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chairi malformation 1
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An_256279 posted:
Back in april 2013 my three year old daughter quit breathing on us and we were told it was a severe seizure and got an eeg and found she was stage 1 malformation n is on kepra and trileptal n she just recently had another episode three days ago she had multiple sizures n her oxygen was done n she was blue and un responsive for two n half jours her nerologist said her seizures have nothing to do with her malfornation she gise ti childrens hospitalnin detroit anyone have any info about this nnif there is a chairi malfornation dr plz let me know
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dancer86442 responded:
Hello,


Welcome to my Home. Thank You for sharing your Darling Daughters' Journey. We have had previous members w/ Epilepsy & CM. If you use the Search This Community Tool on the right. Try JoAnn Lord. Maybe still in our archives of previous conversations. Or just use chairi malformation. More previous conversations w/ helpful links/info can be found.


Question?? Have you consulted an Epileptologist? A Specialist in Braind disorders. More Informative than most Neuros.


Insist on changing her Meds. Or seek more info on 'alternative' treatment. are you keeping a Journal? Please read the Journal Info in Helpful Tips.


I do hope you continue to share your Journey. We are here to Suport you as well as supply you w/ Info. BTW: Popular Discussions 'Weblinks for Epilepsy' I believe the CDC has more info for you. Educate yourselves & your daughter. Don't give up Hope. Know that You & Yours are Not Alone.


Hugs for All!


Love Candi
March 26 Epilepsy Awareness Day Advocate
 
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sshay07 responded:
K thanks its just so strezsful tgat no one will tell me anything of her nerologist n stuff but it was scary
 
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dancer86442 replied to sshay07's response:
Hello sshay,


I can understand your Frustrations w/ DRS. None of my DRS ever told me anything, either. Shoot, I thought I was 'cured' after taking 1 mth supply of Dilantin. I didn't realize meds mite/would be Life Time. I had No Clue what a Seizure even meant. Took me over a yr to seek treatment. Clik on my pic or ID to read more about my Journey.


Yes, seizures are Very Scary. But, from all reports, we don't hurt while having them. Unless we hurt ourselves on a 'foreign' object in our way. Plus, we are usually real sore after seizures. What your daughter experienced sounds like what is known as Cluster seizures also known as back to back seizures. Rule of thumb: If seizures last only 1-2 minutes each, no hospital is required unless we injure ourselves. When she started turning blue, did you turn her on her side? We can't swallow our tongues, but, fluids can build up & block our airways. Being unresponsive after a seizure is 'normal'. Basically, all we are doing is 'sleeping it off' while Our bodies/brain are recouping. It is, also, not unusual for us to awake dazed & confused. As scary as it all is, as her caretaker, you need to take a deep breath & remain Calm. Easier said than done, I know. But, this is for your Child! Some say we can feel the tension that surrounds us & that causes us stress. stress can prolong seizures. So, talk to her, sing to her, just remain Calm.


Strange!!! WebMD must have seen your post. When I checked in this morn an ad appeared w/ More Info for Chiari Malformation. So, type this into your URL & Learn More. us.institutchiaribcn.com I will, also, contact my GF who has chiari malformation & ask her if she will rejoin us & talk w/ you. If not, she will give me more info. But, consider this, she has lived w/ both Epilepsy & malformation for YRS & although the road has been a Long one, she has survived & has raised several children w/ Chiari, although, so far, none of them have Epilepsy. She has led a pretty 'normal' life despite everything.


You are your Daughters' Best Advocate. so, Keep Learning all you can from your computer. Also, keep in mind, that if her DR is not willing to explain anything to you, you really should seek another DR/opinion. Find a DR who Will answer your questions. epilepsytalk.com (no need to join to read articles) has links in Tips, She has a List of Drs, recommended by others' from all over the states. Maybe, you can find a New DR in your area listed there. Hope this helps. Hugs!


Love candi
March 26 Epilepsy Awareness Day Advocate
 
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joaustralia replied to dancer86442's response:
Hi ladies,
It's Jo from Oz. I'm Candi's friend with CCMs. I've just done some research on Chiari Malformation which is a condition in which brain tissue extends into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward.
My condition differs from this. It is Cerebral Cavernoma Malformations which are collections of small blood vessels (capillaries) in the brain that are enlarged and irregular in structure.
So I don't think I'm going to be able to assist with this matter anymore than Candi can. I learnt so much by doing my own research. I contacted a university in the States that was doing research on CCMs and asked if my kids and I could be participants. They accepted and I found out that our condition is caused by a mutation on our DNA. I even taught my neurologist a thing or two about our condition!
 
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hawiian_girl11 responded:
I knew someone who had that had that same thing but it was a HE and he was only 8 and went to one of the churchs my mom had served.

his mom was giving him a hair cut and he fell off the chair and wasn't breathing and they were doing CPR on him until EMS could get there and as they got there he started breathing again. THey started IVs One for Lactated Ringers and one for Ativan, and got him on O2. now he has full blown epilepsy.

Severe Tonic/Clonic szs. THey have to atch him like a hawk when he goes into one in case he stops breathing again.

I have heard it thru the grapevine that it has happened several more times.

EMS took him several times to the hospital where he stayed for several days for that.

Please be careful and wathc her so that does NOT happen again.

I almost died from this disorder until the VNS was implanted.

Now I have had it almost 7 yrs nad it is winding dwon again and may have to have it replaced again. will not find out until I fly in to see my Neuro who only does VNS on me. I will see him to have it checked on the 22nd among other things.

I wish all the best for you and hope that that NEVER happens again!

Nancy


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