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My journey to help my son...

Oct 22, 2008 - 4 comments

Tourette Syndrome








muscle spasm






Urinary Incontinence


bowel incontinence



It is for my son that I am here.  We are trying, trying, trying to not only find the right diagnosis for him, but find him some relief, and so it is for him that I write the story of his journey.

We adopted our son from Russia when he was 14 months old.  He is absolutely the joy of our lives.  He is a wonderful guy with a HUGE heart.  His issues started from day one when we brought him home, and we have been searching for nine years now to try to untangle the web of symptoms.  

It started with sleep issues.  He would not sleep through the night, he would wake up screaming, scared and in pain.  At first he wasn't old enough to communicate this, but as he got older, he was able to rub his legs (his shin area) and say 'oweeee'.  This was a nightly occurence.  Many times a night.  Of course, we discussed this with the pediatrician, and he did some x-rays and blood work.  Everything seemed fine, and he chalked it up to 'growing pains'.  He did not sleep through the night until he was 5 years old.  Even now, at 10 years old, he wakes up many nights scared and in pain.  

We noticed he had some developmental delays.  This was not uncommon in children adopted from an orphanage, so we weren't too concerned.  He just needed some extra help.  We enrolled him in day-care with special teachers, we have sought tutors, he is in special education at school, and now at 10 years old, the gap between him and his peers continues to grow.  He has had neuropsych testing, and it showed issues with processing and a low IQ (71).  

In addition to the learning disabilities, he has always had a hard time focusing and communicating.  This has gotten worse over the years.  At 6 years old he was diagnosed with ADHD.  We eventually tried medication (Metadate CD), and it seemed to help quite a bit.

From the very beginning, we noticed him doing funny things like continually licking his lips, or twisting his ears, or moving his foot around, flicking his toes or fingers, etc.  We didn't pay much attention to this, as it wasn't an issue, and sometimes we thought he was just trying to be silly.  When he was 8 years old he started shaking his head constantly, so we sat up and took notice.  We talked to the pediatrician.  We immediately took him off the stimulants he was taking for ADHD to see if the head shaking would stop.  It didn't, it only got worse.  After talking about different 'things' he has done over the years with the pediatrician - movements and noises, he said that there is a good chance he has Tourette Syndrome.  This diagnosis was later confirmed by a neurologist.

About the same time that we were discussing the possible diagnosis of Tourette Syndrome, he started having urinary incontinence issues.  He would come home from school, every day, and his pants would be wet from the crotch area to his knees.  After about a week, I called the pediatrician and asked if maybe we need to check him out, maybe he has a bladder infection or something.  He brushed it off - after all, he's a kid, and kids have accidents.  Well, I wasn't buying it.  These weren't accidents.  Over the weekend I had kept a close eye on him, and after getting dressed, I would check him every 45 minutes or so, and his underwear would be wet in the front. So, we would change, and again, check in 30 - 45 min.  Again, wet, just in the front.  Well, after doing this a while, I started paying more attention when he got out of the shower.  He was dripping constantly.  This was no accident - this was leakage!!  I explained that to the pediatrician, but he wasn't concerned.  I decided it was time for another opinion.  

We found a new pediatrician, and she has been wonderful.  She got into gear right away and started running tests.  Urinalysis - came back fine.  Blood tests to check thyroid, vitamin and mineral levels, infection, and so on, and so on.  Everything was fine.  She sent us to a Urologist.  They ordered an MRI to check for tethered cord, and also took a look at the brain to see if anything was going on there, it all checked out fine.  The only things that showed up were a small syrinx in his thoracic spine (too small and not in the right location to cause any of these problems), a partial sacralization of his L5 (just a congenital deformity, nothing to worry about), and an elevated FLAIR signal in his brain (which they said was normal because he was under general anestesia and on oxygen).  We went on to do multiple tests with the Urologist.  KUB x-rays, ultrasounds, urodynamic study, even physical therapy to help him learn to control the pelvic floor muscle.  After a few months of therapy, the therapist told us that there was no use in continuing, that he was having involuntary spasms of the pelvic floor muscle that he was not able to control (it could be seen plainly when she hooked the leads up to his pelic floor muscle), and it had to be neurologic in origin.  The only thing we found from the other tests the urologist performed was that he had a high voiding pressure for his age.  He started him on Ditropan, which helped some, but not enough to remain dry.  Our only option was to put him back in pull-ups.  Almost two years later now, and he is still incontinent.  Both urinary and bowel.  

