AnonymousJuly 24, 2006 at 12:32 pm
I posted a few weeks ago that Emi’s eye wasn’t working as well as before. Well today she can’t move it at all to the right.
Thanks to everyone that responded to me before. You all gave me some great info & I really appreciate it. DocDavid, I used the info that you gave me on the nerves affected & had a very good conversation with her eye dr.
We saw the pediatric opthamologist last week & he said that Emi’s vision is still 20/20 but her ocular movement had decreased. Well it’s worse today than it was last week. It’s been getting progressively worse over the last few weeks but the neurologist refuses to listen to me.
We’re seeing the neurologist tomorrow so I’m hoping that he will give a rx for a boost of IVIG 3x’s a week for 2 weeks.
It looks like Emi’s CIDP is relapsing every 6 weeks. I’m hoping that the neurologist will finally see this & have her get a boost of IVIG every 4-5 weeks to ward off the relapse. But honestly, he probably won’t see this pattern & just tell me that I’m wrong, which is what he normally does. I’ve pointed it out to him before.
I’m very frustrated & I just feel helpless. I can’t believe that it’s this hard to get help for my child. I don’t understand how I can see the relapse coming on but a trained medical professional cannot. When is this going to get easier?
I found a dr that knows something about CIDP and children but he closes his practice down during the summer. He’s also not accepting new patients but Emi’s pediatrician said that he will try to talk him into taking us on. We just have to wait until he comes back in, which should be in September.
Thanks for listening,
AnonymousJuly 24, 2006 at 7:21 pm
You’ve helped me so much, I wish I could help you. I have no answers for you except to travel to see another neurologist.
Dell’s neck is still not right. The dr. will do an MRI soon to see what’s going on with the neck. What if you did an MRI on the eye?
Let us know the outcome.
AnonymousJuly 25, 2006 at 11:02 am
Emi has an appointment today at 2pm with the neuro. I’m taking my calendar that I’ve written all of her IVIG dates on & her relapses. That way he can see the timeline. I’m also taking the nurses folder with the papers with Emi’s vitals listed on them. Last time we were there & I tried to tell him she was relapsing & needed more IVIG he wanted to explain the dangers of IVIG to me. I want to show him that Emi has remained stable during every infusion. And honestly, she’s at like 30 infusions now (or very close to it) and 2 more isn’t that big of a deal at this point.
Emi is actually doing a bit better today. She had an infusion yesterday so I’m concered that the dr won’t believe me about how bad she was.
Just keep your fingers & toes crossed that he’ll actually listen this time & we can get Emi back to normal again before it gets bad.
AnonymousJuly 25, 2006 at 11:04 am
Emi had 2 MRI’s back in December. They didn’t who any problems other than a little swelling which I’m told is normal with this.
Her eye dr is talking about doing surgery on her when she’s been stable & off of IVIG for 1 year to repair her eye. I hope we won’t have to get to that point. If the dr will listen to me I know we won’t have to because Emi’s eye was near perfect back in June before her last relapse.
I hope that you get some answers real soon with Dell. Any luck convincing the dr to up his IVIG to more frequent infusions?
AnonymousJuly 25, 2006 at 3:51 pm
Your doing great, I know it’s frustrating. Try and talk to the Neuro and convinvce him/her to maybe change her infusion schedule to every 2 weeks if it’s monthly now. I started having issues and my Neuro doubled my dose from 30g to 60g and I am like a new person. IVIG is expensive so they are hesistant to increase dosages etc or frequency sometimes. I think it is definitely worth a try to see if it helps before they resort to surgery on the eye. Good luck with everything and hang in there.
AnonymousJuly 25, 2006 at 8:34 pm
We saw the neuro & he agreed to do the IVIG 3x’s a week for 2 weeks to give her a boost. That worked back in June when she was relapsing. I also told him that every 4-5 weeks I think she needs a boost & he agreed to do that. He was really listening to me today. I think it was because he’s going overseas for 2 weeks & he wanted to make sure that she was all set for when he’s gone. I honestly don’t care WHY he decided to listen to me, I’m just very glad that he did.
The home care company is unable to do an extra infusion this week so we’re going to start next Monday. It’s ok because Emi is scheduled for an infusion on Thursday & will only have to wait 3 days to get the next one. I’m sure she will be fine.
I am SO relieved! I didn’t have to put up a fuss or anything.
Jerimy, Emi is getting IVIG 2 times a week currently. The neuro is trying to get it into remission. My theory is that the 2 times a week is maintaining her progress but every 4-6 weeks the CIDP starts to flare & that is what needs to be controlled. I really feel if we can get those flare ups under control then we have a very good chance of getting the CIDP to go into remission. If we stretch the doses out further than twice a week then Emi starts having problems with her eye. That is the problem area right now. I think that it’s just too weak & needs to get constant IVIG to maintain.
Thanks everyone for your support & encouragment!
AnonymousJuly 27, 2006 at 1:57 pm
I’m hoping everything will be fine with Emi. It’s very upsetting when things are not going well with your child. Dell is sleeping next to me right now. We are scheduled to have ALMOST all of his teeth capped in August. It’s not a CIDP problem, he just has bad luck, it was a problem when I was carrying him.
I want to have the MRI done on the neck before the IVIG schedule is changed from every 2 weeks. We don’t see ANY change in his neck after an infusion. I think something else is going on.
He’s talking so much more now. I’m not a doctor, but I believe that Dell stopped doing EVERYTHING when the CIDP was at it’s worst. I mean, growing, talking, etc. He is 6 months behind on his bone age study and that would make sense with the speech and growing. He’s grown 1-1/2 inches in 6 months. He’s still at the 5% on the chart, but I can handle that, as long as he’s growing. IVIG was started in November.
Keep us posted about Emily.
AnonymousJuly 31, 2006 at 4:55 pm
Are you aware of the patient advocacy arm through your health provider? There are also government agencies to assist with advocacy if these internal systems fail. If the system isn’t able to meet the health needs internal to the system, then there are sometimes provisions whereby you can have your daughter seen outside that system by a qualified specialist. Best wishes.:rolleyes:
AnonymousSeptember 12, 2006 at 3:58 am
Haven’t been on the site for several years. I have a 10 year old daughter with cidp. She was diagnosed at age 3 years old. She had one instance of eye problems, it was right before an infusion of IVIG. The ped. eye doctor thought it was fatigue of the eye muscles and said she was just due for her ivig. Once she got her ivig the double vision went away. This happened when she was 3 1/2 years old. She has never had any more eye problems.
I strongly feel that the parent has to follow their beliefs. For 2 years we saw different doctors and heard all kinds of diagnoses, lupus, ms, adhd…and all wrong. I pushed till I felt the doctors really were listening and getting the whole story. Just always remember that you are her parent and it is your job to advocate for her the best you can no matter who gets mad.
I have referred several families with kids to Dr. John T, Sladky at Emory Children’s Guillain Barre’ Clinic in Atlanta. He is on the medical advisory board
and is wonderful! He has spoken with families on the phone and reviewed records and given advise without a visit,
AnonymousSeptember 17, 2006 at 12:34 am
Kelly and those of you who have children with CIDP,
I just wanted you to know that my thoughts and prayers are with not only your children, but with you. I know what it is like for me to have this evil stuff, but I cannot imagine the grief and pain from having a little one with it.
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