Chiari what?

One week after an MRI visit for MJ. An MRI visit we were expecting to only give answers to help with Autism therapies – An MRI to confirm there were not any undiscovered issues. Only to find out there was an undiscovered issue completely unrelated to any of his current diagnosis. So here we are – in yet another waiting room – with yet another provider – regarding yet another condition to add to MJ’s list:

Chiari Malformation

Thank God for living in a city with some of the most amazing pediatric health care providers in the country.

Dr. Adelson at Barrows Institute at Phoenix Children's basically explained this: MJ's skull is too small for his brain. Chiari Malformation is when the brain runs out of room in the skull and the cerebellum gets squished down into his spinal column and compresses the spine. It is normally found in children ages 5 and up. Matthew's condition seems to be more advanced for a 5 year old then they would expect. He has already completely run out of room in his skull. Normally there is a little space left at this age (even in Chiari patients) and it slowly gets filled up as they grow. MJ has absolutely no space left. They allow up to 5mm of the cerebellum to go into the spinal cavity and still be "acceptable". Mathew's is measuring at 16mm of his cerebellum being squished into the spinal column. It is blocking drainage of the spinal fluid and the spinal fluid gets forced to go places it is not supposed to go like a cavity in the spine (they have confirmed MJ has spinal fluid in that cavity). The next phase of his condition would be for the spine to get cysts from the spinal fluid improperly draining. They need to do an MRI of his spine to know if he has any cysts – which is our next step.

What does this all mean? Even though he is not having any major symptoms now (breathing problems due to the throat closing off, sleep apnea, major headaches, numbness and tingling in extremities) he will get these eventually. Basically even as he gets older and grows MJ's condition will only get worse. With that said – a brain/skull surgery is inevitable. If they confirm he has cysts in his spine they will recommend surgery soon. If he does not have any cysts in his spine they will communicate the pros and cons of waiting vs. doing surgery now and give us the choice.

We did the MRI because MJ was having unusual movements that seemed excessive for typical Autism –not this….. In a strange kind of way we were hoping this would be an answer to his odd movements but it seems that needs further investigating. Dr. Adelson is going to recommend to MJ’s Autism doctor, Dr. Blitz (they both are with Barrows at Phoenix Children’s Hosp.) that MJ needs an EEG to check for possible seizures causing his excessive odd movements. The doctor today confirmed the Chiari diagnosis has nothing to do with and is in no way related to his Autism, or his movements – it was found in ADDITION to his other issues. Yup – another one for his list. Man oh man is this kid going to have an amazing testimony!

So we probably won’t get the spine MRI for a week or two because Phx Children’s is so busy. We need to follow up with his Autism Dr. about the EEG. More “wait and see”. But that is okay. God gave us an amazing peace today – His peace. He is the Faithful One.

We will keep all of you updated. I am sure there will be a time in the coming weeks where we will need many of you by our side. We are so thankful that God has blessed us with such amazing family and friends. Thank you and love you all!