I'm at the end of my tether....

Hi Nicola

Reading your story is like reading my own a few years ago! I totally understand how exhausted and frustrated you are.

We have also had endless advice from friends about their sleeping and often been told it was a habit or us not being firm but over the years my husband and I have come to realise that we know our children and we know most of it (not all i admit) is discomfort and the thrashing in pain at night could not be 'put on for attention' by any child of this age. If your son was just attention seeking then you are right - he'd stop crying and be happy as soon as you came to him. I'm not an expert but he sounds just like my boys and its definately discomfort.  We were told its common that the pain can be worse at night and at their age they seek comfort from their parents.

We've spent most of the last 7 years massaging one of their tummies or painful joints at night and we know it will be a good few years more. If it helps - it does get easier as they get older as they can now tell us about the pain rather than just crying and also we know for sure now its pain and not them habit waking. all of this has made it much easier and I am more confident telling people it is not us being too soft.  

Our boys are now 5 and 7 and we are still very up and down - last week wasn't too bad a week sleep wise but this week has been awful. They began to go down hill on Xmas day and are back to waking all through the night and are very tearful and stressed.

I also understand about the lashing out as our youngest son does it when he has had enough of his tiredness and discomfort - and i really don't blame him. He has every right to feel angry, I just want to help him find a way to channel it so he doesn't feel he has to hit and kick me. I am seeking advice on how to do this and I will post here when i've had my appt (in a few weeks).

Is your 3 year old well or does he have gut problems too? Do you have any understanding friends who you can talk to?  Does your older child go to preschool so you can have a bit of a break?

It is a very lonely illness and I really feel for you. We see the same consultant as you at GOSH and we are very grateful for GOSH's help as before that we were shoved from pillar to post and had more misdiagnoses than i can recall!

Our youngest son is due to have endoscopes/colonoscopy at GOSH in a few months - i hope it wasn't too awful was it? Was it mainly the prep that was bad?

where abouts in the country are you? We are Berkshire.

Hope to hear from you,

Kitty

Hi Nicola

I completely sympathise with the problems you're describing. Ruby was 2 in October and has been ill since birth. She eats:

2 slices of bread with honey or jam for breakfast

2 pots of Plum organic sweet potato and butternut squash puree per day

2 pots of Organix pear and raspberry puree per day

She has been on this diet for over a year, now. We've had no lasting success with any other foods, any attempts to give cooked chunks of these foods instead of puree, or even home-made versions. We have fully segregated washing up - separate sponges, and clean the sink after our washing up so it's never a contamination risk. She also has 26oz of Neocate per day. This, combined with 300mg Nacrom, 2xmax doses of Ketotifen and 1xdose of Montelucast means her symptoms are down to about 20% daytime pain, no night time waking and no ghostbusters nappies. It's also reduced the frequency of bowel movements from 5-8 per day to 1-2. However, that level of comfort is only achieved when she's in perfect health - she's had five bouts of illness (colds, ear infections, tummy bug) since October, and each one completely screws with her system. She has Azithromycin - a 3-day course - to damp down the immune system and help her deal with any bugs where she just isn't winning.

We do have problems with food - whenever she feels poorly it hammers her appetite and it's jolly difficult to temp her, because her diet is so boring. We alternate between coaxing and playing and being strict to get the damn stuff into her and get on with the day!

We have basically chosen for her to have an abnormal diet in order for her to have a normal life. This has been a very hard decision and we feel so strung out about it, I can't tell you, but at the moment, that's the call we've made. This is based on having watched her essentially become depressed through sleep deprivation and finding that we couldn't get on top of her bleeding. Every time her symptoms dipped, it would become a downward spiral that we couldn't control, with weight loss and bad episodes of bleeding that took hold and lasted for weeks.

We see Dr Shah at GOSH and Dr Rosan Meyer at GOSH for dietetics. I think we're going to do the scopes in the spring, so that she can have the aspirin-related anti-inflam that is available afterwards, hopefully to enable her gut to cope with more foods.

