update on Erika
So today we met with our current opthamologist to have Erika's eyes checked. Both eyes are finally quiet again! The pressure is normal and both eyes are totally clear of cells! PTL!!
I talked to him about getting more information and unfortunately this wasn't received so well. I told him about what I've been reading and all the info. I've been getting and he said that there isn't any reason for me to be concerned or see anyone else. He said that he has seen this many times- kids with uveitis and it goes along just like this without any reason. We had blood tests which all came back negative and normal and he even had her go for a chest x-ray which also came back normal. He said that this just happens like this sometimes.
I told him that my concern was the steroid drops and that this time, it has lasted so long- 5+ months, unlike the last 2 times which cleared up the first round of drops. He said that this is normal. I told him that we were recommended to see Dr. Heston and he said that we didn't need to because he wasn't a specialist and was an opthamologist just like him. I told him that he had dealt with another ped.uveitis case along with Dr.Foster (and even told him a few of Dr.Fosters credits) ... however, he just wasn't very receptive. He gave us another referral to a ped. opthamologist whom he actually trained under and said that he has dealt with ped. uveitis cases before- his name is Dr.Drummond- here in Edmonton.
I was able, however, to get copies of her file. I took one for me, one for our pediatrician and one for Dr.Heston. I have to say- now I am a little confused as to if we really need to keep digging, although deep down, I feel like I do. He also said that we don't need to see a rheumatologist because all of her tests have been done and have come back negative and normal.
Even with all this, I'm still sticking with our appt. with Dr. Heston this coming Wed.. Any thoughts?
Oh boy, yes I have thoughts. That kind of mentality is not someone you want on your team. Uveitis that comes and goes is because it is dealt with a bandaid (steroids), and bandaids work for awhile, until you discontinue them. Steroids do nothing to train the immune system how to not attack the eyes. Steroids have their own side effects as well. I am not knocking steroids, sometimes they are needed. I am knocking doctors who treat with steroids like it is no big deal, without any effort looking into a steroid sparring strategy that will benefit your child.
I've fired way too many doctors in the past because of this attitude. I'm glad you are keeping your appointment with Dr. Heston. Find a team that is on the same page as yourself with fighting uveitis, and never settle, because the battle can be awful. It can be put to rest, though.
Re: update on Erika
I echo Renee's comments. DON"T go to the pediatric opthalmolgoist recommended by your current opthalmologist.
he only knows steroids or the doctor you now have would understand the need for a 'steroid sparing' approach to treatment.
they always say, 'we can 'fix' the cataracts' but that means surgery and it can become complicated with extremely bad inflammation that can quickly damage a childs eyes PERMANENTLY. you WILL most likely have to use steriods from time to time until a 'formula' can be found to stop the uveitis permanently as ocurred with Alexa, Renee's daughter. they can also 'fix' glaucoma but the eye is damgaged permanently and they can only do a goniotomy or implant a valve to bleed of the high pressures.
that isn't 'fixing' any thing but THEIR mistakes.
Re: update on Erika
Well said Renee and Mike!!! This type of personality scares me! Run and find someone else.
Good luck! I'll be thinking about you both. I know how stressfull and frustrating it is when you can't get the uveitis under control and you aren't comfortable with the doctor.
Re: update on Erika
It's good to have this support, because I was starting to think after this appt. that maybe I'm making more of it than it really is- because now it is quiet again!
I don't have any intentions of seeing the ped.opthamologist, but didn't want to ruffle feathers more than I already had and wanted him to work with me on getting copies of the file, so didn't say anything. I just told him that I wanted a copy for myself to keep our journal (which he said I didn't need to) and to give to Erika's pediatrician.
I'm quite excited to see Dr. Heston on Wed. and see where we go from here. Is there much he can even do now that the uveitis is quiet?
Re: update on Erika
yes,
you have doctor Heston to be able to set up a STEROID SPARING approach to treatment should this come back. whether that is an oral NSAID or other drug depends on what happens. you will be able to call him and get an appointment right away as well as he will then be your specailist.
I pray the uveitis NEVER returns for your child. but it may return at any time as her immune system is too young to have this just 'burn out' at this time.
Doctor heston also knows his limitations and will get in contact with others if needed to include the RHEUAMTOLOGIST if needed down the road.
Even though it is quiet, Erika is still on pred 2 times a day and maxidex at night. Our current opthamologist said that this would be long term, not sure what he meant exactly by that except months for sure. So, I'm really glad that we can still get in with Dr. Heston and hopefully get some answers.
Re: update on Erika
Rachelle,
the goal is 'off all steroids without inflammation.' not two drops a day and maxidex at night. that is setting her up for cataracts and maybe pressure problems. a STEROID SPARING approach is when one uses the steroids to STOP inflammation, adds something to get to remission without inflammation or the need for steroids of any type.
it can take several years to get to an off all steroids without inflammation. please turn all of this over to DR Heston or she will be on steroids forever.
