Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Symptoms >> eye problems http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1323858455 Message started by judy on 12/13/11 at 22:27:35

Title: eye problems
Post by judy on 12/13/11 at 22:27:35

Hi everyone,
I just wanted to know if anyone has these problems with their eyes. Jarrod has a lot of trouble opening his eyes in the morning after waking. It takes a while for him to open them, he has to rub them a lot , you can see him trying to pry them open. Also he seems to be complaining lately of the sun glare on his eyes, he says it is too bright. He scrunches his eyes a lot and does say his vision is blurry sometimes.I have read a few stories of eye problems , nothing about having trouble opening them. Just very curious. Thanks Judy.

Title: Re: eye problems
Post by Lisa on 12/14/11 at 09:34:39

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

Lisa

Title: Re: eye problems
Post by still seeking on 12/15/11 at 09:42:34

Hi Judy,
Yes, Rylee too has eye issues. She doesn't have a problem opening them but she complains they are blurry and she is light sensitive. We are headed back to Cincinnati Children's Jan 5- Jan 12th. Although they diagnosed her with MCAD and put her on the regime of medications that follow, she continues to be sick. She will be seeing gastro, neurology, rhuemetology, allergy and immunology, and pain clinic. They also have her scheduled to do a brain MRI and an MRE. I don't know how in the world we will ever pay for all this. Anyway, we continue to homeschool Rylee as she is not well enough to attend school. I hope Jarrod is doing better overall! take care! Angie

Title: Re: eye problems
Post by judy on 12/16/11 at 23:02:27

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

Title: Re: eye problems
Post by judy on 12/16/11 at 23:04:46

Angie,
Sorry I spelt Rylee wrong.
Judy

Title: Re: eye problems
Post by Riverwn on 12/18/11 at 03:50:54

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

Title: Re: eye problems
Post by judy on 12/18/11 at 22:10:35

Thanks Ramona for your thoughts and prayers, it is very hard to watch your children suffer and cant do anything and extremely frustrating.
Judy

Title: Re: eye problems
Post by ruth on 12/19/11 at 04:00:00

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

Title: Re: eye problems
Post by judy on 12/19/11 at 21:05:32

Hi Ruth,
No I dont believe Jarrod has been checked, how is that done?
Jarrod is never well these days, he doesnt go to school these days, does distance education at home. We are coming up to Jarrods good period now so I hope things will improve a little.
His 10 day stints seem to have ended and replaced with being sick all the time , degree of fatigue all the time and endless list of symptoms that pop up all the time. The worst symptom we face these days is the fatigue and tummy pain. At the moment he has puffy swollen ankles.
How is Cameron doing? I think I read that you moved countries again, is that right?
Keep in touch
Judy

Title: Re: eye problems
Post by ruth on 12/20/11 at 08:03:19

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

Title: Re: eye problems
Post by judy on 12/20/11 at 21:58:54

Hi Ruth,
Thanks I will keep that test in mind next time, Jarrod's tryptase was 4.2, that was a while ago and it was the highest he has had. Even though it is a normal tryptase , there are so many things that are leading to systemic. The wait for a BMB is so frustrating, has Cam had a BMB?
I' m glad the heat has been better for him.
Keep in touch
Judy

Title: Re: eye problems
Post by ruth on 12/22/11 at 20:44:30

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.