My daughter who is 16, was diagnosed with ITP last August.
She's been having nosebleeds since she was about 2 years old. I also had a lot of nosebleeds as a child so I just thought it was a hereditary thing. At last year's annual check-up, her pediatrician sent her to an ENT and to a hematologist, just to rule anything out. The ENT cauterized one nostril, which he said had 4 big juicy vessels on the surface, which were causing her nosebleeds. That was last July. Only 1 small 2 minute nosebleed since. August was her appointment with the hematology clinic at our Children's Hospital. Blood tests confirmed very low platelets, and once anything more sinister was ruled out, a diagnosis of ITP was delivered.
The odd thing is, despite her low platelet counts, she is pretty much asymptomatic, other than occasional bruising. No petichiae, no gum bleeding ever, hardly any nosebleeds in the last year, normal periods, no prolonged bleeding, no fatigue, great appetite, great mood, no depression. You get the picture. With the hematologist's consent, we've pretty much taken and wait-and-see approach, that is, until this past Monday when her count was at 8. We decided to treat with ivig after having previously treated with prednisone. The prednisone acted rapidly but the effects were short-lived: about a month and she hated the side-effects: bloating, moon-face, ravenous appetite, acne on her face, chest and back and the growth of hair on her upper lip. Ivig went well yesterday until last night when a bad headache began. She had the worst headache of her life, a sore neck and nausea and all she could take was Extra-Strength Tylenol, which barely took the edge off. There was no pain management plan prior to the ivig despite the fact that bad headaches are a common side-effect. This frustrated me to no end. I asked the doctor and she told me to give Tylenol in the event of a headache. Luckily, after sleeping for most of the day today, she is finally turning the corner. Her head still aches but a lot less intensely. The sore neck is almost gone and her light sensitivity is much better. She even had pizza for dinner and watched some tv.
Of course now, she is vowing never to have ivig again. Any tips on preventing or treating the headaches with something more effective than Tylenol? She drank a lot during the procedure, which lasted about 5 hours total and she drank water and tea today. I don't know at what rate the infusion was given, but the nurse told me that they deliver it slowly, especially the first time.
I'm really frustrated and my daughter is at her wit's end with weekly trips to the hospital to have bloods done and to see the hematologist.
We recently saw our naturopath who suggested 6000 IU of Vitamin D daily. Of course, the hematologist said that it was much too high a dose and to lower it to 800-1000 IU. Have any of you seen any improvement with Vitamin D, which is supposed to be great for auto-immune diseases?
Thank for your bearing with me through my ramblings.
Looking forward to hearing from you.
I'm so sorry your daughter is going through this. I hope she gets better. There are several things you can do to prevent headaches. First off keep a headache diary, this will help figure out some of your daughter's headache triggers and hopefully stay away from them. I'm surprised your doctor didn't prescribe a better headache relief. Cause I get horrible headaches too & sometimes even hydro-condone doesn't even put a dent in it. Some tricks that help me when I get a headache are taking long showers, sticking my feet in cold water, cold cloth on the head. And if any of that doesn't help then going to bed or taking nap is the only other option. I tired vitamin d i was taking 10,000 IU of it but my platelets were still going down. There are still other options besides prednisone & IVIG. There's promacta, rituxan, splenectomy, and other options.
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