Well...hmm what do begin with first!
I have not given up hope on the Depakote...Ohhh no...not yet..
My Biggest thing now..is Madison flat out refusing to eat...Im talking even her "potion"...(a love affair for ever!) and when I can get her to eat I fear that she will refuse the next feeding so I have been giving her shakes...jammed with more calories....
Lets see...she stopped gaining weight....Ohhhh a YEAR ago..when we began to pump her with various seizure drugs...she was Always in the 90th percentile with her weight...always growing rapidly.. Do you think the drugs have somewhat stunned her growth??
She is most happiest in the Early Am...and in the evenings...durring the day she is sleepy...irritable...refusing her meals... *sigh*
Should I go and tell the Neuro that despite what he wants to do that we need to wein her off her Zonegran and her Clonopin?? Her eating as I recall got worse when we went up on the Zonegran...about three weeks ago....and has been getting to a 2 bottle a day!! I know at times she has teeting issues...oh those molars are comming in...and LAST night...oh man after another day of hardly eating it was right after her meds..I tried a bottle and as usual she just wanted to sleep with mama on the chair so as I am sitting with her she is getting flushed in her cheeks and feeling warm...and chewing her thumb...Ok I pretty much knew that her teeth were hurting...
I let her sit with me maybe 20 minutes...and she calmed down some and I figured (bad choice) to try some oatmeal and a fruit.....
THAT turned into a scream fest,....clamping her mouth shut and screaming and gagging ....OK so that was not a great idea...
MAYBE it was teeth..she was still looking flushed again and I was getting a little nervous... I wiped her up and gave her a small dose of Tylenol...
I then put her down in her crib..she seemed calm and snuggled her blanket.... I go into my bedroom and proceed to put away the laundry I had done that afternoon....
I hear weird noises coming from her room and I rush in and she is vomiting all over herself!! It was clear! she has not a drop of food in her tummy...she is screaming.....
I literally lift her up and tilt her forward so she can get her mouth clear...
I get a face cloth and wipe her face and her arms and her feet...she feels warm...give her more tylenol?? Eh.....I sit with her awhile and she calms down finally and just goes to sleep....feeling cooler....
I don't feel like she vomited from her meds cause about 2 hours had gone by before she vomited .. what I worry most is her having a bad complication from her meds because she is not getting enough food! Which is alllso why I need to get her OFF some of these..
byt than wave the risks...what if seizures get worse??
It was quite an episode..she slept thru the night thankfully and woke happy and hungry...
Like I said, my biggest concern is her lack of eating! She has to grow!...And her development..*sigh* a whole other ballpark of worries..
I sucked up my pride and went to my Primary Care and told them how I have been feeling really Anxious an depressed...I completely broke down...telling her I felt like things were just closing in on me..
She says she wanted me back on my Paxil and gave me my script. picking it up today or maybe hubby can for me....
She says I have Anticipatory Anxiety...fearing things days before I endure them...like I am already Anxious about my long shift at work on Sat....And its WED.....but I know its coming...
I am such a basket case.....
It was time to put me first and get me feeling better...
Well I guess I am done.
Illll be in touch.
1 comment:
Ok so several things here. 1st is you need to speak with her Neurologist about moving her meds around. She definetly needs to be on her big doses at night time so she is not so tired during the day. Or maybe just spreading them out more evenly. Not sure what doses she gets at what time but with Cameran this seemed to really help. Cami seemed tired all the time too I think its normal specially with so many meds and their bodys are so small they just cant handle it. All the more reason to get her off some of the meds. Send me a message would ya on what all she is on and how much. Maybe I can put some notes with ya for your good ol Doc that insists on her staying on so many!
2nd is her eating. Now again cami went through this as well but not this severe. Seems like she may have something else going on, I would be on the phone with your Ped and pushing for an immediate opening, this shouldnt be going on any longer!!!!! She definetly needs to have an upper GI done and maybe a swallow study! May be some bad reflux going causing burning sensations when she swallows. Poor gal I just cant imagine, no wonder she is so tired she isnt getting any energy from foods. A good way to think of how she feels is put yourself in the situation, like when you havent eaten all day you feel sick, weak and tired. Then how about meds, shoot tylenol makes me sleepy, think about being on 2-5 meds at once thats exhausting! These guys and what they have to go through, it brakes my heart. I'm here for you send any thing my way bad moods tears or fear thats what I'm here for!
Sending my best your way!
Karen
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