[youngwife]

Hello!
I am Rebecca, and I just recently joined. I have a daughter that is 14 (soon to be 15), and she has been diagnosed with Chiari, Syringomyelia, Central-hyprothyroidism, Mild Scoliosis, Metabolic Disorder, a connective tissue disorder, and Vitamin D deficiency.

Also, I have an 11 year old daughter that has also been diagnosed with Chiari.

My husband also has health issues, so our lives are pretty crazy!:yawning:

I'd love to know if anyone else has children with these conditions, and learn any new coping measures.

Blessings to you all,
Rebecca

 

[2boyzmama]

Welcome!!!

No chiari here, but I know two local kiddos IRL who have it.

 

[jondee0]

I have a 12-yr old with syringomyelia, but no Chiari, and scoliosis. Has either of your daughters had surgery for the Chiari? Can I ask how your older girl is affected by her syrinx? Michaela's is stable, but significant. She has little use of her legs, and uses a wheelchair exclusively.

It sounds like you have a pretty full plate. I think you'll find a lot of support here; it's a nice group

.

Joni and kids, incl. Michaela, 12

:, w/a funky spinal cord, and Gabe, 10

, w/Down syn. and autism

 

[youngwife]

Quote:

Originally Posted by jondee0 I have a 12-yr old with syringomyelia, but no Chiari, and scoliosis. Has either of your daughters had surgery for the Chiari? Can I ask how your older girl is affected by her syrinx? Michaela's is stable, but significant. She has little use of her legs, and uses a wheelchair exclusively. It sounds like you have a pretty full plate. I think you'll find a lot of support here; it's a nice group . Joni and kids, incl. Michaela, 12 :, w/a funky spinal cord, and Gabe, 10 , w/Down syn. and autism

Rachael actually has one cervical and two thoracic syrinx. I think that her main symptoms from syrinx would be numbness in her limbs and bowel/bladder issues.

She is mostly affected by the elevated pressure in her head despite having Chiari decompression surgery in October of 2007. Her syrinx have not changed since the surgery.

Do you know what caused your daughter's Syringomyelia? I am so sorry that she is left with little use of her legs. Rachael also has widespread pain, and fatigue.

Thank you all for such a warm welcome!
Rebecca

 

[jondee0]

We don't know what caused Michaela's syrinx. She was born with low tone and significant contractures of her hips, knees, and ankles, and finally had an MRI at 17 mo. that showed the syrinx. We spent years trying to help her walk with braces and crutches, but she finally decided last year that wheeling really was the most efficient way for her to get around, so we let the walking go.

I'm so sorry that Rachael's having to deal with pain

. That's got to be difficult, especially after going through all that that surgery entails. As much as modern medicine can do, there's still so much that just can't be "fixed". And it's tough having your kids go through trials that we'd rather go through, ourselves.

I see that you, too, have a large family and homeschool

. We homeschool all of our still-at-home-and-of-school-aged kids except for Gabriel (10), who attends a special day class at a local public school. And our children are definitely blessings and gifts, too

.

Joni and kids, incl. Michaela

: 12, syringo., and Gabe

10, w/Down syn. and autism

 

[sbgrace]

Welcome.
You do sound like you're dealing with an awful lot of issues. What metabolic condition? My son has a metabolic condition but none of the other issues you mention.

 

[sunflowers]

My dd has a Chiari I with a syrinx. It was dx'd at 10mos after an MRI. At that time she was significantly delayed and hypotonic (but she was also born premature). The MRI was trying to determine the cause of her delays since they were far greater than what her prematurity would account for.

So far, no other trouble with the chiari or the syrinx. I do wonder if it should be monitored since she's never had a repeat MRI to check on it but I'm assuming that since she hasn't displayed any other symptoms to date, they find it unnecessary?

I was told that a Chiari tends to first manifest symptoms during puberty and/or early adulthood. I was told migranes and seizures may be likely at that point.

Was anyone else told that?

