Great Ormond Street Hospital

Mary Poppins

Mary Poppins

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Oct 10, 2004
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Without going into too much detail, my 6 year old son has had serious metabolic and blood sugar problems since birth. Yesterday we saw our hospital consultant who told us that we now have to be referred to Great Ormond Street Hospital for the invasive tests that I didn't want to have to put him through. We were told that our local hospital could no longer manage his condition and the risk of serious complications when he becomes ill is now getting too high. I thought that we were doing OK in managing his condition ourselves, but our consultant does not agree.

I know that we are lucky in that he is generally healthy most of the time, but I'm so very scared that they just don't know what is wrong with him. It could be anything from simply a fast metabolism to a brain tumor and all sorts of things that I don't even want to think about.

I don't even know why I am writing on here - I'm at work and I feel that if I don't write it down and 'talk' to someone, then I'm going to just sit here and cry. I'm so worried and scared about what they are going to tell me. I always thought that Great Ormond Street was reserved for very sick children. So why is my son going there?
 
Just wanted to send hugs to you and your family - maybe think of it positively that he'll be in the care of experts in his condition. I'm sure if you're managing it well now, they won't do anything unnecessary but nice to know if you have questions, they may be in a better position to help. Just a thought. Take care.
 
I can be of help, Great Ormand Street are FANTASTIC. My daughter was referred there late last year, they are referred up there as they more specialist peadetric (sp ?) carers. It's not necessarily for very sick children (sometimes it is, I won't lie to you) but quite often they are referred there as they are the specialists whereas our local hospitals can't quite meet our children's medical needs due to budgets/resources and other factors. GOSH HAS those resources so they will be able to do the extra specialist tests that your local hospital can't provide.

My daughter is still under their care while we get to the bottom of her needs and I was very scared (like any parent is) before we went but I can tell you since we have gone, I no longer feel as scared as I did and I know we are under the care of the best in the business. Try not to think of it as a bad thing but more of a GOOD thing that your son is being referred to the best of the best. Take it one day at a time, have a cry on Ben tonight and let it out. If you want an extra person to talk to, feel free to give me a call any time xx
 
I'm really sorry to hear that your son is still ill MP :(

I guess, as tbaynancy puts it, if you can try to think of it in a positive light. The consultants are taking the health of your son seriously and are trying to make sure that he is seen by the best people to work out how they can help him get better.

Whilst it is so so scary, tests will help work out what is wrong and from there you can work out how best to manage this situation.

Sending you a huuuuge hug, this must be so stressful for you
 
Thank you. I just can't bare to think of him used as a pin cushion. The consultant told me that there is there obviously something very seriously wrong with him and we need to get to the bottom of it.

It's funny, because when he almost died as a baby I kept telling the same doctor that I thought that something was very wrong, but they told me otherwise. For the first few years of his life I was pushing for more intervention but was told that he didn't need it. Now that we have just got to grips with doing our blood sugar tests, giving him glucose and monitoring him all the time, I thought that we were managing him well. They then drop his bombshell and my mind has gone from thinking that everything is going to be OK, to worrying that we are not going to get through the day.
 
I can only offer up sympathy and support. Fingers crossed that you get to the bottom of it soon. Lots of positive thoughts to you and yours. Go and tell Ben all about it later today and have a good snuggle. Txxxxxx
 
Thank you all for your words of support. I need to snap out of feeling sorry for myself and just get on with it. It was just such a shock, I expected the consultant to tell me that he was doing well and to keep on doing as we have been. I didn't even consider that it would tell me that my son is getting worse rather than better.
 
Very sorry to hear about your son MP but children that are sent to Great Ormond St are not just really sick children, but children with conditions/illnesses that the local hospital feel will benefit the most by going there as they have a LOT more specialist equipment and doctors who specialise in more 'complicated' or unknown illnesses.

Great Ormond St as i'm sure you're aware of are absolutely brilliant so although it's very sad you're in this situation, your son is in the best possible hands.

Hope everything goes okay and remember; life throws hard situations at you to see if your wall of strength crumbles or gets even stronger! You'll get through it i'm sure.
 
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Its good to write it down MP and share.

I understand what you are going through.

When my son was a baby he was very ill and was referred to Guys Hospital in London. I was nothing short of terrified, not only the illness and the hospital but I have a long term phobia of catching the train to London due to an unpleasant experience as a teenager.

Of course I had no choice but to over come everything, it was truly horrible for me and really scary, I was so bad I got delusional at times.

The hospital was really first class. We spent 6 weeks on a ward where other children were dying daily with kidney failure etc., ghastly. My son had all sorts off tests and pins and needles stuck in everywhere. We were very fortunate and he made a full recovery after an operation, but at the time I can not express how horrible a time it was.

My son is now 24 years old and fit as a flea, thank god, giving me lots of problems of a different kind these days:smile:

Be strong! I for one will be thinking of you. Keep us up dated on your progress.
 
Sorry to hear your son is still not well MP.. You son will be at the best childrens hospital in the world and he will get the best care possible at GOSH .

Lots of good luck and get well wishes coming your way and seconding the crying into bens shoulders. I am sure he doesnt mind :smile:
 
Mary P,
I am so sorry. I too know about Great Ormond Street.
It sounds to be just the place for you because it will support you and your husband - the whole family. You are not alone in this, although you may feel it.