It's been a grim grim winter and we are just dying for a break. Bet you feel the same - my life philosophy is taken from a ridiculously popular source, but I think it applies: "Do the job in front of you and don't take your boots off, til it's done." At 4am, when I've been up for 3 hours and I know I'm not going back to bed, and it's been two weeks of it, sometimes I feel it's just a case of gritting my teeth and pushing through until something breaks. Hopefully not me!

Do tell about your scopes experience - I'd like to know what the challenges were, so I can prepare myself and Rube.

Sending you hopes for a good night tonight. (HAH)

Cath

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

Hiya

just wanted to say Happy New Year! Although we've got some challenges this year (sounds like a few of us are facing the endoscope experience) I really hope its a better year for everyone and that there is a leap forward in treatments for gut conditions in little ones.

We hve a tired house as our youngest has croup. 3 nights of very little sleep but we are hanging on in there. Is Ruby ill again Cath?

Kitty 

Hi Kitty

Aww sorry to hear about croup - how rubbish. Ruby is finally not ill. 3 days clear. She's back at nursery on Tuesday, so we're bracing ourselves for more bloody bugs then!!

This morning when I explained to her that she couldn't have peanut butter at the moment, because her tummy's not quite up to it (she keeps requesting it), she replied, "Oh mum, people are snatching it, aren't they?" Made me feel so sorry for her - tried to explain that it's nobody's fault and it's just one of those things, but she just patted my arm as though to say she knows it's not me snatching it...

On the plus side, she ate all her breakfast for the first time in about a month (she's been ranging from one bite to half), because I put jam and honey into little pots, and gave her a knife and cut her bread into squares and she spread it onto each square herself. Seemed to enjoy it!

Best of luck in 2012 - may our children gain in health, in weight and in comfort, more than they have in 2011.

xxx

Cath

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

Dear Nicola

I just wanted to add that I totally understand how you feel. I have two children, a boy of 2 and a girl of almost 5 and we have rarely had a nights sleep where both have slept through. Even now they both have suspected diagnoses of EGID and both can be incredibly naughty!!!! Or so most people told me, by not sleeping through, crying lots, bad tempers etc. i also came to the end of my tether in June last year and I was not sure what to do, where to go for help etc, but the support of this webiste helped loads. To finally have somewhere to let go of my feelings and people who understand. Oh the relief!!

My little girl has terrible eczema which keeps her up and feels sick and my boy screams so much at times and has terrible nappies. Both get ill easily and then remian ill for ages. Actually, this Christmas has been fab as both have been well. Hooray!!!

My son is going for scopes in Jan, after the decision that he has taken a turn for the worse. And knowing fully they will prob show nothing, just like my daughter. But I have to believe the Drs are doing the right thing.

Anyway, please do not feel alone as there are so many people here to listen and if nothing else give  a shoulder to cry on.

Forgot to add, you should see what sleep deprivation does to me. It really is  aform of torture and I get v grumpy!!!Oh and more than just irrational.

love a sleep deeprived mum!

Hi Kitty,

I am so sorry for such a late reply. My little has had a flare up for a good few days now and has been poorly day and night and I have been a bit like a zombie. He's asleep at the moment, praying he stays there for a few hours more before it all starts again.

Thank you so much for replying to my message. It's so good to hear from somebody who actually understands and I'm so relieved it does get slightly easier as they get older. My little boy is almost 2 1/2 and he has started to prod his tummy and tell me he feels poorly which certainly helps as I don't feel as helpless anymore and I can rub his tummy etc to try and relieve his symptoms knowing that he is in pain.

We went to a birthday party recently and he started lashing out at other children,trying to push them over or hit them, luckily they were freinds who know his history and although I do tell him off and make him say sorry for his actions, I feel like I'm forever trying to justify his behaviour and don't know how to deal with it. I ended up taking him into the kitchen away from everyone and I couldn't stop crying. I just wanted to leave but my 3yr old daughter was enjoying herself so felt we had no option but to stay. He's just so loveable and caring but when he's in pain/frustrated I don't know how to deal with him. I feel terrible  and so guilty for telling him off when he's so uncomfortable but at the same time I know I need to explain that he can't treat people like that. Please post if yu do get any tips on how to deal with the lashing out xx

Thankfully my daughter has no gut problems, although I do suspect a very mild milk/dairy intolerance as when she has certain yoghurts or a lot of milk, she vomits, has dry scaly skin and a very bloated tummy. We are waiting to see a dr to discuss this further, Praying it's not but if it is we'll deal with it.

