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Old 12-03-2004, 03:32 AM   #1
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rocket56 HB User
Seizures Worse

Hello everyone, I have wrote here before. I have a 27 year old daughter married with 3 children. We live in arkansas. She has seizures. Lately they get so bad she seized Thanksgiving for 3 hours straight. The hospitle gave her some seizure med. iv and sent her home she then seized after we got home for another 45 minutes. On thanksgiving the Dr. was very nice, said they were the closest hospitle and said if we had any more trouble to bring her back. They had grounds to admit her but The neuro wouldnt come to the hospitle on a weekend much less an holiday weekend, they said they wouldnt do anything for her we couldnt do ourselves, The next day she started having blood run out of one ear. (She had had no trouble with that ear before the 4 hour 15 min bout of seizing the day before.) We were very worried. We took her back to the er and I over heard the Dr. saying why did she come here we cant do anything for her here and they literally put her in a wheel chair (seizing) and wheeled her to the car put her in and waved by. Has anyone else found Dr.'s Er.'s dont want to deal with seizure patients. We still cant find a Neuro to help her and Last night she seized almost all night. She lost continence and everything. We took her to the Teaching hospitle here, and they iv'd dilanten, she is on lamictal right now, which seemed to help but she is very drunk, acting. She was on dilanten before when she was 16. I dont remember that doing that to her then. I dont know what we are looking for here, what response I need. Just to know there are others in this world that have similar problems helps some. She is going to fly to California the 15th with her hubby and children to see if they can find a Dr. to help her. We cant seem to find one here in arkansas. What a shame. She has to move to another state to get help. Now my daughter and g-children will be far away from me for the first time in my life. Im so devistated. She does have a support group there her father is there so that will help her(but not me.... ) Does anyone else find the Dr.s less than helpful trying to find a solution to their problem? Help I dont want my daughter to move away!!!

 
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Old 12-03-2004, 06:14 AM   #2
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kayakmom HB User
Re: Seizures Worse

I am so very sorry that your daughter is having so many seizures!! Sounds like an awfully scary time!

I have heard many others who have trouble with ER docs not helping in cases of seizures. I am highly worried that he turned her away seizing with blood coming out her ear!! I would file a complaint.

Does she not have any neuro right now? Why? I hope she finds better care in California than she is able to get now. It is so hard to have any grown child move further away, but especially hard since she is having such severe health issues now...I am sorry that she is having to move away. Certainly no easy answers for that...

She needs to find the best Comprehensive Epilepsy Center she can and go there. They usually can help when a regular neuro fails....
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Old 12-03-2004, 06:57 AM   #3
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mnt89 HB User
Re: Seizures Worse

That's horrible! I'm very sorry to hear about that, and will keep you all in my prayers. Our ER here doesn't usually admit for seizures, but they will in the event of status epilepticus. They did keep me in the ER all night once for monitoring and IV meds, but that's about it. The dilantin in the IV is usually a high dose and absorbed ver quickly, which is probably why she was feeling so drunk - I speak from experience. Is there any reason why she might be having so much trouble now? I think they should have kept her in, just in case of status elepticus....anyway, hang in there....we have some good Neuros here in Texas ....just right next door, maybe she could check on some of them.
-Mike

 
Old 12-03-2004, 11:26 AM   #4
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tkdmom96 HB User
Re: Seizures Worse

Hi Rocket,

We've spoken before about neuros...you need to find someone ASAP. I don't think flying in an airplane to California is a good idea. If something should happen on the airplane, they won't know how to handle it and they can't just do a quick landing to satisfy your family with 100-200 other people on board. I would guess that flight would be about 2 1/2- 3 hours long? I wouldn't recommend it, with the seizures she's having right now.

Get on the internet and start reading for neuros in Texas. The University Texas-Houston is suppose to have a Comprehensive Epilepsy Center there. Our Epi's associate did some of his Epileptologist Fellowship there. You need to find an EPILEPTOLOGIST, not a regular neuro. Find a phone number and tell them of her serious seizuring. They should be able to make accomodations to see her soon. I am shocked the ER didn't order an MRI or something for her, especially with blood coming out of the ear! That is ridiculous! That is an indictator of head trauma. I agree with filing a complaint, but you have something else to do first!

If your daughter's seizures are as serious as you say they are, you need to get moving NOW! No more waiting for whoever or whatever or whenever. She needs help NOW. And as Dr. Phil would say, "DON'T LET THE SUN SET ON ANOTHER DAY BEFORE YOU TAKE ACTION!" He uses this saying when dealing with people who have serious situations that need to be dealt with. I'm afraid if you don't get moving on this, something very serious will happen. Her seizures are way beyond any length of time that is acceptable. They are just WAY too long!

Please come back and let us know what you have chosen to do. Again, I would not put her on an airplane that could jeopardize her or any other passengers. Please start looking at Texas as Mike also mentioned above. You could also look into Chicago, Milwaukee, Minnesota, Ohio, and Georgia has a great facility. Texas is still your best bet.

