22 yr old daughter with cidp
AnonymousMarch 5, 2007 at 2:57 pm
Hello to all. I am new to this forum and wanted to write and tell a little about my daughter. She was dx with cidp 2/07 yet all the problems started about the end of July 06 with the leg weakness falling numbness then it moved to her arms and hands. She never seen the dr until mid January07 which at that time the dr thought that she had a pinched nerve in her back. A mri was ordered which came back normal, then they did an emg which then they said she had cidp. We went to Michigan State University MDA clinic on 2-7-07 lots of tests and they set up for her to have IvIg infusions suppose to be 5 but only did 2(not sure why) then the clinic said she needed a spinal tap done still waiting for the family dr to schedule that. She was taking 40mg of predisone and now its down to 20mg a day. They gave her vicodine but everyone (Pam H.,Cindy Fletcher and Jerimy) says she needs to be on Neurotine instead. For about a week now she has been vomiting bile and says her stomach is getting bigger(not sure if its the predisone)My daughter Monica has 3 small children at home and a very worthless boyfriend whom doesn’t help at all. I spoke to Monica last week about her cidp and she is in complete denial and feels she is going to get well soon. I was a wreak but I can only say so much to her because I don’t want to upset or stress her out. I have been reading all that is available and talking to people on this forum for my own support. If anyone has any ideas or advise please feel free to email me at firstname.lastname@example.org I would greatly appreciate it. I am so glad that this web site is here it has helped me out alot. I look on her each day just to keep myself going.
AnonymousMarch 6, 2007 at 7:47 am
Vomiting bile could be a sign of hepatitis. I had that same issue and was diagnosed with Autoimmune Hepatitis. She really needs to see specialists and get her conditions under control. If there is anything I can do to help I hope you know you can call anytime. Let me know if you need the number. You guys are in my thoughts and prayers.
AnonymousMarch 6, 2007 at 12:44 pm
Hello Jerimy Thanks for the info. Monica and I go to the MDA clinic on 3-7-7 for her monthly check up. I’m going to write down lots of questions and hopfully will get some in put and info. I appreciate all your info and advise and will let you know how it goes. Thanks so much you all make it easier to get through each day. And yes I’ve still got your number so be prepared I may call upon you soon. Take care and God Bless Dawn
AnonymousMarch 6, 2007 at 5:50 pm
Remember somthing coming from Monica’s doctor many be more meaningful and believeable for her to hear then her mother who is worried about multiple issues in her life.
We are all here to help evch other…strength in numbers.
Good Luck on Wed.
I told you Jerimy was helpful, he is one of a kind…which kind exactly we are all still trying to figure out.
AnonymousMarch 8, 2007 at 8:41 am
Hello to all again. Just wanted to let you all know that yesterday (3-7-07) was our second visit to the MDA clinic. Monica’s dr Angala Borders Robinson whom is a neurologist from Duran,MI seems to think the IvIg helped some. I don’t see it other than Monica isn’t falling any more and yes I realize that this isn’t something that gets better at a fast rate. Monica needs to have a spinal tap and some blood work and will be getting 2 more IvIg also. Her right leg has very little strength and she still walks as if she has no balance. Her legs look redish purple in color and feel cold to the touch yet Monica says they feel warm to her. She is only getting about an hour or two of sleep at night so the dr prescribed elival up to 30mg per day to help aid in sleeping and so she isn’t so fatigued during the day. I am eager to get the results of the other tests so we will know what is coming next. We go back to the clinic in May. Sometimes I wonder why all these tests are taking so long to get probably I’m just to damn inpatient. I do feel somewhat better since our visit with dr. but I know its along road ahead too. One question I forgot to ask the dr was –can Monica have surgery to get her tubes tied so no more babies? I was told that she can’t have surgery or any time of shots is this true? And since the dr thinks the IvIg helped does that mean that it will continue to help? Or does it just help for awhile and not the next time? One more thing before I go I’ve been trying to contact Emily(Nala) just because I’d like to communicate with her since shes close in age to Monica. I hope all is going alright with Emily if anyone knows please get in touch I do wish her the best as I know she just started posting again. OH the vomiting of bile dr said could have been from IvIg will know more when tests come back she said. God Bless each of you and your families
AnonymousMarch 8, 2007 at 10:06 am
dawn, yes, no surgery or shots. lp not really necessary, but that’s my opinion. a ncv is better & even that isn’t necessary. the ivig is working just by reading your post. as long as she only has straight gbs, she will continue to improve. gbs does stand for Get Better Slowly. also if she over does it, she’ll have a setback [not a real attack, but can feel like it] & need to rest big time. mucho, mucho rest is needed to recover from gbs. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousMarch 8, 2007 at 6:38 pm
I have a 2 year old with CIDP. I know how it feels to be a mother to a patient.
The above post spoke about rest. I also wanted to point out about the affects of a bath and heat. If you search under weather, you will see about the heat. Our son stays inside when the temp. gets to around 80 degrees. Also, when we give him a bath, we do it very quickly. The water seems to really tire him.
I advise you to read, read, read and talk to as many ppl. as possible. I have met some wonderful ppl. on the forums and have become friends with a few. I don’t know if you are going to be the “lead” in your daughter’s care but I know that I am my child’s best ally. We have a wonderful doctor but I know he can only do so much when it comes to research. You take the bull by the horns and educate your daugher and yourself. As my friend Jerimy said “I am my doctor’s worst nightmare”. I am an educated mom but I continue to learn everyday. I think I’m going to sign up to take the neurology test and get my degree, lol.
Good luck and keep us posted.