I got iritis in my teens, then pars planitis developed in my twenties. it took me to 20/40 or worse in both eyes for many years with intermittent bouts of pars planitis and cataracts, glaucoma, CME, epiretinal membranes mixed with occasional bouts of optic neuritis. now just optic migranes from time to time. but my vision is permanently damaged. I still can't go outside without and have the sun in my face and be able to see without wraparound sunglasses on and a hat to sheild my face. and I have to look DOWN, not at people otherwise I can't see much. (edited by MSB)
I can't drive at night because of this.
we saw Dr. Heston!
So, yesterday, we got to see Dr. Heston! It was refreshing to not feel like I was crazy or being too concerned with my child's health! He was amazing! I mentioned Lori and Dr. Foster and he knew immediately who I was talking about. He also agreed with me about wanting to use steroid sparing med.s which I was glad to hear. Of course, he said, that they too have side effects. We were able to go through Erika's history and he right away recommended that we see Dr. Ellsworthy- a ped. rhematologist, who I believe, is the same one that Lori saw.
He has Erika going down to the steroids 2 times a day instead of 3. My only concern is that as of last Fri., there weren't any cells in her eyes and we were on drops 3 times a day, and Wed. he said that he saw a couple in her right eye, but now he is recommending we go down to 2 times a day and he said that he would see Erika again in 6 weeks unless something changes. The only thing is- we haven't seen any indications of the iritis the last 6 months! He said that he isn't worried and that it should be okay. I don't want to go back to our previous opthamologist- I was just going to cancel our appt.s there, but should I be getting her checked before the 6 weeks? I'm not sure when we will get in with Dr. Ellsworthy. He just said that if we had not heard anything within 2 weeks, to give him a call.
Thankfully, our journey is continuing, now with a lot more hope!
I hope it does stay away, but the reality is that it may not once the steroids are tapered. That is why the immunmodulator meds are beneficial. You can't stay on steroids alone without irreversable damage being done. Yes, there can be side effects of any kind of medication but that is why you have labs done every 4 - 6 weeks once you start taking them. Finding the right dose, and the right med is tricky. The ultimate goal of being able to stop taking meds after two years of being in medicated remission (without any type of steroid being used drop or otherwise) is worth the goal to reach.
Six weeks should be just fine for a checkup unless your child starts to complain of blury vision, photophobia (light bothering the eyes) or pain. We were on the every 6 week check for years, unless my daughter had an issue that needed to be looked at sooner. I'm so glad you got to see Dr. Heston. Just having a team in line that is on the same page, a proactive approach to fighting uveitis, not a wait and deal with it with endless drops and pay for the fallout later kind of BS.
Re: we saw Dr. Heston!
Renee',
excellent response as usual!
Rachel, if you can tolerate the hassel of the drive to Edmont, stick with Dr Heston and the suggested Pediatric opthalmologist that HE recommends to become involved.
getting the 'right' team together is important as these two doctors can work together with your DAUGHTER's best interests without Ego's getting in the way.
a couple of cells is 'quiet'. one has to have 'ten' cells visible within a measured area to become concerned.
one has to try to taper off the steroids to see the reaction within the eye and then if the eye has renewed +1 cells, then the steroid sparing treatment begins along with steroids to stop the inflammation. then the steroids are SLOWLY tapered to see if meds are at the right doseage. this can take some time to achieve as one doesn't want to use any more of the drugs than absolutely needed to help minimize side effects. DR Heston has to 'challenge' the immune system to see what happens as he has to get her 'off all steroids without inflammaton'.
try to relax knowing that even if she does 'flare up' that Dr Heston knows how to approach this for her.
Thanks again!! and- we actually live right in Edmonton, so there isn't any hassle! Dr.Heston's office is A LOT closer to where we live too, compared to the other opthamologist, so we are very blessed!
My concern with waiting the 6 weeks unless something happens, is that Erika didn't get any symptoms this last round, even when it is full blown. We only found out it was full blown because it was a routine check up. We have been seeing the other opthamologist every 1 to 2 weeks and in that time, her eyes have gone from quiet to full blown when we've tapered, and now we are to wait 6 weeks... but- I guess we will just have to wait and see- and definitely pray!
Hopefully we can get in with the ped. rhematologist sooner than later! I'm also starting to keep a journal like was recommended. I know that she was tested for ped.arthritis, but it came back negative. We had told the other opth. that she has constant aches and pains, but he said that the test was neg. and that was that. When I told Dr. Heston, he said that we definitely need to get it checked out! I'm really thankful for that because at 9 years old, I don't want her having to live with pain all the time! Although- none of us want to and especially not want our kids too!
Well, here's to quiet eyes... and I can't thank you all enough for your support! You really have been an amazing blessing in our lives!
Re: we saw Dr. Heston!
