New experiance

    • January 20, 2010 at 1:50 am

      Julie Ann had some difficulty breathing tonight for no reason. She stopped breathing 2 times in her Dads arms and he had to tell her to breath. she said she remembered thinking she should breath but didn’t need to. She also felt like she might die. Has anyone had this happen to them?

    • Anonymous
      January 20, 2010 at 3:34 am

      What a horrible feeling. I am so sorry for you and your little one. I have had a hard time breathing, but never stopped breathing or feeling that I didn’t need to breathe. Sounds like she was aware that she wasn’t breathing. Could she apnea? That makes you stopbreathing in your sleep. You really need to talk to her doctor first thing in the morning! About her feeling like she is going to die, that sounds like a panic attack. I have felt that before but it also came with rapid heart rate, vertigo and so on…… From your post, it almost sounds like it was serene. She was aware she wasn’t breathing, felt she didn’t need to breathe and felt as if she was going to die. Sounds like she was putting it all together in her head, in a completly relaxed dream state:
      You stop breathing, you die.
      I pray it was a bad dream cycle and hope that it is at worst sleep apnea. Please, please call her doctor and get his or her opinion. I have read many post and threads on breathing difficulties, but never one that gave me the chills like this one did. Please let me know what is said.
      You are in my thoughts.

    • January 20, 2010 at 7:53 am

      As far as we know there is no apnea and this occured when she was awake. Her feeling like she would die was in the middle of the whole eppisode. We have been at the hospital all night and should see a neuro soon. Thank you.

    • Anonymous
      January 20, 2010 at 10:41 am

      yes I have had that feeling that if I didn’t pay attention I would stop breathing, it’s very scary and I’m not totally sure what causes it though I believe it has to do with the nerves to my intercostal muscles and diaphragm being damaged and thus not working as well, however I notice it more when I am feeling sedated from antihistamines or IVIg treatment. I make a point now to not take a full dose of benedryl or zyrtec because I tend to stop breathing, or at least feel that way. I don’t really, because I have fallen asleep with that feeling that I could stop breathing and die in my sleep but so far I haven’t so I assume in my sleep my body’s self-preservation takes over and my breathing normalizes. There have been times during treatment though when I suddenly jerk and realize I haven’t been breathing for awhile. It’s no wonder my brain is fried… 😮

      I do make a point now to let people know that I can get oversedated and stop breathing so they take caution if/when I need anesthesia or painkillers.

    • January 20, 2010 at 7:05 pm

      kevie has been plagued by this on and off for 3 years, since onset. In the begining, it was obviously due to cidp, he was in icu for 10 days because of the breathing. When we spoke on the phone, I think I remember that maybe she is not getting enough ivig. I could be confusing her with another mom I spoke with this week too, sorry. While in the hosp. I am sure they will run the normal blood gas, as well as a pulmonary function test.

      After cidp was in control, I believe kevin’s attacks were anxiety and currently I believe the are anxiety AND leaky gut, as shortness of breath, insomnia, anxiety, sinus issues and a plethera of other symptoms happen to fit leaky gut. Are you seeing a different neuro while in the hospital? Can they do a comparison ncv/emg from her last to see if things are the same or worse? What about the pp we talked about? Do you think they would be open to it?
      Keep the faith!
      Dawn Kevies mom

    • January 20, 2010 at 7:10 pm

      I thought of something else,
      Did they raise the dosage of oral benadryl? Being that she was allergic to the iv push, maybe she is allergic to the oral and this is a reaction? Could there be a correlation? Was the time of the episodes any where near the infussion time, keeping in mind that perhaps it is even the ivig causing the shortness of breath, as it is a side affect. I do know that imuron is NOT studied in children, is it possible that her imuron could cause such a reaction? Maybe all of these possibilities could be more ammo to ask for pp.