middle of nowhere Alabama. Finally we are military and are moving this summer to about an hour away from the research triange area.

 

Any and all help is appreciated!

You are wise to be concerned. Sounds like something is definitely not right. I don't know any doctors in Alabama but I can make a suggestion for NC. Dr. Iliana Perrin is a pediatrician at UNC Children's hospital in Chapel Hill, NC. I am told that she actually worked with Dr. Swedo on the PANDAS study. We are new to all of this and have not seen her yet but at least it's a start for you and worth checking out. For what it's worth, my daughter tested resistant to amoxicillin so it is useless against strep for her. I have read that this is the case for many. Trust your gut and, hopefully, someone will know a doctor near you in Alabama so that you can get your precious boys treated sooner than later.

Stay strong.

[WorriedDADNMOM]

Hi Racie welcome! I am sure others will comment. It can and does get better. Keep your head up and keep informing yourself. Keep being a good advocate for your kiddos.

 

For us and many, I "think" a severe strain of strep has been going around. We have had multiple kids close to us come up with Pandas,Pans,tics, anxiety,rage, adhd etc.......the whole pandas picture. Here is a synopsis of our journey that resembles fairly closely others I think.

 

1) De-bulk any infections that may be lingering or chronic. Long(er) term than normal abx. Zithromax for us. Helps chill out the immune system.

2) Remove any immune/allergy triggers........GF/CF, cats etc....... More immune chilling out.

3) Treat any underlying vitamin and mineral deficiencies. Helps restrengthen body and immune system to be able to deal with future viral and bacterial infections.

 

My recommendation would be to get to a Integrative Pedi or DAN pedi. Regular Pedis did nothing for our DD's. Here are some links. They are worth watching.

 

 

Video of DAN doc talking about Autism Pandas Immune function and other stuff. One of our first ah-ha moments

 

http://www.integrativepediatricsofohio.com/resources/dr-lewis-videos/ Our doc we ended up finding and going to who has really helped.

 

 

 

PM me if you have any questions or need anything. Next post will have some more links.

[WorriedDADNMOM]

Another good informative doc to listen to.

 

 

 

Hope this all helps set you on a path to healing and functioning well!!!!!!

[pr40]

you may want to try ibuprofen and steroids and a longer course of abx.

if kids develop OCD, they may be candidates for NIH study on PANDAS.

take a look at the Pediatric Acute Neuropsychiatric Symptom Scale on this forum if you have not done it already.

Best of luck

Edited March 15, 2013 by pr40