Update on Emily

    • Anonymous
      October 16, 2011 at 2:58 pm

      Well folks…it’s been nearly 3 years since Emily had a relapse. When she relapsed, in 2009, we were trying to stretch her treatments from every 3 weeks to every 4. Now she’s getting IVIG every 5 weeks. It still amazes me that she’s made it this far…but at the same time I can’t be surprised. I have an amazing daughter!

      It took an insane amount of IVIG to get Emily to even be stable. And, I am SO VERY HAPPY TO SAY, it’s not really taking much IVIG to sustain her at this point. She’s currently around 93 lbs & gets 20 grams of IVIG.

      Recently she decided she wants to go to University of Michigan (GO BLUE!) to study Geological Sciences…she wants to be a geologist when she grows up. Girlfriend LOVES rocks! And math! And science! (How is this child biologically mine? LOL)

      I’m amazed, at 10 years old, she knows what she wants to be when she grows up.

      As I’ve posted about before Emily is a member of the Junior Skating Club at our local roller skating rink. Her favorite skating activity is doing “figures”. They are the black circles located around the skating floor. Basically the skater has to go around the circle (on 1 foot) using balance, strength & coordination to keep the line between the wheels of their skates perfectly. Emily is excelling on figures! She also hopes to compete at the national level for figures and free style (think fun skating program) one day.

      She is also trying out for a junior precision team (think synchronized skating) on Friday. Her coach seems to think she make the team with no problems.

      It does take her a little longer than the other kids to master jumps. We think she is afraid of falling & can’t get over the mental block of that.

      Emily skates 2-3 days a week along with going to school, Girl Scouts & church, while maintaining all A’s on her report cards. She is also keeping her fingers crossed to be selected, by her teacher, to join the National Elementary Honors Society.

      Her energy is great & her spirits are high. She recently told me she does not believe she has CIDP any more. She doesn’t feel it in her body at all.

      She does still complain of pain in her legs & hips when there is a season change. Weather patterns seem to irritate her nerve endings. When she has the pain she still has the strength to continue on with her activities. We are very thankful for that.

      Emily has been without a port since April 29, 2011 & has done VERY well with getting IV’s. She still doesn’t like her port site to be touched. She said it still feels weird…I wonder if it always will. She did tell me it’s nice to be able to move her arm & to not feel any tugging from the port.

      To all the moms with CIDP kids – It can get better! It will get better! You just gotta have faith! My favorite quote (also Jessica H’s favorite) is “With hope anything is possible” by Christopher Reeves. I figure if hope worked for Superman it has to work for us…right?

      Happy Fall!


    • Anonymous
      October 16, 2011 at 8:38 pm

      Kelly it is so inspiring to read about how far Emily has come. Unbelieveable that she is ice skating and doing so well. I am thrilled to read this update. Big hugs to you and Emily.

    • Anonymous
      October 16, 2011 at 8:42 pm

      Yes, that is wonderful news and a great description of what she is actually doing.

      Skate in a circle- I’ll have to try that now.

      Wonderful. 🙂

    • Anonymous
      October 16, 2011 at 8:50 pm

      It is wonderful to hear your daughter is doing so well. I am glad you spend your time on this forum helping other parents who have children with CIDP. They need the support and to know another child is doing well (even with less infusions). Emily is such an inspiration and she certainly has a proud mom.
      all my best,

    • Anonymous
      October 16, 2011 at 10:16 pm

      Yuehan I don’t know about you skating in a circle. Hubby and I just joined something called Silver Blades which is ice skating for seniors. Neither of us had been on ice skates in 40 years before going two weeks ago. I believe we are quite the pair–he has CIDP with atrophied rt. hand and foot drop in one foot. I have MS and spasm in the hips. But we loved it! No circles yet–still just managing to skate in a straight with very unsteady legs. But go for it! If Emily can do it, we can too.

    • Anonymous
      October 17, 2011 at 1:26 am

      Thanks all!

      I am SO VERY PROUD of my girl! I hate to brag…well not really, LOL.

