Bad news from neurologist and need to know what to do

I don't know how to ask the question but basically long story short my daughter has epilepsy and I was told on Thurs that her right side of her brain is deteriorating because of her seizures. The doctor is having us try this new diet that is like the Atkins diet but with Carbs. (High protein low starch). I need to know (or would like to know) if anybody knows of any good children's hospitals that IF she ends up in the hospital because she has deteriorated that bad (she is left handed) that is good and I can stay with her? We live in Mi.

Parent Answers to "Bad news from neurologist and need to know what to do"

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Two suggestions:
1. Ask the specialist about brain cells regenerating..... they do.
2. My 15 yo epileptic son died in his sleep and no apparent cause of death could be found. He had been going through a major growth spurt, final COD was determined to be a seizure while asleep in which he stopped breathing and because he was asleep he didn't know to start breathing again. I am also epileptic and have sleep apnea so I sleep with a small breathing machine to help with the apnea. I believe it also helps with seizures during my sleep. After my son died I asked his neurologist (a pediatric neurologist at UW-Madison) why teen children weren't routinely given C-PAPP breathing machines and his response was that it would be a good idea to be safe. You may to consider this - to be safe. Good luck in your future travels. I know I met many, many wonderful people in my son's and my journey.

I already travel up to Anne Arbor every 6 to 8 months for her urology. I am going to continue to do more research and appreciate the links. I will be sure to check them out. I would like someplace that is a good hospital but also close enough so my other daughters and husband can also be there for her as well. It is a tall order I know but I don't want to neglect the rest of the family either.
I am from Southwest Mi. Down between Schoolcraft and Battle Creek.
Thanks again for the links. I have a couple of months before her doctor decides on what he wants to do exactly. He also works out of Anne Arbor.

I also wanted to say that if you do end up coming to the Children's Hospital here in Detroit, you can stay with your daughter.

www.genetics.wayne.edu/jloeb/contact.html

The web link will take you directly to the clinial appointment line.
I'm from Michigan (metro Detroit area). PLs. let me know if I can be of any more assistance.

Hi,
Sorry about your daughter's condition. I don;y know where abouts in MI are you. If you are South East Michigan, you can try contacting the following guy

www.med.wayne.edu/neurology/faculty_staff/loeb.asp

I know Dr. Jeff Loeb personally, and he is an expert in epilepsy at Children's Hospital of Michigan.
You obviously have seen many doctors and know almost everything there is to know about epilepsy. However, I believe it's important to find a doctor who is also an active researcher. When you go to his web page, it'll take you to the contacts, and perhaps you can make a call and talk to somebody for guidance.
Best of luck.

Thanks for the advice. I know a lot of this i could of found out myself but i am totally at loss on where to start. It hurts me watching my daughter deteriorate and I only want the best for her.

I am not from Michigan, but I googled the epilepsy foundation in Michigan and here is a listing of epilepsy centers located in Michigan:

www.epilepsymichigan.org/template.php?pid=81

In addition, here is a link to the University of Michigan Health System's Centers:

www2.med.umich.edu/healthcenters/

Also, here are two names of nationally recognized specialists located in at Johns Hopkins in Maryland:

www.hopkinsneuro.org/epilepsy/doc.cfm/expert/Eileen_Vining

www.hopkinsneuro.org/team_member.cfm/expert/Benjamin_Carson

(The source for the two specialists provided above was from a Discovery Channel piece on "brain plasticity" found on youtube.)

Hi...I'm not from Michigan, but many medical facilities nowadays allow parents to stay with children when they're hospitalized.
I know this isn't what you've asked for, but I'd like to recommend that you join the forum at www.millermom.proboards107.com where there are several individuals dealing with seizures...Is your daughter seeing an epileptologist? I know one of the posters at the site I mentioned above does see that type of specialist. You might also want to find out if your doctor can hook you up with an epilepsy support group in your local area, because networking through other parents is often the very best way to find out about good resources nearby.

Any contributed content above is the subjective opinion of that member or external author, and not of GreatSchools. GreatSchools does not check for accuracy in community posts or verify the contributor’s identity. If you are searching for health-related advice we strongly suggest you seek professional medical support. View our Community Guidelines for more details.

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Bad news from neurologist and need to know what to do

Parent Answers to "Bad news from neurologist and need to know what to do"

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