Chiari Malformation in children

[NOAHSMOM09]

Hi, my 3 year old was diagnosed in 2011 with chiari 1. He had his 1st surgery in Aug 2011 and a duraplasty in March 2012. His symptoms were quite severe which included screaming for hours especially in the nights, drop attacks, urinary problems etc., He was also diagnosed with 'epileptic form dysfunction' in September 2012. We see a neurologist, neurosurgeon and a sleep study doctor. His recent sleep study showed sleep apnea. His headaches have now returned and I notice them being especially bad when he cries. He also seems to be forgetful sometimes on important stuff, like his 3 year old cousin's name, the characters of spongebob which he absolutely loves, his b/day etc., We see his neurosurgeon again this month. Any thoughts?

[selmaS]

  Keep us posted...good luck :)

[NOAHSMOM09]

Thanks for taking the time to read and answer my post Selma. You are so incredibly helpful. I will research this doc nd if all is well I'll set up an appt to see him. God bless...

[selmaS]

  I think it is Dr Eric Trumble....look on the list...as I know it is on there.....

Epilepsy is yet another issue several adults and children have developed pre and post op....so there is some connection to Chiari, I am just not sure what it is.

Aww I hope this works out for all of u, and mayb is meant to be where he goes next. Do research him, I have heard good things, but none have been back to give a report.....not everyone posts after surgery so it is difficult to follow....but do give this Dr a look.

[NOAHSMOM09]

Thanks for that. I will make sure to ask these questions before his MRI. Every time we think we've overcome something, he gets diagnosed with something else. And for the most part, people aren't very understanding when he has one of his screaming/moody episode. So far he has not shown any of the EDS symptoms. Our concern was his epilepsy might turn out to be LGS. We are praying for a miracle in his life. Can I please have the name of the Dr. in Orlando? Our family has a tradition of taking our kids to Disney on their 3 rd b/day. We've taken our 2 older ones, but Noah still has not visited because we are always at the hospital or for tests. It'll be lovely to take him there while he's still 3.Thanks again and God bless.

[selmaS]

  Yes, Chiari can affect our moods and behavior, especially in one so young they can not really express what is going on and how they feel....but we have had reports of both children and adults having both of these issues.

In addition depression can also occur....it is a difficult condition to deal with.

The thing with the fact the Drs did not find nething else is if they knew what to look for to begin with....u really need to make sure testing was done for all related conditions like Ehlers-Danlos as it can cause many more issues post op.

[NOAHSMOM09]

Besides the chiari 1, they did not really find anything else. The epilepsy is now complicating everything. He has a repeat MRI in June and he starts occupational therapy on the 7th of May. Quick question, do you know if this causes any behavioral problems, mood swings, aggression etc.,?

[selmaS]

  If they did his whole spine, cervical , thoracic and lumbar they should have been able to rule out a syrinx, and possibly tethered cord...

With TCS he could have a sacral dimple or an elongated brain stem, these could also indicate having this....as it does not always show on a MRI.

May I ask with the dura plasty do u know what type of patch he had?

Ehlers-Danlos is not DX'd with MRI, this is a neuro test as well as u answering some questions regarding his healing process, if it is slow, if he bruises easily....

Being hyper mobile is one aspect of EDS that too many focus on as the only factor but there r many others as there r many types of EDS.

U may want to look at the Dr in Orlando....he treats  children and has a great location...lol..near Disney !!

He is on the list and there is more info once u google his name...research him.....

[NOAHSMOM09]

Hi Selma, thank you for replying to my post. Yes his 1st surgery was bony decompression and when that did not work they did the dura plasty. His last MRI was in Feb 2012. After his 2nd surgery, he did have a CSF leak which was taken care of. He has had an MRI for his spine in June 2011. Would the other conditions show up on that? He's also severely anemic and that could be caused by the epileptic med he's on. FYI, we live in the Atlanta area. Any thoughts on the specialists here? God bless...

[selmaS]

  Hi and welcome to the Chiari forum.

Have they checked him for related conditions like syringomyelia, tethered cord, ehlers-danlos?

The other thing is why did he have 2 surgeries so close together? Did they do a bony decompression and then find it did not work? The he had to have the dura plasty which is more invasive?

Since the dura plasty have they checked for a CSF leak? When was his last MRI?