Does anyone always worry about child's health

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Does anyone always worry about child's health

Postby pseudo » Thu Mar 10, 2016 2:33 pm

DS1 was born with a benign tumor on his iris. It's very large and wraps right around under his eyeball and into important eye structures. To look at it, it looks as though he has a section of his iris that is black. It was noticed just after birth and we have 12 monthly follow ups because it's a tumor that may grow or turn malignant, into an iris melanoma. He has his 12 monthly check up later on this afternoon and as usual I've worked myself into such a state that I had to go to the GP to get some valium. I'm finding that, as he gets older, I am spending more and more time obsessing about it and worrying to such a point that I've stopped enjoying most things. At his appointment last year, the specialist told us that about 10% of these tumors turn malignant within 20 years. In DS's case, his is so ingrained into his eye that it can't be removed so he would lose his eye if it changes. What I didn't know and what I've recently become aware of, is that, even if caught early, this type of cancer metastisis up to 20% over 10 years. So if it did turn into cancer not only would he lose his eye but there is a 20% chance that he would die from it.

I don't know how to live with this. DP doesn't understand and sees the 90% chance that it won't happen. I can't focus on that and am a total mess. I can't live like this though. I do suffer from anxiety anyway and this on top is really messing me up. Does anyone else live with this kind of worry that there is a chance their child may develop a fatal illness? I just don't know what to do to get on with life. If I find out today that it's changed I'm not sure how I'll cope.

Sorry for coming on here when I don't visit very often anymore.
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Re: Does anyone always worry about child's health

Postby JMc » Thu Mar 10, 2016 2:47 pm

Hugs, Pseudo. We are glad you are here and that you trust us to support you.

I think that you have good reason to worry in a way that I don't - in that none of my children has a pre-existing condition. So, I don't worry about them developing a fatal illness, usually. Sometime I do think about it, in an imagining sort of a way. But I don't dwell on it. And I stop think about it if I start to feel upset. So, I think it is quite normal for people to consider these sorts of things.

But, if this is affecting you life, which it sounds like it is, it must be very difficult for you. Is it something you have discussed with a mental health professional? Have you ever had any good advice about it? You say it's getting worse. Do you think it is just because the appointment is today and that it will ease tomorrow? Or is the worry just continuing to grow?
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Re: Does anyone always worry about child's health

Postby Mummy woo! » Thu Mar 10, 2016 5:56 pm

Hugs pseudo - I think that would be weighing on my mind and upsetting me too. JMc is on the money in suggesting talking to a professional - they can help you with strategies to calm your mind and work out what works for you to deal with this very real worry.
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Re: Does anyone always worry about child's health

Postby pseudo » Thu Mar 10, 2016 7:52 pm

Thanks ladies. We had our appointment and everything went well. No changes to the tumour. I asked the opthamologist if I could speak to him without DS present and promptly burst into tears when I told him I can't stop obsessing about it. He was actually quite reassuring. He said that while they can turn malignant during childhood, it's very unlikely, more like 1 in 1000 and that it's mostly during adulthood that malignancy develops. He said there hasn't been a child in Adelaide where one has turned malignant in several years. He also said that children have a much lower rate of mestatisis (I don't think that's how you spell it) than adults and it's more like 6% in kids over 10 years.

He also said that a new guru has arrived in Adelaide who has great expertise in tumours of the eye in children so he wants us to go and see him. I'm booked in to see my psychologist as I can't go on worrying like this. I've been trying to use my worry strategies but they haven't been working. I'm hoping that if DS's does change or turn malignant that it will be in adulthood and hopefully in 20 or 30 years they might have better treatment options.

Thanks for listening. It means a lot xx.
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Re: Does anyone always worry about child's health

Postby AussieBritLu » Thu Mar 10, 2016 8:05 pm

Hugs pseudo.
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Re: Does anyone always worry about child's health

Postby chiggins » Thu Mar 10, 2016 10:20 pm

Hugs Pseudo! I know how you feel! My DS has a rather large dark birthmark on his scalp that has a very slight cancer risk later in life. Because he is so fair, we have decided to have it removed.
All we want when our babies are born is for them to be perfectly healthy and when something isn't quite 100%, it can be very scary.
I'm so pleased to hear you are seeking help for yourself! Stay strong. x
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Re: Does anyone always worry about child's health

Postby Nedsmum » Thu Apr 14, 2016 3:29 am

I have a child who does have a life-threatening chronic illness (type 1 diabetes).... it is scary....but for me the worst part is going to the kids hospital and seeing kids and parents who have a tougher road than I think we have... I can go along just fine on a normal day, but soon as DS gets sick, we go into 'sick rules' mode and then it's constant supervision, checking and worrying about when we might have to head for hospital.

I don't know if it helps any, but a friend of mine lost an eye in his teens due to some sort of illness/structural problem, and it really hasn't held him back!
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