Aa
Aa
A
A
A
Close
Avatar universal

Could it be MS?

Our son has a complicated medical history, but I will try to keep it brief for this initial conversation. No significant medical history for mom or dad.

Luke was born 2007 Normal pregnancy. Full term. Sister born  2004 with no issues.

Immediately, Luke had a wetness in his throat and seemed to struggle to feed. We went home from the hospital feeling there was an issue. A week after birth, we randomly caught an episode of SVT at the pediatricians office during an exam for eye discharge. Luke was admitted started propranolol. He continued to struggle to feed. We switch formulas and tried Prevacid based on appts with a peds gastroenterologist. At 5 weeks old, we were admitted under failure to thrive. The NG tube worked and we left the hospital in Nov 2007 with a PEG tube and no diagnosis. MRIs of his brain were normal at 3 months. We felt a Chiari malformation was possible but they did not find one at that time.
We did a tremendous amount of online research and went to Atlanta for second opinion. Multiple swallow studies were done and a narrowing at C4 was detected during barium swallow studies. Our son did better with dilations of the esophagus but the benefits faded within days of the procedure. We were diagnosed with Cricopharyngeal achalasia.

The gastroenterologist referred us to Cincinnati Childrens Hospital. We met with a team of Drs to review Luke's history. A FEES study was done as well as esophageal manometry. We decided to proceed with a myotomy.

The myotomy was successful for 6 weeks. The benefits subsided quickly and we were back to square one.

We were referred to JHopkins for feed therapy. It was determined this wasn't a good fit. We ended up at Milwaukee's Childrens Hospital at age 3. Luke did well with therapy and at age 5 we removed the feeding tube. His heart condition was under control and our cardiologist decided to take him off of the meds. Luke was progressing well.

Aug 2013 at 5 1/2, Luke complained of a elevated heart rate. We put a monitor on him and caught an episode. We went to Atlanta for an ablation surgery in Nov 2013 and the problem is resolved.

In April 2014, Luke started to "fall" more than usual. A few examples: He was sitting on a piece of playground equipment and "zoned" out and fell. He stood up from his desk and fell. While riding his bike he fell and didn't really know why. He never has blacked out or had convulsions. Due to the frequency of these episodes and our pediatrician referred us to a neurologist. He had a sleep deprived EEG and an office Neuro exam and both were normal. The neurologist felt that he was having atonic seizures. He put us on trileptal 3ml twice a day. At this point, this is Luke's only medication. With seizure medication, he had roughly 2 more episodes where he fell for no reason. As I mentioned, he has never "passed out" or had convulsions associated with these episodes.  We went for 6 months with little activity.

October 2014, Luke suggested he had an issue swallowing. We have not had swallow studies in years so we went to Jacksonville FL for a traditional barium swallow. The narrowing remains at C4 with no new findings.

He is in speech therapy and OT. His speech is 5yr level and OT shows some muscular weakness in his upper body. Bilateral weakness more distally than proximally. He is weaker than a normal 7 yr old but not significant. Weaker as you move farther away from the trunk and he uses his trunk strength to compensate.

Recently in the last month, Luke has been complaining that his leg is going "numb" and therefore leading to falls. We went to the neurologist who preformed an office exam and felt that he was fine. We consulted our pediatrician the same afternoon who ordered an MRI of the brain and spine late last week. The initial MRI showed and issue from T4-8. The following day we had an MRI with contrast for the brain, cervical, thorax and lumbar.

A syrinx was found (2mm max diameter) in from T4-T8. We consulted our local neurosurgeon today and we are in need of a second opinion.

His current MRI scan are all clear other than this issue and our neurosurgeon classified this as an idiopathic syrinx.

In the last 2 weeks he is having back pain, numbness and tingljng sporadically in his hands, legs and feet.
Help?  Thoughts and suggestions greatly appreciated!
6 Responses
Sort by: Helpful Oldest Newest
Avatar universal
So sorry for what you are going through.
I have 2 boys, 1 with spina bifida and tethered spinal cord. My #2 has Chiari malformation without syrinx.
The Chiari malformation forum right here on medhelp is a wonderful group with a very knowledgeable moderator. My hope is.that you can get some help there.
We went to Chicago with # 2 for a second opinion. Very happy  with results.
Will keep you and your sweet boy in my prayers.
Regards, barb
Helpful - 0
338416 tn?1420045702
That breaks my heart... wishing your family all the best.
Helpful - 0
Avatar universal
Thank you.  We appreciate all of the thoughts and prayers
Helpful - 0
11119474 tn?1428702170
I'm no help either, but certainly want to off your family hugs and prayers.
~Linda
Helpful - 0
667078 tn?1316000935
If you are really worried about MS there are MS Pediatric Centers of Excellence.  I have no clue if it is MS. I had MS as a toddler so it can happen. They can tell where there is damage to the CNS by the simple neurological exam reflexes and such.  That is how they found my brain damage as a toddler. They did not know it was MS until I was an adult, they did not have MRIs in the 1960's.

I hope you find answers.

Alex
Helpful - 0
9745005 tn?1410044366
Oh my, sorry I don't have anything to offer in the form of advice...just wanted to say that my heart goes out to your family and Luke...what a trooper he is to have gone through so much in his 7 years!  

I pray you can get some answers!

Karen
Helpful - 0
Have an Answer?

You are reading content posted in the Multiple Sclerosis Community

Top Neurology Answerers
987762 tn?1671273328
Australia
5265383 tn?1669040108
ON
1756321 tn?1547095325
Queensland, Australia
1780921 tn?1499301793
Queen Creek, AZ
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease