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Posted 12/15/2005 8:11 PM (GMT 0)
Hi everybody i am usually on the UC board but thought i could pop over for a bit of advice if you can help me.The problem is with my youngest child Beth now 2yrs 3 months old.I will give you a brief run down on her condition if it helps. Beth was a perfectly normal child until  May 04, she started taking seizures lasting 3/5 minutes. 2 weeks after initial seizure she caught a virus which caused Miocardiatis she had 8/9 Prolonged cardiac arrests which has left her Severely brain damaged,She is tube fed and hypotonic. She is improving very slowly.But recently she has started having lots of absences(periods were she is just staring and unaware of anything around her). I mentioned this to my doctor who believes that it is the epililpsy but that they won't do any harm to her. He is getting her heart checked again in next few days, but believes there is no need for meds at this time.Is anyone going through or gone through similar? Are these absences normal in children with epililpsy or should i push for more help. i really don't want her to start any more drugs unless they are really necessary. She was on a drug called Phenabarbatone(not sure of spelling) and it knocked her out most of the day and left her really unresponsive.

Any advice would be greatly appreciated!!

Thanks again,

           Marty

Posted 12/16/2005 12:48 AM (GMT 0)
I have no advice just Hugs and prayers. As I understand it, prolonged seizures can cause damage. IS the doctor a neuro , PCP or cardio.? Just checking

Beth B. in TN

Posted 12/16/2005 4:05 AM (GMT 0)

Hi Marty-

It's nice to see someone from another board visiting the epilepsy forum.  So sorry about your daughter.  You said she was on Phenobarbitol, which is one of the older antiseizure drugs.  It has a reputation for being sedating.  Has she gotten a blood level done of her phenobarbitol lately? 

If she's still having episodes of staring and unresponsiveness, seems like it will have to be determined if those are actual seizures or not.  If so, why isn't the phenobarbitol working.  There are so many other drugs that have less side effects/drowsiness. 

I'm not sure what the doctor meant about the episodes not doing any harm to her unless he thought they weren't seizures. You'll have to ask him to clarify what he means by that.    I had the same thought as Beth B. - what kind of doctor takes care of her? 

Extra (((((HUGS))))), Glenda :-)

Posted 12/17/2005 1:25 AM (GMT 0)

Beth sees a neurologist and a cardialogist.She has taken any eplipsy medications since last year. She was only on phenabarbatone for a few weeks whenshe was seriously ill. I think doctor meant that as long as she is not shaking or hurting herself that they won't cause her that much damage.

Marty

Posted 12/19/2005 4:18 AM (GMT 0)

Phenobarbital was a nightmare for me.  That is the same as Phenabarbatone, isn't it??  I lasted maybe 3 days and was awake about 12 hours total in those three days.

Good luck to you and Beth.

Uhura

Posted 1/10/2006 3:53 AM (GMT 0)
Post moved so members would be sure to see it.

Hugs

https://www.healingwell.com/community/default.aspx?f=23&m=394974

Post Edited By Moderator (~Jennifer~) : 1/9/2006 9:15:25 PM (GMT-7)

Posted 1/12/2006 2:12 PM (GMT 0)
Thanks Lorraine for your response, it means a lot. As i have mailed you to let you know what is happening i thought i would update others on the forum here as well.Beth has since been diagnosed with Severe Cerebral Palsy, her eyesight is becoming very poor indeed( docs believe she is not using eyes now at all and is dependant on her hearing) her seizures/abcences are becoming more frequent.

Beth is going to see a head neurologist on 24th jan and i am preparing a list of questions and possible treatments  that he will be able to advise us on. The cardiology want to review her start of Feb. We have just recieved word that an EEG will take place on 22nd Feb with an MRI scan to follow that.I thank you again for your response i will inform the forum when we recieve any more information. I firmly believe that our experiences should be shared, it can only help others.

                           Marty

Thank you Again Lorrainne

Posted 1/12/2006 5:30 PM (GMT 0)
Mary you are welcome. I have sent you some links via email hope they are of help in preperation for your upcoming doctors visits and test.

All my best,

Lorraine
Posted 1/12/2006 5:32 PM (GMT 0)
Sorry for misspelling you name Marty, should have read my post before I sent it!
Posted 7/24/2009 7:27 PM (GMT 0)
I don't know the updated status of your daughter or whether or not she is still having problems - I realize this was posted quite some time ago, but I thought maybe sharing a bit of my story would help. I was born with CP and was hospitalized for over a year because of the extent of my issues. I too had seizures up until I was 8 or 9. I'm 18 now. I had detached retinas in both eyes. I was also 3 or 4 months premature, so most of my vital organs weren't fully developed. I went through handfulls of doctors - many of the doctors I saw didn't diagnose me with CP. Even after they established the CP, I wasn't properly treated for my diagnosis until I went to Boston Children's Hospital, which was and still is the leading childrens hospital in my area. The doctors assured my parents that I would be confined to a wheelchair, blnd and unable to function at a cognitive level, but they were 100% wrong. I had extensive physical therapy for most of my childhood and didn't learn how to walk until I was 5ish. I use to have a walker and arm braces and as a child I'd force myself to get up without the assistance of my braces. I was highly determined and had parents that were determined to see me succeed. Now I can walk without little to no difficulty. I have a slight gait, but it isn't too bad. I'm also not blind. I wear glasses, but they're "normal" glasses. I have balance issues and coordination problems, but they're slight. I'm able to function just like any other person. Right now I'm going through some medical issues with my back - I was born with scoliosis. I also just got done having surgery on my esophagus to fix a surgery that I got done when I was born (my sphincter wasn't fully developed), but I am doing pretty well. I'm not sure of the level of your daughters disability, but again, I thought maybe sharing a bit of my story might help. If there's any chance that your daughter could benefit from therapy, perhaps for her muscles - muscle strength and control, or even to help her cognitive ability, don't hold back. I wish you the best for you and your daughter.
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