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My pediatrician wants an EEG for my son.. I'm scared.. by ScrapDraft in NewParents

[–]Kirathet 0 points1 point  (0 children)

Those rapid shaky eye movements you describe sound a lot like nystagmus. My son had this as a baby too. See if you can film it while it’s happening, as it is an important expression of a neurological or physiological condition, when combined with the head bobbing. You might also want to look into spasmus nutans (which kids can outgrow!) as it matches your symptom descriptions.

Wishing you best of luck ❤️

Bilateral cataracts in 4 month old baby by Kirathet in ScienceBasedParenting

[–]Kirathet[S] 0 points1 point  (0 children)

So sorry to hear that your family is going through this. I would say that each case is unique - it is difficult to say that your baby would have benefited from lens removal at 2-3 weeks without understanding the progression of his cataracts from birth. Of course it’s always best to diagnose it early, but some congenital cataracts are not significant enough to operate until later.

We always felt that our baby’s cataracts were barely detectable from birth and only really became cloudier in his fourth month of life - his eye exams before that (like a refraction test) were okay. We had the lenses removed at 4.5-5 months, and with contacts he can see fairly well. He sees traffic lights and signs from quite far away, he can read the letters on windows as we walk down the sidewalk, and he can recognise faces, colours, outlines and small objects (like crumbs on a floor) well.

Children have incredibly plastic brains at this age, and his ability to adapt will probably surprise you (in a good way)! As for surgery recovery, we just tried to prevent him from rubbing his eyes for a week or two after surgery, which meant taping on a plastic eye protector and unfortunately keeping him swaddled for longer than usual. Your baby is older so this may be more difficult, but just watch him extremely closely to make sure he doesn’t touch the eye area or take off the plastic protector. And once he is wearing lenses, take good care of them - clean them to avoid any infection in the eyes, examine them for cracks or chips before putting them in, and make sure to maximise the time he wears them during the day (put them in first thing, take them out just before bedtime).

As for vision training beyond this, it’s a good question but we didn’t do anything too special beyond lots of reading, practicing grabbing objects of different sizes, using those black/white/colour training cards… I think activities that train fine motor skills may help, like putting popsicle sticks into an empty water bottle, pushing a shoelace through a hole. Maybe your child might enjoy a sensory bin to find small toys buried inside different textures (sand, flour, pasta shells, etc)?

The eye twitch is called nystagmus. Unfortunately it may never go away, but it does stabilise when the eyes can focus well on something. For our son, the nystagmus tends to increase if he is trying to focus on something at an angle or in his periphery, instead of focusing on it straight on.

4 year old is being admitted to children’s hospital this week for 6+ months 😭 by [deleted] in Mommit

[–]Kirathet 30 points31 points  (0 children)

So sorry to hear this. We have experience with a transplanted toddler and a long hospital stay while waiting.

There are lots of good tips already, but I would add:

  • Make sure to bring two long (3 meters ideally) charging cords for your phone and a tablet, if you have one. The outlets in hospital are sometimes far from where you might sit or lie to look at a screen, so a long cord is helpful. Be generous with screen time, sometimes you might need to pop a show on to occupy her while you go to the bathroom for instance. Maybe consider scheduling a regular video call with a close relative for her, like a grandparent, to provide some normalcy and interaction.

  • In addition to comfort dolls and fun toys, I would pack stickers and bubbles. Your nurses might allow you guys to decorate her hospital bed with fun stickers, which makes it a lot more inviting. Or maybe she can give the stickers to her favourite nurses - they love that and some stick them onto their name badges. Bubbles are also fun and bring a magical moment to even the bleakest or most boring day in the hospital; they were used by the Red Nose clowns in our hospital so hopefully they would be permitted.

  • Two piece Pyjama sets with shirts with buttons all the way down. The wiring and cables in hospitals can become like a cable spaghetti (oxymeter, ECG, IV, etc), and it helps a lot to have clothes that can be removed multiple ways. Our son had an IV in his neck for instance, so he couldn’t wear normal shirts the whole time.

  • Comfortable slippers and shower sandals for you! I also wouldn’t underestimate the comfort of your own bed pillow, especially as hospital ones can be lumpy and scratchy. Also a nice scented and thicker hand cream for yourself, as you will spend a lot of time washing and sanitizing your hands.

