Challenging Times...

Submitted by Nicola79 on Thu, 01/19/2012 - 20:55.

Eosinophilic Gastrointestinal Disorders (EGID)

Hi, we went to GOSH this week and have been told that we're to try one more medication (Salafalak) for two weeks and if there's no improvement he's being admitted the first week of March for a second colonoscopy and endoscopy :-(

My little one has taken a massive backward step...very, very swollen, as white as a sheet, mouth ulcers that just won't heal (been there for nearly 3 weeks now), tearful, clingy and is just lashing out at almost everyone he see's. I literally feel as though I can't control him when he's like this and he doesn't listen to a thing I say.

When I took the prescrition request (written by Dr Shah) to our Dr's, I was yet again met with suggestions that we cost them too much money with the amount and types of medications that he's on and that they weren't sure if they'll authorise it or not. Why is everything a constant battle?

I took him to his little gym class this week (perhaps I was a bit ambitious and should have given it a miss this week, but he asked to go) and two separate parents that I don't know made negative comments regarding his behaviour. I tried to keep smiling but it broke my heart that the think he's just a naughty boy, if only they knew my boy is in almost constant pain and that he is the bravest little man that I know. I held it together until they were out of sight and had to have a private cry when nobody could see me.

We've bad times on and off but I'm truly at my lowest ebb. I'm constantly on the edge of tears, have put on an immense amount of weight as all I do it find comfort in food and coffee.

Really hoping they do the parents seminar at this years allergy show, so I can ask lots of questions.

Please let 2012 be a good one for all of our brave, brave little ones xxxxxxxxxxx

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Submitted by Kitty on Fri, 01/20/2012 - 10:09.

Hi Nicola

I'm so sorry you are having such a rotten time.

My little boys is so similar in that he really loses control and i can't control him either when he's like that. He lashes out, throws himself around and screams and screams. We are trying to find ways to calm him down but its so hard. Other people just can't understand. I've blogged today about how my little boy is very angry today about why he's in pain whenever he eats and drinks and how hungry he feels but can't eat. God I wish we could take it all away for them. He has said a few times in the past that I can't help him and nor can the doctors. That always upsets me as I'm his mum and I should be able to help him.

I hope they do the seminar again too as it was so lovely to be surrounded by other people who knew what its like and to hear the doctors explain things I hadn't fully understand.

Your GP practice sounds like mine - i used to get comments all the time about the cost - less so now as I ask to see a much nicer GP when i can. Once they even told me how much my children were costing and said the PCT had said they may stop funding the Neocate and insist we have a cheaper one. I really panicked as Neocate has been the best one for their guts and we've been on it so long. I rang the PCT before they had time to do anything and said I'd fight them all the way if they did stop funding it and I meant it too.

I don't think the GPs appreciate what a stressful illness this is for families and we need support and understanding and not pressure to cost them less!!! Sorry, I'm going off on one now!

When people make negative comments about his behaviour, have you explained to them he's suffering chronic pain or do you prefer not to tell them? I didn't used to but now I'm much more open and tell people but I know some people don't feel comfortable telling people they dont know well.

I really hope the new medicine helps him.

Kitty

Submitted by Anonymous on Sun, 01/22/2012 - 13:19.

Hi Nicola,

What an awful time you are having. Your doctor sounds like a nightmare.

I often wonder why everything has to be so difficult all of the time. Our GP luckily doesn't complain about the cost but does query everything and then have very strict rules about repeating medicine on prescription so I can't re-order until we have just about run and and it takes three days to get a repeat prescription so last week I was arguing that he would run out of his meds before they would give us the prescription and would be without for 3 days. After going back three times I got it. But with two other children and everything else, the last thing I need is trailing back and forth to the doctors and chemist every day.

It is very hard when they become so angry. My little one has been really difficult for the last two weeks. We were doing a food trial, so that combined with his other reactions has now stopped that again. Do you know what could have caused the latest flare up?

Hope he feels better soon, I know how you feel when you can barely stop yourself crying. Hugs to you both.

Paula

Submitted by Kitty on Mon, 01/23/2012 - 19:52.

Hi Paula

Which food are you trialling and how is it going?

