update on Erika

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update on Erika

Post by brmorris »

Hi there! It's been a while since being on and a crazy while, it's been. Between our twins turning 1, decorating for Christmas and the ever saga with Erika's eyes... crazy seems normal :lol: Oh well... 3 weeks ago, Erika was wondering if the iritis was flaring up, so we went in, but unfortunately, Dr. Heston was not available, so we saw another dr. in his office. Since it was quiet and the pressures were a little up (18 and 24- which he said was too high), and after talking about us looking into getting her onto non-steroidal ani-inflammatory meds, he suggested Voltaren. and... yes, Mike, you were right- they did not help keep the iritis in check. Dr. Heston was back the next week (almost 2 weeks ago now) and I wanted to see him, to keep him up to date, as well as check her eyes. Unfortunately, she was 3+ in her right eye and 2+ in her left eye (but the pressures were good, at 11). So, we were back on the pred forte every 2 hours during the day and maxidex at night. Erika was quite upset, since we had it under control before the Voltaren at 2 times a day. Anyhow... we just saw Dr. Heston again yesterday and fortunately both her eyes are 1+ (pressures at 14 and 16) so we are tapering it back AGAIN. We are scheduled to see Dr. Heston in 2 weeks again.

We have been trying to get in with Dr. Ellsworth- the rhematologist at the Children's hospital... unfortunately, with the whole H1N1 "thing" going on, she isn't seeing anyone new, or doing any clinics. Dr. Heston has been trying to get a hold of her. His assistant got a hold of her originally and because she isn't seeing anyone, she told her that Dr. Heston should just put Erika on Methatrexate until she can see her. I wasn't happy with that and neither was he. I really would like to get her in. Even though all the tests have come back negative or normal, she has constant aches and pains and they are definitely getting worse! There are some days that her feet/ankles hurt so bad, she can hardly stand up. It seems better once she's moving- so very much like arthritis to me! It used to be once or twice a week that she would complain of something hurting, but now it's pretty much daily with moderate to severe instead of nothing.

I'm concerned for her. I don't like it that she hurts all the time. I've tried encouraging her to try the wii fit- like the yoga. I think that would help her. I bet swimming would be good too. I used to swim a lot and would take her with me sometimes- maybe that would help too!? She has been getting a lot more self conscious about taking the drops too, which we've never dealt with before. Thankfully, we homeschool, so most days, it's not bad, but she is in classes once a week and has to do them there and it's the first time that we had an argument over having to do them in public.

Any suggestions? Thanks!!
Rachelle Morris
Mike Bartolatz
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Joined: Fri Feb 06, 2004 9:58 pm

Re: update on Erika

Post by Mike Bartolatz »

do you have a pediatrician for your daughter that could check her for Fibromyalgia? there are 18 tenderoints on the body and if 11 of them have pain with about 4 pounds of force applied to them, then it is fibromyalgia. with autoimmune diseases the antibody tests don't necessarily show up for years and by then the child has gone through one hell of allot of pain un necessarily. off hand I can't recall if Erika has intermediate uveitis or if it is anterior uveitis/iritis. if it's inflammation in the vitreous without cells in the anterior chamber, the steroid eyedrops won't work. oral or injections have to be used.

Methotrexate would be the first DMARD drug tried and it might be time to start with the recurrent nature of this beast.

Wish you the best,
Mike Bartolatz
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