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View Topic "My baby has congenital glaucoma - our story."

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Posted By: Muzette
Total Posts: 5
Joined Date: 8 May 2020

I'm a 47 year old with congenital, Juvenile Glaucoma. I wasn't diagnosed until I was 12. My brother was born blind in his left eye. 

I'm sorry about your child. I can tell you from experience that surgery is not usually a good option so young. I had one eye surgery that did not help a few years ago. As a matter of fact it made it worse. It no longer responds to eye medication in the left eye. Which is worse than the right. 

As far as the light sensitivity. It's a side effect most likely that eye doctors seem to have a hard time including when prescribing these drugs. I've had side effects ever since I started taking eye meds. Doctors will diagnose the side effects instead of simply saying that it's the eye medication that's causing these serious issues. Always use precaution when dealing with doctors who ignore side effects. 

I have used Timolol for over 30 years and am now waiting to see a team of doctors to help understand the long term effects. It can cause heart failure. The other meds can also cause a ton of effects and DO NOT use eye drops with preservatives. They have discovered it causes long term allergic reactions to ALL preservatives through time. 

The alphaganP , brimodine I believe is what causes the light sensitivity. There are a few more that do also. Going from a dark room to a one with light is a slow reaction of the eye adjusting. Get your baby some some good sunglasses and watch out for dizziness. 

I'm here if ya need help.

Posted : 8 May 2020
Posted By: Chantel Nicholson
Total Posts: 1
Joined Date: 30 Apr 2020

Hi, my name is Chantel & our baby girl Felicity was diagnosed with congenital glaucoma when she was 4 months old. She is 1 1/2 years old now & I feel only now I am ready to share our story:

We were in Spain on holiday when we noticed her eyes were very large (she has always had large blue eyes), especially the right eye & it went cloudy. It was such a scary time, the optician in Spain told us 'its normal & it could be because her eyes are changing colour'. However our instincts told us this was not normal.  Felicity didn't have any other signs, not light sensitive or watery eyes, she was quite a happy baby. 

We went to the GP as soon as we got home & they referred us to the eye clinic where we were told her pressures were 34 in the right & 27 in the left, both which were very high (normal is 12) & she needed eye drops, surgery & a referral to Birmingham children's hospital. 

Felicity had her 1st goniotomy on both eyes when she was 5 months old, nothing could prepare us for this, so emotional seeing our baby with both eyes covered & her weak cries... We stayed the night in hospital & she was so tired from the anesthesia she slept most of the time. Her pressures were normal for 3 weeks, however I noticed she became extremely light sensitive & constantly had a tear under her right eye. I called Birmingham hospital & got an appointment the next day where they found her pressure in the right eye was 32. They had to do the 2nd goniotomy on the right eye the week after, we stayed in again & it was a little easier to go through as we knew what to expect, although it's never easy to see your baby be put under general anesthesia, made me cry every time! 

Felicity's pressures remained stable after that, however the light sensitivity continued, we had to have all curtains closed & couldn't go outside (summer time), all my friends were having picnics in the park & we had to stay at home as Felicity would cry as soon as she was outside. The consultant decided to put her under general anesthesia again as Felicity refused for them to take the pressures & he had to see why she was so light sensitive. It ended up being a stitch that was irritating her, so no further goniotomies, however they found that she needed prescription glasses.  Once the stitch was out she seemed better with the light sensitivity, although it took almost a year for it to go completely. 

Felicity's eye sight on the right eye wasn't as good as the left, so we had to do patching therapy for 4 hours a day for 6 months, now her vision is equal & they do the vision test every time we have an appointment.

Felicity has regular check ups, was every week, now every 8 weeks.

We are due for Felicity's prescription check in June, I have a feeling she won't let them do it & they will need to put her under general anesthesia again, they said that might be an option, so wish us luck... 

When Felicity was diagnosed there were so many questions we had!  We had no idea what would happen or what to expect. We thought once she had the goniotomy she would be cured, we didn't realise she would possibly need more operations, regular check ups ect... We didn't understand it's something she will have the rest of her life. 

We didn't realise just how difficult the eye drops would be, it was a two person job, one to hold her head & hands & one to do the drops, she still hates them! 

I would advise always trust your gut instinct, if you think something isn't right contact the consultant. Ours in Birmingham is just brilliant, I can send him pictures & description via email anytime & he has squeezed us in on many occasions to check pressures. 

When you go to hospital for the operations to bring snacks & drinks & a book, it's such a long day! Also bring a pillow for sleeping, phone charger & plenty of tissues! 

It's all such a stressful time & so important to have family & friends to support you & ask for help & accept help from others! I got quite ill with the stress & worry, lost so much weight & couldn't sleep. I felt my whole year off on maternity leave was in & out of hospitals for Felicity, trying to juggle having our other daughter too who has just turned 4years old. Felicity is such a happy, funny cheeky girl, developing as she should for her age & we are so thankful for all the help we have received from the NHS! 

We have to take one day at a time, I hope she will have a relative 'normal life', I will check out some of the links to baby books etc on here. If there are any tips or resources I should get please let me know. 

Kind regards

 

Chantel x

 

Posted : 30 Apr 2020

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