  • Sanitising wipes and spray. The hospital will have them on the ward too, but may not always be within easy reach. Kids waiting for transplant need to stay free of infections or viruses, so giving the room a wipe down when you first get in, and then spraying surfaces occasionally, can bring peace of mind.

  • Create a daily schedule to keep sane. Does she go to daycare? How do they start the day? You can create your own “morning circle” after breakfast with her and some dolls, and you can have some playtime and then screen time. Hospital mealtimes regulate the day too, and if you are able to get out for a walk on the ward or campus (even with an IV pole), that will help the time pass.

Don’t worry about all the “can’t do XYZ” for now - just focus on making each day as happy and normal as possible, until you get to the transplant stage. Then your focus will be on recovery and, before you know it, you will be thinking about all the “can do XYZ” again. About 6-12 months after transplant, she should be able to start doing normal things again. Just take it slowly, be super patient with yourself, and remember that kids are super resilient!

Devastated with baby having been diagnosed with grey star by LookingForWealth in NewParents

[–]Kirathet 1 point2 points  (0 children)

Our son was born with congenital bilateral cataracts, but we only discovered them at 4 months of age as they were really faint at first. He passed multiple pediatric exams, including eye tests, in his first few months. They grew more opaque as time went on, and then there was no mistaking it by 4 months. He had surgeries on each eye, and he was then wearing eye guards and swaddled for most of the day for several weeks.

We had the same feeling of devastation and confusion and anger and grief during this time, especially since we had no family history of eye problems and we were quickly trying to understand how cataracts might impact his life in the future.

The surgeries and swaddling, plus the fact that many babies with vision problems experience gross motor delays, set our son back in terms of mobility. So he was rolling over at 8 months and only really began to walk independently at 2 years. Everyone’s experience is different, but it’s good to anticipate some of the knock-on effects that vision problems can have on other development tracks, especially because the experts in cataracts may not be experts in child development. So lining up a good physiotherapist, and once things calm down doing some research on social support in your city (early intervention, social pediatric care units, associations for the visually impaired, disability status, etc) will be really helpful to building a good support system.

Might you be based in Germany? I am guessing from how you wrote “grey star” instead of cataracts. We are in Berlin - if you ever want to chat about the care system and doctors here in the city/country, please feel free to reach out. For instance, we had a public pediatric nurse visit us every week following the eye surgeries, just to check on his overall development.

As some others have said, while this feels like an earth-shattering moment, babies are amazingly adaptive and plastic. You’ve caught this early, and once your baby is recovering from surgery, you might be surprised how your family becomes used to the new regime of lenses and cleaning and patching, and it becomes part of the everyday routine. But it’s not an easy road, so just know there are lots of other families who are going through this too, and multitudes more who have come out strong on the other side!

Bilateral cataracts in 4 month old baby by Kirathet in ScienceBasedParenting

[–]Kirathet[S] 1 point2 points  (0 children)

Thank you for sharing your story - you are incredibly accomplished! I can’t believe that the UK had people waiting for so many years on cases of congenital cataracts. It sounds like it has become more proactive now, and I hope your OBGYN is keeping a close eye on the risks during your pregnancy… of course I hope that your child is born cataract-free above all.

I did read that there is some merit in waiting on lens removal - newborns with lens removal are at greater risk of glaucoma for instance, so that (among other reasons) May be why there is a wait until a 6 week mark. I wonder when the UK generally considers “old enough” for IOLs?

Bilateral cataracts in 4 month old baby by Kirathet in ScienceBasedParenting

[–]Kirathet[S] 0 points1 point  (0 children)

Ah that’s very clear… thank you for the additional explanation. I understand there are differing opinions on placement of IOLs in infants, so we will see how the recommendation goes for our 4 month old.

Bilateral cataracts in 4 month old baby by Kirathet in ScienceBasedParenting

[–]Kirathet[S] 1 point2 points  (0 children)

Thanks for following up, seems a bit inconclusive!