      Laurel – Emily is roller skating – not ice skating. She wants to ice skate & has a pair of skates in her closet. I’m sure it will only be a matter of time.


    • Anonymous
      October 17, 2011 at 9:43 am


      Happy to see the wonderful update on Emily.
      She has made great progress with getting CIDP under control.
      For her to say she does not feel it in her body is the greatest news
      on Emily.

      Skating is a lot of work to achieve all the jumps and moves.
      Emily, you are progressing in your skating.
      It is something I did growing up, (nothing like you are doing).
      Our son skated as he grew up. He was good at it, he did the couples dancing and Skate racing.

      Congratulations on your skating and straight A’s in school.

      Thank you Kelly.
      Good luct to you Emily.


    • Anonymous
      October 17, 2011 at 11:19 am

      Kelly I guess I missed that when I read your post. Any kind of skating takes lots of athletic ability. None of us could do the circle on roller skates either .

    • Anonymous
      October 17, 2011 at 1:45 pm

      Laurel – I don’t have any health issues and I don’t think I could do figures either, LOL. It certainly looks MUCH easier than it actually is.

      Mattyrae – I think skating has been wonderful for Emily in so many ways. It really has boosted her self confidence, which I think is SO very important for every girl. She’s coming up on an age where she’s going to get a lot of outside pressure from peers & her body is changing. So I’m just so glad she’s found a love for it now.

      Her coach & I are trying to get her to do couples skating with a boy in her club. Emily is feeling too shy about it…I think it’s this age. But it’s something I would LOVE for her to do. Emily’s coach has a partner & they just won GOLD at Nationals a few months ago.


    • Anonymous
      October 17, 2011 at 3:45 pm


      Your posts about Emily always make me smile and make me so happy. You have every reason to be proud of her and of yourself!! You have done an awesome job!! Thanks for the updates.


    • Anonymous
      October 17, 2011 at 10:03 pm


      I am so happy for you and Emily and proud for you both!!!!!

    • Anonymous
      October 18, 2011 at 3:22 am

      WoW ! What inspiration you gals are. It’s been a long journey. You are an amazing parent, Kelly! And Emily gets a normal life. You both have persevered and changed the cards that were dealt. Congratulations and I’ll be watching for Emily on TV championships 🙂 hugs, Judi Z

    • Anonymous
      October 18, 2011 at 11:02 am


      Great news. Thank you for sharing.

    • Anonymous
      October 18, 2011 at 7:09 pm


      Your post made my day! Thank you for sharing Emily’s thoughts and accomplishments. 🙂

      Take care,


Update on Emily

    • Anonymous
      July 24, 2009 at 9:21 am

      Emily is doing really well. We are moving her treatments to every 3 weeks again. She seems to be tolerating it, which is a HUGE relief. I’m still not thrilled with our home care company or the new nurse. I keep going back & forth on whether or not we should switch.

      Emily is going into 3rd grade this year. At the end of 2nd grade she was reading at a late 5th grade level & spelling 6th grade words. She’ll be 8 on Sept 9th. It seems like she was born just yesterday though.

      She finished a 3 day Girl Scout camp this week. They were supposed to stay overnight on Wednesday but she didn’t make it & called home at 11pm. That’s ok because my husband & I were missing her like crazy. She had a stomach ache & was cold & wet. She was really disappointed in herself for not making it but wants to go back & try again next year along with going away to Girl Scout horse camp for a week. I just don’t know if I can go that long without her!

      I’m babysitting a friend of hers for the summer so she always has someone to play with. I’m glad because normally she gets bored in the summer. There aren’t any kids near us for her to play with.

      On a much sadder note, my grandma passed away yesterday. She was more than just a grandma to me, she was a best friend & more like a mother to me. My grandma & I were so very much alike. Her passing has left a huge hole in my heart that I fear will never fully close.

