Trying to figure out what's going on with my 6yo DS

[MelindaR930]

I originally posted on the Tourette's/TICS forum so I am just transferring the info I posted over there because Chemare suggested I should.

 

Around the end of May my son, now 6, started having a tic. Rapid blinking. It is at times obvious that it is brought on by stress or him being nervous, sometimes it would just happen. I also notice watching TV it tends to increase the occurrence. He had this rapid blinking for about a month when he was 3 1/2 but it went away.

 

Since that time, one of my daughters friends asked him 'Why do you blink constantly??' and I immediately noticed a change in the tic. Instead of rapid blinking he now kind of stretches his face into an oval, making an O with his mouth and looks upward with his eyes. I think this helps him to not blink constantly. He still doesn't blink "normally". He now does "the face" often throughout the day, every day.

 

We took him to see a D.O. yesterday and she wants to put him on Clonidine 0.1mg. We just aren't comfortable putting him on meds unless there is no other option. He starts Kindergarten this year and we really don't want him made fun of, you know how cruel kids can be.

 

One thing I should note if he received his first MMR on 3/17/10. I am not sure if that would have brought this on with that much of a delay between the two.

 

So I am at a total loss at where to start testing, the natural way. My heart breaks for him when we are out around other kids and he starts doing it. I believe he is fairly aware of when it starts happening. He told his Daddy when it first started happening, 'I blink too much' and that it bothered him.

 

I realize his tic is mild but have been wondering about other things he does and whether it is all connected.

 

He also has begun wetting his pants during the day, 3 times just yesterday. He is biting his sister. He refuses to get himself anything to eat and insists that he can't do it and that we have to do it. He throws a huge tantrum if we don't. If we go somewhere in public, he is glued to me, almost to the point that I can't walk, because he is afraid I am going to leave him.

 

I am wondering if this could all be connected somehow? Why does he seem to be regressing?

 

Any help would be greatly appreciated.

[dcmom]

Yes- there could be a connection. Pandas can cause all of the symptoms you describe.

 

I would start by immediately getting to a doctor for a strep culture (not a quick test). I would also get an rx for strep titers: aso and antiDnase. These can be helpful, or meaningless- but it is good to have them done initially.

 

Please tell us where you live, so we can request a good pandas doc. Unfortunately there are only a handful of docs that can successfully treat pandas- and it is important not to waste time and get to them.

[MelindaR930]

I am in North Central Montana. Willing to drive where ever in Montana because specialists are hard to find here.

[MelindaR930]

Also the strep culture, this is just the throat swab that they do, but tell them I don't want a rapid test? And the other 2 tests, are those blood draws or what?

[Fixit]

Yes those are blood draws...and get tested for mycoplasma pneumaie igg and igm...i would say those are your starter tests...

IMHO.. its all pandas/pitands...

in your particulare case his condition could have been laying dormant till you had the vacine...but in reality at this point for a lot of people, many never know the exact trigger...the goal now beccomes to see if you can find something irritateing his system...and find his particular path to recovery...

[peglem]

Also the strep culture, this is just the throat swab that they do, but tell them I don't want a rapid test? And the other 2 tests, are those blood draws or what?

You could have them do the rapid and send out for 72 hour culture if that comes up neg.

The titers (ASO, antiDnaseB) is a blood test.

 

I grew up in Montana!

[mkur]

Start checking into your school district's policy on shots. I delayed giving my younger son his follow up MMR because:

1)he had delays in speech

2)doctor (ped) said he wasn't very social - little eye contact

3)he had an older brother who had pandas - autoimmune problem - (12 years ago there was no treatment plan except to treat symptoms TS/ADHD/OCD - trifecta) Ped believed in pandas - had a brother who died from RF - took strep very seriously but couldn't treat pandas.

 

The doctor (ped) wrote a letter to the school recommending delaying MMR until my younger son gained more progress in speech- the doctor knew how to handle this - it was he suggestion. Every year I would need a new letter. This ped retired and the new ped would not give me a letter but my son had made a lot of improvements. I read somewhere that you really don't need a letter that it is your right but every school district has different policies - this was 8 years ago.

 

The most important lesson I learned: Trust yourself - you know this kid better than anyone.

 

Please rule out PANDAS first. Good luck.

[MelindaR930]

In your experience, if I go in to the doctor and start asking for all of these tests, aren't they going to look at me like I'm nuts? Don't get me wrong, I don't mind looking like I'm nuts, lol, but if they refuse?

