would love input about if my sons problems could all be linked.

[dalena21]

I dont know to call this a question or a plee for answers.  My 6 year old son was diagnosed with generalized epilepsy when he was three.  He is on Keppra and doing rather well.  Its been a year in may since his last seizure.  His kindergarden year was horrible.  We struggled with basic things such as his alphabet and numbers.  He may know a letter today but it was gone tomorrow.  I had him tested through the school system only to be told he was average or above and didnt meet criteria for any help.  it was obvious to me as a parent and his teacher that he truly had a problem... if fought all year long to no prevail.  Before this we only had a CT on the day he had his initial seizure.  His first EEG showed abnormal activity throughout his entire brain.  A couple of months ago his dr discovered an arrhythmia and a murmur..after an echo we found out that it was mild and nothing of much concern so i was greatful for that.  a few weeks ago we saw his neurologist and we discussed all the issues from the school year and I requested further testing before school starts to help me in my once again battle to get my son the help he needs.  We had an MRI last week and his dr called me today and we go wed to discuss the results.  He said it showed migraines and Arnold Chiari Malformation.  From reading on here i didnt see many symptoms that my son is having other than the memory and cognitive problems.  He is a very active little boy and doesnt complain much.  I am concerned however because when he tries to learn and process information he says his "brain hurts"  I have read that many of you say your dr say epilepsy and Chiari are not related but it surely seems like a coinsidence that so many people have the same problems if they arent.  Can some one give me some input on what to expect from this..i am scared to death.  It seems like we get past one battle just to reach another...thank you for anything you can add.

[Viva001]

I'm sorry for your son's symptoms.  The good news is that the pediatric NSs seem more on the ball wrt to Chiari than the run of the mill NSs for adults.
There are other parents of young children here, so I hope they can help.

As far as help from school, I had a friend who got her daughter pulled out of class for speech/language, even though that wasn't her problem.  It was the only special ed available.  Sometimes you have to go through the back door, or even a window.  :)

Best of luck!

[selmaS]

  Hi and welcome to the Chiari forum...

As Shelia mentioned above, I am saddened to hear of ur little guy having to deal with this condition, and as she said since we r born with this we do tend to look "normal" to the outsiders as we continue to move on with daily activities as we adjust to "symptoms" we accept as feeling normal...we do not know we should not be feeling a certain way after activities or that it is not normal as it has been our normal for all our lives, so we deal with it and accept it.

I was not a good student in school, some days things clicked and others I was so very lost.

The rereading of a sentence is something I still do today....I miss things in the text and what I also love is seeing words diff then how they really appear another reason to reread...lol..so this can be stressful and diff for a child to understand ...more so when asked to read out loud in class....very scary.

I had issues at the same age as ur child, but they did not have MRI's back then, so I was 48 when I got dx'd...so he is lucky in a way to know what is going on so soon.

The best way to deal with this is with a Dr that knows what to look for and with children u want to look at sleep apnea as it can hit them harder then adults....as they can not always explain how they feel or what is going on.

A CINE MRI should be done to look at CSF flow, and MRI's of the thoracic and lumbar spine to look at disks, rule out syrinx's , tethered cord, and they should also look to levels of vit D, B12, and magnesium , potassium, calcium...all very important.
And other related issues ICP, POTS, and ehlers-danlos.

Finding the right dr is key !

Until u find the right one u will feel like u r fighting a losing battle, and it is very frustrating. I suggest u research Drs that r specialists in chiari and expect that u may have to go out of town or state to get to one...and see more then one of the same caliber to compare and be sure u r comfortable with that dr.

Educate urself so u will know what u have found that Dr.

We do have a list of Drs, that the members have been to and liked...the list is not a referral and u will have to call to see which ones see pediatric patients...not all will.

Continue to ask questions, and know u r not alone : )

[Rahe28]

HI and welcome to the forum. I am so sorry to hear that your DS has this condition, and sad for the reasons you had to find us. I have read many times that though Dr's say they are not connected,, you will find many chiarians that have at one time or another had seizures, or were miss diagnosed with epilepsy. I know that you said your DS doesn't have any of the other symptoms and being as observant as you are is so important, but I also want to share with you that growing up all my life I had symptoms that I did NOT know were symptoms. Most of us are born with chiari and most often don't realize that something is a "symptom" , as we learn to adapt ourselves to it, not knowing that anyone else feels differently. It is pur "normal". Learning problems may definitely be related, especially due to the memory loss we often deal with. I remember being in 1st grade and having reading comprehension problems, even though I was a straight A student  my whole life, I would have to re read pages and sentances over and over because I couldn't remember what I just read. So, pleasse do take the time to find a true chiari specialist. They will know best how it all relates. As a kid I would pass out once a year or so, and everyone just thought I was having heat strokes as we live in south louisiana or that it was jsut a side effect of being too nervous....only to find out 20 years later that was not the case, they were actualy black out from the chiari. I wish you the best and wish that I could comfort you, just please know that you have found the right place for support and information. There are also other parents here dealing with the same that I am sure you will hear from. Best wishes and keeping your Ds and your family in my prayers <3

[irislita]

Hi...i am happy u r such an obseevative mom and mom knows it better than no one else.i am unfortunately not a specialist,but i think these things can all be connected.the nervous system is such a delicate thing and our medicine is advanced,but still there are so many undiscovered things.and chiari as such is a condition still not completly understood and only few specialist really know to connect and treat things to the newest standard.i am quite sure i read about chiarians having seizures going on or having been misdiagnosed with seizures or other stuff.unfortunately chiari can cause cognitive issues and learning problems.i do think ur gut cannot fail and u should go further.i am a twin and i have chiari my sister (fortunately)doesnt have it...at school i always had more problems of learning the logical things like maths...but in social matters i was always better as i had to observe so much more to learn and make more efforts to communicate etc.i would suggest u get a true chiari specialist...hope the best for u and ur family