      She was in & out of the hospital since late May after she fell & broke both bones in her ankle. On Tuesday, she had a heart attack (with the nurses in the room with her), the hospital worked on her for 38 minutes then she was put on life support, about an hour later she coded again for 8 minutes & then they resumed with the life support all because she didn’t have a DNR order & my aunt (who had Power of Attorney) just couldn’t let her go. Wednesday evening they took her off of the life support & she died yesterday afternoon after her kidneys failed.

      After going through what we went through this week with my grandma I would urge others to get their paperwork in order, their wishes written down & to put someone in charge who can handle it. My grandma was only hours away from having her DNR meeting where she was going to sign the paperwork to not resuscitate her. Because she didn’t make that meeting she suffered for 2 1/2 days.

      I know she’s in a better place so that is very comforting to me.

      I hope everyone is having a great summer full of fun, laughter & lots of love!

    • July 24, 2009 at 9:54 am

      Good morning woman!! I will call you later.

    • Anonymous
      July 24, 2009 at 9:58 am

      Ok! I should be here. If you can’t reach me at home then call my cell.


    • Anonymous
      July 24, 2009 at 4:20 pm

      Kelly, I’m sooo sorry to hear about your Grandmother. That is the hardest thing in the world to do-I know I was there when my Grandmother went through it. Her sister didn’t want to unplug her, she was suffering and in acoma when it was finally done. I was the last grandchild to be with her-she actually responded to me when she was in a vegetative state. She sqooze my hand a few times in response to my questions and statements. She wanted to go and I was there at the end.
      Emily is a real trooper! I admire her strength. She will make it through the next outing with flying colors! Isn’t there anyway you can be a volunteer at horse camp? It would help you and give Emily that extra boost she might need.
      You and your Family are in my thoughts and Prayers! May your pain be short lived, and the good memories be many! Hugs!!!

    • Anonymous
      July 26, 2009 at 6:13 am

      Kelly, I am so sorry for the passing of your Grandmother. It does leave a hole but knowing that she is in a better place will help.

      I’m thrilled that things are going better for Emily. My, she is growing up so fast! I suspect it will be time, next summer, for her to enjoy a week of camp but moms are never ready for it to happen!

      Hugs to you and your family and may the memories be sweet.

    • Anonymous
      July 26, 2009 at 10:21 am

      Thanks all.

      Cheryl – I had my aunt hold the phone up to my Grandma’s ear & my aunt says my Grandma seemed to relax while she was listening to me. I don’t know if I believe it but it would be nice if it were true.

      Her funeral is on Tuesday & then she’ll be buried in Kentucky in the small family cemetery with her mom. The cemetery has been there since the 1800’s, I’m told.

      I’ve been holding up pretty well, I think.

      I’m not sure if I could volunteer at the horse camp or not. I was never a Girl Scout & they have pretty strict rules about that stuff. I’ll check into it though.

      Judi – Thanks for the kind words.

      Emily IS growing up so fast. She’s so tall. I didn’t believe the dr’s office when they told us, at her first dr’s appointment, that she would be about 5’9″ because I’m only 5’5″ (on a good day). Now I’m thinking they were actually right.


Update on Emily

    • Anonymous
      November 20, 2008 at 10:45 am

      Emily saw her neurologist on Tuesday. He was impressed with her improvement since her “setback”. She’s back to normal!

      We are going to do 1 more once a week IVIG then move her to every 2 weeks for 3 treatments. The plan is then to move her to every 3 weeks again.

      I told the dr that she will be on every 3 week treatments for A LONG time! He was fine with that. I think he knows that I won’t stand being pushed into moving her treatments further apart any time soon.

      In other Emily news, I had a parent/teacher conference with her teacher. Emily is 7 years old & in 2nd grade. She’s testing at the 4th grade level for both reading & spelling. She’s doing excellent in Math, Social Studies & Science! Her teacher says she’s a very fast learner & kind to others.

      Last week I took Emily to opening night of the circus. A VERY dear friend sent an early Christmas present to Emily in the form of cash for the circus. Emily had a BLAST! She is still talking about it so I know she had a great time.

      So that’s it. Good news all around!


      I forgot to add more pics from Halloween.