[peglem]

In your experience, if I go in to the doctor and start asking for all of these tests, aren't they going to look at me like I'm nuts? Don't get me wrong, I don't mind looking like I'm nuts, lol, but if they refuse?

Its a good thing you don't mind looking nuts- you'll get that a lot!

Its not unheard of for people to make up stories to make getting the tests easier. I haven't had to because I had a very good relationship w/ my daughter's pediatrician.

[thereishope]

Welcome. In my experience, even though a rapid does run a chance of a false negative, I always do the rapid test too. If the rapid comes back postive, you get your antibiotics faster. If it comes back negative, make sure they culture it and ask for antibiotics while waiting for the results. If the parent asks for a script while waiting for culture result, the ped may give them. But only if you ask.

 

Here's a link to OCD tendencies as seen by parents on this forum. Look at the list and see if anything sounds like your son. The food part you describe sounds like a OCD tendency buried in the reason. I wonder if there's more...

http://www.latitudes.org/forums/index.php?...ic=6153&hl=

[MelindaR930]

So from reading the list

 

Harm to self or Others- * Inability to separate from a parent or authority figure. (Explained in my first post, sometimes I feel like I can't walk he is holding so tight to me)

 

Doubting- * asking permission? DS constantly will ask if he can go to the bathroom even at home. (Didn't ask at all yesterday when he had the 3 accidents, no accidents so far today but he does have accidents multiple times a week during the day, have always thought maybe he was having too much fun and didn't want to stop, but 3 times in one afternoon?!?)

 

Symmetry Urges- * If he wants a pb&j there can't be too much pb or jelly, he won't eat it otherwise. But he refuses to make it himself, he will tear the bread with the butter knife, so instead he throws a fit.

[MelindaR930]

So from reading the list

 

Harm to self or Others- * Inability to separate from a parent or authority figure. (Explained in my first post, sometimes I feel like I can't walk he is holding so tight to me)

 

Doubting- * asking permission? DS constantly will ask if he can go to the bathroom even at home. (Didn't ask at all yesterday when he had the 3 accidents, no accidents so far today but he does have accidents multiple times a week during the day, have always thought maybe he was having too much fun and didn't want to stop, but 3 times in one afternoon?!?)

 

Symmetry Urges- * If he wants a pb&j there can't be too much pb or jelly, he won't eat it otherwise. But he refuses to make it himself, he will tear the bread with the butter knife, so instead he throws a fit.

[thereishope]

Extreme separation anxiety is a symptom of PANDAS. Asking permission for something over and over when they already know the answer or continuing to ask even though the answer has been given is a form of reassurance OCD. A lot on here have/had that. The PBJ could be symmetry or could be needing that "just right" feeling. With that "just right" OCD, if it's wrong it's worse than finger nails on a chalk board. That is an AWFUL feeling, causes an overwhelming anxiety to them and thus why a meltdown will occur. At age 6, getting upset over the absence of a perfect PBJ should not occur. Maybe a "Mom, you know I don't like it that way", but not anxiety. But with a 6 year old with PANDAS, yes, it can occur-no doubt. My son was 5 when PANDAS surfaced. He is now 6, almost 7.

 

As for the bathroom accidents, when a child is in a PANDAS exacerbation, they will have increase urination. I forgot how the signalling in the brain occurs and why this happens, but it is a symptom. So is bed wetting.

Edited July 15, 2010 by Vickie

[MelindaR930]

Also forgot, because I never have really thought of it as a problem, but we call him our little noise maker. It doesn't seem to be a constant, but perhaps more when he is sleepy or hyper. He will make the same noise over and over with his tongue and make the sound with it, kind of like whirl whirl whirl. Not really sure how to explain it. It isn't the same noise every time either.

 

I appreciate all of the responses. His doctor is out of the office until Monday (the one we just saw about the TIC and I didn't even think to mention anything else going on). I am considering just contacting another doctor in the same practice to see if we can go ahead and get the tests done tomorrow.

[kimballot]

Welcome - it sounds like you found the right place to be and you are getting good advice. A description of the tests you are talking about can be found here http://www.pandasresourcenetwork.com/about.../diagnosis.html and some information for doctors can be found here http://www.pandasresourcenetwork.com/about...nformation.html You may want to print that and have it handy to share with your doctor.

 

Good luck!