Thank you so much for your reply. Taryn is doing ok. She is being homeschooled because of her memory loss, anxiety and overall stress of over 3000 kids in her high school and not knowing anyone when she started. She still has memory loss like your girl, and it frightens me so much. Thank you so so much for the info on the patches that will numb her!! I know that will help. But the thing also is, she will literally seize if she KNOWS about the needles. I took my friend to have a minor procedure done and Taryn knew what was going on with the IV, even though she was out front in the lobby, and the recept had to come and get me because she began showing early signs of seizures. Her anxiety is so very HIGH. My poor sweetie. I am having terrible marital problems and he is as cruel as teens....so that doesnt help. I hope you are staying strong as well!! I am doing ok...just looking at her smile helps me through the day, and of course this wonderful site helps me. Thank you again for writing. Please let me know how you both are doing.
The thing is here where we live in Las Vegas, there is only 1 pediatric neuro....and honestly, I dont care for him, neither does Taryn to be honest. So our hands are somewhat tied there... I agree, her meds are NOT working. She is so scared to get new meds. She reads up on her disease and sees the side effects of meds and it scares her. She seriously cannot handle any bloodwork, she FREAKS out. I mean, we had to hold her down last time, there were 4 of us, and she had a massive seizure. They had checked her med levels not long ago and lowered her dosage and that is really when her seizures took on a life of their own.
Thank you so much for the wonderful advice. I do not let her drink soda of any kind...with us living in the desert, it depletes the system so quickly. So she drinks tons of water, green tea with honey and that is it really. I had started giving her Vit C 1000mg and Iron 65 mg here not too long ago. It really seemed to help her a bit. I will go and get some vit D. She has another appt next month....I wish there was someone else we can take her to.
Thanks again for your kind words about caretaker burnout....things are not going well with my husband these days. He says some pretty cruel things to me about being a bad mom and having a lazy child....he doesnt seem to realize words hurt so so badly and she hears him when he says this.
I am keeping the daily journal for her and myself as a matter of fact. Thanks for the advice there too!! It has helped trememndously.
Thank you again, its so nice to know there is someone out there to talk to.
Will try and update you all again soon. I do pray you and your families are happy and healthy and your kids are doing wonderful.
I do hope this finds you and your beautiful families well and happy in the New Year.
Well, my muffin has been taken out of school and is homeschooling again. Her seizures are UP again and have been pretty severe. She has more Time Loss. She has admitted to me that she FORGETS us often...she also loses herself when she is talking...meaning, she forgets what she is talking about in the middle of a sentence. I am so worried for my child I cannot express this enough. The school she was in, though very supportive, could not work with us and had to un-enroll her. Which, was a good thing I believe. The school she was attending had almost 3000 kids and it was frightening for her. She would often get lost and forget things, and it scared her so badly, and didnt want to worry me! Bless her heart. I feel so helpless. I do. I dont have many friends here in the city we live in, and I stay home to take care of her and her dad...he is disabled and partially paralyzed. I have no family besides them...so I feel lost alot. I want to thank you all again for being so wonderful and supportive. I do want to apologize for not updating sooner, things have been rather hectic around here.
I do hope everyone is doing well though. Thank you again so very much.
Take care and I hope to talk soon. xoxo LisaView Thread
Hello All! First off, let me say THANK YOU from the bottom of my heart for the kind words and replies at all. Muffin, yes we do call her that!! hehe is doing much much better. She does have pretty bad Short Term Memory loss, but her long term memory has been pretty much regained. It lasted almost a week, and let me tell you, it really was hell. All around, her classmates and most of her teachers have been pretty incredible and supportive. Her neuro upped her meds and wants to see how that pans out before he tries something different. She is responding well to the new dosage. With epilepsy being so understated as a disease and the medical community really not knowing what causes it, how to treat it without the person being a guinea pig, it gets extremely frustrating. People still look at her like she has lice or something. But for the most part, her friends and our family has been pretty incredible like I mentioned.
bunnysmom...how is your sweet girl doing? My girl did not know I was MOM or dad was dad....but she felt SAFE with us...her best friend called after it first happened, I told her, she wont know you hunnie, she said, mama please let me talk to her, well, it went as I thought, she did not know her and also told her best friend, I was that nice lady taking care of her. It felt like someone had kicked me in the stomach. She is my only child, I do have stepkids though who are wonderful, but she is it for me. I had uterine cancer and had a full hyster and no more for me. She truly is my life....and the thought of her NOT knowing me was devastating. Thankfully things are getting back to normal.
I cannot thank you all enough for posting. I appreciate each and every one of you for responding, taking the time from your busy days to care for a stranger.
My daughter is 14 and has had epilepsy since she was 3 years old. It has been pretty well controlled by medication. Yesterday we took her to the Urgent Care for a tonsil infection, and the nurse put the blood pressure cuff on her...well it hurt her and it kept redoing itself. The nurse snapped at her and told her to sit still...then BOOM. She fell out with the worst seizure she has ever had. It lasted a few minutes, she messed on herself. She has complete memory loss now. She does not recognize her brother, friends, her cats...she really does not remember me or her daddy. She told me this morning her head was hurting so so bad. She went and laid down after I gave her her medication. Is memory loss common? Will it come back? What do we do about school? Any help on this is greatly appreciated. Thank you so much.View Thread