Kitty

Submitted by Cath on Tue, 01/24/2012 - 11:03.

Ladies,

I must just say I am appalled at the PCT and GP carry on over money. If my doctor's so much as dared to mention this to me I would roast the bastards alive. How dare they ever suggest that it's unfair that our children cost the medical services too much money? Outrageous:

A) Fair?!?! FAIR?!? I'll teach them a thing or to about what's unfair. The NHS is not there to offer the same treatment to everyone. It is there to offer every tax and NI payer and every tax and NI payer's child to get the treatment they need when they need it. We're not all wandering around whining that we don't have to have costly chemotherapy, are we? We're all too busy thanking the gods that we don't have sodding cancer. And the same logic applies here.

B) They offer free quitting courses for smokers. Who chose to make themselves smokers. I could go on and give more examples. I won't. But we all know what I'm saying.

C) PCTs can whinge all they like that they're running a business and they have to turn a profit etc etc. I literally couldn't give a flying toss. I work. I pay. I am entitled to treatment for my child.

How hideous for you guys to have to deal with this kind of mealy mouthed nonsense when you're trying to jolly your child through a doctor's appointment or keep on top of the prescriptions. Shocking that they won't let you stockpile. I had a bit of resistance to keeping four tubs of Neocate in reserve and one unopened packet of every other medicine, but I just insisted. The queue got longer and longer behind me, and I insisted and I insisted. Gradually, I think they've come to understand that I won't get shouty, but that my embarassment threshold far outweighs theirs!

On one memorable occasion, they were a bit grumpy about me have Ruby weighed and measured on a Friday instead of a Tuesday (I work on Tuesdays) - I mean I ask you! Is such fascism really necessary?! I explained very patiently that I needed to get her weighed and measured in the village to avoid having to take her up to GOSH so she could go to nursery and play instead. They continued to huff and I pointed out that I am bending over backwards to lessen the burden of disease on my child, and the least they could do was give me a ten minute appointment with their bloody weighing scales. That put a sock in it.

I hope that your surgeries and pharmacies gradually bend to your will and stop pestering you with their idiotic attitude. I am outraged, just outraged, on your behalf.

HUFF.

Cath xxxx

Cath - little one born 2009 has inflamatory bowel and colitis...

Submitted by Anonymous on Sat, 01/28/2012 - 19:49.

Hi ladies,

Sorry for not replying sooner...just been manic at our end.

Thank you Cath for your support re the problems with the GP, I am also outraged and cannot believe they even suggest that they may not authorise our prescription request. I have put in a complaint re their behaviour with our local PCT as I have a battle every single time we attempt to obtain any medication for our son, and they have actually refused to prescribe his Calcium supplement, so currently we're having to buy it every time we need it on a preivate prescription. I am so angry, just hoping we get somewhere with the PCT.

Anyway, the Salafalk medication I mentioned we are now trailing, comes in granules, we cannot get our little one to take it, whether it be in a smoothie, mixed in with normal sugar sprinkles on jelly or any other way. So I contacted the hospital to see if we could have it in a liquid suspension instead and Dr Shah rang to say they need to do his scopes earlier than planned, so he's having them done on Wednesday. Am in a state of shock at the moment as hadn't anticipated it to be this soon. Just feel sick with worry and an enormous amount of guilt. He's had a couple of better days which worries me even more as I don't want to subject his to something if he seems a bit better? Although I'm sure Dr Shah wouldn't want to do it unless absolutely necessary?? Sorry just being neurotic...

We're still waiting to hear if we can go in the night before (not sure how the train journey will be if we have to travel down on the morning with him having had the bowel preparation - very messy and stressful I imagine), praying they can get him a bed so we can do all of that there.

Hope you're all ok and your little one's are not feeling too poorly xxxxxxxxxxxxx

Submitted by Cath on Mon, 01/30/2012 - 10:12.

Hiya

Of course you have my support - they are being dicks. It's as simple as that. I do think that element of justification that you are doing everything you can to ease the burden of disease on your family, and questioning whether they are doing the same is reasonable and powerful. It's all about parental advocacy unfortunately. Grim.

