Time for another MRI...and question

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Time for another MRI...and question

Postby LIZARD110366 » Tue Apr 29, 2008 9:51 pm

Well, I'm trying to get my nerve up to get another MRI scheduled for Drew (13, dx'ed with autism at 2 1/2, 13 mm ACM I at 5 1/2). He has had steadily progressing symptoms that have concerned me for awhile. They don't seem to be serious yet, but with summer coming, I'm dreading his heat intolerance, especially since he can't sweat, so we'll get the film and then find a nsg.

We went to TCI 4 1/2 years ago, but as I have said here before, I'm concerned about how the autism gets in the way of determining his symptom and their severity. He's verbal, but his expressive language is at about 6 yo or so, and we can't get much out of him re how he feels, though just yesterday, he told me for the first time, just matter-of-factly, that his head hurt on top and on the back of his neck. This is new, and I'm concerned about what it means, particularly the neck pain and the fact that he seems to have considerable pain tolerance, so it's possible he's walked around with it for awhile.

So...I'm calling his ped tomorrow to set up another MRI, but I really need a nsg who gets the whole thing about how autism complicates what we need to know about his symptoms and how to determine what he may feel that he can't describe. I would love to see Dr. Frim, since he has been recommended several times, but we're in RI, and Chicago is a long and expensive trip, so I'm hoping there's someone closer who would have a good understanding of all of this. I deeply appreciate any suggestions you have.

Thank you!

LIZARD, Drew's mom :)
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Re: Time for another MRI...and question

Postby brianfsmom » Wed Apr 30, 2008 9:07 am

Hi Lizard

Sorry to hear that. Have you ever heard of Dr. Duhaime in New Hampshire? I remember years ago there was someone on the boards who saw her for surgery, but she dropped out of sight after a bit. However, I can't vouch for her success rate at all, just wondered if you had ever heard of her, since I know she is close by to you. Just a thought, and I know we have discussed the New York City pediatric guys in the past.

Good luck. I know what you mean about working up the nerve. My son's neurologist said at the last visit that he'd wait till the next to schedule an MRI. We have been going ever August due to syrinx. However, since the syrinx hadn't changed for the worse, and slightly had changed for the better, he decided to wait for the clinical exam this August before deciding if perhaps we can have a year off. I was thrilled, but now I am getting a little anxious. Much as I hate them, it is always nice to know what's in there.

Please keep us posted.
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Re: Time for another MRI...and question

Postby Janice » Wed Apr 30, 2008 9:39 am

Good Morning,

I'm really sorry to hear about your children and their struggles with this disorder. Both of you, as parents, and especially your children, are in my thoughts and prayers.

Take care and I pray you are both always there to be such strong advocates for your children.
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Re: Time for another MRI...and question

Postby LIZARD110366 » Sat May 03, 2008 12:08 pm

brianfsmom wrote:Hi Lizard

Sorry to hear that. Have you ever heard of Dr. Duhaime in New Hampshire?


I haven't, actually. I might call her. :) Thank you! I think we'll get the MRI and then start looking. I also personally know Jeff Wisoff and might ask him. The freakin' autism really complicates all of this...UGH!! :(


LIZARD :roll:
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Re: Time for another MRI...and question

Postby brianfsmom » Sat May 03, 2008 4:34 pm

well, good luck on both counts, then! And please, keep us posted! Hopefully all will be well.
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Re: Time for another MRI...and question

Postby Rosellen » Sun May 04, 2008 9:14 am

Lizard
I am sorry about your son, I know it must be very hard for you & escpecially your son, because he can't tell you how much pain he is in. Did the first doctor that you saw ever consider surgery? He must be in alot of pain from a 13mm herniation. I hope everything goes well for you. There are few Dr. I know of in New York, if you want to travel here again that is an option. I know you went to TCI, how did you feel about that group of doctors & would you go back to them?

Good Luck to you!
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Re: Time for another MRI...and question

Postby LIZARD110366 » Sun May 04, 2008 9:43 am

Thank you, Rosellen. :)

I see you joined autism-Chiari, too! :) Welcome!! :D It can get quiet in there, but please post and let us know what we can do for you, or of course, if you have experiences that can help members.

We have had three opinions, including two from my own nsg (when Drew was first dx'ed in early 2000, and last August, when I became seriously concerned about his inability to cool himself). We went to TCI in October of '04, and a thorough eval was done. I told Dr. B about my hydro, and I asked him about the issues we were starting to see, particularly the widening gap in his language abilities as compared to other issues commonly attributed to autism. Now his oral aversion is getting more severe, and he's become SO food picky (always was, but MUCH worse now) that I'm getting seriously scared for his health. He's gained about 30 lbs in the past couple of years, and although he's about my height now, he has obvious flab (most notably a "beer gut"). I have plenty of my own, so it's not a judgment as much as a concern. Everything he eats has to be breaded, which means seriously unhealthy. Dr. B essentially said he'd have to be about as sick as I was from my last shunt failure at 13, which I described to him, before he'd require surgery, but what about the dehydration from being unable to recognize thirst? What about the sweating inability in the coming summer heat?? What about the symptoms he can't tell me he has because he has the expressive language ability of a 6 yo??!! I'll be honest; it scares the $h!t out of me. :( I just need to talk to someone who gets what a problem this is.

LIZARD :(
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Re: Time for another MRI...and question

Postby Amy Joe » Sun May 04, 2008 12:36 pm

I would highly recommend UMass medical center in Worcester Ma. Dr. Huirst. Cheif Pedi Surgeon!

I do not know if he does Neuro, but if and when I need surgery I will be seeing him just as a consult. He saved my daughters life and his staff is unbelievable!

Even if he does not do Neuro, he is the head of all Pedi @ Umass. He would be my first and only choose for my child, for anything.

508-334-1000 ask for Dr. Huirst office.

Tell them you were referred by Elizabeth Egelands mom. They know us very well.

God bless you and your son and I pray he gets the best care.

Amy Joe
MVA 11/05, Dx CM 7mm 1/06, PFD 10/07/2008
Occipital Neuralgia, POT's, Hashimoto's Thyroiditis, Vitamin D Deficient, Lymes, Celiac
NS: Dr Carl B Heilman
Tufts Medical in Boston
http://www.amyjoeonetoughcookie.blogspot.com
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