MRI update

[by-the-lake]

Got the results of DS's MRI. (DS is 9 mo. old, central hypotonia, gross motor and speech delay, stimming, and possible sensory issues)
He has low-lying celebellar tonsils and prominent subcortical T2 signal hyperintensity. What that means for DS, we don't know. The neuro is not my favorite doctor. Off to see the Developmental peds Aug 31st. Until then, continuing with PT, OT, and ST. Did get a Special Tomato buggy with the size 1 Soft touch liner to keep him up (does not ride in the stroller well; too heavy to wear anymore at 23 lbs!). Any experience?

[by-the-lake]

Wow, 65 views and nary a comment.... was just wondering if anyone had some insight or experience.

[*LoveBugMama*]

I`m sorry you haven`t gotten any responses. I have no experience with what you are dealing with, and since I am Norwegian I don`t even know what all the acronyms means. But I have read, and I hope you get the help/advice you need.

IS acronyms the right word? Or is it Abbreviations. *wondering*


Anyway. Big hugs to you and your loved ones!

[by-the-lake]

Abbreviations. Thank you!!

[kittynurse]

No experience with MRIs but my son does have low muscle tone and sensory issues as well as some motor delays. I will be interested to read what the results mean for your DS.

Martha

[Jane]

Not a clue what that means, but I'm hoping it's somehow good news - ie something is there, so that leads to solutions.
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[BookGoddess]

Originally Posted by by-the-lake

Wow, 65 views and nary a comment.... was just wondering if anyone had some insight or experience.

sometimes the people who view threads on the SN forum aren't regulars who post on this board. This thread appeared on the New Posts section and I'm sure some curious mamas read the thread. Also, I believe Google/Yahoo bots look at sites also.

[by-the-lake]

Originally Posted by BookGoddess

sometimes the people who view threads on the SN forum aren't regulars who post on this board. This thread appeared on the New Posts section and I'm sure some curious mamas read the thread. Also, I believe Google/Yahoo bots look at sites also.

Thanks for that. Its just hard to find support in the regular 'life with a babe' forum, and my situations really fits nowhere else, I was getting a bit nervous I was being slighted.

[greenmom17]

Glad to hear the MRI went well, even if the neuro was no help.

Can I ask what kind of stimming your DS does at 9m? Also his speech...how do you know he has a delay at 9m? Just curious b/c my 9m DD is always kicking her little legs, seriously, like most of the time! People even comment on it when we are out. Possible stimming?

Sorry I have no advice, just support. Checked out your new stroller too - cute!!

[by-the-lake]

His speech was assessed as delayed because he does not string constanants, or use vowels, or recognize his own name or anyone elses for that matter. His stimmings are holding his arms in flexion, hands and fingers in extention (or even hyperextention), and shaking his arms very tremorous like, usually to his auditory stimming, which is grunting, really loud. He does this over and over, sometimes for hours. We can distract for a moment, but goes back into the cycle. He is also super involved in this, its hard to break it up. His therapists identified it for us, and it was like a lightbulb moment for us. He has been doing it since birth, only he would hold his legs in extention while grunting, so much we would not bend his knees at all, but now he does it this way.
We think the stroller is cute too
Does your daughter see a therapist to assess her actions? Can she distract from it? Does it take up her entire attention and focus?

[Lilypie32]

Low-lying cerebellar tonsils refers to a condition called Arnold Chiari Malformation (ACM). I have the condition. I was diagnosed in my 20s after suffering what my doctor thought was a stroke. I have facial spasms, head pain, and balance issues. My son had an MRI last year to check for ACM and he does not have it. ACM can be caused by birth defect or head injury and can have varying degrees of disability/issues/pain.

You can google ACM and find a lot of information. I go to the Chiari Institute in New York and they are wonderful. The site has videos and lots of info. Here is the link: http://www.chiariinstitute.com

Also another great site is the WACMA here:
http://www.pressenter.com/~wacma

I'm not sure of the significance of the hyperintensity but it might be related to ACM.

I'd get my MRI reports out and give you info on what my reports say but we are moving on Saturday so everything is packed!

[gsmom]

I'm not good at interpreting MRI information. My son's is "negative" but he's significantly delayed.

Many hugs to you mama. I hope that the dev ped is able to answer some questions for you.

[by-the-lake]

Wow, thank you for the information. Much to think over. And thank you for the links. If you ever happen to unearth your MRI reports, i would love to see them if you are willing to share

[by-the-lake]

Originally Posted by gsmom

I'm not good at interpreting MRI information. My son's is "negative" but he's significantly delayed.

Many hugs to you mama. I hope that the dev ped is able to answer some questions for you.

Thank you! Its interesting how a 'negative' diagnostic test leaves one feeling very unsettled, because the issues still exist.
I see your location in by Lake Superior. So are we! Actually, by Superior, Wis

[gsmom]

By-the-lake, We are right across the bridge from you! I didn't even notice your location. I think I know which neuro you are talking about. We should chat sometime. I will PM you my information!

[Lilypie32]

Your welcome! Once I unpack and get settled I will PM you with what my MRIs say. By the way, my mom was born in Superior, Wisconsin. I was born in Sheboygan (near Milwaukee) and I lived in Green Bay before moving to Florida.