AnonymousMarch 9, 2007 at 7:25 am
Hello Gene and Dells Mom Thanks for the info all I can learn and find out helps alot. Gene you mentioned lp and ncv what is that? Guess I just not sure of all the abbreviations yet. How does one know if its gbs or cidp? Her dr said it was cidp. Also what is the difference of cidp and progressive? Guess I need to get educated more on this whole thing more than I have been trying.As far as the heat goes Monica says that taking a warm shower helps some with her pain. Can anyone explain what happens after the spinal tap? I realize that they’re looking at the t=cells white blood count proteins etc. does that give them and idea of what meds next and tell if Monica does have the progressive type of cidp? Well thanks and God Bless.
AnonymousMarch 9, 2007 at 9:04 am
lp = lumbar puncture = spinal tap. ncv = nerve conduction velocity. cidp is usually first Dxed as gbs & then w time & patient history during this time, if applicable, is changed to cidp. the lp looks for a protein count of 55 or over to indicate neurological inflammation. it is used to help Dx gbs. not sure what you mean by progressive. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousMarch 9, 2007 at 6:34 pm
I also have a daughter, 22, who at 20 was diagnosed w/cidp. I am on the road working most times these days trying to catch up from the long months I spent caring for my daughter, but I am usually available by email. I just wanted you to know that it does get better – just takes lots and lots of patientce ( and research helps so that you can have a more active role in your daughter’s care.)
CIDP can be either relasping/remitting or progressive. I recall reading that progressive types do not respond well to ivig. Despite treatment, the severity of disability gradually gets worse over time. For these, a more aggressive immunomodulation can help. With relasping type, ivig has a beneficial, but temporary, effect. Many w/cidp have ivig on a schedule, based on their needs.
Another consideration, in the event your doctor decides to try other therapies, is whether your daughter primarily has sensory or motor involvement. Steriods are not as effective in motor related damage; but shows beneficial effects for sensory type damage. I made the decision early on to delay steriods as long as possible as they have significant consequences.
I can point you to a number of peer-reviewed medical articles on cidp (I now have a vast collection) if you have a need. Just send an email. Lots of other members here have the experience and knowledge to help you and your daughter through this thing.
best wishes for your daughter,
AnonymousMarch 14, 2007 at 3:36 pm
hello not sure if you received my email. I am trying to figure out if my daughter is relasping? Still very new to this and would appreciate any in put or info anyone can provide. How is your daughter doing now? Does she live with you? When she got cidp was she in denial? I’d like to hear your story thanks and waiting to hear from you again. Best of luck always Dawn C.
AnonymousMarch 16, 2007 at 11:23 am
I just got in from a long road trip, and while gone, broke my laptop, and so having to check the forums with my desktop from home. I have one more short trip today, and then I will finally be home for a week. I will send you a pm later today.
I don’t have any experiences w/ the vomiting – I think some of the others have better advice for you concerning that.
One thing that I think is important for you as a caretaker to understand is that it took pretty much a full year for my daughter to REALLY UNDERSTAND the “chronic” part. Let me explain by making an analogy to death ( and please, please forgive me for having to use this as a comparison, but it was the only way for me to get this idea across to other family members who could not understand).
In the beginning, we all thought that as soon as we had a diagnosis, we would, at least, be able to have some “control” over this monster. IN some ways, we did, but that feeling is fleeting. Within a very short time, my daughter lost everything that defines who she is and what she aspired to in life – she could no longer go to school (in college), lost her job (they were nice at first), lost many of her long-time friends (could not relate), and to add insult to injury, lost her independence, privacy, and respect (had lost the ability to control her own body, take care of herself, needing assistance for the smallest task). We unconsciously went through a mourning process – denial, anger, compromise, acceptance.
It sounds to me like your daughter is still in denial. She thinks mind will triumph over body – all of us, when young, just can’t believe that something like this will come along and change our course in life without our consent. But it happens, and I honestly believe that it is important to go through the mourning process before our children can get to the point where they can accept it and make changes to their “master plan”. For you, as her caretaker, this is the primary challenge – be patient and supportive as she goes through the denial and anger at the loss of self that she once knew. She will grow into a stronger, compassionate, and motivated person again and will find ways to accomplish those things that are most important to her. Unfortunately, that is the heavy burden parents have – to shoulder the weight until she is able to handle it herself.
Another thing, (benefit if you can call it that) is that this type of illness will tell you(and your daughter) who your friends really are – this is not something that can be “faked”. Over time, friendships have deepened with some, and been forever lost with others. For those lost – they were never true, and for those that supported us in the smallest of deeds, are cherished as a family.
Hang in there, take care of yourself as you are taking care of her – she will need you for a long time.
Best wishes always,
AnonymousMarch 16, 2007 at 12:54 pm
I just wanted to say to compactdisc that she just described me in this line “[/SIZE][FONT=Times New Roman][SIZE=3]she could no longer go to school (in college), lost her job (they were nice at first), lost many of her long-time friends (could not relate), and to add insult to injury, lost her independence, privacy, and respect (had lost the ability to control her own body, take care of herself, needing assistance for the smallest task). ” You described it perfect when comparing it to death, because it is a death of your old life. I was 24 with my onset of GBS and at times I think I’m still in denial that I have limits. Its also very true that you will found out who your true friends are. I was just amazed to read your words. Wow! [/SIZE]
AnonymousMarch 16, 2007 at 1:41 pm
Thanks I will try to be more understanding of Monica’s denial as hard as it is. And you are right she has lost out and probably knows it deep down. Its just hard being a mom and knowing a kiss on the sore spot isn’t going to make it better or go away. I try to remain strong by checking in here each day sometimes several times a day and letting the tears fall. I greatly appreciate all the wonderful people on the forum and your kind words and advise. Thanks to all and God Bless each and everyone of you and families.:D
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