Do a Google search for:

Comprehensive Epilepsy Center

Comprehensive Epilepsy Clinic

Epileptologist

Take care,
Vicki
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Old 12-21-2004, 06:40 AM   #5
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rocket56 HB User
Re: Seizures Worse

Hello All,
sorry it has taken so long to let you know what is happening. Yes she did need a neuro and we realized that, but they just tossed her around here like its a little circle you dont have the option to choose your dr. here seems as they are all in a group and if you didnt like one, sorry your not to see any. We waited on one referral in Little Rock for 6 months to get in the waiting room and wait for 3 hours to be told at the desk the dr wouldnt see her. She cryed and begged for help. It was so sad and they refused, He was supposed to be a specialist on epilepsy. Also the closest thing to a epy here is another dr. that will not take medicade and refused to see her.
She has taken family and flew to Calif. where a neuro. Immediately saw her and said it sounded like a challenge to him and he hadnt been taking new patients, but would accept her. And we wait to see what happens there. Flight went well. She is at her fathers now, ( who hasnt seen the siezures and is quite beside hisself about them) And has a support group there. I wish I had known about the epi.'s in Houston. We would of tried that if I had known sooner. We did get her an web cam apt with a specialist at Jons Hopkins but we cant afford to go all that way to see a dr.
I wish I knew where to complain about the service she got here, In arkansas. There has to be more people here in this state suffering because of the lack of knowledge here it is sad. Id like to do something about it!!! anyone with some suggestions?
Merry Christmas and a Happy New Year, To you all and May God Bless each and every one of you..... sherrie

 
Old 12-21-2004, 07:09 PM   #6
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tkdmom96 HB User
Re: Seizures Worse

Hi Sherrie,

I am VERY happy to hear the fight went well...that was my biggest worry. Many airlines don't like to fly people who have E.

I wish the best for your daughter. I hope she finds the help she needs there.
Should she go back to Arkansas, head to Texas. My Grandpa lived in Hot Springs for almost 20 years, during the Clinton govenor years and all. He liked the area, but said the medical stuff stunk. I guess we're spoiled in other areas of the country.

I would contact the state medical association or medical board to report the doctors and lack of care. I would start right at the top...even consider contacting one of your state congressmen/women. They should be able to tell you who to contact to file a complaint. The fact that she receives medicade is a govermental issue. GO GET 'EM! Do it for your daughter and the others in your state that are being "passed" over. That is not right and is down right negligent! She NEEDED help, and was refused.

Have a wonderful Christmas and please come back and let us know how she's doing...

Vicki
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Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.

 
Old 12-21-2004, 11:52 PM   #7
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rtyndall HB User
Re: Seizures Worse

I'm so sorry to hear your experience in the ER was a terrible one. The hospital should be the one place you should be able to get all the help you need. Seizures that last that long definitely require medical attention from what I've researched.

I have a host of medical issues and have found that out of all the doctor's I have seen, these Neurologists are a different breed. Knock on wood, the ER docs I have had to deal with have been great. My latest episode involved two seizures (one in the ER) and I was admitted overnight for monitoring and the whole 9 yards.

I think there are good doctors and bad ones anywhere you look. If you feel you haven't received the level of care you deserve I would certainly not be shy about talking to the head doctor or hospital administrator. Most want to help, but Epilepsy is so misunderstood my so many.

Good luck in the future.

 
Old 12-22-2004, 09:19 AM   #8
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rocket56 HB User
Re: Seizures Worse

Well I wrote my congressman this morning and also the hospitles whom didnt give her the standard care, for an epileptic seizing that long. I also went to the Ar medical board and I have to go there to tell them. I also told the hospitles ect that i would go to the news papers where ever I had to to keep another family from having to be split up because of poor health care in this state. Thankyou for your genuine concerns and I will keep u posted of any new updates. She already has got financial help, And a doctor that said she sounded like a challenge to him and took her case, In 2 weeks, that is more than we got in 2 years here. Happy Holidays God Bless you all!, Sherrie

Last edited by rocket56; 12-22-2004 at 09:21 AM.

 
Old 12-25-2004, 11:42 AM   #9
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tkdmom96 HB User
Re: Seizures Worse

AWESOME SHERRIE!

It sounds like you have it all covered...I forgot about the newspaper/tv avenue. They LOVE a human interest story. That could really get things heated up.

I'm so happy your daughter has a mom that is willing to do something about the lack of care she got. There is no excuse for it. She is one lucky lady!

I hope you had a wonderful Christmas and that your daughter gets ALL of the help she needs. Please keep us posted on her...

All my best,
Vicki
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Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.

 
Old 02-22-2005, 07:42 PM   #10
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rocket56 HB User
Re: Seizures Worse

Hello Everyone. Its been a while since Ive posted. Just wanted to let you all know Im still here and include everyone in my prayers daily. I Also wanted to let you all know that my daughter has a apt. With epilepsy center in San Fransisco on the 28th. Calif. has done more for in a few months than Arkansas did in years. Keep us in your prayers Im praying this will be our answer. Her seizures are somewhat better. She is not seizing for hours at a time now. She actually goes one day without any, then 3 or 4 the next day. That is a major improvement for her. I read all the posts in here and wish i could do something for you all. Praying for yours and mine..... In arkansas.... Sherrie

 
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