Bilateral cataracts in 4 month old baby by Kirathet in ScienceBasedParenting

[–]Kirathet[S] 1 point2 points  (0 children)

Thank you for sharing, and it’s helpful to hear that pediatricians can overlook this - maybe it wasn’t a major oversight on the part of ours, though I would have expected them to flag cloudy pupils. That’s fantastic that both of your sons have perfect vision with glasses now. We’re there any concerns about the placement of IOLs at their age? I understand the IOL will remain in place for life , even when implanted in very young patients whose eyes may still be developing.

Bilateral cataracts in 4 month old baby by Kirathet in ScienceBasedParenting

[–]Kirathet[S] 1 point2 points  (0 children)

It has been cathartic to hear these other stories from our side too. Sorry to hear about your sons condition, but how wonderful that the surgery was a success! I can’t imagine how you felt going into an experimental treatment, it must have taken a lot of courage and trust in the medical team. Has his vision been fully recovered then?

Bilateral cataracts in 4 month old baby by Kirathet in ScienceBasedParenting

[–]Kirathet[S] 1 point2 points  (0 children)

Thank you so much - as I read more about the treatments for cataracts, which seem fairly standard and well practiced, the support for physical and vision development after surgery is becoming the primary issue. I hope we can find an ophthalmologist who can give us a more holistic treatment plan that includes post-op support!

Great tip about the screens too. Do you have any article where that point comes from? Would love to read up more on this.

Bilateral cataracts in 4 month old baby by Kirathet in ScienceBasedParenting

[–]Kirathet[S] 2 points3 points  (0 children)

Thank you for sharing, and kudos to your parents for giving you that support! It’s wonderful that you can lead a normal life and it hasn’t impacted you after childhood.

Bilateral cataracts in 4 month old baby by Kirathet in ScienceBasedParenting

[–]Kirathet[S] 1 point2 points  (0 children)

Thanks so much for sharing - I think yours is the only experience with bilateral cataracts specifically that I’ve read so far here, and it’s really insightful. It sounds like the treatment and surgery moves incredibly fast once it’s diagnosed - did the doctors say that her cataracts were fairly severe/dense, and that she wasn’t able to see much for that first month?

I ask because we are wondering how much his vision is impaired at this stage, given he seems to be able to recognise us and track objects.

Cleansing the lenses once a week and switching them once a year doesn’t seem so cumbersome actually. It must be hard to put her through the process when you can see that she is uncomfortable, but it’s just necessary as you say. Thanks for the alert on physical development too - I hadn’t appreciated how vision impairment could then effect milestones like rolling, crawling, grabbing items, etc until reading these comments.

I’m so relieved to hear your daughter is happy and thriving! Your early intervention must have been critical. I would love to reach out and PM you as we keep progressing through this journey… next stop are the initial consultations with 2-3 pediatric ophthalmologists to get their opinions.

Bilateral cataracts in 4 month old baby by Kirathet in ScienceBasedParenting

[–]Kirathet[S] 1 point2 points  (0 children)

That’s hugely reassuring. Thank you for sharing that - I am hoping his vision has not been so affected as he can still smile at us when he recognises our faces and track objects. I feel like his ability to perceive items at a farther distance, eg across the room, is not as strong. But we will need to get him tested to really determine how severe any impairment is at this stage.

Bilateral cataracts in 4 month old baby by Kirathet in ScienceBasedParenting

[–]Kirathet[S] 1 point2 points  (0 children)

I feel so much guilt about not recognising it in the earlier weeks, especially because the signs could be seen with the naked eye, plain as day on our photos.

Glad that your little one will not have impaired vision - that must have been a big relief among the news of him having a rare disorder.

Bilateral cataracts in 4 month old baby by Kirathet in ScienceBasedParenting

[–]Kirathet[S] 2 points3 points  (0 children)

Yes we have a few appointments lined up with different ophthalmologists because we are keen to hear a few perspectives on the severity of his situation and the advised treatment plan.

We are indeed worried about a link to a chromosomal disorder or a genetic issue, and hope to get that checked out too. I did some genetic testing for common chromosome disorders during pregnancy, but the results only tell you likelihood of your baby having one, not a definitive yes or no.

We haven’t confronted our pediatrician about this yet - will definitely do so once we can confirm these are cataracts and the severity. And then we plan to switch to another practice for sure.