We are based in Northamptonshire but were referred to GOSH after numerous Dr's and Consultants told me there was nothing wrong and that I was being neurotic. I forget the amount of times a medical professional has looked at me sarcastically and said "It's your first child I presume?" suggesting that I was worrying about nothing. As soon as we saw Dr Shah and explained the symptoms, he instantly told us that yes he thought there was a problem and that he could help. After my son didn't respond well to the medication and omitting of milk, egg, wheat and soya he had skin allergy testing at Viveka by Dr Shah, a barium meal at GOSH to check for obstructions and abnormalities and then the scopes.

I'm so so sorry for saying that the scopes were horrendous, that was really selfish of me, knowing that other parents have children who will undergo this procedure. The prep wasn't too bad to be honest, we were admitted the day before and my little one  (he was one at the time) had several concoctions to clear his bowel - the nurse explained they tasted awful but he took them without moaning (broke my heart as I realised this was perhaps due to him taking Neocate which smells so awful and is used to having awful tasting milk and foods).

The main problem we endured was the canula. I made the decision before it was fitted to leave the room as he hadn't had a good experience with a canula being inserted before, and I got quite distressed. However, when I returned to the room a while later he was hysterical and my husband said that me leaving had made the situation ten times worse and had I been there my little one would have been more relaxed. Anyway, after numerous attempts with me in the room he wouldn't allow it to be inserted and luckily Dr Shah (seeing how distressed my son and I were) said he'd insert it once he'd been put to sleep. Therefore, when I said it was horrendous, I think it's mainly my gulit that I made the decision to initially leave the room. I just blame myself for his distress and feel like the worst mum in the world for leaving him in his time of need. Also, when he was taken down for the procedure, Dr Shah told my husband and I to wait in the waiting room but (stupidly), I insisted on waiting in the corridor and I then saw him being wheeled out and into recovery whilst still under anasthetic - I don't know why but to this day I cannot get this image out of my head and it upsets me every time I think about it. He was so very poorly at that stage and I honestly thought I was going to lose him and I think seeing him in that state made me think lots of irrational thoughts.

He does go to nursery for a few days a week whilst I go to work, they are fantastic and understand his illness completely and cater perfectly for his dietary requirements. They assure me that distraction when he's in pain works wonders for him and although when he's particulary bad they'll give him one on one care and will spend time rubbing his tummy and giving him lots of extra cuddles. He's adopted his key worker as his mum when he's there and absolutely adores her. She says she really understand him and if he's lashed out she just says she can tell it's because of his tummy. I'm constantly criticising myself for deciding to work and send them both to nursery, but at the moment it gives me just a couple of days to feel like a human being and I feel as though it makes me a better mum as I then have a renewed patience to deal with the sleepless nights and challenging days. I feel realy guilty writing this as I knwo my son should come first and whilst they both come first, at the moment having a few days away has gotten me out of the dark place that I was starting to head to (just got very very lonley, down and withdrawn for a while).

I'm sorry to ramble on so much. Thank you again for getting in touch. Hope to hear from you again.

Lots of love,

Nicola xx 

Hi Cath,

Again, I'm so very sorry for not replying quicker. As per my response to Kitty, my little one has had a nasty flare up and a bad few days, although he's still asleep at the moment, so it looks as though we are making progress tonight!

I really feel for you, I know how upsetting it is seeing your little one on such a limited diet. My son seems to eat the same things day in, day out. The only bread we can find that he's allowed in an Energ gluten free loaf, we have to order it online, although he's so bored of it that he's now refusing it, apart from the odd slice of marmite or jam on toast. When he's particulary poorly, he also refuses food and tends to just have a diet of Neocate for a few days until he's feeling better and then he will start to eat a little bit of food again.

