chiari malformation and rages

[colorspix]

My son is 8 years old. He has a variety of issues including aspergers (a type of autism), learning disablilities and seizures. Because of the seizures, he had an MRI in dec of 08. It showed an 'incidental chiari' with a 13mm herniation. My family doc didnt know much about it told me to check into it and she would refer me to a NS. Well the research I have done blows my mind. Incidental?!?! I think not. This explains alot. Like why suddenly my son has horrific headaches, unprovoked and uncontrollable tantrums, numbness in his extremities, such a strong gag reflex that all of his back teeth had to be filled and capped under general anesthetic. These things have been oing on for years and were all attributed to his ASD. WELL. This is the lovely country of Canada, province of Manitoba. We can not get anyone to listen to us except his psychiatrist and ped and they can not help. The ONLY criteria for decompression is the presence of a syrinx. Our next MRI is scheduled for this coming Thursday. Ayrek just got out of the psych ward after trying to choke me in one of his uncontrollable rages. After spending 8 hours in the ER with three security guards on my 8 year old, we still could not get our NS to take this seriously as a sign of Ayreks extreme pain that he suffers but is unable to articulate. HELP! Has anyone else had so many problems after a dx? It seems that every doctor wants to pass him on to the next one. Very fustrating and wanting to hear other stories and any advice.

[chadry]

Hi,
I am sorry that you are having such a hard time right now. I have a DD who has Chiari but she does not have the other problems your son has. I do know she gets pretty moody at times but she can express it. Of course she is almost 14 so I think a lot of her moodiness is just her age too.
I have worked as an Instructional Aide in our school district with special ed students and I have worked with many children with autism.I can only imagine what your son is going through. I know how hard it is for them to communicate how they feel and how frustrated they get. I have seen some major meltdowns and flares of rage from  little things like a wet shirt sleeve and your son is going through so much.
I wish you the very best and i hope your son gets all the care he needs.
Hang in there and like someone else mentioned you need to take care of yourself so you can help your son get through this.
Our thoughts and well wishes are with you.
Chadry

[colorspix]

okay so thank you all so much for your kind words and advice ... as i sit here and bawl like a baby. It is unbelievable to know there are others out there who dont think i am totally a nut bar. I hav never even heard of a CINE MRI and i know that is not what they have on tap for Ayrek this week. His MRI is going to be under General anesthetic. It is a full spinal MRI this time - last time they only did the brain with the C1 and C2. The NS and NL here seem to be total morons, calling his finding "incidental" HA. I think they should take him home for a week and see what he endures. I read that a rare presentation of Chiari is paroxysmal rage which is what I believe Ayrek is suffering from. Our psych thinks maybe bi-polar except that Ayrek is missing the manic part altogether, plus the meds for bi polar are not helping but yes it is on our radar too. I will keep you posted on the MRI. THANK YOU FOR BEING HERE NOBODY GETS IT LIKE YOU DO.

[MalsNana]

I also have an 8 yr old grandson we have been raising for the past 3 yrs. He has an 18mm and will be having the surgery on Tuesday morning. This past yr has been pure hell with him. His rages get so bad. Today he had to be taken to the psych ward due to running off. His anxiety is through the roof as well as depression etc. He has severe pain  in his legs and has for 3 yrs but now also has them in back and arms. His headaches get so severe it would make you cry. His speech has declined, he started walking weird about a month ago,, we had to pull him out of school due to rages and getting so upset for small things.It is rough and I cannot imagine having to deal with Dr's not listening. His scan was on a Tuesday, results were next day, then next day after that he was in the neurosurgeons office. Prayers for you and please keep checking out Dr's. We believe everything this kid has been going through is the cause of his condition and am thankful we kept trying to find out why. The mri was done because my husband said he feels like he has something wrong in his brain like maybe a tumor because of how quick he switched from a good, sweet and polite child everyone loved to be around to literally acting like a raging animal. Marsha   ***@****

[selmaS]

Hi and welcome to the Chiari forum.

