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  • #16
    Hi tiff,

    You could try the old 'smartie' strategy. We used to use this when our girls were young and starting out with cross country skiing. You go a certain distance and you earn a 'smartie'. Worked like a charm. I know it is not ideal, but we can't expect a toddler to understand the benefits of drops, especially if he is not comfortable with water getting into his eyes. I suggest you get a smartie for your drop and he get one as well. It does not have to literaly be a smartie, but it can be some other form of treat. It does not even need to be a food item, maybe it is time on the computer for a game with mom/dad. The reward needs to be immediate and something meaningful to him.

    Not all allergies show up on bloodwork. Have you considered going to a naturopathic doctor? Allopathic/conventional medicine typically tests for Ige allergens, naturopaths tend to test for Igg allergens. Ige is more of an immediate response, as in peanut allergies, Igg can be more of a delayed reaction.

    Getting him onto a good EFA supplement is important. You might want to have his Vitamin D levels checked as well. Often with allergies, Vitmain D deficiency is present. I would also have him on a good probiotic. Most of our immunity is in out gut, and allergies are an immune related illness. You might also want to keep a food journal to see if you can figure out what might be triggering some of his allergies. My guess is that if you can reduce the allergic load on his system, then you will improve the overall status of his immune system and decrease his dry eye symptoms. Our bodies work holistically. As Rebecca has mentioned elsewhere, dry eye is not just about isolated eye balls.

    It sounds like you are right on top of what is happening. Hats off to you!! You are way ahead of were I was with my kids at that age. . . I tended to minimize my daughter's complaints of sore eyes . . . Now that I have dry eyes, I am revisiting her issues. I am reintroducing the EFAs and Vitamin D. We have a jar of digestive enzymes on our dining room table, for everyone. We are all taking probiotics just before bed. All of this helps the immune system. Is this a magic bullet? . . . well no . . . but every bit helps. Remember to pay attention to the emotional/spiritual part of our lives. Take time to marvel at the beauty of life with your son. It will do both of you a world of good. Take time to laugh and have fun! This boosts our immune systems as well.

    Please keep us posted. Looks like there are many of us thinking of you and wishing you well!!

    Hopeful2

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    • #17
      a few things have transpired since my last post:

      my son is now amenable to using the drops and has, in fact, asked for them a few times because he said it makes the feeling that there is something sandy in them go away. i'm so proud of him! he won't let me do the warm compress for more than a minute no matter how or when i try it. i obviously will keep trying.

      i saw our eye doc for my own issues and asked many questions about my son. the doc said he doesn't need omega supplements. i take them, as per his suggestion, and i know he's very into healthy eating and nutritional supplements, but he doesn't think my son needs them now. he thinks the blocked glands and thick, pasty secretions are not a result of allergies, but possibly genetics (i also have this issue) or it's just something he could grow out of when his hormones change during his teenage years. he said my son might have dry patches on his eyes, but that his "tear lake" is deep and he has many tears so he suggested we do the drops 1 to 4 times per day to help with the foreign body sensation rather than because he thinks he doesn't make enough tears. so, i'm calmer now, but obviously still concerned so i plan to take the advice given thoughtfully by all of you and keep an eye on this. he sees the doc in three weeks and i'll post here afterward to keep everyone updated. thanks so very much!

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      • #18
        Hi,
        My son had his follow-up appointment and had another vision test. He is farsighted, but not enough to warrant glasses. The glands were still blocked and the doc suggested a few weeks was not going to unclog them, but said that when his hormones change in his teenage years there is a good chance his glands will unclog and his secretions will be less thick and more ideal. He suggested we continue with the blink drops and do the warm compresses and he doesn't need to see him back for 1.5 years. I asked why he has these gland issues and he said it's possibly genetic (I have them). Should I be satisfied with this? Is there anything more I can do? thanks!

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        • #19
          Tiff, The link below gives you current protocol for MGD in US paediatric eye clinics, with very great thanks to Mark Jacobson.

