Worried mother

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Worried mother

Postby Patti » Mon Oct 22, 2007 1:32 pm

I saw Extreme Makeover last night and now am more worried about our son. Our son was diagnosed when he was 5 with Arnold Chiari Malformation (he is now 8). He was in the hospital for something else and it was by chance that they found his Chiari by MRI. They pretty much told us to live our lives and not worry about it. He had another MRI one year after his release from the hospital and they said it had not changed. After seeing the show last night and finding this website, I am more worried now than before. Does this mean I or my husband have Chiari? Does our other son have it?? Do we all need to have an MRI? Will our son eventually start having all the problems that so many other people do?? This is all so much to take in. Thanks for the support.. :D
Patti
 

glad you found us

Postby Sara » Mon Oct 22, 2007 4:12 pm

I'm glad you contacted ASAP. Not all pateints with Chiari have symptoms and some are so mild they do not require surgery. I am close to 40 and have no symptoms whatsoever, but do have Chiari. So having a Chiari is not the end of the world.

what was your son in the hospital for? He should see a nuerologist to be monitored for symptoms on a routine basis. Right now they usually do not recomend screening of family members unless you have symptoms of the disorder. So if you and dad and brother are healthy, I wouldn't worry too much. Only about 12% of cases are considered hereditary, the rest are just random occurences.

What state do you live in? There might be a good nsg near you that we could refer you to that would help calm your fears.
Sara
Holly's mom
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Postby brianfsmom » Mon Oct 22, 2007 5:45 pm

Thank you for that post Sara,

I saw the show last night and thought it was well done. However - and in no way am I discounting what the family goes through or the severity of anyone's condition - but in the three years I have been reading this and the wacma board, I have heard of perhaps one or two people with the condition who have died, and usually they have multiple associated conditions. I felt that the show cast chiari as frequently fatal. If I had seen that show three years ago when my son was first diagnosed, I would have absolutely freaked out.

None of us know what lies in store for us or for our children, chiari or otherwise. I have the same fears mentioned in the show, with regards to what happens when these kids grow up - hopefully nothing out of the ordinary. I try to maintain a positive attitude towards the whole condition.

Also, I have not had my daughter screened for chiari. Unless she shows symptoms, I am not planning to. I had an MRI for migraines many years ago, and was told it was normal. At this point I have no symptoms that would send me in search of a possible mistake on that end. My husband has never had an MRI. As far as we know, our son is the only chiari family member.

Does anyone know who all of these patients are who died, and perhaps what the cause might have been? That would probably ease the fears of many, I know it would help for me.
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fatalities with Chiari

Postby Sara » Mon Oct 22, 2007 6:28 pm

I can't tell you why the patients she alluded to died, and I'm not a doctor, but I can tell you that patients with Chairi II malformation, a much more severe form that is typically associated with spina bifida, are at an increased risk of serious life threatening complications. This is because the higher likelihood of brain stem involvement. Some Chiari patients also have hydrocephalous, and in some patients this can be fatal if they have a severe form and suffer from shunt malfunction.

Chiari can present with serious symptoms early in childhood. But these are kids who are sick, usually very sick, and the doctors are usually well aware something is abnormal. These kids usually have failure to thrive, and serious swallowing problems. Unfortunealty the problems come in when they are being worked up by gastro's who don't realize it has a neurological component. But the overwhelming majority of kids and adults will not have a shortened life span. Symptoms are usually slowly progressive, or can appear after an injury.
Here is an article on the ASAP website regarding the special issues in young children:
http://www.asap.org/articles/102-1.html

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multiple family members

Postby chiarimom » Mon Oct 22, 2007 8:05 pm

I can only imagine how scared you must be for your other family members. We were also at that point some tme ago.

My youngest daughter, age 17 was diagnosed at age 3. However, she was always in and out of the hospital until she was properly diagnosed at 3 and operated on. She has had muliple surgeries as she has other coniditions along with the CM.

We worried about our older daughter. She did show some symptoms although not totally severe. Our NS recommended that she be tested --- SO....we did and she was positive for CM but so far no syrinx. i also went for an MRI because of symptoms and I am also positive -- no syrinx but connective tissue disorder, neurogentic bladder. My older daughter and i have not had surgery --- just hte younger one.

I am glad that we scanned our oldest and myself. It puts an answer to a lot of questions and now we know what to be careful of in hopes not to provoke anything.
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Postby rydogg58 » Tue Oct 23, 2007 9:45 am

My 5 year old daughter has CM1, SM, and Scoliosis. Her syrinx is 3in thick and runs the entire length of her spine. In January she had surgery and weighed 26 pounds. She has now gained some weight and is up to 30 pounds. They told us she was "failing to thrive". Her surgery was scheduled immediately after seeing her first MRI. Her pain started around age one when she stopped gaining weight. We saw four different gastro dr.s. One gastro dr. at the University of Missouri told me that she had psychological issues only. He told me to get my child under control and her "pain" would stop. About six months after that office visit I noticed two curves in her spine. I took her to her regular pediatrician and she had the MRI that diagnosed everything. It has been a long and painful journey. She now has a wonderful NS. We are going in on the 31st to check on the syrinx again because it has not gone done since the surgery. We are going to have our other children checked because they are all under the 50th percentile in weight for their ages.
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Postby Patti » Tue Oct 23, 2007 1:19 pm

We are in Tennessee. Our son was admitted to the hospital for a neck infection. He started running a high fever and was very lethargic. On day 2 of that my hub and I knew something wasn't right so we took him to the ped. They tried to draw blood but he was so dehydrated they couldn't get a vein to work so they sent us to Vanderbilt Children's Hospital. They did a ct scan and found an absess in his neck. He was admitted and had emergency surgery the next morning because the infection was pressing on his airway. I could go on and on...After one of the MRIs they came to us and said they found something that wasn't related to his neck infection. That's the first time we heard the word Chiari. They had a neurosurgeon look at the films and told us to come back for another MRI in one year. So when we went back the MRI showed the Chiari had not changed. That was pretty much it. They didn't tell us that he would need to be monitored or anything. They just told us some warnings signs to watch for. Luckily he and the rest of us have been pretty healthy since then. He is now 8 and the last MRI he had was at age 6. Thank you all so much for the support. It surely helps!!
Patti
 

Postby brianfsmom » Tue Oct 23, 2007 1:52 pm

Patti

That all sounds reasonable to me. If he hadn't had the neck infection, you would assume he was perfectly healthy. I would make that same assumption and just be aware of anything they warned you about.

All chiari is not created equal...your son might be one of the lucky ones.
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Postby Patti » Wed Oct 24, 2007 10:52 am

Thanks so much.
You're right. If not for the neck infection, we wouldn't even know about the Chiari. I guess watching the show Sunday night just brought my fears to the surface all over again..
I am putting my worries to rest...
Patti
 

Extreme makeover

Postby lisa tyner » Tue Oct 30, 2007 3:06 pm

Hi everyone,
My daughter is 9.Diagnosed w/ cm1 @ 41/2. I have seen her suffer with extreme pain and often wonder what is instore for her. I must say seeing the show on extreme makeover has made me as her as well wonder if the ns has beeen sugar coating things with the idea we'll deal with things as they come up.I was excited to finally see awarness but at the same time it scared the ----out of her and myself.Latley she is compalining of extreme eye pain.Taking her to a specialist in nov to get a complete work up on the eye.I just had orthodicts put in her shoes which has seemed to help with the balance issues she has.I do keep positive and try to joke with her,however I feel the seeing the show was way to deep for her.I wish I had insisted she not see it but I had no idea..Anyone else feel this way.Dana's Mom :?
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