I'm constantly on the look out for new foods for him, he's stopped eating fruit and veg now aswell and seems to live on a diet of beans and dried fruit bars. I'm so worried about his nutrition but cann't get him to eat much else at the moment. When either my husband or I or my daughter are eating something he's started to ask us what it is and asks if he can look at it or touch it. He'll then tell me he can't have it as it'll make him poorly. Breaks my heart everytime, I do try and get us all something similar to eat and if my daughters having a nice biscuit, I'll always attempt to make or decorate one of his so that it looks the same but he obviously still realises his is "special".

We also see Dr Shah and Rosan Meyer, we actually bumped into Rosan at the allergy show in London in May. She was asking us who our dietician was and I said that she was based in Switzerland and she put her hand up and said, that's me! We'd only ever dealt with her via email or had phone consultations prior to that although Dr Shah has said the next time we're at GOSH we should book a dual appointment with them both.

My little one also takes Neocate, Ketotifen and is on Azithromycin now until april - the same as Ruby, three times a week. Although he's on prednisolone up until the end of Jan now too as he's been quite poorly. Dr Shah has said that if his symptoms don't improve then he wants to repeat the scopes he had done over a year ago now. I'm praying it doesn't come to that but if it does, we'll deal with it. I just want my little boy to get better and be pain free. Please see my earlier post re our scope experience.

Hope your little one stabilises soon and thank you again for replying to my post. Hope to hear from you again.

Lots of love,

Nicola xx

Hi Cath,

Again, I'm so very sorry for not replying quicker. As per my response to Kitty, my little one has had a nasty flare up and a bad few days, although he's still asleep at the moment, so it looks as though we are making progress tonight!

I really feel for you, I know how upsetting it is seeing your little one on such a limited diet. My son seems to eat the same things day in, day out. The only bread we can find that he's allowed in an Energ gluten free loaf, we have to order it online, although he's so bored of it that he's now refusing it, apart from the odd slice of marmite or jam on toast. When he's particulary poorly, he also refuses food and tends to just have a diet of Neocate for a few days until he's feeling better and then he will start to eat a little bit of food again.

I'm constantly on the look out for new foods for him, he's stopped eating fruit and veg now aswell and seems to live on a diet of beans and dried fruit bars. I'm so worried about his nutrition but cann't get him to eat much else at the moment. When either my husband or I or my daughter are eating something he's started to ask us what it is and asks if he can look at it or touch it. He'll then tell me he can't have it as it'll make him poorly. Breaks my heart everytime, I do try and get us all something similar to eat and if my daughters having a nice biscuit, I'll always attempt to make or decorate one of his so that it looks the same but he obviously still realises his is "special".

We also see Dr Shah and Rosan Meyer, we actually bumped into Rosan at the allergy show in London in May. She was asking us who our dietician was and I said that she was based in Switzerland and she put her hand up and said, that's me! We'd only ever dealt with her via email or had phone consultations prior to that although Dr Shah has said the next time we're at GOSH we should book a dual appointment with them both.

My little one also takes Neocate, Ketotifen and is on Azithromycin now until april - the same as Ruby, three times a week. Although he's on prednisolone up until the end of Jan now too as he's been quite poorly. Dr Shah has said that if his symptoms don't improve then he wants to repeat the scopes he had done over a year ago now. I'm praying it doesn't come to that but if it does, we'll deal with it. I just want my little boy to get better and be pain free. Please see my earlier post re our scope experience.

Hope your little one stabilises soon and thank you again for replying to my post. Hope to hear from you again.

Lots of love,

Nicola xx

No need to apologise for the delay - I know exactly what it's like!

