To those with children with constant AIWS symptoms

[lilbig]

Has anything stopped or improved the symptoms?

Hello,
My son started having constant (every second, 24 hours a day) symptoms
on January 30th.

His experience with AIWS began in early 2010 (at that time we thought
it was night terrors). In August of 2011, after a high fever, he
began having episodes during the day. Over a period of six weeks he
experienced daily episodes (from 2 to 20+ daily). From the end of
September through mid-January he experienced only occassional episodes
(1 every few weeks).

He currently appears to have three levels of symptom intensity. The
first and most minor is what he experiences constantly; any person or
object not in motion will appear to get "big and little." If he stares
at a person or object this causes a more distorted, scarier "big
little" for a period (seconds to minutes). He tries to avoid staring
but this level happens seversl times daily. The third level and
scariest is at night (occassional). He also sees swiggly lines run
across the walls.

He has had an MRI and 3 EEGs, all normal. He began taking Topamax
last week.

Please let me know if anything has helped your child.

Thanks,
Layne

[AIWS mom]

Hi AIWS friends.  Layne, thank you for asking about my son.  As an update and info to you all:

My son, Mason, is still living in 24/7 "wonderland".  It started on October 9th, 2011.  Almost eight months.  He has not had 5 minutes of relief from his visual distortions.  After missing 4 months of first grade, he has slowly acclimated back into school, one step at a time.  He's even playing soccer and baseball.  He says he's learned to deal with it and he now knows that he's not going to "fall into the big V in the ground" in front of him.  His resilience amazes me.  

In the last few months, he's had a complete GI review including an endoscopy, pill camera endoscopy, and colonoscopy.  We ruled out any carcinoid tumors that could be causing the abdominal pain and releasing hormones and causing the neurological symptoms.  Good.

He then had another distortion start - the world now "tilts" left and right nonstop.  This hit about a month ago.  We ended up in the ER, got admitted to hospital, did another EKG, brain MRI, and echo/EEG.  All normal.  

I have been working with the National Institute of Health's Undiagnosed Diseases Program team in DC.  They are very interested in Mason's case and this rare AIWS issue, and are strongly considering taking his case, which is incredible as they only take a few dozen cases a year out of thousands of applicants.  If accepted, they will pull a team of dr's from all over the US to meet Mason in DC to try to explain what he's dealing with and try to find some answers for relief.  

That program team said the only last thing Mason needed was to have a complete metabolic work up done for rare neurological disorders.  We saw a pediatric geneticist at Children's Memorial Chicago.  Results were normal and forwarded to the NIH.  Now we're waiting to hear from them.  

Layne, we saw Dr. Rothner at the Cleveland Clinic.  He threw his hands up and it was more than slightly upsetting to me.  He runs the department there, so you may be scheduled to see him.  He will know Mason and his case if you wish to mention us.  Also, we personally had a terrible time with the Topomax.  I can't begin to tell you how debilitating the drug was for my son.  I really can't recommend it. 

Also, we drove Mason to Des Moines Iowa to try the Irlen Lenses.  They offered no relief.  It sucked.  But I know they really helped Chloe in Australia.

Anyway, if the NIH takes our case, I will let you all know and keep you posted as to the developments.  Thanks so much for your thoughts and prayers.

Kindly,

Brandy (Mason's momma)

[Kate]

Thank you for listening to your son and attempting to solve the problem! When I complained as a child about episodes on an almost daily basis, I was told I was a hypochondriac. In my 20s when the tonic clonic seizures started, we realized the AIWLS were simple partial seizures and that I was EPILEPTIC!! and I should have been listened to.

 

On a side note, the lamotrigine and carbamazepine I take for seizure control has almost completely removed the AIWLS episodes, and when I do get them it's for a few minutes at most.

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