looking for coping help for child

[lindalou]

more to our story

Home schooling is an option, but I'd like to keep it as a second choice. What I haven't mentioned is that my daughter has been through the ringer this year. She has had surgery to put tubes in her ears, she had an abscess in lymph node in her neck on Christmas Eve and had surgery on it Christmas Day (we were in the chldren's hospital for a total of 5 days), and have discovered that she has a severe allergy to peanuts and tree nuts (EPI-Pen allergic!). So now the corneal dystrophy and erosions have been added to the list. She has missed out or had special "circumstances" throughout the year. She wasn't allowed to go to the baseball games because of peanut dust, she can't eat birthday cake at friends parties (so I bring her a special cupcake or chocolate lollipop), she couldn't be with everyone on Christmas because of her surgery (although Santa came to the hospital and he left gifts under the tree), she had to trade in all of her Halloween candy from trick-or-treating for "special" treats that were all nut-free. The list goes on and on. So she is very much looking forward to going to school like her sister and her playgroup friends. She's been playing "going to school" since she could walk and talk. She has visited preschools and gone through the interviews and open houses. I just don't have the heart at this point to tell her that there is something else that she can't do. I will definitely keep home schooling as an alternative, but would rather try to find coping and healing measures to help her have a successful transition. I already made sure she is scheduled for the afternoon program, as her eyes are usually better as the day progresses. So please, please keep any ideas coming my way :-)

[liz56]

Thanks for the additional background information, Lindalou.

Can these things be related? I ask, because while I think that I have had this dystrophy for a long time, it did not manifest in RCE's until recently. (I'm 41, and it began when I was 40.) I read that 90% of people live with EBMD forever without even knowing they have it.

Your daugher's incident with the lymph node made me take notice. I have some kind of thyroid problem. I am definitely sub-clinical hypothyroid at times, but why, whether it is from Hashimoto's disease or something else, remains yet to be identified. This condition forced me into "significant" anemia, and even once that corrected itself with iron supplements, problems continued. I am on synthroid, and it is helping. However, I am always wondering if the RCE's / dry eye have a connection to this or some other systemic problem.

My experience has been that I thought that I just had heavy periods, which triggered anemia, then I thought that a six-week rash was an allergic reaction to something, then I thought that my RCE's were just because of EBMD, and I thought fatigue was spending too much time at work, and I attributed the ringing in my ears to tinnitus. You can see what is going on here. All of these problems seemed to be so unrelated, but once I got on synthroid, they all started to correct themselves.

It may be worth having a conversation with your daughter's primary pediatrician and presenting a list of this year's events to see whether or not there may be something underlying it all.

You are such a thoughtful mom! It sounds like you are doing everything possible to be sensitive to your daughter's wishes, hopes, and negotiating her limits with as little intrusion into her sense of normalcy as possible. She's one lucky girl to have a mom like you.

--Liz

[lindalou]

Thanks Liz, for your suggestion at looking at the bigger picture rather than each piece of the puzzle. At her 3 yr. old check-up in March, all the dr. really said was, "Wow, she's had a rough year, didn't she?". The pathology reports on the abscess said it was strep that caused it. But it was wierd that the corneal erosions started about 2.5 - 3 weeks later. I did point that out to her cornea specialist, but he didn't indicate that it raised any flags. It is interesting to read that others, like yourself, had other illnesses about the time of the erosions....hmmmm....time to do a bit more research. I think that I'll start a new thread asking others.

[nahzee]

Ok, so, in general, I don't know much about much. But I know a LOT about photophobia.

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For me, red is 'my colour' and it works pretty well for me. One of their other popular colours, because of the relatively good colour transmission combined with smooth light filtering, is the amber colour. It comes in three different levels of darkness (the LOWER the number, the darker) and I suggest trying them all- NoIR will usually 'replace' a lens you don't like without even asking you to return the first one, since they cannot resell them anyways.

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noir-medical.com

[VICTORIA UMBERG]

Kids with eye problems

Hi,,its nice to find another parent...I have a daughter who at 2and a half was diagnosed with an orbital tumor....she is presently 9 and has had 7 surgeries to date..perhaps one more reconstructive surgery in the future....anyway, we have been through it with patching her healthy eye daily for 7 years to address amblyobia, eye drops every hour..some that sting, wearing special sunglasses with foam lining, patching her eye shut at nite for exposure keratitis etc etc. Generally our life has been about her eye and its health...we live in the anxiety...compliance was always tricky and I did develop a few strategies. She is stable right now..Praise God and Ive worked really hard to help her lead as normal of a life as a kid can with a chronic disease..would love to share more with you or anyone with a child etc etc....You'll do whatever it takes for your child...Vicky