I'm replying to one or two things you said in both your response to me and to Kitty - hope that's ok. x

You talked about rubbing his tum to ease symptoms, we also use heat with incredible success - we've got a little bag (about 8" square) which has grains in it - you heat it for 2&1/2 mins in the microwave so it's piping hot and then she cuddles it to her tum during stories and I spread it flat on the mattress under her tum when I tuck her into bed. We're obviously careful about overheating, but as she does sleeping bag and sheet and blankets rather than a duvet or quilt, and our house is a chilly victorian cottage, I don't bother too much. She also likes to be tucked in super-tight so that she can't make it onto her back in the night. The secret with heat therapy for the gut is to get it hot enough - I have gut problems and have a semi-permanent scold on the skin of my tummy which shows up particularly in the shower, or if I get too hot, but the heat from the hot water bottle allows me to sleep and has cut the muscular reflex vomiting by about 85% since I've been using it (about 7 years). It's definitely worth it. It's also cut the amount of drugs I need to take for gut pain by more like 95% or more...!

For upper gastric stuff, which Rubes doesn't have too much of, I always stop everything if she mentions it, and get her a fresh cup of cold water from the fridge and encourage her to drink it down, explaining that it'll cool the pain. Obviously I'll explain that it's actually diluting the acid when she's a bit older!

In terms of your doctors experience - this is so hard to bear, I think. We actually had a very good experience, but I employed a particular approach of being unbelievably forceful and unfailingly polite having experienced this issue with not being believed as a child with gut problems. My GP did at one point say he thought we might never "solve the dark mysteries of a baby's intestines" and I simply replied that I hoped he thought that someone somewhere might have the skills and expertise to stop the constant bleeding. He tried to sell me the idea that numerous babies bleed into their nappies and I just gently asked him not to diminish her pain and the fact that at that point he scarcely knew enough to be dismissive. We have a very good relationship, he's a lovely old man, but I don't take any shit and he damn well knows it!

Discipline can be a big old problem when you know they're hurting. Rubes is not very naughty with a sore tum, but she is a bit. I just ask her first if it's hurting, then when she says it is, I explain that it's rotten luck but it makes no difference to the rules. The main issue we really have is that she has a lot of background pain and if something goes wrong - she gets ticked off, she can't have her way etc - she suddenly can't cope with it. Again, we're really sympathetic, but don't actually back down. I do remember this vividly from childhood, that I'd be muddling through, putting up with things, trying to be brave and then I'd get a bollocking, or have a row with a friend, or get tired, or whatever and I suddenly couldn't cope with the pain and nausea. I'd immediately be told I was making it up because it hadn't been hurting before. We are very firm but very careful with Rube because the wild unfairness of never getting credit for being stoical and not wingeing gave me an anti-authoritarian rage that got in my way for over a decade!

Thank you so much for clarifying your scopes experience. I absolutely agree with you that the canula can be the worst bit for the kid. Rubes is allergic to the local anaesthetic so she has to do it tough, poor lamb. I don't blame you for wanting to be out of the room, but I agree that you need to stay. Both Russ and I always stay, even when they ask us not to (so I completely understand why you wanted to be beside your little chick until the last moment and saw him on the guerney). I always restrain Rube (we have a special hold that frees her arm and pins the rest of her) and Russ rubs her back and tells her she's brave and mops her because she sweats buckets when they put the damn thing in. It's hard to be there. But you have to. They need you. Then I sometimes go off the to the bogs and have a bit of a private pity party on my own. Russ doesn't know. He probably does the same thing and doesn't tell me!

I work as well - Rubes has Sunday night sleepover at my Mum's, then Monday with Mum, Tuesday at nursery and Wednesday morning at nursery and then I'm done for the week. I have had to give up my teaching job that I adored, because Rubes patterns aren't predictable enough to manage the enormous workload, so now I work for the family firm. I'm lucky to have had that option to get another job so easily and quickly. Lucky. I don't think you should feel guilty about daycare. It's good for kids to get used to the enormous challenges of 1 - being away from Mum for an extended period of time, 2 - sharing the grown-up attention with other kids and 3 - all the bugs they all share. At nursery they can do all this with no curriculum pressure at all. If you leave it until they're 5 years old, it's a culture shock, immune shock AND they have to do maths! Brutal times.