    • Anonymous
      November 20, 2008 at 12:19 pm

      Kelly, she looks so pretty in her costume! I love that the costume is purple. It is my favorite color:)!!

      I am so glad she is doing better:) How exciting that she is doing so well in school!!

    • November 20, 2008 at 1:05 pm

      That dear friend must love Emily and her mom and she must be grateful for all you have done for her.
      Great news about school!!! Keep up the good work Emily! Talk to you later woman!! Gotta go put another pool cover on top of the other one, wild west Kevin was shooting at the water on top of the pool with his airsoft gun and did not think about the fact that the beebees would go through! Should be fun, it is snowing out!!
      Dawn Kevies mom

    • Anonymous
      November 20, 2008 at 3:57 pm

      Great News! Pretty Pictures! She is such a sweetie. After all that she has been through and still going through, I wonder how she does it. She is truly an amazing little girl. Thanks for sharing her with us.

    • Anonymous
      November 20, 2008 at 8:44 pm

      Kelly, Glad that the news all around is good. Bet Emily hauled in the treats looking so pretty. Take care.

    • Anonymous
      November 21, 2008 at 7:40 am

      What a proud mother you must be. Great news that she is doing good. She is amazing to be so smart and go through her ups and downs and her treatments.
      Very pretty pictures.

    • Anonymous
      November 21, 2008 at 10:34 am

      What a good update! Better health, good grades and adorable pictures….Good work Mom! Emily is growing up before our eyes. Thanks for sharing.

    • Anonymous
      November 21, 2008 at 5:22 pm

      Ohh Kelly! Your daughter is so beautiful! What a pretty little girl! I am so glad they caught this in time and started the treatments. But just hate that your daughter has to go through this. She certainly doesn’t diserve it! I hope and pray that she does see remission some day and never see’s CIDP ever again! Hugs
      Linda H

    • Anonymous
      November 22, 2008 at 10:08 am

      Yes, Kelly, she is a very pretty little lady, and appears perfectly normal!!!!!!!
      What a great inspiration Emily can be (and is), to all who have had this terrible affliction. Especially a little child………….how horrible it must be ;;…..especially to children………but….. look at her now :):)
      Just made my day a lot more cheerful. Thank you Emily and mom .


    • Anonymous
      November 22, 2008 at 4:16 pm

      Kelly, What Wonderful News!!! You must be One Proud Momma!!!:D What Awesome Work in School, Emily!!!:cool: Keep Up The Fight Hun!!!:) Great Job Mom!!!:D

Update on Emily

    • Anonymous
      November 1, 2008 at 6:23 pm

      Emily finished up her loading dose on Friday just in time to get dressed & go Trick or Treating with her friend Nate. You would have never known she had started to go downhill if you saw her last night. She was running from house to house & jumping around like crazy. Her feet did start to hurt after about 45 minutes but last year she didn’t even make it 30 minutes before she complained of her feet hurting.

      Emily has a TON of candy. She’s never gotten so much candy on Halloween before. She got many compliments on her costume. Some people thought she was an angel or a butterfly but she would kindly inform them she was a fairy then take their candy & run to the next house, LOL.

      We did go to one “scary house”. A guy came out dressed as Michael Meyers (from the Halloween movies). It freaked ME out! He walked just like Michael Meyers & everything. It was CREEPY! Emily’s friend refused to get close but Emily just stood there looking at the guy like he didn’t scare her at all. I’m sure after she sees those movies (when she is MUCH older) she will have a different take on the situation.

      She seemed to tolerate the 30 grams for each infusion well. She ended up with 110 grams of IVIG over 4 days. I’m hydrating her like crazy & still medicating her today with Motrin every 6 hours & tonight I’ll give her a Benadryl – just as a precaution. She’s complained of a slight headache a few times today but ice cream & popsicles seems to make her feel MUCH better.

      Her nurse is coming back on Tuesday before we go to vote to give her a 20 gram infusion. That’ll be the last time we see her nurse until December. She’s going to Mexico & we’ll have a replacement nurse. She came over the other day to meet Emily. She seemed nice so I’m hoping all goes well. I HATE having a new nurse. It makes me worry too much.