Aches and pains in kids can sometimes be related to Fibromyalgia, you might want to get her doctors to do the trigger point test on her. 11 of 18 trigger points on her body would need to be found. they are symetrical on all over her body. usually knots in muscles.
did DR Heston find uveitis present in the vitreous, cells and 'flare'( protein shed by cells that causes a haze in the vitreous humor, the jelly like substance that fills the eye) or exudate along the pars plana?
if the pars plana has exudate, one can have no symptoms. such as red eye or photophobia. if the posterior retina becomes inflammed, it too can have no red eye present.
if she sees allot more cells or if you notice her getting closer to her reading or TV to be able to see, these are clues or if it takes her longer to do her homework.
ask her if she sees flashing lights (vitreous tugging on the retina) looking through fanblades or rainbows around lights (elevated intra ocular pressure). if she starts seeing starburst like effect around Lights at night, it can the beginning of catarcts. any pain is not normal so that would indicate a need for immediate consultation with the opthalmologist. next time you see the opthalmologist you might ask that the pars plana be closely examined to see if there is exudate. it is very difficult to see the pars plana directly behind the iris requiring a depressed scleral exam. the doctor presses in on the white part of the eye just next to the iris so that he can look at it indirectly with a hand held prism.
usually six week interval between appointments is appropriate. hopefully you will get the pediatric opthalmologist on your team quickly. Is Dr Heston helping to get the appointment? sometimes doctors can speed up the process dramatically.
Now that I know you are IN Edmonton, I am glad that Dr Heston is now your guiding opthalmolgist. this makes thing SOOOOOOOOOOO much easier and you never have consult with the former opthalmologist again.
Re: we saw Dr. Heston!
I'm not sure if Dr. Heston found uveitis present in the vitreous. I know he looked pretty carefully at her eyes and did a few different tests, but didn't say anything different than what we already knew. I will make a note of your questions, Mike, and ask next time! I will definitely be keeping a close eye on her and asking her regular questions! Yes, Dr. Heston is sending a letter to Dr. Ellsworthy to get Erika in with her, so I am also hoping that this helps to get her in sooner!
We see Erika's regular pediatrician this next week because she wanted to be brought up to date on what was happening and be involved. I requested Dr. Heston send a copy of his notes/letters to her office and I will be taking in any and all notes I have from our previous optho. I will ask her about the fibromyalgia and the trigger point test.
Re: we saw Dr. Heston!
Fibro isn't linked to uveitis but many of us seem to have it myself included. it can be very painful. care has to be done in diagnosing it as it can mimick other connective tissue disease processes.
it can be found in children and like adults it's onset is often after a traumatic episode. things like a car accident for example. it is a REAL syndrome with new evidence supporting it's diagnosis (you can read about it in the LEARNING ABOUT OCULAR INFLAMMATORY disease forum at this site. click on HOME PAGE at the top of this page to be redirected to our list of Forums.
It sounds like things are finally coming together for you regarding getting a team set up to care for your daughter.
Please try to relax a bit.
The Rheumatologist comes into play when Erika gets put on certain medications, such as Methotrexate. Because these meds are technically arthritis meds, it falls in their expertise to prescribe the proper dosage and monitor the possibility of side effects. This is the case whether or not arthritis is present.
I found I had to provide communication between the doctor prescribing the meds(the Rheumy) and the doctor monitoring the results (the Uveitis man). This was a little unnerving because meds were changed (or not) depending on what I relayed from appointments sometimes weeks earlier. You can demand that they talk to each other but they probably won't unless they play golf together. Just write everything down yourself, and be prepared to relay opinions.
You can usually shorten that 6 week interval by calling with a need if you feel a reason to be concerned. Increased floaters, black blobs in her vision, a change in her vision, etc... would all be reasons to call. Make sure that she knows to tell you when anything changes because you won't know otherwise.
Congrats on the progress you and Erika have made so far!
Donna
Great that Dr. Heston was his usual charming self. He has been a remarkable resource and truly a great dcotor. Unfortunately we only see him every 6-9 months
his 6 week recommendation is normal as he would be waiting to get the rheumatologist on board. We never used a pediatric othalmologist as Mike was 13 when we started, and after we "fired" the original opthalmologist we only saw Dr. H. Well, let me correct myself, we did see a retinal specialist as Mike had pan uveitis, but it was Dr. Heston who was the "eyes" part of the team.
Donna outlined exactly what we did with the rheumy and the eye doc. You are the "holder" of the info, so always write down what each doc does. I am sure tnat they write formally to easch other, but most times they just looked at me for the updates.
If you'd like to meet up for coffee, just let me know as I am sure that I am missing stuff as I cannot be online as much as I used to. new job
Re: we saw Dr. Heston!
I would love to meet! I'm not sure of your schedule, but pretty much, the only nights that are out for me are Thursdays. Feel free to send me a private message at brmorris@shaw.ca
It would be great to have someone, in person, to talk to and ask questions to- especially when you have been through it!
you are now in great hands with the Best Mentor you could ever get. I had the pleasure of meeting her when she and her family came to Seattle a few years ago. (mike eats allot)
Re: we saw Dr. Heston!
Lori,
I do hope you find time in your very busy schedule to send me a christmas card ;-)
E card works
my email is [oldefart (@) hotmail (dot) com] if you lost it,
how TALL is little big mike who is now little big brother if I may ask?
![0]](http://uveitis.org/kids/images/beer.gif)
Topic Commands
Click to receive email notification of replies 
Click to stop receiving email notification of replies