Update on Emily…it’s been awhile

    • Anonymous
      June 11, 2010 at 2:29 pm

      I haven’t been around lately. Life is crazy for me right now. But I thought I’d update on Emily real quick.

      She’s doing well! The neuro wants to spread her treatments out to every 4 weeks from every 3 weeks…still at 20 grams of IVIG (which is now less than 1g per kg). I’m not really feeling that though…so we’re still working on it. I want Emily to get to the 2 year relapse free mark (we’ve never reached it) and that won’t be until November. We’ll see what happens with that.

      Emily is SO ready for school to be over with. This year was a hard one for her. She didn’t really like her teacher & she had to deal with 2 bullies. Now her best friend is moving out of state & she’s just heartbroken over it.

      Yesterday Emily’s school had Field Day. It’s not until I see her competing with other children that I can see just how much the CIDP has affected her. She really is much slower running than the rest of the kids & jumping with a ball between her knees was a little difficult for her. But, in true Emily fashion, she did her best & never gave up.

      We have some really fun activities planned for the summer. Emily is on a new softball team this year & I’m hoping she can make some new friends. We’re going to the 4H fair &, of course, the fireworks (they are 1.5 blocks from my house on the lake). I’d like to take a day trip up to Tawas, MI (right on Lake Huron) and I’d like to get some camping in too. I would also like to get down to the Toledo zoo again. We went 2 summers ago & had such a fantastic time.

      I see lots of new names are here & while it makes me sad to have them join, I’m glad you all are around to offer them some guidance.

      Hope you all are enjoying the (mostly) nice weather!

    • Anonymous
      June 11, 2010 at 10:37 pm

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

    • June 12, 2010 at 10:44 am


      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,


    • Anonymous
      June 12, 2010 at 4:28 pm


      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.


    • Anonymous
      June 13, 2010 at 7:03 pm

      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!

    • Anonymous
      June 14, 2010 at 2:47 am

      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

    • June 14, 2010 at 4:54 pm

      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!

    • Anonymous
      June 14, 2010 at 8:19 pm

      Thanks all for the responses! I really appreciate you taking the time to write back. Even though I’m not here much anymore I still consider you all such a great support system.

      Cathie – I have tried to get support from the school but the principal just doesn’t listen to me. My husband works there &, I think, she thinks I won’t go over her head because she can make my husband miserable at work. Luckily, we are getting a new principal next year & fingers crossed she will take things seriously.

      And the teacher this year…well forget about that. She has not been helpful at all about anything.

      I called the girl bully’s mother last year…it didn’t go to well. There was lots of “oh my kid would never do that” kind of stuff. Now whenever I see the mother I get dirty looks. As a matter of fact, Emily was just bullied about me calling the mother last year. The girl said “Tell your mom my mom didn’t appreciate being called last year & it better not happen again”.

      The other bully is a boy who has a lot of problems. I have worked with him (tutoring math…which is really funny because I am HORRIBLE at math) & I really think he’s a sociopath. Things got so bad this year that the teacher let him sit at the back of the classroom playing games on the computer all day because he just was not teachable.

      Hats off to you for dealing with the teenagers all day. I know that is not something I could ever do!

      WithHope – Thanks! I had the same idea about increasing the dosage to 25 grams and going 4 weeks but the dr does not agree. He wants to keep her at the same dose. We tried to get her to every 4 weeks 19 months ago & she relapsed the day the nurse came to do the infusion – so I’m really reluctant to try again.

      We have also alternated treatments the way you suggest when we were stretching them out. I’m actually glad to know that a dr is doing that because it’s something that I made up on my own. I’ve never seen anything in any literature suggesting that, but it’s what has worked for Emily.

      I usually get my way with the dr but this time he’s being more stubborn. I think I’m just going to have to “out stubborn him”…which I will.

      Thanks again!

    • Anonymous
      June 21, 2010 at 11:59 am

      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.

Update on Emily (it’s been awhile)

    • Anonymous
      March 14, 2010 at 7:56 pm

      Hey guys. Thought I would do an update on Emily. It’s been awhile since I posted.

      Before I even get started I’m going to KNOCK ON WOOD!

      Emily seems to be doing FANTASTIC with regards to CIDP. She rode her bike the other day for the 1st time since last fall & she did even better than she did then! We live in a very hilly neighborhood & it didn’t slow her down one bit. She wasn’t even afraid of turning corners or going down hills fast. She always was before because she worried she would get hurt & have to go back to the dreaded hospital. (I guess it’s a side effect of being a chronically ill kid)

      Her dr wants to try to get her IVIG to every 4 weeks again. Last time we tried that (November 2008) she relapsed on the day the nurse came to give her the infusion. It’s something I am considering but it will not be happening until summer. That way I can keep a close eye on her.