      Oh and…

      Her eye looks NORMAL & there is no more pain! I had her follow my finger with her eyes this morning & she said “That IVIG sure does work well. It doesn’t even hurt anymore!”.


    • Anonymous
      November 1, 2008 at 6:32 pm

      Kelly, I glad Emily enjoyed her Halloween. Sounds like you are holding up. Hang in there. You and your family are in my prayers.

    • Anonymous
      November 1, 2008 at 7:25 pm

      We are all glad that Emily has had a rapid reversal of symptoms with the IV IgG and hope that there has been little added damage. It is hoped that this was just a little baby step backward and that slowing down the weaning will make all the difference. It would sure be great if there were a sign saying the level of disease activity rather than having to wait and base decisions on something as big as symptoms.
      WithHope for a cure of these diseases

    • Anonymous
      November 1, 2008 at 8:45 pm

      Thanks for the update on Emily. I was waiting for good news.

    • Anonymous
      November 1, 2008 at 11:32 pm

      Kelly, I’m glad to hear Emily is doing better! Soo glad she got to go out on Halloween. I know what ya mean about the load of candy, my kids went out for 40 mins and came back with half a big bag full. Hope everything else is going smoother for you and for your husband. Thinking about you All. Take care.

    • Anonymous
      November 1, 2008 at 11:58 pm

      So glad to hear the good news! Thanks for keeping us posted.

    • Anonymous
      November 2, 2008 at 1:33 am

      Yeah Emily!! Here’s hugs 😀 for a little gal with a great deal of perseverance! You go girl!!

    • Anonymous
      November 2, 2008 at 8:57 am

      Thanks everyone!

      I’m not considering this a relapse. It was an experiment that didn’t go as expected – that’s all. Emily rebounded quickly & I’m sure she’ll be right back to getting treatments every 3 weeks in a few months. She could probably go that long much sooner but I really want to build the IVIG back up – just to make sure. I’ve had enough experimenting for awhile.

      Thanks for all of the prayers! They really are appreciated.

    • Anonymous
      November 2, 2008 at 10:07 am

      yeah for Emily !!!!!

    • Anonymous
      November 2, 2008 at 10:20 am

      Thats a great update! The little fairy is flying again! Glad to hear the IVIG did its job. Take care,

    • Anonymous
      November 2, 2008 at 10:55 am

      Kelly, so glad to hear Emily is better. Hope your husband is too. Take care.

    • Anonymous
      November 2, 2008 at 12:08 pm

      Hi Kelly,
      Great news on Emily. Glad to hear she is doing so much better. Tell her I was a gothic fairy for halloween and believe me she was much prettier than me. In fact I’m a little worried because so far the black hasn’t washed out of my hair so I may show up in chicago looking like cruella deville…lol.

      Hugs to all

    • November 2, 2008 at 6:08 pm

      Good news woman!!
      Dawn Kevies mom

    • November 3, 2008 at 11:36 am

      Kelly, you news is wonderful:D . I feel warmth and rejoice with you and Emily. Gary

Update on Emily

    • Anonymous
      January 16, 2008 at 5:50 pm

      Emily had her 4 month check up with the eye dr today. He said that her eye looks excellent & that it’s about 99.5%. He said that that it’s not 100% because she has just a teeny tiny bit more that it could go over but he said that since it’s painful to put your eye over all the way & hold it there, he doesn’t see it as a problem…neither do I. I’ll take 99.5% ANY DAY over what it was when all of this first started. He did say that her vision is just slightly better in the right eye than in left, which I found weird because all if the problems are with her right eye. It’s good to know that she hasn’t had any vision loss.

      He did say that he’s seen 1 other child in his whole career that had CIDP with the eye issues. He said that child recovered well but it did take surgery & time.

      February will be 1 year since Emily’s last relapse (KNOCKING ON WOOD!) and the eye dr originally told us that he wanted her to go without relapse for 1 year & then he would consider surgery. He doesn’t feel that she needs the surgery now! She’s recovering well on her own (with IVIG, of course!) and he feels that surgery is not necessary at this time! WHOO-HOO!