          Eye surface definitely needs monitoring more frequently than 1.5y if he does have unresolved MGD + allergic blepharitis at 4yo. Could it be the ophth is not familiar with these conditions in children?

          Childrens' hospital eye clinics use omega 3 oils first-line treatment for MGD with warm compress and expression. (The preference for flaxseed oil may be to avoid mercury in fish oil.)

          4/day artificial tears is a lot in chronic daily use at 4yo with no improvement on MGD. Obviously whatever we use affects the eye surface and tear functions. Our paed hospital eye clinic goes for minimum effective intervention and aims to taper as MGD resolves and functions restore, although frequent tear sub drops can be necessary to maintain the eye surface meanwhile.

          The 'unclogging of the glands in puberty' theory is a new one on me - it seems the opposite for many people.

          Epiphora (aqueous over-tearing) is an early sign of compensating for lack of oil in tear film due to MGD. It progresses to lack of tears as the eye surface changes. So tearing would not look dry at this stage in MGD. Dry patches on the surface are consistent with this, which may progress to keratitis. You were saying the tear substitute drops are to relieve gritty feeling rather than itching.

          The paediatric eye surface behaves differently to adult, which general ophth and docs don't realise. Also children are much less likely to complain about, or realise they have, symptoms.

          Search on 'child blepharokeratoconjunctivitis' to get fully informed and help you with decisions.

          Consider examination by a paediatric anterior segment/surface disease/dry eye specialist with a large state teaching hospital. There are such excellent people. Search hospitals on 'child blepharitis'.

          A paediatric eye clinic or paediatrician would also advise on coordinating eye allergies and the Veramyst (nasal steroid affecting the immune system, any sign of spots around eyes, mouth, nose, search on 'child eye periorificial dermatitis').

          These are your guys if you need them - American Association for Paediatric Ophthalmology and Strabismus: conditions (blepharitis, allergy), find a doc http://www.aapos.org/

          HERE IS CURRENT TREATMENT PROTOCOL
          'Current Management Strategies for Blepharokeratoconjunctivitis' by Mark E Jacobson, American Academy of Ophthalmology 2011, Paediatric Ophthalmology Subspecialty Day programme (go to pages 50-52) http://www.aao.org/pdf/Pediatric-Oph...1-Syllabus.pdf

          'Mean age of symptoms at age 4 and mean age of referral for treatment at age 6'
          'Blepharitis accounts for 12/15% of referrals'
          'Mainstay in my mind is omega 3/flaxseed oil' '1 teaspoon per 33 pounds up to a maximum of 1 tablespoon if 100+ pounds'
          Warm compress + flaxseed oil, maybe topical antibacterials, follow-up 6-8wk, if unresolved after a good try, oral antibiotics (rare)
          PBJ sandwich How does that improve the lipids? We are reducing all other fats, esp, as he says, processed foods.

          Hope you can clear the MGs without any more hassle!

          [If any paediatric specialists can help us - the little fella's only 4 - here's the way http://www.dryeyezone.com/talk/showt...7763#post67763]
          Last edited by littlemermaid; 21-Feb-2012, 08:30.
          Paediatric ocular rosacea ~ primum non nocere

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          • #20
            Little mermaid, I just now read your response after a tough night with my son. Before bed he complained that his teachers don't do anything to help his eyes. I had no idea he had been complaining about his eyes at school. I alerted the teachers of this via email tonight and asked them to help him administer his drops when he complains.

            I'm so worried for him. He is back to licking his finger and sticking it in his eye's corner. He will only let me put his drops in when his eyes are closed so I'm not even sure much is getting in there. I am still struggling with the warm compress, he doesn't let me do it for long no matter what I try.

            So you think he might have blepharitis? The doc didn't mention this. He also didn't think this was from allergies. How would we find out whether the mgd and gritty feeling is from allergies? I've stopped his allergy med (veramyst) because I worry it might make this worse. He needs allergy meds, or at least without them he has dark puffy circles under his eyes, so I'm not sure what to do. I'm going to check out that link you included to see if there is a better doc around here.

