New to this board-here is my story!

Hi-

I do not remember what brand I was on for ivigs. My neurologist always would have me premedicated with benadryl.

As for why I always wanted to make doctors angry,I think it was lack of control over my life. So I would do the opposite of what the doctors told me to do unless I knew this was reverse phycology(I know I spelled that wrong). Anyways the only doctor I ever really listened to was my neuro. He was the only doctor who did not annoy me.

Other than that I was a happy child. I had lots of friends in elementary and was “pretty normal”,I got a walker in 3rd grade because my balance was not that great-I did not use it in the classroom,only walking around the school. I guess when it comes to this disease,I have always been angry about it. I do not blame my parents for any of this. I am quite stubborn. My parents used to fight with me about wearing my braces,I hated those braces more than anything. I used to wear them in elemantary and hated them,but still wore them. I got into middle school and wanted to fit in and decided I was not going to wear them anymore. My parents fought with me to wear them and said if I did not my feet would get crooked. I did not believe them or the doctors. Ha-well now my feet are extremly crooked and is difficult to walk,I am considering geting my feet fixed in the near future.

I have never accepted this disease,I also think that is why I never listened to anyone. My mom and dad and the doctors told me to do exercises to keep my back from geting crooked. I did not want to,so I did not. I never really imanged I would get crooked. Well I did and had my spine fused at age 15. After the surgery and I was done with the pain meds I felt great. It was nice while it lasted..for like 2or3months I was pain free and then I started getting in pain again. Though I am not as crooked as I was before surgery,I am still pretty crooked. I was not supposed to get crooked after surgery.However,nothing ever works the way it should with me. I have also been really depressed lately because of this disease.Cidp sucks!!! I am sure you all know this!!! Anyways now I am on pain meds-Ultracet for my back.
So the only meds I am on right now are Ultracet and now Wellburtrin for deppression,it’s like my 5th one in 6months.

My parents raised me as normal,I had a normal life. My sisters and parents have always treated me normal,not as disabled or handicap,which is a wonderful thing. As a child the only time I did not feel normal was when I was in the hospital for ivigs and when I had to go to clinic. Other than that I never really ever saw myself as different. Only lately do I feel like I am different. I guess I just hate whenever I go anywhere I use my scotter and people love to stare.

My former neuro got me into telethon when I was five and have been on ever since. I love performing in front of the camera. I also took acting classes when I was younger and participated in plays. I love acting. I did a show two years ago worked with a local emmy award winner and loved working with everyone. I love performing,it is an escape from life and is also exciting. So that was what I loved doing as a child and still do. Find something that your child likes to do and sign them up for classes. My sisters always danced and I acted and did telethon so they had their day and I also had mine. Let them have something that they can do that they love and that does not matter if they have cidp:)

I think I never believed it would get this bad and making the doctors and other people in the medical profession angry was amusing to me and it also gave me control…I have only now started thinking about treatments for cidp in the last few months. I joined a group on facebook(kind of like myspace) for cidp. I thought it was great because for the first time I got to hear about other people who have this and that is also when I started comming on here. I would love to get on a treatment that would help me and also something that would make me stronger. When I was first diagnosed they thought the emg machine was broke and my doctor told my parents he could not believe how I was still walking. I was very weak however. He started me on prednosine and it was a huge difference. It worked really well and so did the ivigs,until my body became immune to it. I do keep thinking that maybe since I have not had Ivigs in me for 10 whole years that maybe it could work like it used to:) -minus all those bad side effects:( My mom was also telling me that maybe since I have not been on prednosine for 5 plus years maybe that too could work! So if I were on a low dose where it could help me but not make me gain weight.

I am thinking about going to the university of michigan since they have a neurology dept devoted to cidp,gbs,cmt. I want to go away to college,but have all my independance because I do not want an aid. I do alot of things but still need help with other things that my mom helps me with. I heard this one lady who had a serve case of cidp had a stem cell transplant and now I guess she is better:) I want there to be something that works,but I am afriad because what if I try something and nothing works for me. I want to get better!!! I do not think I ever believed I would have cidp for the rest of my life. I have been researching different types of medications and will have to ask when I get a new neuro.

To Emily’s Mom since you said you live in Mi,who does your daughter see for a neuro? How often does your daughter get ivigs? I think I used to go every 4-6weeks. I also was diagnosed when I was four. Are you registered with MDA? If so, does your daughter do the local telethon? Sorry if I ask too many questions. Until I came on this board I had never even heard of children having cidp,I thought I was the only one out there,lol. On facebook the people were either diagnosed in there late teens and up. I am glad I found this board and can talk with others who understand.

Anyways,I hope I could help the parents on here who have children with cidp. I think I may have rambled on too much.

[QUOTE=Dawn Kevies mom]Hi Jessica,

Besides the issues of pre meds etc. that Kelly brought up, I was wondering if your Iga levels were ever tested. Based on the results, people with different levels react better or worse to different brands, both symptomaticaly and physicaly. My son is ten and was dx at 9. I did notice that each time, there were different reactions. In the past, sometimes the effects did not start until 6 hours after the completed treatment, Gammaguard said that this is not uncommon with children. As well, this last time, we were able to maintain a pretty symptom free, non aseptic meningitis reaction for most of the infusion with the exception of one five hour period.

Maybe you could get your Iga levels tested to be sure. Please try some form of treatment soon, you are a young girl! Maybe you could try ivig again. As Kelly mentioned, pre medication, SLOW flo rate, brand, all matter. Some people even get a small amount of iv steroid to aid in these reactions, maybe that could be an option for you.