      Other than that…

      Emily is still on IVIG every 2 weeks & doing well. We saw her neuro a few weeks ago & he was very pleased again with her progress. She looks & acts like any other 6 year old. It’s so good to see her being able to be “normal”.

      I hope everyone else is doing well.

    • January 16, 2008 at 9:02 pm


      What wonderful news! I am so happy for your family! Keep up the good work mom!

    • Anonymous
      January 17, 2008 at 12:50 pm

      I am so happy for all of you. That is wonderful news. Dell is eating a peanut butter and jelly sandwich and watching Popeye now. It’s almost nap time.

      Please tell Emily hello and I’m so happy for her.

      Love, Lori

    • Anonymous
      January 17, 2008 at 2:56 pm

      [CENTER]I am [COLOR=”Plum”]HAPPY[/COLOR] [COLOR=”DarkOrchid”]Emily[/COLOR] is doing [COLOR=”plum”]well![/COLOR] :)[/CENTER]

    • Anonymous
      January 17, 2008 at 3:36 pm

      that is great news ! It’s alway a spirit lifter to hear the children are doing good and or getting better.

      Have a great weekend !


Update on Emily

    • Anonymous
      October 26, 2006 at 9:39 pm

      We are seeing a new neurologist as I am completely fed up with the other one. I took Emily in to see him & he told me that I should just accept that her eye is not going to be perfect, let it relapse & be happy that her legs are working. (Yeah, he really did say that)

      We’ve had 2 appointments with the new neurologist & I like her alot so far. On Tuesday Emi had another EMG. She was fine for the 1st part but we had to stop when we got to the point where they used the needle. Emily just could not calm down enough for the dr to get a good reading. She tried so hard though.

      The dr said that she wanted to discuss Emi’s case with the other dr’s at the clinic & get back with me. She called tonight & said that the EMG shows improvement in the amplitudes but there is still slight demyelination. There is proximal involvment in her arms. That was explained to me that the damage is more towards her upper arms than near her fingers.

      The MRI done in December shows inflammation in the 7th cranial nerve, which controls facial expression. They are perplexed because Emily has right eye paralysis but the 6th cranial nerve showed no inflammation. (that’s the nerve that controls the eye muscles) Also the spinal MRI shows inflammation along the spinal cord that they want to investigate further. It could go along with CIDP but they are still concerned about it.

      We have to go back in a few weeks & they want to redo the brain & spinal MRI, a spinal tap & finish up the EMG while Emily is sedated. She will not be put under general anethesia – only twilight. I’m told that she will be aware of her surroundings but won’t be able to feel anything & she won’t care what is going on. I will be with her throughout all of the tests because they have an open MRI machine. It’s done right at the dr’s clinic & not at the hospital.

      The dr told me that we are looking at 3 different outcomes.

      1) Emily has atypical CIDP. Which means that she doesn’t present like a normal CIDP’er.

      2) Emily has atypical CIDP along with something else that is causing the eye problems.

      3) Emily does not have CIDP at all & it’s something genetic.

      My husband & I are both going to have genetic testing done on us. We will be referred to an immunologist to do that. We may also be asked to have EMG’s done as well.

      Now this is the wierd part, I’ve been having leg pains & numbness over the last month or so. I’m not making a big deal about it because I’m thinking that I’ve researched CIDP so much that my mind is playing tricks on me or that I’m having sympathy pains or something. But I’m also worried that the mold in our apartment really is the culprit. I’ve never had problems like this before EVER so I don’t think it’s something genetic from me. My husband says that no one in his family has ever had problems either, that he knows of.

      I am also upset because it seems like things were not done right from the beginning. There are blood tests that should’ve been done but weren’t & we should have been sent to an immunologist when all of this first started.

      We are to keep Emily on her IVIG schedule of 2 IVIG’s a week for 4 weeks then 3 IVIG’s for 2 weeks until further notice. The dr suggested trying plasmapheresis but I told her that is a last line of treatment for me. I think we need to explore the less invasive treatments first.