            I know you personally dealt with eye issues with your daughter, right? How did you manage to remain calm about it? I'm besides myself with worry and sadness that he's dealing with this because I truly fear it will get to the point of my eye problems and it will hurt him to be in the sun, air conditioning, heating, have constant eye pain, blurred vision, etc.

            Thanks for listening to me go on and on about this.

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            • #21
              Hi tiff,

              I am so saddened to hear of your son's struggle with his eyes. There is no way that a child should be going through this. . . I guess we can't pick and choose what ailments befall us or our children.

              I know you have already taken him to one eye doctor. Do you think it might be worth getting a second opinion? Is it worth getting back in touch with the first doctor for additional testing or a more in depth treatment plan?

              This might be way out there. . . do you think that your son might be stressing about things? I notice my eyes are worse when I am stressed. Stress causes us to constrict our breathing. On the up side, I also notice that when I pay attention to my breathing, my eyes feel more moist.

              I believe I read somewhere that allergy meds (antihistamines) can dry out eyes. Do you know what he is allergic to? Would eliminating common allergens help?

              I wonder if your son might be more comfortable with a cool compress? What about getting some audio books so that he can listen to them while having the compress warm/cool on his eyes?

              Hopeful2

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              • #22
                So my son saw the doc today and one of his eyes has several blocked meibomian glands and the secretions from his glands are not ideal consistency, but rather thick and pasty. He also has some dryness in his eyes. The doc suggested we do blink tears once a day and a warm compress for five minutes each
                Hi Tiff, You were saying the ophth saw no improvement and does not recommend flaxseed oil, whereas Mark Jacobson is using omega 3 as a first-line treatment for MGD to improve the meibom.

                Blepharitis just means something wrong around the eyelids (it is a convenient search term for you to read up). In diagnosis, you want to know specifically what is wrong around the eyes. The doc said he has seen MGD. Obviously, there's allergy involved but 'allergic eye' may not be the primary cause of the dryness.

                You are looking for a paediatric ophthalmology specialist who knows what's happening and can treat it successfully. We did not find diagnosis, even, until we went to a national childrens' hospital eye clinic (we wasted 1y trusting that local ophth knew what it was and what to do, they didn't and did not own up). The problem is that although children with MGD could be fixed or managed nearer to home according to best current practice, the general ophth mostly don't seem to know what they're doing. (See how Mark Jacobson reports 2y delay in diagnosis and treatment by local ophth; same in UK, Mr John Dart's 2005 paper on 'blepharokeratoconjunctivitis' listed in the refs.) As Dr Jacobson says, it's common and fixable but you need to be careful to avoid progression of the condition (unless it turns out to be a systemic problem in which case you need help with ongoing maintenance to look after the eye surface).

                I can't see another way round this apart from a paediatric eye specialist, maybe to be found at a large regional teaching hospital. Diagnosis and treatment is a massive relief. So is the feeling that the doc knows what they're doing and has seen it many times before.

                Do you want to PM me to chat?

                With warm compress, we find it works just to use a warm flannel to clean in a warm steamy bath or shower. As long as the eyelids are warm, the meibom melts.

                <hug to you both>
                Last edited by littlemermaid; 25-Feb-2012, 10:10.
                Paediatric ocular rosacea ~ primum non nocere

                Comment


                • #23
                  I tried to sneak some flax oil in his pb and j today and he hated it so I'm going to have to get creative.

                  A year ago, before I had any idea he had mgd, I took him to the Cleveland Clinic where he saw the head of the department who is listed as a pediatric opthalmology specialist and he didn't even look at my son's eyes through the equipment that his new eye doc uses, didn't use drops to check for tear break up time, didn't push on his glands to see what kind of oil they secrete, etc. I asked if my son had blepharitis and he said no. I feel as though this doc is clearly not well-versed in the circumstances we need attention for otherwise he would have picked up on this problem. Interestingly, he's included in the online publication you sent me a link to in your second most recent response to my thread. So, I wonder how to know which doc has any idea what they're doing. It's frustrating and I hate to make my son paranoid by taking him from eye doc to eye doc until we find the right person. Should I go interviewing eye docs for him first?