 

[youngwife]

Quote:

Originally Posted by sunflowers My dd has a Chiari I with a syrinx. It was dx'd at 10mos after an MRI. At that time she was significantly delayed and hypotonic (but she was also born premature). The MRI was trying to determine the cause of her delays since they were far greater than what her prematurity would account for. So far, no other trouble with the chiari or the syrinx. I do wonder if it should be monitored since she's never had a repeat MRI to check on it but I'm assuming that since she hasn't displayed any other symptoms to date, they find it unnecessary? I was told that a Chiari tends to first manifest symptoms during puberty and/or early adulthood. I was told migranes and seizures may be likely at that point. Was anyone else told that?

Chiari is a varying condition. Some people have it, and are asymptomatic. However, some are very symptomatic, and the age that symptoms onset is also varying. I have a friend with three Chiari Kids, and a couple manifested as babies, where one was preschool age.

Yes, headaches are the most common symptom, but again the presenting symptom can be leg pain, or seizures, or choking/gagging.

My advice about Chiari is to do your reading because, unfortunately, not all Neurosurgeons are experts in the Chiari field.

Rachael has been diagnosed with a Metabolic Syndrome by her endocrinologist based on her unusual weight gain and abnormal cholesterol levels. However, I am not 100% convinced that she fits into the typical stereo-type for this. Since it isa relatively new diagnosis and doesn't require medication, I am taking a wait and see approach with it for now.

Again, thank you all for making me feel welcome!

Blessings to you all,
Rebecca

 

[ShadowLark]

Quote:

Originally Posted by jondee0 We don't know what caused Michaela's syrinx. She was born with low tone and significant contractures of her hips, knees, and ankles, and finally had an MRI at 17 mo. that showed the syrinx. We spent years trying to help her walk with braces and crutches, but she finally decided last year that wheeling really was the most efficient way for her to get around, so we let the walking go. I'm so sorry that Rachael's having to deal with pain . That's got to be difficult, especially after going through all that that surgery entails. As much as modern medicine can do, there's still so much that just can't be "fixed". And it's tough having your kids go through trials that we'd rather go through, ourselves. I see that you, too, have a large family and homeschool . We homeschool all of our still-at-home-and-of-school-aged kids except for Gabriel (10), who attends a special day class at a local public school. And our children are definitely blessings and gifts, too . Joni and kids, incl. Michaela : 12, syringo., and Gabe 10, w/Down syn. and autism

So do your other kids have any problems with one going to Public School? (Or vice versa?) Brendon will need the Special Needs classes, but maybe I can still home school Hypatia?

 

[judejude]

I thought I'd chime in even though my dd is different from what everyone has mentioned.

DD was born with Spina Bifida, Hydrocephalus, Chiari Type II, Sprengler Deformity, Klippel-Feil Syndrome and has paralysis from the waist down. She also had clubbed feet.

We discovered she has a few syrinx when she was probably 4 or 6 - can't remember. At the time they we asymptomatic. They have become symptomatic over time - she has a tremor in one of her hands that comes and goes and her the ends of her fingers go to sleep sometimes - especially the last 3 fingers on each hand. We're just keeping an eye on it all and she gets an MRI every yr or so. The neuro. told us that he could not drain the syrinx with a catheter because they would probably come back if we didn't do a decompression surgery for the Chiari, so I hope we never have to do it. He did also tell us that even the decompression surgery there is no guarantee that the syrinx won't come back. I hope that day never comes.

She has always had a very strong gag reflex, but as she's gotten older she has been able to control it more, but still does throw up sometimes if she gags about something.

 

[youngwife]

Quote:

Originally Posted by judejude I thought I'd chime in even though my dd is different from what everyone has mentioned. DD was born with Spina Bifida, Hydrocephalus, Chiari Type II, Sprengler Deformity, Klippel-Feil Syndrome and has paralysis from the waist down. She also had clubbed feet. We discovered she has a few syrinx when she was probably 4 or 6 - can't remember. At the time they we asymptomatic. They have become symptomatic over time - she has a tremor in one of her hands that comes and goes and her the ends of her fingers go to sleep sometimes - especially the last 3 fingers on each hand. We're just keeping an eye on it all and she gets an MRI every yr or so. The neuro. told us that he could not drain the syrinx with a catheter because they would probably come back if we didn't do a decompression surgery for the Chiari, so I hope we never have to do it. He did also tell us that even the decompression surgery there is no guarantee that the syrinx won't come back. I hope that day never comes. She has always had a very strong gag reflex, but as she's gotten older she has been able to control it more, but still does throw up sometimes if she gags about something.