      I’m sorry that I haven’t been around much lately. Life is just very crazy for us at the moment.

      I hope everyone is doing well.


    • Anonymous
      October 26, 2006 at 10:05 pm


      Did you get any idea on what the new Neuro thought about the mold situation?

    • Anonymous
      October 26, 2006 at 10:43 pm

      Ali –

      The dr doesn’t really know. She said that mold can cause neuropathies but at this point we just don’t know.

      We really need to have the mold tested to see what kind is growing in there. Then we’ll be able to better determine if that is the cause.

      Honestly, in my heart I feel that the mold is playing a part in this. Emi’s been sleeping in her room since she was 6 months old. What are the odds that there would be this ongoing leak with mold growing here & Emily having CIDP but they are not connected? Kids aren’t supposed to get CIDP – it’s an older adult disease. My feelings are that something triggered it. It wasn’t immunizations & it wasn’t an illness so what could it be?

      I also think that she does have CIDP. She fits the disease perfectly with her symptoms. The new neuro is just being cautious because of the way that our case has been handled. She didn’t see Emily at her worst & I believe if she would have then she would know that it really is CIDP.

      I am so stressed out over this. I feel like we’ve taken step backwards instead of forwards…like 10 months worth of steps. It’s very frustrating but I know that it is necessary & for the best.


    • Anonymous
      October 27, 2006 at 10:24 am

      Thanks for the update and I am so sorry for both Emily and you for having to go through all this yet again…..You will continue to be in my daily prayers


    • Anonymous
      October 27, 2006 at 10:04 pm

      Thanks for the update on Emilys new Neuro. I am so glad you have changed. 🙂 I don’t remember hearing anything about mold before, but I know molds can be serious. It sounds like this new Doc. is getting more tests and you will get better answers. You ALL will remain in my prayers.
      Mary Ann

    • Anonymous
      October 27, 2006 at 10:13 pm

      Mary Ann,

      I posted about the mold last month. When the boards were down a few weeks ago the post got lost.

      Here is the link to Emi’s mold site. There are pics of her & pics of the mold as well.


      It also tells our story & everything that we’ve been through. We have raised about $500 so far! My husband’s work is also working on some doing some fundraisers for us. The mold testing is EXPENSIVE!

      I LOVE the new neuro. She is thorough & if I don’t understand something she will keep explaining it until I do. She is always honest with Emily about everything that she does to her & that has put Emily at ease some.

      The old neuro was crazy. Just plain nuts!


    • Anonymous
      October 27, 2006 at 10:13 pm


      Thanks for the prayers. They are needed and VERY much appreciated.


    • Anonymous
      October 27, 2006 at 11:02 pm

      [COLOR=”Purple”]Hi Kelly, my thoughts and prayers are with emily and your entire family. I found CIDPUSA foundation on a search and under causes it does state CIDP can be caused by mold. I think the symptoms you’re experiencing are very real. If they continue I wouldn’t hesitate to get it checked out. It sounds like you now have a very good neurologist. I pray you will get some answers soon. Vicki[/COLOR]

    • Anonymous
      October 28, 2006 at 11:06 am

      Vicki –

      I saw that info on CIDPUSA also. That it what prompted me to do further research on it. I’ve found articles & studies done on mold & neuropathies. There is a link between them. There was 1 study that I read that said that a certain type of mold, staccibotris (I’m sure I’m spelling that wrong) can cause demyelinating neuropathies. That particular type of mold grows in soil, drywall, wood & carpet. We live in a “basement apartment”, there is a crack in the foundation & the mold is growing in the carpet, on a wooden bookcase & I’m sure in the wall too. That seems to me the perfect place for that kind of mold to grow.

      When we see the dr the next time I will mention what I’m feeling to her. She said that she wanted both my husband & myself to undgo EMG’s as well, so maybe we’ll just speed that up. My feet are still feeling wierd today. I’m trying to ignore it & hope that it just disappears on it’s own.