In the meantime, his motor and vocal tics continued to get worse, and we noticed he would have bouts of good and bad days.  On the good days, he was thinking more clearly and was more social.  On the bad days he was frustated, could not think clearly and was not very social.  I continued to read up on Tourette Syndrome, and decided to try an elimation diet.  It did not help.  The doctor decided to put him on Risperdal to help the mood swings and the tics.  It did help the tics tremendously, and his mood seemed to improve, but he still had the good and bad days.  On the bad days, he just seemed to not be able to focus, think clearly or find his words.

About a year ago, he started complaining of numbness and tingling in his hands and feet, and complaining about his back hurting.  Back to the pediatrician, more x-rays and another MRI.  The syrinx had not changed, and nothing else was found.  

He also started having hallucinations, both auditory and visual about a year ago.  They were really bad for a period of about a month, and then have only been occasional and sporadic since then.  He would see people that weren't there - and he knew they weren't real.  He would hear voices and noises that weren't there, sometimes so many at once that he couldn't understand what was being said.  They were not voices he recognized.  No explanation from the docs on that one.

Over the past year, he has had increasing amounts of pain and numbness and tingling.  The tingling has been in his hands, feet, legs, arms and head.  He has described it as tingling, buzzing and a feeling of bugs crawling under his skin.  The pain comes from muscle spasms, which get worse all the time.  It started mostly in his legs, and now has progressed to his neck, back and arms.  When these happen, you can visibly see and feel a knot.  It is tender to the touch.  Sometimes the knot stays for days.  It was thought initially that the muscle spasms might be caused by the Risperdal.  The doctor added cogentin to combat these side effects.  It did not help much, if at all.  The neurologist decided to do yet another MRI (again, under general anesthesia) to make sure the syrinx was still unchanging.  It has not changed.  Eventually we decided he needed to come off the Risperdal.  After weaning him off, and allowing sufficient time for the medication to get out of his system, the muscle spasms still did not ease up.  Nor has the numbness and tingling.  I have also come to the realization that some (not all) of his tics don't seem to be tics at all.  They are instead things he does to combat the buzzing or tingling sensations.  I realize, there is a fine line between the 'weird feeling' someone gets which makes them have to do a tic, and doing something because they have a weird  It's hard to explain, but there is a difference.  For instance, he will flick or move his fingers in a certain way 'because he has to' (his words), and he says that if he doesn't, it gets 'uncomfortable'.  But then as he walks, he will push the heel of one foot into the top of the big toe on the other foot every couple of steps because it helps to stop the 'buzzing'.  Now to me, these two things seem different.  And, he describes the two sensations totally differently.  And, there are many times where he has tingling or buzzing somewhere, but no movement or pressure of any kind is enough to make it feel better.

Then, about four months ago he started complaining about dizziness.  It became a daily occurence.  The doctor has done sinus x-rays, which were clear.  They checked his blood pressure - lying down, sitting and standing.  That was fine.  We adjusted his allergy medication, it has not helped.  

The about a month and a half ago, he started complaining about not being able to see very well.   Things were blurry, and he even complained of double vision a couple of times.  I took him to the eye doctor.  He got new glasses.  They have helped some, but he still seems to have trouble.

And so, here we are today, with the diagnosis of ADHD and Tourette Syndrome, but all these 'other' symptoms that do not fit into either of those categories.  I am just at a complete loss of where to go from here.  We see a new neurologist soon, and I am hoping beyond hope that he will have some explaination.  I continue to do research, and I truly feel that something else is going on here, but just not sure what it is.  Many of his symptoms seem to fit in the MS realm, but I know there are a lot of things that can mimic MS, too.  Just not sure what tests should be run from here, or were to go....  

If you have made it this far in reading our story, THANK YOU for taking the time to read it, and please please, keep us in your prayers!!  And by all means, if you have any suggestions, let me know!  I will continue to update this as we progress.  

Concerned and Worried Mom (akpack)