My nephew was there and I was with him on one occasion because his mother was working but also because, as kids get older, they have to learn to manage hospital appointments, monitor their own health etc without a mum or dad being with them. And eventually without Great Ormond Street!

The other thing I know is that my daughter who is a surgeon and obstetrician made a particular point of studying at Great Ormond Street. She extended her training by an extra 6 months or year especially to work there, to get first hand understanding of the problems and care of sick babies and children. So that she had the info to pass on to worried mothers like you.

Daughter and her colleagues at our local hospital are excellent, very serious and very highly educated doctors like your own local consultant. But in any medical speciality there will be just a few national centres with the specialist knowledge to make better judgments and this is important in rare conditions.
The very fact that you dont know what is wrong with your son is a reason to go to Great Ormond Street. May be their records will show that, yes, they did once have a rather similar case and that might be a clue?

That precious knowledge will help your son and your local consultant has done his best for you in telling you so. He isnt admitting failure in the sense you may feel. He is being responsible and doing his job. My daughter does the same.

She is very interested in doctor patient relationship, where there is often a break down in mutual understanding. She is a marvel at giving help, if people are worried. But her job is to know which specialist at which hospital has the highest reputation and the greatest experience of handling the rarer complications of pregnancy. She reassured someone on NR once by confirming they had been referred to one of the two best men in the country.

I am sure she would say that you couldnt be in better hands than Great Ormond Street. Or rather your son. He is the one who matters. No one is going to force you to subject him to investigations you dont understand or dont feel necessary. But the place to go to get the info and hopefully safeguard his health in the future is Great Ormond Street.

Not all kids who go to Gt Ormond Street are mortally ill. Many have an ongoing condition that needs to be taken care of. Of course you are lamenting that your son is not completely healthy. No one can magic that away. My nephew will never be totally well but he survived his childhood thanks to Great Ormond Street. And still does. He went to Cambridge and is a successful scientist.

Put a photo or two of Ben on your phone and face it as hopefully as you tackled your hacking problem. And if your son does have to spend time on his own there and you are hanging around just waiting on your own - I live in London and will always meet up for a cup of coffee and a bit of hand holding. And chat about Ben and NR to take your mind off it.
 
Just to re-iterate what many others have said, GOSH is not just for very sick children. They just happen to have so much expertise there that a diagnosis will probably be made much quicker than anywhere else. I went there as an outpatient when I was 30 - to their genetics department to have my carried genetic disorder diagnosed, so I definitely wasn't a sick child!

And don't beat yourself up - there's no question of feeling you 'should' pull yourself together or whatever, any of us with children would be exactly the same. Just remember, if they do need to do anything invasive with him, kids are usually remarkably resilient and breeze through the things we adults have nightmares about.

Big hugs to you and yours. xxxxx
 
Good luck at GOSH, i want my daughter referred there but they won't do it. It's not just for the seriously sick children but the doctors are renouned for being the best at what they do.
 
I can't add anymore than all the very good advice and information you have been given. But I do want to say I empathise with how you are feeling and I will keep you and your little boy in my thoughts and good vibes are heading your way xx.
 
Cortrasna put it perfectly. I don't know anything about Gt Ormond St, but I do know about loving my children, and I do know that you will get through this, not just because you have to, but because you love your son. x
 
I can't do any more than echo what everyone else has said. Try and focus on the big picture. You thought everything was under control, but the fact is there is still a serious problem that hasn't gone away. You need to get to the bottom of it to find a way forward.

You will get through it. It's natural not to want your son to go through barrages of tests, but he may HAVE to - for his own long term well being and to secure a safe future for him. Think positively, and recognise that tests and investigations are expensive and resource consuming. None will be done that aren't viewed as necessary by the experts.

It can't always be just you and him against the world. The involvement of GOSH adds another level of expertise, experience and new ideas into your son's management - let them in and embrace whatever help they can offer.

Thinking of you, your son and your family. Hugs to you and a big pat to your lovely refuge, Ben.
 
You really are all so kind, thank you for your support.

It's strange how I can 'tell' everyone on NR about this, but I haven't told anyone else in real life apart from his teachers at school (and obviously my husband). I find it hard to cope with my families constant questions because they all want reassurance that he will be OK - and I can't give them that. I find myself having to support them and at the moment I just don't have the energy. My in-laws are in complete denial and my MIL is forever telling me that there is nothing wrong with him.

The school are very worried as they obviously have a huge responsiblity to make sure that they act quickly if he is taken ill at school. Luckily his class teacher seems to have a real soft spot for him and goes out of her way to really look after him.

In some ways it is a relief to think that we might actually get a proper diagnosis. I'm just scared about what the diagnosis and prognosis will be.

I know that he will be in the best hands and that we are lucky to have this treatment available to us. I just ask myself for the 100th time 'why him?' He is such a lovely boy. He is so kind and caring, he works hard at school, tries his best in everything that he does and is the best big brother that you could ask for. So why does he have to be so ill? He doesn't deserve it and it's not fair. I don't wish ill health on anyone else, I just want to take it away from him.
 
I also don't want you to worry about your son being a pin cushion. Hopefully because the medics and nurses are experienced he shouldn't have to undergo too many gruelling blood tests. And if the play specialists are anything like the ones I work with (I'm a children's nurse) then your little boy will be too busy playing to truly notice what's going on with his body at the time. Massive hugs for you xxx
 
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