Emilys_mom
Your Replies
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June 9, 2012 at 11:59 am
Some people have reported twitching & other odd sensations while their nerves are being repaired.
Kelly
June 9, 2012 at 11:57 amAnother test your dr should order is a spinal tap to check your spinal fluid protein levels. He should also order an MRI with & without contrast of your spine – might as well get it while you are having your brain MRI. Did he order a heavy metal blood screen?
Remember – if you are not comfortable with your dr, it is certainly acceptable to find another one.
Kelly
June 8, 2012 at 12:00 pmYes, Emily had pain behind her eye. It’s a sign of inflammation. Her eyes would also get dry. You really should see an eye dr too! She did have swallowing issues & GI issues & bladder control issues.
You need to remember that your dr works for you! Your insurance (that you work your butt off to have) pays him. That means you need to be able to say “this is what I think”, or “hey…can we maybe try this?”, or at the very least “I haven’t been feeling great”.
You need to take control of your health care. You have to be your own advocate & if you aren’t doing well…you need to speak up.
If this was one of your kids what would you do? You would fight tooth & nail to get them the treatments they need. You need to apply that to yourself because your health affects your kids.
Kelly
June 8, 2012 at 12:55 amWe all know Emily is an exception – certainly NOT the rule. When she had her 1st relapse (when her dx was changed from GBS to CIDP) her dr ordered a 5 day loading dose. On the 5th day, she was discharged from the hospital & set up with home health care. The dr ordered her to get IVIG 3 times a week for 2 weeks (at 4 grams per kg PER infusion), 2 times a week for 2 weeks & then 1 time a week for 2 weeks. She relapsed (her eye started turning in towards her nose again – it’s always been her eye that goes first) during the 2nd week of every 2 weeks.
At that point, we realized she needed IVIG 2 times a week to maintain. So we started over again with another 5 day loading dose of 4 grams per kg & then started the 2 days of IVIG per week.
She was 4 at the time & I’ve read that kids can handle a higher dosage of IVIG at each infusion than adults can handle. I believe, with every ounce of my being, if we didn’t treat her as aggressively as we did, she would not be the “normal” kid she is today. I believe she would have been left with a level of dysfunction that I’m not comfortable with.
That being said, since I have seen what IVIG can do in my own child – I personally do not believe that any level of dysfunction is acceptable. I believe one should ALWAYS strive to be as close to “normal” as possible. You should NEVER give up fighting to be able to live your life to the fullest.
Kelly (I would write more but Emily & I have to do a quick clean up of the house & she started 5 minutes ago & is giving me the stinky eye)
June 7, 2012 at 12:18 pmIt could just be the billing code your dr’s office is using.
Kelly
June 5, 2012 at 2:49 pmWhenever Emily would have an exacerbation her dr would order a 5 day loading dose so she could get back on track.
Kelly
June 5, 2012 at 2:47 pmThe normal protocol is to have a lumbar puncture, MRI with & without contrast of the brain & spine, and EMG – along with a myriad of blood tests.
People here have reported to have normal EMG’s & normal spinal taps.
My daughter had a low positive ANA but that was after nearly a year on IVIG – the thought is that the IVIG caused the false positive.
I really hope you get some answers soon. I know it’s not easy to know something is wrong but not know what it is.
Kelly
May 30, 2012 at 2:58 amChettri – You need to find a new dr ASAP. The key to treating CIDP is to catch it before symptoms show up. That way healing can happen. Every single time your son relapses more damage is done. He is not being allowed to heal.
IVIG has a full life of 42 days. If you are waiting 3 months between treatments his body has already burned through that IVIG.
I believe there is a Center of Excellence (a hospital the GBS/CIDP Foundation recognizes as a facility that can properly treat GBS/CIDP) in Texas. You need to contact the foundation ASAP to get that info & to get your son into another dr.
Kelly
May 29, 2012 at 12:49 amI hate to say so little when you wrote so much…but the best advice I can give you is to find a new dr ASAP.
MANY people have been in your very same position with the dr not listening to them. They go on to find wonderful dr’s who give them answers & treatment.
A dr that I often refer people to is Dr. Dyck out of Mayo clinic in Minnesota. My daughter has never seen him but other people rave about him.
Kelly
May 23, 2012 at 6:00 amHi there. I’m sorry you are dealing with this. My daughter was 4 when she was dx’d with GBS & then later CIDP. I know how stressful it is.
It sounds like your son is experiencing foot drop. My daughter had it too. She was unable to put her heals down & walked on her tip toes. She was not able to walk up stairs & her running was very slow. She woke up one morning & couldn’t even lift her arms enough to feed herself yogurt.
The pain when being touched sounds like GBS. Imagine what it feels like when your foot & leg fall asleep & you try to walk on them. That’s probably what most or all of his body is feeling like. My daughter described it as having “strawberries & nuts” in her body. She also experienced the extreme fatigue.
I don’t mean to scare you – but your pediatrician is not equipped to deal with a case of possible GBS. Your son needs to be admitted into the hospital ASAP – like Wednesday morning. Getting a diagnosis will probably take 24-48 hours once he is admitted.
Your son not only needs a spinal tap but he also needs an MRI with & without contrast of his brain, neck & spine. He also needs an EMG. He needs blood work checking for a multitude of things, such as lymes, chemical poisoning, etc. When my daughter was 1st admitted into the hospital they took 14 tubes of blood & checked her for every thing under the sun.
Now…I know how scary all of that sounds. Trust me…I was in that same position. But it is the VERY BEST thing you can do for him. The earlier the treatment the better off he will be.
Your son will probably be sedated for the spinal tap & MRI. He can’t be for the EMG.
If he does have GBS then he should be given a 5 day loading dose of IVIG. He will be hospitalized for that treatment. If it is GBS, the hospital should also get him into physical therapy.
I know all of this seems surreal – I know it did for me, but just remember the faster you a get a firm diagnosis, the faster a treatment can start.
Good luck & let us know how he is doing.
KellyMay 21, 2012 at 5:52 pmHave your dr’s office work all of that out for you. Your dr will need to write a rx for SubQ – they should also be able to deal with the insurance company.
Kelly
May 18, 2012 at 4:26 amWhile it’s not ideal I do know some people who have no choice but to do long term steroid treatment. I know a young girl, with a disease called JDM, who has received IV steroids for 10 years.
I understand why you would be worried about taking a sleep aid. I hope your body adjusts & you can get some sleep soon.
And it’s FANTASTIC you were able to hit some golf balls & going up the stairs like that is great too!
Kelly
May 17, 2012 at 11:39 amThanks ladies!
I hope you are doing well!
May 17, 2012 at 11:37 amTjay – Is there any reason why you are not on any treatment for your CIDP?
Kelly
May 17, 2012 at 11:37 amHey Dick – Have you considered taking Melatonin to help with your insomnia? I hear it works pretty well.
When Emily was on the ‘roids I was told they make your body crave salty foods. It seemed very true for Emily. And she was constantly starving. She was 5 years old & gained 11 lbs in 2 months.
I’m sorry to hear getting the IVIG didn’t work out for you. I think it’s terrible when someone can’t get the medication they need due to cost.
I think it is great you want to share your journey. I’m sure it will benefit others.
Kelly
