12yr old daughter recently diagnosed with Chiari 1

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12yr old daughter recently diagnosed with Chiari 1

Postby comikal3 » Thu Oct 08, 2009 5:12 pm

My 12yr old daughter was diagnosed with JRA and Lupus in March of this past year. About 6 weeks ago she began having severe headaches. Along with the headaches she has had a poor appetite and a change in her sleep patterns. She is often very restless at night but then falls asleep during the day or any time we are in the car even if it is only a quick trip to the store. She even fell asleep standing up in the kitchen waiting for me to cut an apple for her. In the past week she has also had two instances where she experienced numbness in her legs. She had an MRI done a few weeks ago to look for a cause of the headaches related to either the JRA or the Lupus instead they found that she has a Chiari 1that is between 7 and 8mm. We saw the Neuro surgeon yesterday, they said that because they were not looking for this when they did the MRI the images they got were not ideal but that it appeared to be a minor case and they do not think she needs any type of decompression surgery. Obviously I was relieved the problem I am facing now is that I still have no solutions, suggestions for improving/eliminating the symptoms she is experiencing. The Surgeon made the comment that 6 weeks is not very long to have been experiencing the headaches so they were not overly concerned but for me the thought of seeing my daughter curled up crying on the couch each day because her head hurts so badly and being too tired to function normally is unbearable.

Any suggestions for providing her with some relief would be greatly appreciated.
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Re: 12yr old daughter recently diagnosed with Chiari 1

Postby youngwife » Thu Oct 08, 2009 5:34 pm

Hello and welcome!

Ummm, I think I'd get another opinion, honestly. I don't think that living in pain is acceptable. And with the symptoms she is having, it doesn't sound to me like her Chiari is "mild". :|

I have two daughters with Chiari. We have tried Diamox (a diuretic) with both of them, and it was helpful for a while. My oldest has had a decompression surgery, and my second oldest (whom is 12) has not had surgery.

I am very sorry that your daughter has so many health problems. I bet she is a trooper, though.
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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Re: 12yr old daughter recently diagnosed with Chiari 1

Postby lttutrow » Thu Oct 08, 2009 11:20 pm

My 12 y.o. daughter had her surgery in Dec. of last year. We had an initial MRI done to rule it out for her because she was having periodic headaches and her brother has a CM. She kept track of the headaches in a journal, and when we went for her consult with the nsg., that really helped to explain how often she was having them and where on her head. I agree it's a good idea to get a second opinion, if you post what major city you are close to, someone will chime in with some good choices in your area.
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Re: 12yr old daughter recently diagnosed with Chiari 1

Postby jupes » Fri Oct 09, 2009 11:50 am

Hello and welcome!

Sorry your DD is dealing with this along with her other problems! My daughter was 12 yrs when diagnosed with borderline chiari and syringomyelia. When CM is found, most experts recommend a complete spinal MRI to check for a syrinx and a CINE MRI to see if the chiari is blocking the flow of spinal fluid. Sounds like your DD's CM is causing symptoms. I agree with the others and would seek another opinion from a CM/SM expert. You may have to travel but it is well worth it! What state do you live in?

Good luck and hang in there!
Julie
14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
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Re: 12yr old daughter recently diagnosed with Chiari 1

Postby comikal3 » Fri Oct 09, 2009 1:23 pm

Thank you to all of you who responded with your advice. I had never heard of Chiari until the Nurse Practitioner who is treating her for the JRA and lupus called with the MRI results. Amazing to hear the stories of all the families and children affected by something that up until two weeks ago I had never heard of. At her Nurses recommendation we have started a headache journal, as well as journaling any other symptoms she may have. One of the problems we seem to be having is that so many of the symptoms she has can also be explained by her other health problems so it is difficult to know the real cause(muscle weakness,fatigue,vision problems,fine motor skills and even mild scoliosis) We live in Milwaukee, Wisconsin so if anyone has any Dr. recommendations I would appreciate it.

I hope all of your children are doing well and will keep you and your familes in my thoughts and prayers.
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Re: 12yr old daughter recently diagnosed with Chiari 1

Postby jupes » Fri Oct 09, 2009 2:24 pm

Dr. Iskander in Madison is a Peds expert. He is on the ASAP Medical advisory board and hosted the Chiari Medical conference over the summer.
http://www.uwhealth.org/americanfamilyc ... nsin/10260


If you can travel to Chicago, Dr Frim at the University of Chicago Medical Center is highly recommended for kids too.
Email
dfrim@surgery.bsd.uchicago.edu
Office Phone
(773) 702-2123
Office Fax
(773) 702-3518
Office Postal Address
David M. Frim, MD, PhD
University of Chicago Medical Center
5841 S. Maryland Avenue
MC 3026
Chicago, IL 60637

Good luck! Keep us updated!
Julie
14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
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Re: 13 yr old recently diagnosed with SM

Postby LoriM » Wed Oct 28, 2009 11:09 am

Hi I am new to this site and I am confused and need help. Two yrs ago my then 11 yr old daughter fell off Hot Tub and broke L3 Transverse Rod in back. Shortly thereafter, she devloped tingling in hands, arms, pain, etc. An MRI w/GAD showed Syrinx down the thoracic. Just recently had another MRI done and the Neurosurgeon's Asst. believed it was not a "Chiari"; still says it is developmental and is "tiny" -- not making an issue said that we can come in two weeks to talk about it.

I am crazy because my 13 yr old daughter is still exhibiting symptoms and I don't see in anything that I read how this could be developmental and go from at least C2 down the thoracic. I would like a Neurosurgeon (Pediatric) in NY State for a second opinion and would like to feel a little more comfortable with this.

Thank you to anyone --
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Re: 12yr old daughter recently diagnosed with Chiari 1

Postby jupes » Thu Oct 29, 2009 9:20 am

Hi LoriM !

Sorry your daughter is having these problems and hope you find answers. It is always good to seek a second or even a third opinion. If you start your own post Re "looking for peds NS in New York", razzle may have some names for you. The only place I am familiar with is The Chiari Institute and I know they treat kids too! There are other Peds experts in different states if you are able to travel. Good luck!

Julie
14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
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Re: 12yr old daughter recently diagnosed with Chiari 1

Postby kellbell » Thu Oct 29, 2009 11:43 am

Hello,

Dr. Elizabeth Trinidad is a pediatric neurosurgeon based on Long Island in New York. She was wonderful with our daughter and we are thankful we found her. The name of her firm is Neurological Surgery, P.C. They have a website www.neurosurgeryli.com. Good luck and prayers to your family.

Kelly
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