Bath or Shower time

Deana - posted on 05/15/2009

Susan, I'm so sorry for your loss. Your post opened my eyes to generic meds. My daughter's insurance company also just decided that they will not pay for brand name Depakote after doing so for awhile. I was all ready to pay for it at over $350. a month but was given another alternative. She will be taking the generic but with an increased dosage. Hopefully this will make up for the difference and possibly cut down on her increased seizures. Her nurse also said some generics can lower the blood levels because maybe just one ingredient is missing compared to brand named drugs.....has something to do with copyright laws.

You also opened my eyes to the possibility of dying from a seizure, along with John Travolta's son and Hunter Tylo's son. We've lived with this for 25 years and I can truly say that I'm no more at ease than I was with her first seizure at 13 months of age.

Again, my heart goes out to you and others who have lost a loved one from this.

Kate - posted on 05/15/2009

Hi Sharon,

I don't know how many life threatening seizures I have had both in and around water. Once I was only walking past a full spa going to the ladies and came out of a seizure (fully clothed) in the spa with a friend supporting me from under the shoulder blades. He got incredibly wet also. I was so lucky he was around!!!!!

I have to shower and we actually had our bath removed 5 yrs ago and a stepless shower was put in as I kept knocking myself out on the bath. We had a shower over bath prior.

If I have ever longed for a bath since I have had my daughter positioned where she could pull out the plug. Which she has occassionally had to do. I know this is much more difficult for a shy teenager though!!!

I can only suggest showers for your daughter as her life is precious. Also be very careful that she is watched when swimming. As this can often be forgotten especially as she gets older.

I hope Sharon this doesn't scare you, only helps as it sounds that like me, your daughter has no warning of seizure onset. Good Luck Kate

Kate - posted on 05/15/2009

Dear Susan, I am so so sorry to hear about the loss of your daughter. I lost an infant baby girl, Lily to SIDs which was horrendous but to lose an adult daughter is unimaginable. I myself have chronic epilepsy at 41 with 4 living children and know very well that I could die of SUDEP which is sudden unexplained death in epilepsy. Which does happen to those of us who's epilepsy's are poorly controlled!

What I cannot get over is how little information in America you seem to be given which is so sad. The Epilepsy Foundation of Victoria www.epinet.org.au have been fantastic to my family.

I know this all seems a bit late but I am dreadfully sad for you and pray that she is in gods care, God Bless.

Sharon - posted on 05/12/2009

Susan, I am so sorry to hear of your loss. I wonder why some doctors don't give out more information. At our first visit to my daughter's neuro, he explained many things. The ones i remember most are that every seizure increases the chance of having another seizure and any seizure can cause permanent damage or be fatal. I know it's scary things to hear, but I think knowing this, I'm more vigilant. Not that I have any control. but . . . Thank you for sharing you story & bless you and your family.

Susan - posted on 05/12/2009

My daughter was 20 yrs. old and she died from a seizure. She always had seizures in the evenings when she was tired. Sometimes in the shower and sometimes before bed. No doctor ever told us that she could die from one......but it happened on Easter Sunday, 1996. She had gone to bed ad had a seizure before ever getting into her bed and passed away. We found her the next morning. I'm not sure, but her medication had been changed to generic due to the insurance. Her seizures became worse after that. I pray that your daughter will be safe and in Godd's hands. Bless you both.

Maureen - posted on 05/12/2009

I worked with people that were prone to have seizures while bathing and we would let them bath but pending when the last seizure was we would check that the person would talk to us with the door slightly ajar and call on them every few minutes given them time to wash and then we would encourage them to get out once done.but if it was with in a couple of days we would grab a chair and a book and sit in with them and make idol chatter with them to encourage them to have as normal as a life that we could provide due to the circumstances.

Deana - posted on 05/11/2009

My 25 year old daughter prefers showers, but I am either in the bathroom or leave very briefly and return. She is also autistic and moderately retarded, so I have to get the right water temp, reach in and squeeze bottles, wipe her eyes when they burn, and make sure she's getting clean. This seems better for my back and hopefully easier if I have to get her out quickly. If she does take a bath, I DO NOT leave until she's out and drying off. Hope this helps.

Lisa - posted on 04/08/2009

Hi I have a 23 yr old daughter with epi. What we do is pull the shower curtain and keep the door open and I basically hover the door while she is bathing. I also call her name and wait for a response. When she is having a real rough time of it...I insist she uses her shower chair. Hope this helps

Alexis - posted on 04/08/2009

hi sharon.

how nervour both you and your daughter must be... my son is only 3 1/2, i let him have both... but i dont know what i will do if he continues to have siezures into his teens.... i do remember reading somewhere online that they recomend children take showers, as the drowning factor is to high a risk...and if possible to leave the door open, so if a siezure does accur you can get into the bathroom..... but also that warm water on the head can trigger a siezre.... i wish i could remember the site... it was interesting.

im sorry i cant offer any other advice for you.....

take care

alexis..