Hmm, not sure if we are having a set back?

Submitted by Kitty on Mon, 05/03/2010 - 19:55.

We've been doing so well for so long, so it's a bit of a shock that we've taken a step backwards. Both our boys caught a cough and cold about 2-3 weeks ago and it has really affected them both. My eldest son has complained of tummy ache most days since and so has our youngest son.

Our youngest son has the more attacks of stomach pain then our eldest. I just don't know if it's EGiD or something else? He isn't screaming in pain like he used to, he just says it hurts and lies on me and sometimes tries to shallow his breath to ease the pain. I'm using hot water bottles and calpol.

I don't know when you know when its time to contact GOSH and ask for advice? For now we are plodding along. We met our new local consultant last week and she wondered if he's constipated and wanted us to try treating this to see if it eases the pain. I'm not sure if it is this as he is having some constipated poos but then some loose green ones and he's had lactulose all week but still complains of tummy ache about 3 times a day - sometimes after food?

he now has a fever too so i hope he hasn't got a chest infection from his cough. We were all quite healthy in middle of winter but beginning of spring has been a mare with one illness after another and i think it's just flared their guts up.

We have our appointment through for our feeding assessment at Great Ormond Street and I feel very nervous about it. Having someone video us all eating is a bit scary. Our youngest did eat quite well for a few days last week and I wondered if we might end up not needing the appointment but he's gone back to being off food so I guess we do need it. Our 6 year old is still eating well and I'm so proud of him. He even tried a bit of crab meet today. A year ago, I would never have believed he'd eat anything other than fish fingers!

Hydrotherapy is going well and the boys now have their orthotics to help their hypermobility. I hope it'll help their leg pains.

Anyway, I'm hoping May is bit healthier for us than April was! Hope everyone elses kids are doing well.

Kitty

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Submitted by helenb8man on Tue, 05/04/2010 - 11:24.

Hi Kitty

Sorry things aren't so good. What a pain and very frustrating after things had been a bit better. Do you think they could have any environmental issues. Rapeseed is upon us and it is the start of the hayfever season and these allergic type problems often run together.

With regards to the constipation bear in mind that lactulose itself can cause tummy pain. Big time. My daughter had it and she felt awful. You need to make sure he is drinking lots for it to work as it draws fluid into the bowel. Sadly the nature of most laxatives means they may cause discomfort. You may also find that the loose poo is overflow round hard lumps. Did the dr palpate his abdomen and feel any stool? If it continues a plain abdominal xray can be useful.

I can understand that you are anxious about the feeding team assessment but it is definately a good idea to go. I reckon they will have a lot of ideas for you. When do you go?

I still think it is worth discussing scopes again when you are next a gos. Unless they look they are treating blind and it is easy to say the problems are more psychological but they may well not be. I don't think the waiting time is that long at the moment. Just a thought.

We are mid flare up and back on another 6 weeks of steroids so set backs here too. PN not the be all, end all miracle we hoped for.

Great news on Luke's eating!

Love Helen

Submitted by Kitty on Wed, 05/05/2010 - 12:49.

Hiya

I hadn't thought about environmental factors! could it set off the gut symptoms?

Thanks for your tip on lactulose. Would I have to talk to my GP about an x-ray or a consultant? Should i explore things like this before just going to GOSH and getting steroids?

I get confused about what Dr Shah refers to as 'gut symptoms'. can you have a flare up that is mainly pain and not accompanied by vomiting / diarrhoea? I find it so hard to know if this is the EGID flaring up and if and when I should just get some steroids?

Luke is complaining about his tummy more too. I thought maybe he was saying it so he doesnt have to go to school but I'm not so sure now as he was complaining at dinnertime yesterday. I don't know if he needs something?

The feeding team appointment is in June. I know what you mean about discussing scopes with gosh. we have had a letter saying Dr Shah is away in July so our appointment has been postponed till September now.

So sorry Ben is having flare up too. Is he ok? Are you all ok? I thought the PN would stop any flare ups? When are you next at gosh?

How is Izzy doing?

I started a part time job today - it's at B preschool so he will come with me. I felt very nervous and I keep worrying I'll let them down because of so many appointments and the kids being ill a lot. I don't want to be unreliable. B has a chest infection but my mum kindly came to look after him today so I could go to my first day at work. She said she thought they both looked pale and Luke looks thinner now he's lost weight.

Anyway, big hugs,

Kitty

Submitted by swimmombrandi on Wed, 05/05/2010 - 22:34.

Kitty

How long or often do Flare ups happen? I'm really scared, this is all new to us. I have been all over the internet, but nothing tells a person how to deal with this.

Brandi

Submitted by Kitty on Thu, 05/06/2010 - 18:45.

Hi Brandi

My 2 don't get many bad flare-ups but my 2 do seem to get mild ones every few months where they get stomach aches, mouth ulcers, joint pains and occasionally reflux and diarhoea. It seems to be related to them catching bugs. When they have these flare ups it can last weeks sometimes. They take prophylactic antibiotics in the winter to reduce the infections/viruses they get - do they do this in the US?

I know there are some other mum's on this site who have children who get much more serious flare ups and they can happen regularly and often require steroids to settle it down.

As far as I know, in the uk a flare up is often treated with steroids to settle it down. Is it the same in the US?

Good luck and I hope your son is more comfortable soon.

Kitty