Please help. 9 Year old crying at night with severe leg pain at night

    • Anonymous
      February 15, 2008 at 11:32 am

      I haven’t posted in a while. Our son Joey (9years old, Ivig for 4 years) has been doing good on his schedule treatment of Ivig. The doctor has been slowly weaning him off. We are at 6 week intervals. Went to the doctor in baltimore on monday and he said he is doing great and wants to make him last until 8 weeks.

      Well on wednesday we heard him crying in the middle of the night and he was still sleeping. We woke him up and he said his legs hurt so bad (tingles) it hurts all the way up his legs. We called the oncall doctor after not getting the pain to subside and he said to go ahead with his treatment and move it up one day. I took him Thursday for his 6 week treatment and pain was minimal, but he was crying again last night.

      I also found out that my dad spanked him on Wednesday afterschool. We are completely against spanking especially with a child who has nerve problems. My dad said he swatted him once but because he was being mean to his little sister. We are now putting Joey in an afterschool program and are mad at my folks for doing this cause now we don’t know what to think about his pain. We love my parents but I do not think they understand the severity of it all.

      We are at a loss. Is this a sign of him needing it sooner, of it healing, stress from the spanking, or something else.

      I guess what i am asking is this”is this severe leg pain usually before or after a treatment? Does the treatment heal it (make the pain go away)?

      Any help or suggestions would be great.

      I am trying to stay away from any additional meds besides tylenol and motrin so we can maybe figure out what else is going on.

      Joey’s Mom

    • February 15, 2008 at 12:44 pm

      Hi Joey’s mom,
      My son Kevin was ten when he got this and is now eleven. Kevin has pain in his ankles and wrists immediateley after ivig. We beleive it is because the nerves are healing, the inflamation (the immediate reaction) is put out by the ivig and the wrists and ankles now get the proper messages from the nerves. The only problem, is the muscles are still not strong enough.

      However, in your case, since the treatment schedule has been spread out and the pain occurs at the tail end, I would suspect it is a neuropathy pain caused by new demylienation. I guess I am saying, he needs the treatments sooner. When we were in a transitional phase of dx (gbs or cidp) we had a 6 month lapse of treatment and Kevin was experiencing the pain you speak of. Tingles, shocks, aching, inability to sleep. Once we reinstituted the ivig treatment, the pains of shocks and tingles subsided immediateley, but the acheness did linger for a couple of months. As I mentioned, he still has pain, but it is different after the ivig, like sprained ankles or wrists, not neuropathy.

      If Joey were my child, (as we did with Kevin) I would repeat a loading dose (that is all we do and Kevin is not really that bad compared to most) and continue them monthly. (Since Joey cannot make it the full life (42 days) )That is what we do, and Kevin has not been this strong since this nightmare started. It has been 16 months now.

      Just a thought, I really do think there is hope for our little ones to beat this as the immune system changes at puberty. The closer to normal we keep the antibody production and the farther away we keep the autoantibody amount, the best chance we have at retraining their immune systems at puberty. We can only do this w/high dose ivig. (loading doses) Good luck and best wishes, I really do know how you feel, and I would love to give you a hug. This is the hardest thing I have ever had to deal with, and it kills me every day, but it makes me stronger at the same time. If you ever want to talk, give me a call, I will pm you my #
      Dawn Kevies mom

    • Anonymous
      February 15, 2008 at 2:25 pm

      Hi Joey’s Mom, I’m a Joey’s Mom also(my Joey is 9yrs too). Could it be growing pains? My JoJo crys out in pain at night after he has stressful days, he doesn’t have cidp, but does have other autoimmune health issues. I understand what you are feeling, I’m sorry I don’t have any easy answers to help. Please know We are here for You. Joey is in My Thoughts and Prayers.

    • Anonymous
      February 15, 2008 at 3:16 pm

      Boy, do I know what you are talking about. Emily’s CIDP started out with night time hand & arm pains which eventually ended up including leg pains as well.

      Emily has been on IVIG for 2 years now & doing very well. She’s basically a normal kid who gets IVIG every 2 weeks. The last time we spaced out her treatments she had terrible back & legs pains, mostly at night, for about 2 weeks. Of course, we decided to space them out right when she started 1st grade & was going to school for the 1st time all day long. After a few weeks the pain went away so we are assuming it was from the new school routine.

