Emilys_mom
Your Replies
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September 17, 2012 at 4:01 am
I want to start this by saying I’m a very blunt person. What I am about to say is out of concern for you…
You need a new neurologist ASAP! To even suggest that your symptoms are psychological is well…crazy! I hate it when dr’s do that. If they can’t explain it & they can’t see it, then it must be in your head.
I always recommend Dr. Dyck out of Mayo in Minnesota. Are you able to get there? Other people who post on this site have seen him & I think everyone was pleased. Google him.
I have never heard of “freezing” as you are describing it. I would be concerned with the blank look on your face that your daughter witnessed. You need a dr that is going to look into this ASAP.
Kelly
September 15, 2012 at 7:33 pmDo you already have an appointment with a neurologist? If not, sometimes it can take MONTHS to get in to see a specialist. If that is the case with you then ask your PCP to call the neurologist to get you in sooner.
How long have you been experiencing these symptoms? They do seem to fit into GBS/CIDP.
You should expect to have a full blood panel run including toxicology (to make sure you haven’t been exposed to a poison) and an MRI of your brain & spine both with & without contrast. Have any of those tests been ordered yet?
Kelly
September 15, 2012 at 1:37 amWhen my daughter was first diagnosed with CIDP I spent quite a bit of time researching. When I didn’t understand the dr’s notes I would Google each & every word & then put it all together. So let’s break it down…
Poly means more than one
Neuritis means inflammation of the peripheral nerves or neuropathy
Etiology means the cause of a disease
EMG (electromyogram) is a test that measures the electrical activity of muscles when they are resting
NCV (nerve conduction velocity) is a test that measures how well & how fast the nerves can send electrical signals
It seems your dr is saying, you need to see a neurologist to have your nerves tested because he suspects you have inflammation in 1 or more of your limbs for no known cause (such has an injury).What symptoms are you experiencing?
Kelly
August 31, 2012 at 2:49 amMy daughter is 11 & has had CIDP since she was 4. I will send an email to you.
Kelly (also a couponer)
August 24, 2012 at 7:06 pmdhflower60 – I would suggest calling The Foundation & speaking with someone there directly. I do not think they monitor the forums anymore. They will probably never read your message – which I agree with 100%. There needs to be more info available to those with GBS/CIDP & their variants.
Kelly
August 19, 2012 at 3:53 amWhat about a sleep number bed? A friend of mine has one &, of course, I had to try it out. I immediately thought it would be good for people with CIDP. You can pick your comfort level by the day or by the hour.
I’m sorry to hear you have fatigue. Hopefully you will get some rest & the fatigue will ease up.
Emily just went 6 weeks between infusions…44 days to be exact. She seemed to do ok but had some leg pain. It’s hard to tell if it was growing pains though…she gained 2 lbs & grew 2 inches in 2 months & she’s still growing. Before long she’s going to be taller than I am.
Kelly
August 4, 2012 at 1:43 pmSorry I didn’t email you. The site was down for a few days. I will try to email you later today.
Real quick – my daughter had inflammation from her lower lumbar on down. The neuro said she “lit up like a Christmas tree” on the MRI. She also had cranial nerve inflammation – did your son have a brain MRI with contrast as well?
I can’t really help you with regards to PT. We never put Emily in it as she responded really quickly to the IVIG.
Kelly
August 4, 2012 at 1:37 pmWhat was your flow rate? Sometime it will help to slow your infusion down. I met a parent who has a child with immune deficiency. Her son get IVIG once a month & his infusion is run over a 24 hour period because of his reactions. Once they slowed it way down he responds much better. I’m not saying you will need a 24 hour infusion – but slowing it down may help some.
Also, did you drink a lot of water? Staying hydrated helps tremendously.
Kelly
July 29, 2012 at 11:12 pmCaveman – For some people, especially those that have symptoms for awhile, IVIG will take several loading dose before they can start to see a difference.
Don’t give up hope!
Kelly
July 29, 2012 at 2:07 amMy daughter was 4 years old when she was dx’s with CIDP. She’s 10 now & lives her life like a completely normal kid. She gets IVIG every 5-6 weeks. As far as constantly watching your son – yep…you will do that. You will worry for the rest of your life for every single ache & pain he has. BUT it gets easier to deal with. You will learn what his CIDP symptoms look like & you will be able to easily decipher between those & other normal issues.
Dawn (Kevin’s Mom) will be able to help you with regards to a 504 plan. I tried to get one for my daughter but was refused because she looks normal. I haven’t pushed the issue again but will if I have to.
As far as his treatment plan…I’m an advocate for IVIG. In my personal opinion, a good neurologist will tailor the IVIG treatment plan to your son. He may need weekly or bi-weekly infusions. Some dr’s are afraid of IVIG. Personally, I would be more worried about the steroids.
My daughter was taken off of IVIG for a few months about 1 year after she was dx’d. We had switched dr’s & the new dr was an advocate for steroids. My daughter got worse while taking them. She went from relapsing every 12 days to every 9. Some variants of CIDP do handle steroids well. We switched back to her original neuro & he prescribed IVIG again & she has been steadily improving since then.
It sounds like your son may have not had the proper dosing for IVIG. He should receive a 5 day loading dose to start with, which is 2 grams per kg of his weight. You figure out how much IVIG he should get by multiplying his weight by 2.2. You take that answer & divide it up by 5 & that is what he should get daily.