      She’s in 3rd grade now & gets straight A’s on her report card! She’s such a smarty! Emily was even in a competition called Destination Imagination. It’s kids from all over our area who compete against each other in challenges. Emily was the youngest kid on her team & made the structure for the main challenge. It had to be a weight bearing structure, made out of newspaper & glue, be under 75 grams & between 7.5 & 9 inches tall. During testing it held over 200lbs & didn’t even flinch. The kids took a chance during competition & used heavier weights but the weight distribution was off so the got a DQ when the board touched the side. But that’s OK because we KNOW what she built was terrific! Her team took 6th place in their division out of 14 teams & made history being the only first year team to ever get an honorable mention at the awards ceremony. They also were the only team to score 100% on their instant challenge.

      She loves rocks & music class day is her favorite day of the week – next to library of course.

      She is having trouble in school though. I had a kid who went from hating Fridays because it meant she wouldn’t have school for 2 days, to having a kid who is begging me to home school her. She doesn’t click with her teacher this year & there is a kid in her class who seriously needs special classes, but for some reason they just aren’t giving them to him. He acts out often & it’s taking it’s toll on Emily. We are counting down the weeks until school is out! Next year, I will be requesting that he & Emily not be in the same class.

      We are going to Chicago in April. Part of Emily’s Christmas present from my mom was a trip to the American Girl Doll store. Emily cannot wait! And March 26th I’m taking her to see Taylor Swift in concert.

      This girl has a better life than I do, LOL.

      So that’s it. I hope everyone else is doing well.


    • March 14, 2010 at 10:33 pm

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

    • March 15, 2010 at 7:08 am


      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.


      And the Congratulations and Thanks goes for you too Dawn!

    • Anonymous
      March 15, 2010 at 10:06 am

      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! 🙂

    • Anonymous
      March 15, 2010 at 4:17 pm

      Jessica H – We are doing the dinner. And yes, I am preparing to spend quite a bit of money. My mom actually thinks Emily will go there, see the prices & not want anything. I think she’s crazy because Emily will want to leave with everything!

      Gary – Thank you. You are too kind.

      Emily’s teams instant challenge was to get balls from a bucket on a table into a bucket on the floor without touching the balls, using random items on the table. They ended building a ramp. I guess the judges were thrilled with their team work & ingenuity.


    • Anonymous
      March 15, 2010 at 6:43 pm


      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!

    • Anonymous
      March 15, 2010 at 6:57 pm

      Jim C – Emily is only in 3rd grade. I can’t even think about the middle school years yet. She has the genetic makeup to be one out of control teenager. I could have a panic attack just thinking about it, LOL.


    • Anonymous
      March 15, 2010 at 7:02 pm

      Hi Kelly,

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

      Have a blast in Chicago and take care,


    • Anonymous
      March 15, 2010 at 7:09 pm

      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.

    • Anonymous
      March 16, 2010 at 1:58 pm

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

    • Anonymous
      March 16, 2010 at 4:07 pm

      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 .


    • Anonymous
      March 16, 2010 at 4:11 pm

      Tina – Thanks. I’m sure we will have a great time.

      HomeAgain – Oh yes, panic attacks & being a parent do go one in the same. I’ve gotten a lot better about not freaking out since Emily was dx’d with CIDP though. I usually just let things roll of my back now. I can’t sweat the small stuff anymore. I do imagine by the time she’s a teenager I will have a full head of gray hair & be popping Xanax left & right, LOL.

      Emily has been home for the last 2 days sick (cough & stuff nose) and she does not miss school at all. It’s SO not like her! She used to cry when she had to miss school.

      Alice – Thanks. I know she will reach remission one day…she’s too cool not to. 🙂

    • Anonymous
      March 16, 2010 at 4:14 pm

      Stacey – I’m sure it will be a good experience. I might like it but I don’t think my bank account will, LOL.

      We are going with my mom, sister, & sister in law – so it’s going to be a an all girls day! My only worry is Emily handling the car ride. She normally has a 2 hour time limit before she’s over it. My mom says it takes 4 1/2 hours to get to Chicago from here but I’m hearing from others that it’s actually a 6 hour drive. So we shall see….


    • Anonymous
      March 16, 2010 at 4:38 pm

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

    • March 16, 2010 at 8:49 pm

      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.

    • Anonymous
      March 17, 2010 at 9:58 am

      Thanks Katy. You are too kind.

      Emily is truly a little fighter. I often wonder if she really knows just how strong she is.