Pregnant with Cidp now WHAT??
AnonymousMarch 27, 2007 at 3:57 pm
Hello well I’m not sure where to begin other than to just come out and say it–my daughter Monica couldn’t have her spinal due to her finding out today that she is pregnant. Called the Neuro’s office to find out info noone there hopefully will call tomorrow. Also called the nurse who does the IvIg’s said she willl cancell the nest two days infusions due to she wants to speak to Neuro and that she has never given IvIg infusions to an expectant woman. This is so d much stuff for me as a mother who really doesn’t have a say to worry about. Yes Monica realizes that it could be harmful on both sides yet is waiting to hear from Neuro’s office to see whats next. I would appreciate any and all in put on this situation. Trust me I am a caring loving mother and have said my piece but what are you to do? I am worried sick and am afraid of the unknown more now and what will come next. I am in need of a vacation to a tropical island where your stress goes away and your every day life vanishes away. But I know that isn’t reality either. I also know your all thinking “Gosh what is the matter with this girl” I know I’m living it each day. KIDS right? I love her with all I can and am terribly worried please help.:(
AnonymousMarch 27, 2007 at 9:02 pm
Hi Dawn ~ I can’t begin to imagine how difficult this situation is for you ~ and scary! There are several on the forums who have had pregnancies since GBS but I’m not sure about CIDP. Others will be along that know more.
Please know that my prayer thoughts will be with you as you navigate this unexpected bend in the journey.
AnonymousMarch 27, 2007 at 10:19 pm
Dawn, so sorry to hear of your worries. As moms, we are always going to worry about our kids…especially when circumstances are out of our control. The important thing is that your daughter knows you are there for her 🙂 and I’m sure she does. One day at at time…
My prayers and best wishes to you and your daughter,
AnonymousMarch 28, 2007 at 9:24 am
Dawn – I’ve done quite a bit of research on IVIG and I have read that it has been effective in sustaining pregnancy in women who have a history of multiple miscarriages. My research on the subject seemed to indicate that it was fine to take while pregnant.
I realize this isn’t what you were hoping for at this time and I know that you are scared for your daughter. Just try to remain hopeful. I’ve read many stories of women with CIDP and the symptoms would go away while they were pregnant. They would often times come back after the baby was born however, so that would be something to always keep in mind.
Let us know what the dr says. I’m interested to know what he says about the IVIG.
AnonymousMarch 28, 2007 at 10:42 am
Kelly As you said you have done some looking at articles on pregnancy and cidp where? I want to learn and read what I can. Its 10;30am and we have left several messages with the neuro still no reply great huh? I need to hear what people say who have gone thru this and have cidp. Monica has had syptoms of cidp since sept. and dx in feb. therefore its only been 6months into cidp and with her only been being treated for a month. This unknown is killing me and I want to know if or what to do next. If anyone knows where or who might have more info please let us know and thanks Will let all know how it goes.:(
AnonymousMarch 29, 2007 at 9:25 am
Here is a link (copy & paste into your browser) that says what medications are safe or not during pregnancy: [url]http://www.safefetus.com/search.asp?SearchType=1&letter=g[/url]
Look in the right column & it will tell you what the medication is. There’s quite a few brands of IVIG listed.
I hope that helps some. If you want to do more research on it then Google “IVIG & pregnancy”.
Oh and about trying to get ahold of the neuro at the MDA clinic. We switched to the MDA clinic in Farmington Hills, MI and had the same problem with not ever getting a call back. The last straw was Emily was relapsing & I left 5 messages with no return call. We switched back to the old neuro. He doesn’t know as much about CIDP but at least I can reach him when there is a problem. I hope the dr calls back soon.
AnonymousApril 10, 2007 at 3:34 pm
I have had CIDP for 13.5yrs. I was originally diagnosed when my firstborn was 5mths old. I began IVIG treatments at that time and had them for the next 10yrs, through 2 other pregnancies. During my second pregnancy, I had them every 2 weeks most of the time as with my hormones in turmoil, I had problems with sensations and pain that increased. With my third pregnancy, I just kept them at 8 weeks apart and then after deliver, weaned off them totally.
I also had them through nursing up to almost 3yrs of age. My neurologists never had any problem with my having them during pregnancy. They kept me “stable” at a time that some flare up.
I would be more than willing to talk to your daughter if she wants as I have talked to others when pregnant.
AnonymousApril 11, 2007 at 3:28 pm
Deb thanks for writing. I still have a couple questions while you were pregnant did you take any other meds besides the IvIg’s? Guess I’m a bit worried due to the fact that Monica has only quite taking all her meds now for about two weeks and am concerned what it could do or affect the baby?? I’ve read a few web sites that mention that some woman relaps pretty hard after having their babies? Did that happen with you? I just pray that her OB dr knows something about cidp especially because Monica is going to our small town hospital and I’m not to sure they know to much on this condition. Thanks hope to hear more.
April 11, 2007 at 11:52 pm
Hello Dawn! I just responded to the email. I haven’t been on for a while due to problems with my hands. I had the IVIG during my pregnancy and it was not a problem. In fact, my doctor believes that the increase in my volume of blood may be one of the reasons that I didn’t get the migraines that I always get following a treatment.
Plus, at one point, I was able to go 8 weeks without IVIG although the average was probably closer to 5-6 (my norm is 4 weeks and I am back to that now). The doc did stop the solumedroyl that they give me prior to treatment as a precaution.
IVIG is also in the book as okay to take while nursing. I quite nursing after 2 months due to my son not gaining enough weight and the drain it was taking on me.
I did relapse after the pregnancy. I now have foot drop in my right foot (at least I have a matching pair now:D ) and muscle atrophy in my hands. On the plus side, I have handy new AFOs which make walking feasible and I have been in OT/PT to gain back some muscle. I listed world champion arm wrestler in my ‘goals’ in therapy – who knows?!
I would do it all again and we’ve even talked about another baby.
I sent you my number – feel free to call if you need anything. And congrats on the baby 🙂
April 13, 2007 at 4:34 pm
I don’t know if I needed a specialist as much as I needed a doctor who understood my symptoms were CIDP and not pregnancy. When I tried to stress how my hands were tingly/numb, I was told it was carpal tunnel and to get braces. Even after I reminded them of my medical history, the medical records I requested read “suggested braces for night time use”:rolleyes:
I should have been more vocal but I was too tired at the time. If I ever do get pregnant, my ob/gyn will be one who has fewer patients. As long as she has a competent neuro, she should be fine. Just make sure the 2 doctors talk – mine didn’t (I found out after the pregnancy) and I think it would have helped.
My mom always says being a grandma is more fun than being the parent – enjoy!
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