family history of chiari????

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

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family history of chiari????

Postby slwelle » Thu Jun 25, 2009 9:19 am

:shock: Hi,
I am a mother of 3 and my 2 youngest which are boys both have Chiari, ,my 2 year old had to have a shunt at 9 months, now I just found out that my 10 month old has CHiari and he grabs his neck and has breathing problems, he wakes up crying and can't get comfortable to sleep at night, he tries to bend over backwards. His doc who we just seen mention decompression surgery and waiting a couple months to see if he develops hydrocephalus like his older brother. Has anyone known personally of a baby having decompression surgery???? or anyone have more that one family member with Chiari??? I know you can have CHiari and have no symptoms so if you were me would you have your other child tested and maybe even yourself or your husband??? I am kind of in shock just learning my baby boy has this also so I am confused any suggestions or stories would help.
Last edited by slwelle on Fri Jul 03, 2009 8:15 pm, edited 1 time in total.
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Re: CM

Postby jupes » Fri Jun 26, 2009 7:38 am

Hi slwelle and welcome!

Sorry both your little ones have been diagnosed with cm. :( I don't personally know of any babies having this or having the surgery. CM in most cases is something you are born with but in the majority of cases symptoms usually appear in adulthood, adolescence,or after some type of injury. There are parents on here with very young children too and I have read that some cases of cm have been diagnosed in infancy.

I think about 11%-18% of cm patients have other family members with this and researchers are still searching for a genetic connection. The literature suggests other family members be tested if they experience symptoms. My 13 yr old was diagnosed with cm and sm and I too worry about my other children and will have them checked if any symptoms are noticed. You should ask the Doctor if he would recommend testing for the rest of the family since you already have 2 children with this.

This ASAP site has great educational articles and a couple online videos to watch about cm in children. The chiari institute website has some great info too. The best thing you can so now to help your kids is educate yourself and make sure your kids are being seen by a pediatric neurosurgeon that specializes in cm/sm. I hope you have a good ns because this condition is rare, especially in children and many of us have had to travel to get expert care.

Good luck and know we are all here to support you!

(((HUGS)))
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: CM

Postby slwelle » Fri Jun 26, 2009 9:13 pm

I sorry to hear your child has cm and sm. Thank you so much for your message, it's nice to talk to others who know about this. I don't think my daughter has symptoms but I sure would like to know she is o.k. I will post if my son has surgery. THank you.
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Re: CM

Postby Hope143 » Tue Jun 30, 2009 9:19 pm

Hi slwelle,
I am so sorry to hear of your ordeal. Just keep the faith!!!
I think you should get in touch with Julie Carter. I've been in touch with her, she runs a support group out in Montana and has three
daughters all with Chiari. She is a wonderful person and has helped me with information. Extreme Home Makeover did a feature on her and
her daughters. You can reach her at: julie@chiaripeople.org

Best wishes to you and your family!
To support and guide my Magnificent Teen to reach his highest potential and overcome his health challenges!
28mm CM, 13mm syrinx, TSC, lymes, decompression, crainectomy, laminectomy, TC untethering in Barcelona, Spain. Better days ahead!
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Re: family history of chiari????

Postby Sara » Sat Jul 04, 2009 7:00 am

There is a genetic prevalence in some families. Dr. Ashley-Koch is doing a study now at Duke Univ and is recruiting families her email is ashle021@chg.duhs.duke.edu if you are interested in participating. We do have children diagnosed with Chiari. I can give you an email of a mom whose 1 yr old had decompression if you'd like. (email me at sarap@cfl.rr.com)

I have Chiari with no symptoms, my mom was dx with a syrinx and my daughter also had a syrinx. Later she developed an acquired Chiari from an lp shunt.

Hang in there and get as much info as you can.
Sara
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Re: family history of chiari????

Postby lcolangelo » Sun Aug 02, 2009 12:22 pm

HI,
I have 3 children with chiari-- my oldest daughter-now 10 has had 4 decompressions, my 8 year old has a mild chiari, still hasn't needed surgery, and my 3 year old son is having surgery next Tuesday. He began having headaches and choking, so we had him tested "just in case" and they found a 24 mm chiari. My daughter was 2 when she had her 1st surgery, she was having many breathing problems as well-- she was one of the youngest they had done. We see Dr. Menezes at University of Iowa== he is one of the best in the world. Good luck to you, you are in my prayers!
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Re: family history of chiari????

Postby youngwife » Sun Aug 02, 2009 11:40 pm

Lovemyblessings (Dawn) is a member here, and a good friend of mine. She has six, and of them, three have Chiari. Two have had shunts, now. If you would like her email address, just pm me or email me at ymcs2@juno.com. I am sure she would be happy to share their experience with you. Her youngest to have surgery was 1, I believe.
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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