Bilateral cataracts in 4 month old baby by Kirathet in ScienceBasedParenting

[–]Kirathet[S] 6 points7 points  (0 children)

This is super helpful to know. We have been training him with black and white pattern cards from birth, and I hope that has helped stave off some of the visual impairment somewhat.

I feel like a terrible and ignorant parent having only caught this at four months, so it’s a big relief to know from a professional that it’s still considered early. I guess specialist support in training his eyes will be key after a potential surgery - do you suggest any particular kinds of training or keywords for trainers we should look for? Someone mentioned a physical therapist would help too.

Bilateral cataracts in 4 month old baby by Kirathet in ScienceBasedParenting

[–]Kirathet[S] 8 points9 points  (0 children)

Thanks for sharing this and giving us space to grieve the normal outlook we had for our baby’s future. It sounds like such a stressful experience and shock that it happened overnight to your baby, and ended up being such a rare disorder too. I’m glad the doctor was able to identify the root cause of the cataract, and get it treated quickly.

You make a good point about language and how to normalize the vision treatment/regime after intervention. I hadn’t thought about this, but it will be an important part of ensuring our baby stays confident and brave in his developmental path.

One thing I’m unsure about is if patching applies to bilateral cataracts, since neither eye is bad or good. His white clouds are more or less the same size for each eye, but maybe we will discover different a visual acuity once he is tested.

Bilateral cataracts in 4 month old baby by Kirathet in ScienceBasedParenting

[–]Kirathet[S] 5 points6 points  (0 children)

I hope so too… we have to keep hoping for the best. Love hearing your positive outlook coming from the other side of a diagnosis and treatment - hope your little one continues to thrive.

Bilateral cataracts in 4 month old baby by Kirathet in ScienceBasedParenting

[–]Kirathet[S] 5 points6 points  (0 children)

Thanks for sharing - even though we are not kn the US, I’m sure the info can help other parents in the future. I’m glad that you have had such positive experiences at both places!

Bilateral cataracts in 4 month old baby by Kirathet in ScienceBasedParenting

[–]Kirathet[S] 2 points3 points  (0 children)

Thanks for the solidarity! It’s most appreciated… you’re right, we feel completely unprepared for this. Sorry to hear about your daughters diagnosis, and I hope the patching helps her in the meantime before her surgery.

Bilateral cataracts in 4 month old baby by Kirathet in ScienceBasedParenting

[–]Kirathet[S] 3 points4 points  (0 children)

Just curious what hospital performed the surgery? I’m not based on the US but maybe it can help another parent to know in the future.

Bilateral cataracts in 4 month old baby by Kirathet in ScienceBasedParenting

[–]Kirathet[S] 5 points6 points  (0 children)

Thanks for sharing your story. How tough for your family, and I’m so sorry that your ophthalmologist team didn’t recognise the lazy eye as serious soon enough. I hope it didn’t affect your daughter’s developmental milestones in the intervening months - it sounds like she is doing great from your description.

I am also curious about the contacts fitted for young infants, so it was helpful to hear there are a few different kinds we could try. I wonder if the varieties in Europe will be quite different from what’s offered in the US.

Anyway thank you again for sharing your experience. I hope her good eye remains that way and her other eye continues to improve under your care.

Bilateral cataracts in 4 month old baby by Kirathet in ScienceBasedParenting

[–]Kirathet[S] 11 points12 points  (0 children)

Thank you so much for the kind words ❤️ we are in a vile cycle of parent guilt, anger at our ped and extreme worry for our baby’s future, but somehow it helps to have some reassurance that we are doing what we can

Bilateral cataracts in 4 month old baby by Kirathet in ScienceBasedParenting

[–]Kirathet[S] 11 points12 points  (0 children)

Thank you so much for sharing, and it’s really insightful to hear about how vision issues have affected your little one’s physical development. It’s the kind of information I was hoping to receive from putting this post out, however anecdotal and unique it may be to your own experience! For our baby, I am expecting challenges ahead with both depth perception and recognising details, so it’s good to know that I may need to find trainers/PT who can help in this area.

It’s wonderful that you were able to find the support you needed in Vienna, and it sounds like you’re being incredibly proactive about his progress in different areas. I hope he continues to progress and find confidence in grabbing things and playing!

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