Having Chiari myself I am well aware of mood changes and can only imagine how it would affect  ayoung child since they can not articulate how they are feeling...

Prayers for a successful surgery and a smooth recovery.....please keep us posted on your grandbaby's progress.

[selmaS]

One more thought.....my nephew also has an aspergers DX and I know that certain foods affected his behavior.....fish stick and tater tots for one due to the  peservitives....so keep a journal as foods can trigger this as well.

[ChiariWolf]

Hi, and I do hope someone here can help you with the answers and support you need to enable you to help your son.

I have known a few with aspergers but only one child. My heart goes out to you. I can only imagine how confused your son must be with so much going on. Can't help but wonder if all this going on along with the aspergers isn't causing him to act out. Searching for relief in the only way he knows how... My applogies as I do not know how to offer help other than remind you "Keep taking care of you, so that you can take care of your dear son." Just so you know your son and you will be in my personal prayers.

Wolf

[n40066]

i would like to join selma in welcoming you to our chiari family.  the reason we are all here stinks, but it is wonderful to have such a diverse group of people to offer advice based on their own experiences.  since it is not possible for your son to tell you himself what he is feeling, this may be especially helpful for you.  i am so very sorry you and your son are going thru this....
this is just a thought and i may be way off base, but has he or can he be tested for bipolar?  my son, who is now 23, developed bipolar after a nasty bump to the frontal lobe of his brain.  it causes rages of incredible magnitude!  we have been thru some pretty hairy situations because of it.  with everything else your poor son has going on, it may not even be possible to test him for this, but if he does have it, it can be regulated with proper medication.

as for his chiari, like selma said, 13mm is considered to be quite large.  since his ped is willing to work with you and help you, ask her to order a cine mri.  that is a test that checks for a csf blockage.  ask her to do the brain and complete spine so he only has to go in the tube one time.  with his other problems, they may have to give him something to allow him to sleep thru it.  with this test, they can check not only to see if there is a blockage of csf, but can also check for a syrinx.

i will keep your son and your family in my prayers and hope you are able to find the help you need quickly.  please keep us posted on your progress!  there are a lot of good people here that have really helped me thru some tough times.  it's nice to have a place to go where you are never judged for having a bad day...the support offered here is amazing!!

good luck in your quest for knowledge and answers and once again, welcome aboard!
elizabeth

[selmaS]

Here are a few drs. in Canada

Here is a list of Drs that r supposed to be chiari NS's....not sure if they r true chiari drs....Please research to find out if ne r true specislists in this field.



Dr. Rudolph Arts  
Neurologist  
Barrie, Ontario  
(ph) 705.721.1060  

Dr. Paul Muller  
Chief of Neurosurgery  
St. Michael's Hospital  
Toronto, Ontario  
(ph) 416.864.5590

Dr Hurlbert
Neurosurgeon
Foothills Hospital
Calgary, AB, Canada

Dr. Rutka  
Neurosurgeon
Sick Children's Hospital
Toronto, Ontario

Dr. Ramesh Sahjpaul
Neurological Sciences  
339 Windermere Road,  
London, Ontario N6A 5A5  
(ph) 519.663.3706  
(fax) 519.663.3753

[selmaS]

Hi and welcome to the Chiari forum.We r glad to have u here, but not the reason. it is so haard to see a child go thru pain and to have one that can't explain what is going on must be heartbreaking.

As for what u wanted to know...yes, even in the US we have trobles getting drs to listen....there r so few chiari specislists out there....but too many that have no idea what chiari is and how to treat it or that it even needs treatment.

Since ur DS has Aspergers as well I have no idea what other issues he may be dealing with.But  13 mm herniation is considered a large herniation, but u need to find out if he has a CSF blockage and overcrowding.

Check with ur insurance and see if u can travel to a chiari specialist...I know we posted some names of drs not that long ago in Canada.....I will see if I can locate it for u.

Please keep us posted on ur DS's progress
"selma"