For example: My daughter Emily weighs 98 lbs.
98X2.2= 209
209/5= 41.8
Her IVIG would either be rounded down to 40 grams per infusion or rounded up to 45 grams. I would prefer to round up.He may need to have multiple loading doses before starting on a maintenance dose which is 1 gram per kg. His maintenance dose schedule should depend on how often he relapses. Each CIDP’er should have their own IVIG schedule tailored to them.
Research Dr. Dyck out of Mayo in Minnesota. I recommend his often as I agree with his IVIG dosing.
If you leave your email address I will contact you & perhaps we can talk on the phone. It really helps to speak with people & to know you aren’t alone.
It gets better…I promise.
Kelly
July 27, 2012 at 12:40 pmTim – For most people they get 2 grams per kg over the course of the whole infusion. My daughter received 4 grams per kg per infusion when she was 1st dx’d – she is certainly not the norm.
I’m really terrible at remembering how to figure out how much IVIG you should get. I think the formula would be:
100X2.2=220
220/5=44So your daily dosage (if getting a 5 day loading dose) should be 44 grams. Most dr’s would probably round that up to 45 grams. Your total loading dose for a 5 day period would be 220.
I’m going to then assume if you are on a maintenance dose it would be half of the loading dose (since a maintenance dose is generally 1 gram per kg), so you would then receive 110 grams. You would probably receive that 110 grams over the course of a month by breaking up the treatments depending how you respond.
If you receive IVIG every 2 weeks then you would get 55 grams at every infusion.
However, if you are doing well on your current treatment plan then that is FANTASTIC because it means you are getting less than a maintenance dose!
I hope that makes sense. Like I said, I’m not very good at the math.
Kelly
July 26, 2012 at 7:41 pmI’m very happy to hear she got a correct diagnosis & she is improving.
Are you near one of the GBS/CIDP Centers of Excellence? Or Mayo?
I have a few concerns…
IVIG is the 1st line treatment for CIDP. Usually a person with CIDP is given a 5 day loading dose of IVIG of 2 grams per kg. If your daughter only received 2 days then she did not get the correct dosage. (My daughter was also given only 2 days of IVIG when she was first dx’d. She got worse & ended having to take massive amounts of IVIG to get better)
Also, prednisone is a drug that should ONLY be used (on children especially) when IVIG alone does not work. Her sole source of treatment should NOT be prednisone. That is the old school way of treating CIDP – new research shows IVIG is tolerated by children MUCH better than prednisone.
Research Dr. Dyck from Mayo in Minnesota. His treatment protocol seems to be the most up to date & I agree 100% with it.
I wish we still had private messages so I could send you my phone number. It helps so much to be able to speak with other parents who have gone through this. If you leave me your email address I will get in touch with you.
Kelly
July 17, 2012 at 12:35 pmI have to disagree with GH…respectfully of course.
I Googled “autoimmune disease inherited” and got a link to Johns Hopkins Medical Institutions Autoimmune Disease Research website. Here is the link: http://autoimmune.pathology.jhmi.edu/faqs.cfm
This is what it has to say about autoimmune diseases being inherited:
“Clinical and epidemiologic evidence as well as data from experimental animals demonstrate that a tendency to develop autoimmune disease is inherited. This tendency may be large or small depending on the disease but, in general, close relatives are more likely to develop the same or a related autoimmune disease. A number or genes have been implicated in causing autoimmune disease, primarily genes related to the human major histocompatibility complex called HLA.”
Years ago I did research on this very subject because autoimmune diseases seem to be common in my family. My maternal Grandmother had diabetes, I have endometriosis, my cousin has epilepsy & my daughter has CIDP – all are autoimmune. After my daughter was dx’d with CIDP I found out an aunt of mine presented with similar symptoms. She did not have health insurance and the ER dx’d her with a peripheral neuropathy. The last time I spoke to her, 2 years ago, she still had not seen a dr for follow up & was not on any treatment but her symptoms sounded VERY much like either GBS or relapsing/remitting CIDP.
Hopefully someone from Florida will see this post & they can refer your aunt to a neuro in FL that is familiar with CIDP. Years ago there was an older person (can’t remember their name) who posted about their mother, in her 80’s, getting IVIG. So it can be done.
Kelly
July 14, 2012 at 12:52 pmThat is AWESOME! Congratulations!
You are a true inspiration to us all! It can be done!
Kelly
(And thanks for posting what the dr said about 75% relapsing by 6 months. Emily will be getting off IVIG in the next year & that is good info for me to keep in mind)July 7, 2012 at 4:29 amEmily doesn’t currently have a port. She’s getting IV’s now. She did have a Port A Cath, I believe. The port can be accessed immediately. The surgeon offered to leave it accessed after surgery so she could get a treatment the next day. Emily is allergic to Tegaderm (what they use to cover an accessed port) and he didn’t have any bandages she wasn’t allergic to – so she was accessed the very next day after surgery. She had her surgery on a Thursday, treatment on Friday & on Sunday she was well enough to go to the Renaissance Festival. She started her first day of kindergarten that Monday. Keep in mind she was 4 (about a week shy of 5).
I think you will have to meet with the cardiologist & having a vascular surgeon is probably a good decision – since you do have heart issues.
I really highly recommend getting a port. It just makes life so much easier.
Emily is doing well…thank you.
Kelly
