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4 weeks post IVIG


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Last fall my dd could not dress herself, shower, or brush her teeth. She could not concentrate to play a game of cards when Grammy came to visit. She often wished aloud that she was dead. Antibiotics helped for a time. Prednisone was great when combined with the antibiotics and Advil. I couldn't even stop the advil during the prednisone taper because she would fall apart.

 

We are 4 weeks post ivig. She is off Augmentin but still on Zith. She is off prednisone for 4 weeks, off Advil for 4 weeks. Still on 40mg celexa, and something to fight yeast, as well as singulair for allergies.

 

She has kept herself VERY busy these last few weeks. There have only been a few days that she has slept home without a friend over all day long and all night. That makes it hard to see exactly where she is because she is always better around people. Her worst symptoms were reapeating things (or having urge to repeate so doing nothing) and asking reassurance questions. (worst times, all day long...every few seconds or minutes) She has not asked a reassurance question in days. There have been a few when the friends have not been around but like one or two during the few hours that freinds weren't here. (and then she let it go)

 

She went to sleep in her own room last night with NO friends over. (first time in more than a year, if I could guess) she was mad at me because I was frustrated with her because she's been acting like a teenager lately. but when I left, she did not call me back. She did not cry and scream that she couldn't do it and beg me to come back. She covered herself up (peeked in this morning and she was covered up) She let me turn the light off.

 

The reason she has been grouchy with me lately is becasue she thinks I treat her like she is stupid or a baby. I am doing all the same things I have done for the last year, reminding her to get her stuff, to not forget to something, to brush her teeth, to take her medication. I don't say it once, I tell her agaian and again because she never used to remember until I got after her. It's hard to stop a habit that you've had for a year. I plan to talk to her about it. Now I remind her about something and she gets rude about it like I think she isn't capable. She wasn't capable 4 weeks ago.

 

She is still repeating things when people are not around. walking in a room, brushing her teeth, walking in the house or through the door, doing most anything, really. But only for a few minutes then she gets through it. I still watch her with trepidation. I wonder if it will last or begin to go backwards or even just stall out where she is.

 

She wants to sign up for classes at the high school this year. She has been homeschooled all her life. I'm not against it..but I fear that if she back slides and cannot dress herself for school that it will turn into a battle. I hate having to have her anywhere at a specific time because it adds stress to my already stressful life. But I hope she is well enough to try it.

 

so far, so good. I'm still scared. But very thankful.

 

Angela

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I am so happy for you..

you will always watch her

and hold your breath forever

our dd is almost 6 months post ivig

and I am so nervous for her to start school

again she started in kindergarten last year

got sick again the first week and never went back

sooo we will try again this year.

 

Tracie

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Your first 3 sentences describe our dd12's condition pre-IVIg. I am so relieved to read your post as we are 5 weeks post IVIg and although we are making progress it seems a bit slower than yours but your post leaves me so hopeful that, no matter how slow the progress..progress will come. Our dd is also getting irritated with us right now over "reminders". I hadn't quite thought of that as a good sign...thank you for helping me see it as growth. Thank you and I am so happy for you and your dd.

Mary

from Michigan

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Congrads. Welcome to the real world of teenagers. All my son's cousins went through it and we have always told the parents "We wish we had your problems" I am so happy for you. When she complains, remember to keep the stern mommy face on the outside. I don't think I would be able to keep from smiling - emotional liable? you bet.

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Today was amazing. She babysat for 5 hours and i left her home with the kids for several hours. she did many chores to earn some money, including going down cellar alone to clean the cat box alone. she has been totally independent today except for brushing her teeth, which she wanted me to watch. Now she is on her pc, which she couldn't do two months ago becasue she could only repeat with the mouse. and her friend is coming over later. I am so elated today. I hope tonight goes well too. she appologized for yesterday and told me she had no trouble sleeping alone last night and plans to sleep alone from now on as long as things stay like they are.

 

*little happy dance....with trepidation

Angela

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So excited for you! Here is hoping for continued improvement and health!

 

We are considering IVIG right now. My ds12 just has flu-like symptoms and a tiny tic. There have not been any real improvements in 5 months and just had an exacerbation with myco p. Started Biaxin for 2 weeks and will consider IVIG next. Good to hear your story and wish you all the best!

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