Thank you for chiming in! I pray that your daughter does not have to have the decompression surgery.

 

[jondee0]

So do your other kids have any problems with one going to Public School? (Or vice versa?) Brendon will need the Special Needs classes, but maybe I can still home school Hypatia?

There are just a couple of things about Gabe being in school that have affected my homeschooled kids. One is that they are very aware of his school schedule, and figure that if Gabe gets a week off at, say, Easter, so should they. And then they know that we have to plan some activities and outings around Gabe's daily schedule; we have to be home to get him off the school bus!

That's about it, though. Gabe is a sufficiently different learner that the other kids don't even ask why he's not homeschooled; I think they understand that he really does need the expertise of the staff at the special day class. And honestly, I truly don't believe Gabe ever wonders about it, either. I think he's just very happy to ride the bus everyday and get to hang out with his buddies at school

.

Joni and kids, incl. Michaela, 12

:, w/a funky spinal cord, and Gabe, 10

, Down syn. and autism

 

[MotherWhimsey]

My kid has a metabolic disease called Mitochondrial Disease. We just found out today that he has Chiari too. His is aquired since his first MRI almost two years ago didn't show it at all. We've never had an MRI of the spine, so I don't know about that.

His issues started long before the clean MRI, so he's not really a candidate for decompression since they don't think it'd fix anything anyway.

 

[youngwife]

Quote:

Originally Posted by MotherWhimsey My kid has a metabolic disease called Mitochondrial Disease. We just found out today that he has Chiari too. His is aquired since his first MRI almost two years ago didn't show it at all. We've never had an MRI of the spine, so I don't know about that. His issues started long before the clean MRI, so he's not really a candidate for decompression since they don't think it'd fix anything anyway.

I am so sorry to read that your son has Chiari. Do they now what caused his Chiari?

Is he having any symptoms from it?

Blessings,

Rebecca

 

[MotherWhimsey]

Well, it wasn't there in one MRI, then less than 2 years later there it was. So I guess it just happened. He hasn't had any head trauma that could cause it or been in any kind of car accident. It's just odd.

I don't know if he has symptoms from it or not. He already had autonomic dysfunction, dysphagia and aspiration, apnea, and other symptoms that could be Chiari before he had the Chiari. For him they're just Mito symptoms I guess. There's just no way to tell where the Mito symptoms end and the Chiari ones begin, so no one really wants to look at the moment. I mean, I can't think of a way you'd be able to tell unless you chose the surgery. Since he had the same symptoms from the Mito first, it's not like fxing the Chiari would make them all magically disappear.

The neurometabolic specialist doesn't really think too much about it since compared to Mito it's really not that big of a deal. I can see her point, but as mom I still want to know if there is anything I could do to alleviate even a few of the things he's got going on.

We'll just let each specialist know and see if any of them want to persue it. We are going to ask our regular Neuro if we can get a spinal MRI done since he had a sacral dimple too. Aside from that I don't know if there's really anything to do.

I did talk to 2 different Chiari specialists yesterday and today. They were more interested in the oddness of it I think. They both want the CD's of his MRIs but neither thinks that he'd really benefit from surgery.

I'm fine with that right now. I'm not overly fond of brain surgery, lol. As long as it doesn't cause him pain or more issues, I'm okay with it. Now, if he has a syrinx as well then he'd have to be decompressed in order to treat the syrinx. I don't have any reason to think that he does have one though. So for now we just are all saying "that's weird" and moving along. But I do wish I could just know what might be related to that instead of the Mito. Since mito isn't fixable and Chiari is, it'd be nice to have issues we could fix for once or at least have a chance of fixing.

 

[usolyfan]

My dd has Chiari II.