After a child has been really ill

[Divster]

After a child has been really ill, how do you not panic every time they seem poorly?

Back in November 2010 (its on here somewhere) my then 3½ year old suddenly became very ill. She ended up having a big operation, and then we waited to see if she had cancer. It wasnt, it was all clear. The next 3 months were uneventful, which is fab for recovery. Then she started getting ill, with worrying symptoms.

The operation she had was a large laparotomy to remove a 2lb cyst. We have seen a surgeon that was present during her operation, and he said he didnt agree with her surgeon, and that it looked like a tumour to him.

Her stomach distends to huge size, very rapidly. She has been admitted 12 times with this since the operation. The trouble is its more that everyone panics, even the medical staff.

She is still un diagnosed, but bloods show she isnt poorly.

Since January this year, she has been under the care of paeds and gastro, which took a long time to get referral for her, as once she gets admitted to hospital, she was always just rested and nil by mouth and fluids, then sent home the next day with no follow up.

They think she has adhesions due to the operation, which is causing sub-acute bowel obstructions, but as her bowels work ok, once the adhesions lose there grip, its all ok and over with, but for a few hours she is in lots of pain and has the huge stomach.

She has started to get left thigh bone pain, and finds it very painful to bend her knee, but this is for a short time only. I have now also seen maroon coloured poo, which I think is blood. When she last saw paeds, they said her spleen is enlarged, and that this would need looking into when she is next seen by gastro, as she wasnt showing symptoms that needed urgent attention.

I have lost faith in all medical staff, as when she shes someone new at a hospital, as they dont know whats wrong with her, they just put it down to constipation, which she doesnt have. No one seems to agree on anything.

So I have 6 children, 3 grown up and 3 little ones, how do I stop worrying about this one?

Oh goodness, I have no idea how you'd stop worrying. I'm so sorry - it must be very frightening and stressful.

Poor you, it sounds awful. The bottom line is that you won't stop. You just have to try and find peace within the situation you are in. You also have no option but to deal with the medical staff you meet, BUT, keep a notebook of everything that has happend, medicines and procedures that she has had and take it with you for them to read.

Also bone up as much as you can about what you DC has wrong with her. Be very confident you know your child better than them, trust your gut instinct. knowledge is power, as is the knowledge that you are the parent and you have your DC best interests at heart.

My DS had bad vaccine reations and also a auto immune disease, so I educated myself, I also have faith, which is the most important factor, but I will not bang on about that unless asked.

Your doing your best.

I just wish they would be straight with me. I feel very fobbed off, and like I have to fight for her, on her behalf. It also doesnt help, that we being bounced from our local hospital, to the hospital that did her operation. 2 sets of different medical notes.

I just her pain free and not to suffer with what ever is wrong with her any more.

I think thats what is getting me the most. I cant get them to understand that she isnt just constipated. I know hand on heart she isnt. Just like for the 3 days they treated her impactation, before they realised it was a huge cyst and not poo, as I had told them she wasnt constipated then either! They didnt believe me! I feel they are not believing me now either. Because they didnt listen to me then, she had to have 3 days of wash-outs. But she isnt constipated, I kept saying.

When they then said they had got it wrong, I said I knew she wasnt.

I am starting to doubt myself now though. Told that maybe she just has to learn to live with the way her stomach goes. She looks heavily pregnant when it happens, it gives her reflux at night, which leaves her with a constant cough.

They have tried antibiotics, as they think she also has small bowel bacteria over-growth, these make her much better, but only while she is on them.

Also, part of the cyst that has been left in, they left 20% as it was too stuck to her bladder, this I have researched, and it must all be removed, as it can turn cancerous later in life.

Just another to add, the last time we went to clinic with the gastro, they kept her in so they give her a barium swallow and follow through. This was because on the day of clinic she had swelling in her upper stomach. This was ok, and she came home the next day, after we were given 3 different diagnoses from 3 different people.

6 weeks later I find out it was because they thought she had malrotation! I am guessing the swelling they felt, was from the enlarged spleen though, which no one seems to care about

How am I not to panic, when they panic themselves when she turns up at clinic with swelling? We are dealing with this on a mostly daily basis!

Have you looked at changing her diet? I know that can impact gut bacteria. You could try eating coeliac friendly for a month to see if it helps. You must be at your wits end, I bet you have tried everything.

She has been tested for coeliac, its negative. Also had breath tests for fructose malabsorption and lactose, all negative.

where abouts in the country are you, have you been able to be seen in a joint gastro surgical clinic where both specialities can get together and make a plan ??

Yes she is under surgical and gastro at the same hospital. It was surgical that passed her on to gastro. She is seen at Leicester Royal, which isnt our local hospital. The plan is, she has open access to the assessment ward, which now means our local hospital wont touch her. Her surgeon, is strongly against the idea of adhesions and last time she was in put her 20ml docusate twice a day, for none non-existant constipation! Took her doctors and on advise stopped this medication, as it gave her terrible stomach cramps and put her in nappies! All her stools are nice and soft, there is just a lot of it! Her colon is distended also, and on xray is always full, but impactation.

Its like its jigsaw puzzle, but I want them to put it all together and find out whats going wrong.

They did say it would take time, but as they think nothing medically is wrong with her, there seems no rush. But here we are still dealing with they way it is, having your 5 year old looking 9 months pregnant and in discomfort around 4 times a week is not fun

Oh dear, your poor DD. Have you asked about being refered somewhere else? Maybe one of the childrens hospitals? You would have to start again with informing them but a new person might get to the bottom of it?

Leicester Royal is a childrens hospital, it says so on the letters

Maybe its time to ask for more invasive tests? Everything so far has been none in-invasive