My granddaughter's seizures. HELP!!

Posted by mmaryemc @mmaryemc, Sep 17, 2018

HELP! I am at a loss as to what I should do about my granddaughter. 8 weeks ago I joined this group because my granddaughter was put into a medically-induced coma while the doctors tried to control her seizures. Now 8 weeks later she is still in a coma and the doctors have tried approximately 20 different medicines at different doses. This past week they started electroshock therapy. All they are doing is trying to stop the seizures. They said they can’t let her wake up. It could cause brain damage. They aren’t trying to find out what is causing the seizures or where they are coming from. My son cannot afford to transfer her anywhere else. His insurance won’t cover any of that. I am going crazy wondering what the doctors at UNM Hospital in Albuquerque New Mexico are going to want to try next.

Have the doctors put your granddaughter on Phenobarbital? Although doctors don’t usually like giving it to children now days, at least in the United States, in this case being so extreme I’d think they would have tried it. It is after all one of the main treatments for Status Epileptcus. It’s been around over 100 years and although I know how we all react differently to meds it stopped my Convulsive Status episodes on more than one occasion. Lorazepam is currently the drug of choice for Status but Benzodiazepines although usually affective especially in children do not always control Status. Dilantin, Phenobarbital, midazolam are although usually given as first line meds. My guess and it’s only an educated guess based on my personal experience is that your granddaughter is likely in part or stage 1 or 2 not sure of the exact terminology of Refractory Status. My apologies if I’m not making the most since here but this is a very emotional issue for me to try and talk about. There is hope, I remember people being in comas for extended times, some not having any side bad effects. One lady being in a coma for well over a year. Like me she didn’t remember anyone after waking but even though we both continued to have refractory Epilepsy including being in more induced comas we both overcame our seizures and I haven’t had one in six or so years now. Leigh at last check was doing good as well. I know what an awful time you and your family are going through and my heart goes out to you all. May God be with your granddaughter and her doctors and your entire family. I’m so very sorry.
Jake

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I hope your granddaughter is better however if not since it has been some time now the longer she stays in a coma seizing the less likely seizure activity will stop.
I’d suggest at this point you ask the doctors about trying or at least getting their opinion of carbon dioxide therapy.
By breathing carbon dioxide, it will make her brain tissue more acidic, which has the potential to help stop the convulsive status seizures.
I have read about its success in a couple patients in England.
Best of luck.
Jake

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@jakedduck1

Have the doctors put your granddaughter on Phenobarbital? Although doctors don’t usually like giving it to children now days, at least in the United States, in this case being so extreme I’d think they would have tried it. It is after all one of the main treatments for Status Epileptcus. It’s been around over 100 years and although I know how we all react differently to meds it stopped my Convulsive Status episodes on more than one occasion. Lorazepam is currently the drug of choice for Status but Benzodiazepines although usually affective especially in children do not always control Status. Dilantin, Phenobarbital, midazolam are although usually given as first line meds. My guess and it’s only an educated guess based on my personal experience is that your granddaughter is likely in part or stage 1 or 2 not sure of the exact terminology of Refractory Status. My apologies if I’m not making the most since here but this is a very emotional issue for me to try and talk about. There is hope, I remember people being in comas for extended times, some not having any side bad effects. One lady being in a coma for well over a year. Like me she didn’t remember anyone after waking but even though we both continued to have refractory Epilepsy including being in more induced comas we both overcame our seizures and I haven’t had one in six or so years now. Leigh at last check was doing good as well. I know what an awful time you and your family are going through and my heart goes out to you all. May God be with your granddaughter and her doctors and your entire family. I’m so very sorry.
Jake

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My granddaughters doctors have tried phenobarbotol, lorazaepam, as well as quite a few other drugs. Thank you so much for the encouraging words. I have been on an emotional rollercoaster. I am at a loss and I'm sorry but I have found myself blaming people for incorrect or bad diagnosis'. Your comments have really helped me. Thank you again.

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@mmaryemc

My granddaughters doctors have tried phenobarbotol, lorazaepam, as well as quite a few other drugs. Thank you so much for the encouraging words. I have been on an emotional rollercoaster. I am at a loss and I'm sorry but I have found myself blaming people for incorrect or bad diagnosis'. Your comments have really helped me. Thank you again.

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@mmaryemc
Below is a response I just now received from my Neurophysiology friend in London. I was hoping for better news but here is her response.

Hi Jake
Lovely to hear from you. All OK here. Well, OK being crazy, with an American/Irish house with two small children and one about to arrive! It's a blessing 😀

Whilst a PET scan does indicate glucose uptake, i strongly doubt it would be helpful in this case. The PET scanning technique has been around for years and if this was an identified clinical use it would be mainstream.

The scan basically demonstrates "hotpots" of metabolism, therefore indicates which body parts or specific areas are using more glucose than others. This is very useful in detecting cancers/lesions if a patient is suspected of having secondary /metastatic spread, or to source the primary tumour if a scan elsewhere has found evidence of cancer spread, for example.

The brain as a whole uses more glucose than any other body part, relatively, I'd go as far to say doing a scan in this situation would be pointless as it's only demonstrating "relative" increased uptake and the brain even in coma will demonstrate higher metabolism than anywhere else. There would be no predictability value attached to those results as they would not be specific.

The fact she's having seizures would imply that there is still a good deal of metabolism in order to generate the brain activity required to make seizures happen.
This though doesn't have any bearing or implication regarding prognosis and doesn't in any way help quantify the amount of remaining "useful" brain activity.

I'm ever so sorry to not be the bearer of hopeful news. Coma is a tortuous condition both for the patient and their families. We know some people can undergo a mild drug induced coma to let the body rest and this helps, and we know sometimes the body does this itself. There's no limit on how long a person can stay in that state, we know people spontaneously can recover to one degree or another and we know sometimes they just don't. It's totally unpredictable.
I wish I could give more positive news or information but I think it's important to be honest and straight.
I'll keep you, and this family, in my thoughts and prayers xx
Anna / Jake

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@mmaryemc

My granddaughters doctors have tried phenobarbotol, lorazaepam, as well as quite a few other drugs. Thank you so much for the encouraging words. I have been on an emotional rollercoaster. I am at a loss and I'm sorry but I have found myself blaming people for incorrect or bad diagnosis'. Your comments have really helped me. Thank you again.

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@mmaryemc – wanted to check in with you on your 14-year-old granddaughter who was put into a medically-induced coma due to her seizures and the physician's concern about brain damage. Has she awakened? Is she now in a rehab facility?

Also wondering how you are doing with all of this?

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