Ketotifen eye drops are what you should get, they help  A LOT!!!  


Lisa

Thanks girls for your comments and Angie I'm so sorry to hear about Rylie.
                    Judy

This disease definitely causes problems with the eyes IF your type of mast cell disease affects it. I used to have 20/20 vision just 10 years ago--and I thought my eyesight changing was from age.  I cant see much reading, I use very strong eyeglasses and my peripheril (?) vision is getting worse--it wont be long until I have to stop driving.

Ive had very thorough testing of my eyes and the results said I have excellent eyesight--which I laughed at. My eye DR also said she found mast cells in both eyes.. one with a cluster of them the other eye has single cells. Im not surprised, I had a yellowish small growth there for years and the other eye DRs never knew what it was... I guess it was a masto tumor that dissapeared when the disease went active. weird. But then again this whole disease is weird.

Im on Pataday eye drops and I dont see it helping me (ha I made a pun!!).. but then again this might be much worse without those eye drops.. Im going to use the ketotifen drops and i feel it will help more.

Im so sorry to hear the children are affected. It doesnt seem fair  You Mothers are angels for your care and love and I sincerely hope you find more answers and less pain for those beautiful children. I try to remember the children twice as much in my prayers

sending love and hugs
Ramona

Hi Judy, how has Jarrod been lately? Any relief with summer? I was thinking about him as I read an article about vit D and the theory that there is a connection with deficiency and immune system disorders. Has Jarrod been checked for vit D levels? We have just found that Cameron has a severe deficiency. I don't think it answers all the questions regarding his health, and even with high dose supplements he is not feeling any different yet, but it ay take a while to get his levels up. Just curious.

Ruth

Yes, we are back in Belgium, after a month in Australia in between countries. Cameron seems to do a little better here with a cooler climate. Vit D is checked with a blood test. I was also deficient a while back, not as low as Cam's levels though. I noticed a huge improvement in fatigue and joint pain with high dose supplements. Sorry to hear that Jarrod is out of school and not doing so well. Did you ever get his tryptase tested?

Ruth

Cameron's baseline tryptase was 4.3. He hasn't had any other tests like histamine or prostaglandins, I would really love to know what these would show but haven't yet found a doctor willing to test them. I'm working on it though. He hasn't had a BMB and I'm not sure that would be indicated without a higher tryptase. He is better generally, but still a long way from what I think is well and healthy. I'm hoping the vit D might also relieve some of his fatigue, but it doesn't seem to be making a difference yet. I hope things improve for Jarrod over the  summer.