      My suggestion would be to have him rest up for a few weeks. Limit his physical activities at home & at school as well. If the kids have recess have him stay inside for it (or maybe just 1 & let him out for the other). Maybe limit his gym activities too.

      I’ve noticed that certain things can trigger pains in Emily. If she’s starting to get sick she’ll get leg pains sometimes a week before the illness shows up. She’ll also have pains if she’s overly tired, been too active, or if the weather changes abruptly. It’s been extremely cold here in MI & the day before a new cold front comes in Emily will tell me she’s hurting.

      Tylenol never touched Emily’s pain so we give Motrin. If it’s bad pains at night & she’s having trouble sleeping I’ll give her 1 Benadryl to help relax her. I realize that giving her the Benadryl might not go over with some people but they’ve never had a kid crying in pain, absolutely exhausted with nothing helping them. Emily’s dr & home care nurse know about this & both have said that it’s actually a good idea to do sometimes.

      One other thought, sometimes Emily will get herself so worked up emotionally that she’ll start to have extreme pains. Maybe that happened to your son who was spanked. He could have gotten himself so worked up that his body tensed up & now he’s having the pains. We noticed that when Emily gets very scared (usually after having a medical test done) that she’ll complain more about pains.

      I wouldn’t automatically rush into getting another IVIG treatment. When your child can go so long between treatments & has been doing it for awhile, I think it’s best to wait & see what’s going to happen. If he starts to decline physically, meaning he’s having trouble walking, running, going up stairs, walking on his heals & tip toes, then definetly get him the IVIG.

      I believe in slowing spacing IVIG treatments. Instead of trying to go for 8 weeks why not try going 7 instead. Maybe do that for 2 months then push it to the 8 weeks, or even 7 1/2 weeks.

      I hate to even suggest this because I absolutely hate it when people suggest it to me, but maybe he’s having growing pains. I hate it because that’s what we explained Emily’s pains away as when all of this started. But kids do get growing pains & he is at the age when I would expect a child to have them.

      I don’t know if I’d ever be able to forgive someone for spanking my child. I’m not a spanker & it would absolutely kill me to know that someone did that to Emily. I always said that if she was ever spanked it would have to be me that did it & not anyone else…not even my husband. I hope that you can find some resolution with your father because he is your dad & you’ll only have 1. But he definetly needs a good telling off.

      Hope that helps,

    • Anonymous
      February 15, 2008 at 6:28 pm

      When I get the pain at night I find heat helps. Not sure what it does but it sooths me and I fall asleep faster.

      Make your own hot pack-If you instructions let me know. We made ours with rice put in microwave for a few minutes.

      Rhonda from Canada

    • Anonymous
      February 15, 2008 at 6:45 pm

      I have CIDP and also have bouts of leg and foot pain. It’s feels like sciatica and it’s usually after I have done too much physically – eg: walking, standing, housework etc, etc.
      I also get the pain in my face – which I hate and this is usually after doing too much as well – even though, I use my legs to walk – not my head!
      Even coming down with a cold can make me ache more. I find taking it easy for a few days helps settle things down – easier said than done with a 9 year old though!
      I hope he feels better soon 🙂
      Best wishes,

    • Anonymous
      February 15, 2008 at 7:54 pm

      Hi I wonder if a pain medication for nerve pain wouldn’t be something to try? There are different ones. Even just a low dose of Gabapentin if it is safe for children might work. Nerve pain is such a different pain that usually regular pain medication don’t touch it. I also lately started taking muscle relaxant to help with the bad muscle pains. I was told today from a DR that maybe the weather is causing some of my leg problems. So maybe you should write down when it happens so to keep track of when it happens. One woman I know says that her arthritis acts up because of the weather.

      I take Lyrica for my pains and lately Muscle Relaxant for the muscles


    • Anonymous
      February 15, 2008 at 10:52 pm

      Sounds like more than just a Charlie Horse or cramps but it might be an idea to have a blood test to see if he is getting the minerals and vitamins he needs. When you are depleted in a few like Potassium you might have severe cramps. Growing pains might be easy to follow up on with a growth spurt on the growth chart! I hope you find the bottom of his problem. Pain is not a fun thing no matter the reason. Stress can also create pain in some cases. Over doing it also. Just have him REST and start ruling out causes. Banannas, Potatoes and the dark green leafy veggies are good sourses of Potassium. Plus it is added to some drinks and cereals. Just a thought!