Good luck to you!
Dawn[/QUOTE]

Hi-
I am not sure if my Iga levels were ever tested. I will have to find out. I also do not know why I never did iv steroids to aid in these reactions,maybe my doc thought it would be too much since I was on high doses of oral prednosine,not sure though. I was wondering how long did your son experiance symptoms before he was dx with cidp? Do you know what caused your son to get cidp? I am just curious. I was dx when I was four and know one knows for sure what caused this.

Good luck to your son as well:)

Hi-
My neuro was out of M.I.N.D in oakland co.-liked him,but all those other doctors I really did not care for at clinic…lol..So I probably would not do to good with the lady you went to and did not care for. I will see my pain managment doctor at the uofm in two weeks and I may ask for a referal for a neuro.
Even when I was on the steriods,I was still weaker as I aged and in middle school towards the end of taking them my body may have become immune to it. Well I am glad your daughter is doing well:) Tell your daughter yes I can pick thinks up,though it is difficult. When I am home if I drop something I will make sure I am holding on to something with one hand and with the other hand I will pick things up. My arms are pretty strong,I guess. Although I do have a slight tremor, and lately I seem to be really clumsy,I grab things but they will drop alot of the times. But because of my balance issues always been a problem and now my feet are bad so even more of an issue,so when I go out places I like to stay in my scotter so I do not have to worry about falling. My arms do not really hurt. The main pain issue with me is my back,other than that nothing too bad. I think that is really great that your daughter can do monkey bars and stuff, when I was her age I could walk in my yard unassited and “run”in the yard with my sisters and would play on the swings. At Emily’s age I had a walker but only needed it for walking around in the school,I never needed it in the class. Yes when I was younger I had those feelings more,I don’t know why it used to happen alot when I was younger,not so much anymore. I used to describe it as numbness, prickleness,tingelness,I just used to say it feels like they have fallen asleep. My hands used to do this alot but I got used to this,it did not last that long when it would happen. I never used to get pain in my legs,I do have bad circulation in my lower legs-so they are always like ice,most of the time I do not even notice though. Wow,that’s really cool that your daughter likes to perform too and did a play:)

If you or Emily ever have anymore questions,just ask!
Jessica 🙂

[QUOTE=Emily’s_mom]The dr that we saw was also at M.I.N.D. My cousin sees her for epilepsy & likes her. I just thought she was too abrasive. She wanted to do an EMG on Emily once every 2 months & I thought that it was ridiculous to put a child through that all the time. I know there is a man dr at the MIND that knows a lot about CIDP…I cannot remember his name right now. That is probably who you saw. Apparently he trained the dr that we saw. I wish he would’ve trained her to have a better bedside manner, LOL. They like to use steroids at the MIND too. That was another reason for us leaving there. Emily actually got worse while on the steroids.

Emily rarely has any pain now. Occasionally she will complain that her legs hurt but it never lasts long. It’s usually when she wakes up in the morning or after a particularly long & active day. We consider ourselves to be very lucky with this. We’ve read about so many other people having tons of pain & not being able to be as active as Emily is.

I really do hope that you try out another neuro. You don’t have to live your life this way. There have been MANY, MANY advances in the treatment of CIDP and other auto-immune diseases. I’m sure there is something that would help you. I’m surprised that your pain management dr hasn’t pushed you in to seeing a neuro before this. If you get on the right treatment course your pain just may end up going away.

I hope you stick around here. You’ve been very helpful to me today in understanding what it’s like to be a kid with this disease.

I know that other parents may try to compare your situation to their childs. I hope that they understand that each CIDP’er is different & just because the IVIG & steroids seemed to have stopped working for you – it does NOT mean that will happen for their child. It’s important to keep having faith that our kids will come through this. They are lucky to be alive during a time of such great medical advances. And I’m writing this for 1 certain mother…she KNOWS who she is, LOL. DO NOT WORRY!

Kelly[/QUOTE]

I totally agree with you,what works for one person may or may not work for another. Like I said I think this and the facebook group has made me want to try some kind of treatment again. When I see the pain managment doc I think I will ask for a referal for a neuro at the uofm. I just do not want to have to go through all those awful tests again,lol. They are all very painful. That is one of my reasons for not wanting to go to one. But yes,maybe since it has been ten years,ivigs could work again on me:) And maybe I would not get all those bad side effects again.

My neuro was Dr. Nigro out of M.I.N.D. He was wonderful. The doctor they refered me to was Dr.Simpson. I do not know about him,lol.

I cannot stand doctors with a bad bed side manner either! I agree emgs every two months is way to much to have to be put through.

I am glad your daughter does not experience that much pain. Pain sucks! lol -I do not believe my pain is directly linked to cidp,but is due to my scolios which was caused by my cidp. When I was younger before I had scolios I did not have much pain-nothing where I needed pain meds for.

I will find out what my pain managment doc says in two weeks,if I feel up to it. I of course refuse to acept this disease,that I will have to live with it for life! So I should just suck it up and try everything to make the symptoms less and get stronger:)

I am glad I could help you and anyone else if I did:)
Jessica

[QUOTE=L Cala]Thanks Jessica,
You helped me a lot. When I was a child I was diagnosed with a chronic disease and felt and acted exactly as you described and now with CIDP also went into denial and “screw them” mode. Five years of denial is all I got though so now I am having to face this and take the treatment and learn to accept. It’s all a process and I am sure that you will make good decisions for yourself in regards to what treatments to try. I hope you stay in touch. Thanks again.
Linda[/QUOTE]

Wow,that’s amazing. I do not know of many people who have had diseases and were like me. Yes the “screw you”, mode was how I was all the time,still kind of am. Only now I want to try treatments I think because maybe something could work,and yet at the same time I worry I am just phyching my self up and this could all just be false hope. Having a disease sucks,even more when you had it as a child and still do! What chronic disease were you dx with as a child? How long have you had cidp and what if any treatments are you on right now?
Keep in touch-