                  Thanks!

                  P.S. Will a pediatric opthalmology specialist definitely know about dry eye, mgd, etc.?

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                  • #24
                    Yes, I would absolutely interview eye docs first. I would ask them what tests they would do, what treatments they would consider (and at what point), what their follow-up schedule looks like.

                    Also, there is no need for your son to know that you are frustrated with a particular doctor. You can let your son know that each visit is just a get to know you session with a doctor.

                    I would try getting the flax oil into his pudding or yogurt.

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                    • #25
                      Will a pediatric opthalmology specialist definitely know about dry eye, mgd, etc.?
                      No. They specialise like the adult service, it has to be a dry eye, cornea specialist.
                      I wonder how to know which doc has any idea what they're doing
                      Options:
                      - ask Rebecca
                      - email enquiry to eye clinic patient information service
                      - email experienced paed ophth dry eye specialist for advice on who to see nearer home (concise letter, summary of history)
                      - look at current research to see who's working on what

                      I would start by looking at Cleveland Clinic website again. I'm seeing 2 obvious possibles listed with dry eye and blepharitis interests, Heather C and Peter McG (ET looks too general, from your experience, hopeless). http://my.clevelandclinic.org/staff_...y_search.aspx#

                      make my son paranoid by taking him from eye doc to eye
                      Absolutely. You can enquire in advance who is the best person to see - the desk staff will know all too well (be watchful for subtle hints). Children's hospitals are fun places, very different to adult service. The little guy will take his cues entirely from you and may even consider it a fun day out and enjoy the attention. It is difficult not to show the stress. However, you and the little guy will be massively relieved that the staff know what they're doing to stop his eyes bothering him. And he will do the treatments if the doc he likes says so. We always treat it like a day trip and go on somewhere good afterwards, picnic in the park, aquarium, boat trip.

                      If that doesn't work out, you have eg Ohio State Childrens, Cincinnati Childrens and Pittsburgh Childrens. Keeping in mind I'm English and have no concept of what's involved even getting there! (If you're really in trouble and you need to email someone for advice, try Ken N at Pittsburgh Childrens.)

                      I dearly hope this is not completely wrong. It is so difficult, I've no idea what it's like in the US. Again, my best results have been from a combination of local support but treatment in the big regional centres, purely because there are no experienced paed ophth on this local to us. Hopefully, you can work with a paed ophth in Cleveland, if that is your local centre (but you have the university teaching hospital clinics if you need them). At this point, no one's actually assessed what the little fella has, so hopefully it's a quick-fix for mgd/blepharitis, and also getting sensible advice on managing the allergies.

                      Tiff, PM me any time.
                      Last edited by littlemermaid; 26-Feb-2012, 04:56.
                      Paediatric ocular rosacea ~ primum non nocere

                      Comment


                      • #26
                        Hi,
                        I have 9 year old who has a similar problem from a different cause.

                        We use flaxseed capsules rather than liquid as he hated it, he takes 3x1000 mg each day. They are quite big but he swallows them when "buried" in a big spoonful of yoghurt. It took a lot of practice !

                        For warm compresses we have quiet cuddle time on the lounge before bed. I have a jug of warm water next to me and wring out a washer and I hold it on his eyes, one at a time. Often it is only for a minute but I repeat it as often as he'll let me and we can usually manage 10 minutes in total. We read a book or watch a DVD. He has gradually gotten used to it , sometimes he counts or we put the oven timer on to help pass the time. He has a disability so his ability to sit still is not that of a typical nine year old.

                        Hope you get some answers soon.

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                        • #27
                          Hi Wagnermid, Yes, we ended up with just taking capsules and a big drink and then food to make sure it's down. I think the Barleans Swirls taste lovely but she still complains. These were in our local health food shop. Plus they've made an effort to help us with child-friendly products http://www.barleans.com/

                          I like flaxseed oil in salad dressing but it's still a nutty strong taste for her and she detects it altho' I've got away with a small amount poured on homemade nutty flapjacks and muffins, but they have to be strong nutty tasting eg walnut. Unfortunately we can't cook with these oils, but I use other light cooking oils like olive and walnut (they have to be specifically for heating), plus we eat oily fish 3/wk. Young ones seem to like eg salmon a lot. Mine always loved to see a whole fish, which can be surprising to adults.

