[luvmytwo]

Hi Ladies,
I don't post here that often; I usually just lurk and find what I need. You moms are great.
My 4yo has recently developed motor tics and has progressively gotten worse it seems day to day. His dr. says he probably has what is called Pediatric Autoimmune Neuropsychiatric Disorder After Strep.....or PANDAS for short. I have never heard of this. He was sick last month with fever but never complained and got over it quick. So he was never treated with antibiotics.

Had anyone here had to deal with this? I am worried about this and just want to connect with other moms who have.

Thanks,

 

[mama1803]

Dr. Ken Bock's book, Healing the New Childhood Epidemics talks about PANDAS. I was actually reading that book because my ds suffers from multiple allergies. He has also had facial tics on and off for the past year. According to Dr. Bock, tics can be due a magnesium deficiency as well as PANDAS, though my understanding of PANDAS was that there were other symptoms in addition to the tics.

I highly recommend Dr. Bock's book--it outlines the course of treatment as well as the specific blood test used for diagnosis of PANDAS.

 

[sbgrace]

I was doing some reading a while back about PANDAS and I came across some information that made me think that antibiotics early in on the onset could help. I'll see if I can find the links. My take away is aggressive treatment initially is going to be more effective than trying to battle a chronic strep infection later. So I'd take action fast in your circumstance. I've decided strep is one time I'll use antibiotics based on this risk alone.

 

[sbgrace]

Here is one link about antibiotics at outset.
http://www.medscape.com/viewarticle/432046
If you google ch3nutrigenomics and register you can search PANDAS Strep Tics, etc. and you'll get lots of biomedical treatment information as well as tests and such.

 

[luvmytwo]

Thanks for you reply. I just got the test results back and he tested negative for strep; so our initial diagnosis is not PANDAS. Our ped. seemed sure that is probably was PANDAS.
I am a little more worried now that it is not; I am not sure what else it could be. We have no history of Tourette's or any other tic movements in our family. I have a cardiologist and neurologist appt. next week for him. I will let you know how that goes.

 

[aniT]

Quote:

Originally Posted by luvmytwo Thanks for you reply. I just got the test results back and he tested negative for strep; so our initial diagnosis is not PANDAS. Our ped. seemed sure that is probably was PANDAS. I am a little more worried now that it is not; I am not sure what else it could be. We have no history of Tourette's or any other tic movements in our family. I have a cardiologist and neurologist appt. next week for him. I will let you know how that goes.

I think a PP said it could also be due to Magnesium deficiency. Maybe you should look into symptoms of this and see if he has any others. This would actually make sense.. I sometimes get ticks in my eye (man that is annoying) when I haven't taken magnesium for awhile.

 

[didelphus]

Sometimes that is when tics/OCD start to show up. I wouldn't worry too much, yet, though. Meet with the specialists and see what they say. I have a tic-ing OCD child with rather mild tics. It's not tourettes but the tics seem to be more of a part of the OCD. Sometimes the tics start rather violently but then fade out rather quickly. It may be something that works itself out. My daughter is much worse when stress is involved!

 

[A&A]

My son had tics for about 6 months and then they went away. They could come back in the future; it's hard to know. But having a tic or tic disorder doesn't necessarily mean that it's permanent.

Also, your son isn't on any ADD/ADHD medication, right? Those can cause tics.

 

[luvmytwo]

I am just hoping it is just a tic disorder that will eventually resolve on it's own. I am just so worried that it is something else.
I will look into magnesium deficiency; I haven't wanted to google too much on this and read things I wouldn't want to see yet; but at the same time. I want to have some kind of idea what it may be. I have only looked up PANDAS and a natural therapy came up that mentioned magnesium.
Thanks moms, I feel a little more at ease. I have his two appt. on Mon. and Tues. and hopefully I will have an idea on what may be going on.

 

[mbravebird]

A good brand of magnesium is Natural Calm, and if he doesn't want to take it that way, Epsom Salts baths are great for upping the blood content of magnesium.

Hoping you get some more information soon.

 

[luvmytwo]

I am still just praying it is a tic disorder. I can deal with that. I don't have any answers just yet. The same day of ds neurologist appt.; he woke up and complained his neck was hurting. He layed down and then could not get up. I even tried to move him to the couch and he just screamed in pain. I ended up calling the paramedics because I was so afraid to move him.

In the end, ds has torticollis of the neck caused by his frequent tic movements. The neurologist we saw is concerned because she has never seen anyone with tics have a locked up neck. I did tell her how often he would "tic"; which was every 30 sec. or so; and this has been going on for over 4 weeks.

I knew nothing about tics when this started and of course; you think the worse that something is wrong with the brain. Reading online and talking with you moms has helped me to calm a bit and know that some tics are normal.

BTW, my son has never had a vaccine, he has been totally healthy up until all of this. I have not been given the third degree like I expected with all dr. visits, that has been nice.

Anyway, I feel like I am all over the place in this post. He is in PT for his neck and his MRI is next Friday. Any other info. you can send my way would be greatly appreciated!

 

[sbgrace]

Is it an open or closed MRI? Are they doing sedation? If he's not being sedated and especially if closed let me know because you'll want to prepare him.

Exposure and response prevention (behavioral therapy approach) can help treat tics if you end up with one that "sticks". Hopefully this is temporary. I do think he's at the right age for tics to appear (and disappear to sometimes).

 

[luvmytwo]

He is being sedated for the MRI, it is without contrast. I am not sure whether it is closed or open. Were you asking just in case he was going to be awake?

I know the neurologist mentioned doing the MRI on his cervical spine. I wonder if I should call and ask them to just do his whole head? I was thinking of that today.
Also, I was thinking back to when he and his older brother would wrestle around and I remember a few times Ethan crying because he hurt his neck. I wonder if an injury could be causing all of this. The neuro. did not think that this was brought on by the fever he had in March.

 

[Annikate]

I know this is an old thread, but I was searching about tics and wondering how your son was.

 

[sbgrace]

I have a friend whose daughter started suddenly displaying severe OCD this past month. Doctors were less than helpful and admitted they hadn't ever seen it and didn't know how to treat. In short, there are doctors and resources available who specialize in this area and she got help for her daughter.

Here are some links she used for information and/or help in case anyone else is dealing with this sort of thing and finding help difficult.

http://www.pandasnetwork.org/impactdad.html

http://www.pandasresourcenetwork.org/about-pandas/patient-information.html

http://www.latitudes.org/forums/index.php?showtopic=11008

http://findarticles.com/p/articles/mi_m0ISW/is_2002_July/ai_87720062/pg_2/?tag=content;col1

http://webpediatrics.com/practice.html

http://www.site.neurokidsr.us/Home.html

 

[eireann]

Quote:

Originally Posted by luvmytwo

He is being sedated for the MRI, it is without contrast. I am not sure whether it is closed or open. Were you asking just in case he was going to be awake?

I know the neurologist mentioned doing the MRI on his cervical spine. I wonder if I should call and ask them to just do his whole head? I was thinking of that today.
Also, I was thinking back to when he and his older brother would wrestle around and I remember a few times Ethan crying because he hurt his neck. I wonder if an injury could be causing all of this. The neuro. did not think that this was brought on by the fever he had in March.

How is your son? I hope it resolved itself. If not, did you by chance have him tested for Lyme and Lyme coinfections?