Treating children vs. adults

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

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Treating children vs. adults

Postby Beach4me » Sat Feb 23, 2008 8:38 am

Thank you to everyone who has sent me private messages and offered their experiences. At this point, this board, along with others have been my main source of information.

One more question.

It appears that children are treated more proactively than adults. Is this true and if so, what is the reason?

Has anyone just had their child monitored? Did symptoms progress? Her symptoms seem mild in comparison.




FYI: Daughter 12 CM1. Just diagnoised. Appt with Dr. Fuchs @ Duke next month.
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Postby brianfsmom » Sat Feb 23, 2008 2:21 pm

Hi,

We didn't have the option to monitor, due to a large syrinx, but certainly monitoring is an option if there is no immediate need for surgery.

I'm not sure that children are necessarily treated more practively than adults, I think the key is that since the progression is not fully understood, if there are problems beginning to arise in childhood, it is best to stop this progression before some of the symptoms might become irreversible.

In adults, there isn't the added component of growth, so I think it's easier to adopt a wait and see attitude. Chiari and/or SM can worsen rapidly during growth spurts. This is why my son is monitored every six months by his neurologist - even after decompression, he has to be closely followed, as he is growing rapidly.

I remember when he was being diagnosed, 3 years ago, TCI had a page on their website stating their criteria for surgical candidates. It had to do with neurological deterioration, presence of syrinx (and size/location?), and quality of life. I believe these factors were weighed equally when considering surgery for an adult or a child. If you poke around their website, you might find it. Maybe it was even one of their educational videos; I can't recall exactly.

Good luck! In some ways, I was glad that we had no choice. It made the whole thing easier because we knew that it had to be done.
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adults vs kids

Postby Sara » Sun Feb 24, 2008 9:10 am

There are many children who do not require surgery and some progress and some do not. Remember, chiari is considered a congenital condition, so if someone is not diagnosed until they are in their 30's they were asymptomatic their whole childhood. Many children are discovered to have a chiari when undergoing an MRI for a different reason. Treatment is based on symptoms, not on films.

You may not find a lot of parents with asymptomatic kids on this board simply because they aren't worried about it. I have a chiari and have no symptoms- it doens't even cross my mind that it is there.

Sara
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Postby JWatson » Sun Feb 24, 2008 3:31 pm

Beach4me,
We are a patient of Dr Fuchs and have been very pleased. Tyson was complaining of HA only, but they were not bad HA. The reason they done surgery on him was because of his spinal fluid flow. I feel like that if he had not had a fluid flow problem that they would not have done surgery, bc his HA were not that bad. When is your appt at duke?
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Postby Beach4me » Sun Feb 24, 2008 8:18 pm

March 13th.

She has headaches everyday. What the symptoms of blood restriction?
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Postby Beach4me » Sun Feb 24, 2008 8:21 pm

Sara,

I am hoping that monitoring with no progression is the answer. After repeated visits to the Dr. with the headaches, fatique, some vision issues and body aches, they started a series of test. And CM1 was the answer with a referral to a NS after MRI and CT scan.
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Re: adults vs kids

Postby youngwife » Wed Feb 27, 2008 1:31 am

Sara wrote:Treatment is based on symptoms, not on films.


This is very true. For us, surgery was the best option because our daughter was deteriorating right before our eyes. She was not functional. She could not even dress herself or shower without help.

Plus, she had two "impressive" syrinx, so that was also in the equation.

Each scenario will have a different set of treatment options.
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
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Adults vs Children

Postby jonesjam » Thu Mar 06, 2008 5:11 pm

Hello. I understand your frustrations. I have a 14 year old daughter that was diagnosed with a large CM (extends down into C2) and a large syrinx in January 2008. Her main complaint is severe headaches in the back of her head (they are not typical Chiari headaches or tussive headaches), fatigue, and just general "don't feel good". Her nuerological exam is 100% normal. No decreased sensation, numbness, tingling, etc. She does have an abnormal CSF flow. We have one group of neurosurgeons (adults not pediatric) that say no big deal, if she ever has neurological symptoms ( and they don't consider her headaches a symptom) come back to see us. A pediatric neurosurgeon wanted to schedule her for surgery within a week. Two totally different approaches. Insurance denied our claim and we are now caught in the middle of an insurance battle. In the mean time, she misses 2 -3 days of school a week and has had to drop out of all her extra activities. Her quality of life has gone way down hill. It is very confusing. No one wants thier child to go throw a major surgery if they don't need it but there has to be a better answer than living off the pain meds. I share your frustration and am sorry you too are having to face these difficult decisions. As a parent you really only want what is best for your child... it can just be hard to determine what that is.
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