                          I think we have to improve the lipids with minimum processed and animal fats.

                          UK has started stem cell therapy for limbus so I guess Sydney is the best place to be if there's any safe action, if they still think it's that.

                          I can't believe I missed your previous posts. For years LM and I've felt we were alone with this, dry eye child, although I know there's plenty more out there. Best wishes for comfort and healing and happiness to you both.
                          Last edited by littlemermaid; 28-Feb-2012, 07:59.
                          Paediatric ocular rosacea ~ primum non nocere

                          Comment


                          • #28
                            Hi tiff. I am so sorry I had not followed this thread till now.

                            Re finding a doctor, I have pm'd you to ask for location. There ARE pediatric ophths who know dry eye just not that many. However, a pediatric ophth can be a really good asset regardless, if they're a good one. Think teamwork maybe. Cornea for their specialized knowledge, pediatric for their dedication to getting to the bottom of things & regular follow-up. (By the same token, many dry eye adult patients find an optometrist helps them more than the cornea doc though theoretically they have less training in this.) Problem with cornea MDs is the vast majority are more interested in corneal surgery than corneal disease, so you really have to pin down one that actually likes corneal disease. And of course the problem with EVERYBODY except the special few is, they're often too hung up on clinical signs to care about symptoms. However, sounds like your son has enough clinical signs to warrant more attentive care anyway.

                            I plan to modify his diet and hopefully that will help
                            I have a friend who is a pediatric ophth who sees a lot of dry eye in kids and I know one of the most frequent pieces of advice she has to give out is diet modification, esp eliminating sugar (sodas & such) and other bad stuff.

                            he's the kind of kid who doesn't like water dripping in his eyes from the bath
                            Wonder if that might have been an early sign of irritation from poor tear quality. Just a thought. Water irritates my eyes too.

                            He suggested we continue with the blink drops and do the warm compresses and he doesn't need to see him back for 1.5 years.
                            When clinical signs are minimal that might seem reasonable to the doc but for anyone, and especially a kid, with the extent of your son's symptoms that is really wrong. Kids can tolerate a lot before they start showing something's wrong and a pediatric doc with enough experience of this would know. - Also in completely healthy patients, MG function is entirely a result of age - starts out phenomenal in infancy and gradually declines over the decades so the most elderly are the ones with the fewest MGs functioning. I may well be oversimplifying but to me this says, if a bunch of them are not working right at his age, yes, they need to be dealt with and causes pinned down.

                            I really agree with the others about finding some way to make the interventions fun if at all possible. - My daughter is 9 now so not quite as into it but at 4, oh my gosh, she was so fascinated by all the dry eye gear I have in the shop and was always begging for stuff. Had a box of all her own goggles, sleep masks, rice baggies and such. I think I still have on my profile somewhere a picture of her with a Tranquileyes goggle on when we were flying to Boston for my sclerals one time. (No, she doesn't have dry eye.)

                            You can make mini rice baggies that double as bean bags to toss and warm compresses to sneak onto his eyes while you're reading to him. Have to get clever with ways to distract (as others have mentioned) in order to keep some heat on there for 5 minutes at a time (and I really would suggest using either rice or some other compress capable of retaining heat for 5 minutes - then you don't need to do it more than once).

                            I'm wondering too if there's any special buddy he has with a nice mom that would be willing to let you educate them a little about this so they could be supportive.

                            Random thoughts for what they're worth!! Above all though please, please do not let yourself mentally extrapolate this problem ahead for years let alone decades. Treat it as a deal-able current crisis, not as the beginning of a chronic crisis. Sounds like he's got a good aqueous situation and I feel confident that as things progress with better professionals, better info etc on everything from diet to medical care you'll see good progress and get more comfortable with the routines.
                            Rebecca Petris
                            The Dry Eye Zone

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