We have had great results mixing medicines with Tiptree Blackberry Jelly. The taste is very strong and the texture very smooth. Is it possible for you to take it or mock-up a pretend 'matching' dose for you. If I take it too, I can get the Rubester to take almost anything. Especially if I let her give it to me herself. Or Rusty. She loves it if 'Dada do it'.

I understand why you're shocked about the scope moving forward, but if Dr Shah has prescribed Salafalk then that sounds as if he thinks your little boy might be ulceracting, and if he wants to move scopes forward he must be sure that it's necessary. He really isn't, in our experience, one of those docs who are itching to get a look under the bonnet and lose interest if they can't get their shiney new scalpel out. I would trust his judgement. I do trust his judgement. I think he's an absolutely wonderful paediatrician. Have faith. Be calm.

We're not going for the bed the night before for Rube - we're going to drive up and either organise parking with GOSH or get Grandad to drive us and drop us. That way I can just do nappy changearama on the backseat as we go. It's all about planning your strategy so that you think it'll work - doesn't matter the scheme in my opinion - what matters is looking at the options and organising an approach that works for you guys.

One thing I do recommend is starting to think now about how to entertain little 'un in hospital. We have a box under our bed with really top distractions for hospital procedures, and I just add to it gradually as I go along, building up a good stock of stuff. Brilliant sticker packs, pop-up versions of Ruby's favourite books, DVDs for the laptop etc. By god you reap the benefits when you're in there and all the other kids are distraught and yours is just quietly enjoying their nice bits and bobs.

Hope it goes well for you guys - chin up.

xxx

Cath

Cath - little one born 2009 has inflamatory bowel and colitis...

Submitted by Kitty on Tue, 01/31/2012 - 16:27.

good luck with the scopes tomorrow. I agree with Cath that he is definitely not a doctor that rushes invasive tests unless they necessary. Our children have been seeing him for over 3 years and our youngest is only just having his first scope so he has not rushed into it with us and that has meant we feel much more relaxed about it being done now, as we know he wouldn't do it if it wasn't a necessity.

I hope it goes okay and Caths suggestion of toys and bribes is a great one. For any horrid test I give my boys rewards and gifts and I find wrapping them up distracts them a bit as they get the excitement of unwrapping them!

Good luck and it would be lovely to hear how you get on,

Kitty

Submitted by Anonymous on Thu, 02/02/2012 - 22:36.

Hi,

Thank you so much for your emails. We had an exteremely positive experience with the scopes!! We were admitted on tuesday morning and were discharged very late last night. He's still on and off groggy and not eating but on the whole he's doing really well. I cannot fault anything and although I'm relieved it's all over it really wasn't as bad as I'd thought. The nurses and dr's were second to none and put my little one first at all times, hiding the canuala and needles prior to tests so that he didn't get upset or worked up, arranging for the play maker to come in during certain procedures to take his mind off of things, bought him a portable dvd player and a peppa pig dvd after learning that he loved peppa pig, actually taking time to get to know him and talk to him and completely put both him and us at ease.

On an even better note, Dr Shah said his insides are looking a lot healthier than they were the last time the scopes were done. We've got to ring up for the biopsy results on tues and then we're back to see him in 5 weeks time to discuss medications etc. He's on daily steroids until we go back to see Dr Shah although dependant on the biopsy results he may be moved to a new medication,,,can't remember its name though.

I'm so proud of my brave little boy, he cried only once as he was being put to sleep and think that was mainly tiredness and hunger. I could burst with admiration over how he coped with the whole situation, he just took it in his stride,

I know it sounds silly but recent events have really made me re evaulate my whole life and have made me realise what's important.

Thank you all for your support through a bad few weeks, I'm so pleased I've found this forum, you girls have certainly helped me when I've felt alone and at my lowest ebb - thank you all so so much. I truly don't know how I would have done it without you all xxxxxxxxxxxxxxxxxxxxx

Submitted by Kitty on Mon, 02/06/2012 - 20:35.

Hiya

I'm so pleased to hear the scopes went well and thank you for such a positive story - its very comforting for those of us waiting our turn. He sounds like he was really brave!

Did you get the scope results? I hope it was good news?

Thanks

Kitty