Thanks for the update. Enjoy the summer. Next year will be a new teacher and a new experience, hopefully much better.

Kelly,

Thanks for the update. Here’s wishing Emily and you a great summer. Sounds like you have a great one planned. Hope everything goes better than you planned.

You’re so observant and perceptive. It is hard to appreciate how much CIDP does impact a person. Even though I get to feeling “normal” again, something reminds me just how far from “normal” I really am. I may seem to be the picture of health to some, but I continually fight “flu-like” symptoms, fatigue, numbness, twitches, headaches, … you know the drill.

I join with Jim praying that Emily will have a great teacher and a new best friend next year and that the bullies calm down or are in another class.

I have to say again, you’re a great mom! Keep us posted on how your summer goes.

In Christ,

Gary

Kelly,

Glad you gave us an update on Emily.
Now that school is out Emily can relax, enjoy her softball and have fun.

Thank you and have a great summer.

Shirley

So glad to hear Emily is doing well! I teach, and our entire school has a no bullying tolerance program in place. Bullying can do awful things to kids, and I’d suggest talking to the parents of the bullys. There’s is often a cry for help. I had a student last year who singled me out to bully, and even as the teacher I felt like crying every time she walked into my classroom with her purple hair, black makeup, pierced face, and black clothing. She was a sight! I have so many kids who look very unsual (high school can get wierd) but this girl was off the wall. She made one girl in my class cry, had a boy ask me to move him across the room and, as far as I could tell, had just one friend in the whole school. I called a parent/ teacher/student meeting and discovered she was on antidepressants and had been since 4th grade. Mom thought that just fine, because she was on them, too. Dad seemed normal, but he’d divorced Mom about 5 years ago and purple haired girl only stayed with him every other weekend. (which she objected to since he monitored her online use and where she went and enforced a curfew)

Bottom line – bullies often have a lot going on, but don’t let them bully Emily – she doesn’t need it.

Take care, have a restful summer, and recharge for fall. As a former Buckeye I know how beautiful your summers can be!

It is good to hear that Emily is doing well. I hope that you have a good and really fun summer.
With respect to tapering in a somewhat sensitive situation, going from 20 g ever 4 weeks to 20 g every 4 weeks does seem kind of like a bigger step. I think of cumulative dose in 12 weeks which for 20 every 3 weeks is 80g and 20 g every 4 weeks is 60 g. I also think of the expected nadir IF IgG has a 28 day half life–which it doesn’t have for everyone–but the principle is the same for whatever it is. This is the nadir for 20 g every 3 weeks is somewhere in the 12 g-ish-supplemental in the body range and for 20 g every 3 weeks is expected to be in the 10 g supplemental in the body range (half of the added dose). I just cannot do calculus at this time of night to figure it out exactly, but it really does not matter. The important point is the both the total dose and the nadir is more with the 20 g every 3 weeks. There are several ways to make it a little gentler–one is to alternate every three weeks with every four weeks for a few times keeping the dose the same. Probably “safer” is to mildly INCREASE the dose to 25 g every 4 weeks. This makes the total dose in 12 weeks 75 g (slightly reduced from 80 g), but will keep the nadir in the 12 to 12.5 g supplemental in the body. Why do this? It is a slight reduction, it is simpler to come every 4 weeks and gentler on life, but most important the nadir is kept close to what it has been. For most of my kids, after I get them to every 4 weeks, we stay on that schedule and gently wean from there. It is less of a drop to go from 75 g in 12 weeks to 60 g in 12 weeks. For really sensitive kids, I have also alternated doses every 4 weeks as a baby-step reduction–for example, 25 g every four week alternating with 20 g every four weeks in order to have a gentler fall in total dose and in nadir level. I hope that this makes sense. I work with kids with a DIFFERENT autoimmune neurologic condition (opsoclonus myoclonus ataxia), but it is also one in which one has to be slow and gentle with tapering so that there is not a flair (with resultant further neurologic damage) and then need to start back at a much higher dose to get back to the same place.
WithHope for a cure of these diseases

Little Emily is lucky to have a Mom like you, and a wonderful member like Withhope to share the ins and outs of IVIG.
I am expecting emily to recover fully and I wish you a great summer!

Kelly –

Oh, my goodness! I’ve been off for a few days, hence the slow reply. Our kids have enough to worry about without having to worry about nasty other kids. I look back on my own elementary days some 50 years ago (ugh!) and the memories that are the most clear are those of the teacher and kids who were bullys. We watch Oprah and Ellen and realize how important it is to intervene, but yes, sometimes that can make matters worse. Just make sure Emily knows she can always share with you about anything without reprocussions. I have a couple of girls who have that kind of relationship with their moms, and let me assure you, it is getting them through the really tough years in high school – and giving them strength to say “no” in this so very “yes” world. The better the girl, the more you’ll find moms like you supporting, loving, listening. Hang in there – as always, you are all in my prayers.

Hey,
You forgot to mention that we are going to meet!!!!

Kelly,

Thanks for sharing about Emily. When my foot drop was at it’s worst, the only exercise I could do was riding my bicycle. I fell a few times when I stopped. Catching my balance on CIDP legs was always tricky. (You are probably too young to have seen the tricycle guy on the TV show Laugh-In, but that’s a good mental picture of me riding a bicycle with CIDP). So it’s really cool that Emily is riding. It’s also cool she’s such a smarty, the Destination Imagination tasks are really challenging. I’ve used several similar tasks in engineering career fairs with High School students. (Yup, I’m an engineering nerd). :rolleyes: High School students have a tough time creating a solution to the tasks.

I write all this to say, “You’re doing an amazing job mom.” Congratulations and Thanks for being such a good caring parent in face of all the challenges you and Emily have faced and will face.

Gary

And the Congratulations and Thanks goes for you too Dawn!

That is wonderful Kelly, that you and Emily are triumphing over this and not letting it control your life!! I live in Chicago so I am intimately familiar with the American Doll girl store. I think that they have a tea that you can have with your doll. The doll can get her hair done, go to the hospital, there is a theater, etc. Have fun, but be prepared to spend a lot of money! 🙂

Kelly,

Looks like things are on track. Take plenty of pictures. These middle school years will fly by. Sometimes you get so caught up in the day to day battle that you forget about the camera. Before you know it, they grown and and on there own. Thanks goodness Carolyn and I have plenty of pictures of both of ours, especially the youngest.

Keep it up Mom!

Hi Kelly,

That’s awesome!! I’m happy for both you and Emily. 😀

Have a blast in Chicago and take care,

Tina

Doesn’t that come with the territory?
Kelley, that she is doing so well, in spite of the fact she’s not ‘fond’ of the teacher? Tell her the school year’s almost over and that next year, she mite get super lucky! I’ll cross my fingers for you! She is gonna make it ACES all over!
It has never been beyond me that kids are so much smarter and braver about all this! THEY are the wise ones who will teach US in the future!
My heart and hope goes out to you, as always.

[FONT=”Microsoft Sans Serif”]i’m glad she’s doing so well– hope it lasts and soon remits entirely…
best,
alice[/FONT]

Kelley, that is awesome news.

I just wanted to add that I have been to that American Girl store just about a year ago or so…it is everything a girl could dream of !
I’m so glad she gets to go !
You might kinda like it, too .

Stacey

[FONT=”Microsoft Sans Serif”]of that i am sure…:) [/FONT]

Youngsters often have an amazing capacity to heal and as Homeagain pointed out we can learn lot from the way kids handle things.
Emily is so bright and strong that nothing is going to stop her from a full recovery.
Also a Mom like you deserves a Gold Star.