Heard from two nsgs about Drew's symptoms...

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Heard from two nsgs about Drew's symptoms...

Postby LIZARD110366 » Tue Jun 03, 2008 8:24 am

...and they both said the lack of thirst, lack of sweating, and severe body temp disturbances have nothing to do with Chiari. Is this crazy, or am I? :oops: I really want someone who knows about Chiari and appreciates how his autism complicates what we know about his symptoms to look at his films.

HELP........

LIZARD :(
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Re: Heard from two nsgs about Drew's symptoms...

Postby Sara » Tue Jun 03, 2008 8:55 am

Sara
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Re: Heard from two nsgs about Drew's symptoms...

Postby angie7 » Wed Jun 04, 2008 7:39 am

Have you contacted Dr Frim in Chicago or Dr Menezes in Iowa?

Dr. David Frim
University of Chicago Children's Hospital
Pediatric Neurosurgery
5841 S. Maryland Avenue
Chicago, IL 60637
Office Phone: (773) 702-2475
Office Fax: (773) 702-5234



* Dr. Arnold Menezes
Neurosurgeon
University of Iowa
Hospitals and Clinics
Iowa City, Iowa 52242
Phone 319-356-1616
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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Re: Heard from two nsgs about Drew's symptoms...

Postby LIZARD110366 » Wed Jun 04, 2008 8:07 am

Thank you, Angie. :)

I would LOVE to see Dr. Frim. We have no idea when we could get to him. We're in RI, and these surgeons I e-mailed are all in Boston, about an hour from us. I heard from the third one today, who also said he doesn't believe Drew's symptoms are Chiari related. Sigh...:(


LIZARD :)
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Re: Heard from two nsgs about Drew's symptoms...

Postby LIZARD110366 » Wed Jun 04, 2008 8:10 am

Thanks, Sara. :)

I appreciate the links. I checked them out, and it certainly sounds possible, but unless I'm misunderstanding, can't the Chiari result in it? That's what I gathered from the quick look I made. I'll go through it again today. :)


LIZARD :)
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Re: Heard from two nsgs about Drew's symptoms...

Postby charlottebae » Thu Jun 05, 2008 12:37 am

Hi, I have not logged in for almost a year. Our 4 year old was decompressed last July, a battle downhill since. He is autistic, since surgery he is now autistic w/ bipolar disorder, still epileptic, we now have intermittant hemiperisis, sluured speech, loss of muscle strength etc. Post surgery he has endured a muscle and skin biops they thought he had ALD, thank god he does not. Possible mitochondrial disease, yet not confrirmed by the biopst and millions of labs. He is as if we are watching a little old man have strokes and dementia. We feel it is chari related the NS does not and he has genetics team involved. reading your post our son has never sweated and goes into crisis if to hot or to cold, his body does not know the difference. Has anyone had simular problems post surgery. He gained some function post surgery then we went to bowel bladder issues, head sideways again, drooling again,........... EEG looks good, so its not seizures except slowing over the right side. We ruled out meds you name we have done it, the best thing I have done for him is be his biggest advocate. I just emailed Dr Balonese at CI.

Charlotte
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Re: Heard from two nsgs about Drew's symptoms...

Postby Janice » Thu Jun 05, 2008 10:51 am

Hi Charlotte,

Your is having to endure so much in his young life. He is in my thoughts and prayers. I believe and pray, that you will get the help you need for him by communicating with Dr. B w/TCI. I believe this was a really good decision for you, as the parent, caregiver and advocate.

Take care (((((hugs))))) and I pray you are able to get him to TCI and then on to getting the help he needs.
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: Heard from two nsgs about Drew's symptoms...

Postby Janice » Thu Jun 05, 2008 10:53 am

Hi Lizard,

Have you tried TCI for your little one? Maybe you should send them an email and see what they have to say.

I pray you can get help soon, for your little one.

Take care, you, your son and your family are in my thoughts and prayers. (((((hugs)))))
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: Heard from two nsgs about Drew's symptoms...

Postby LIZARD110366 » Thu Jun 05, 2008 12:01 pm

Janice wrote:Hi Lizard,

Have you tried TCI for your little one? Maybe you should send them an email and see what they have to say.

I pray you can get help soon, for your little one.

Take care, you, your son and your family are in my thoughts and prayers. (((((hugs)))))


Thanks, Janice. :)

Yes, we were there a few years ago, when I first noticed these things. Unfortunately, even though they were quite thorough (and Dr. B was great about answering all my hundreds of questions, LOL :roll: ), he didn't seem concerned about the issues and seemed to have little appreciation for the impact of the autism on Drew's ability to tell us what he feels. He's not a "little one" anymore, LOL, nearly 14 and as tall as I am, and I'm very concerned about these things and what to do about them, especially since I keep being told they aren't "surgery worthy."

LIZARD :(
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Re: Heard from two nsgs about Drew's symptoms...

Postby Janice » Thu Jun 05, 2008 2:02 pm

Wow, 14 is definitely not a little one anymore. Sorry about that.

I can see where there might be some sort of link and I pray you are able to find someone who can help. You aren't the first parent that I've read about asking these questions. It seems that the doctors, including those at TCI, need to pay attention to the parents and try to see if there's a connection.

What bothers me the most is that in situations like this (and small syringes, no CM), there will be tons of information later. I know it will happen but that doesn't help me or Drew.

Take care, (((((hugs)))))
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: Heard from two nsgs about Drew's symptoms...UPDATE!!

Postby LIZARD110366 » Thu Jun 05, 2008 7:35 pm

LIZARD110366 wrote:Thank you, Angie. :)

I would LOVE to see Dr. Frim. We have no idea when we could get to him. We're in RI, and these surgeons I e-mailed are all in Boston, about an hour from us. I heard from the third one today, who also said he doesn't believe Drew's symptoms are Chiari related. Sigh...:(


LIZARD :)


OMG...I am SO JAZZED!!!!!!!!!!!!!!! :D :D :D I talked to my dad tonight and told him all about this. He asked where else I could take Drew, and I said my dream was to see Dr. Frim, since I had e-mailed him about this last year, and he said Drew should be checked out. He asked what the issue was, and I said, "Money, of course." He then asked how much, and I said, "At least 3 flights' worth." He then said, "Find out how much, and let me know. I want to help you get there."

Can I just say "YAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!"?? :D I love my daddy, too!!!!!!!!!!! :D :D :D

LIZARD, over da MOON!!!!!!!!!!! :D
LIZARD110366
 
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Re: Heard from two nsgs about Drew's symptoms...

Postby Janice » Mon Jun 09, 2008 9:28 am

That's "terrific" news!! :D

Let us know when you have the appointment.

Take care and you're both still in my thoughts and prayers.
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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