I completely understand the dark feelings you describe - I had a very nasty bout of depression that starting early in my pregnancy and then hit me like a ton of bricks when I had Rube and she was so ill. Although I'm over it now, I still sometimes feel the darkness of sleep deprivation and isolation pressing in on me in the wee small hours. It's frightening. I'm just all about surviving. Be happy when you can. It's all we can do.

Hope some of this helps -

xxxxxxxx C

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

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

Hi Nicola

I just wanted to say that i have felt all those feelings you have with my four year old girl and 2 year old boy. He also can lash out and I find it all v embarrassing, but I try not to apologise for it. I also make it clear to him that it is not Ok to behave like that. But he is only just leaarning to speak so it is hard!!

I also set clear boundaries for my little girl who often cries and it is v easy to think she is making it up, especially aas one mo she feels fine and the next feels sick. It is so hard, but we have to believe in ourselves and them.

She also had scopes and I found the experience upsetting, but mainly because she is my baby. I am about to go through it all again with my son next week, to just be told they have found nothing.

I also work, but I think i need the time out, but it is exhausting trying to balance it all on no sleep!!

Try and stop feeling guilty and blaming yoursel for everything. I did exactly that in June and I found it all destructive in the end. I know it is so hard, but try and concentrate on the good things, however little including the fact you are an amazing mum who cares so much for her little ones. And who can ask for more than that!!!

Keep smiling

A x

Hi Nicola

Please don't feel bad about saying the scopes were horrendous. I can understand why you found it so awful. You are not alone in leaving the room - when my son was a baby he had a tongue tie cut and I couldn't cope with it and let me husband hold him whilst it was done, and I left the room. I could hear him even from the corridor and i was really upset. I felt guilty too about leaving the room but I was there immediately afterwards and my husband was there.  I have stayed in the room every since and feel much stronger now. I think sometimes those experiences happen when we are at our lowest but then we get strong again and can cope fine. No one is strong all the time. 

When you've got kids who are unwell, I think its hard not to feel guilty about things and worry if we have made the right choices. I am always going round in circles about whether i've made the right choices and if i could have fought harder to get second opinions earlier on etc.  its hard.

Re: your son going to nursery,  its great that the distraction is helping your son cope with his pain and I found that preschool often distracted my sons too. My youngest son has been sent home from school today with pain but the distraction had got him through half the day which is great. 

I dont think you should feel bad about needing a break, anyone in our situation would understand that. I didn't really get a break as I was at home and didnt have family nearby to help and I found it very difficult at times. I also found it very lonely  So I dont think you should feel guilty. 

will your daughter be seen at GOSH too? 

Kitty

hi Angela

good luck for next week. I hope you get some answers from it.

Kitty 

Thanks Kitty

I am not expecting anything from it, so I won't be disappointed this time. I am just worried about him having a general.

Still it is going to happen so have to just deal with it.

Will tell you how we get on.

Hi A,

Thank you so much for your message and for your advice re the lashing out. My son has had 2 nights of being awake from 11pm at night and was particulary violent and uncontrollable this afternoon and as he was in the bath tonight, I notice yet another abcess appearing on his lip. He had once a while ago and Dr Shah said it signified how his insides were, so I guess that's why he's been so challenging recently. He was very poorly the last time this happened and ended up on antibiotics and steroids again, so I guess it may be a visit to the out of hours dr's at some point over the weekend. Just hoping he may sleep slightly longer tonight. We're back to GOSH on the 17th, they did say he may have to have the scopes again if he's not improving, hoping it won't come to that but if it does, I'll be a lot more prepared this time and will know what to expect.

Just wish I had a magic spell to make all of our poorly babies better or that I could have all the pain and suffering instead. Hate seeing him so poorly, it beaks my heart that I'm so helpless to him  xxxx

 Please let us know how you get on next week. Keep as strong as you can and I'm praying that you get some answers. 

Lots of love to you all xxx

Hi A,

Thank you so much for your message and for your advice re the lashing out. My son has had 2 nights of being awake from 11pm at night and was particulary violent and uncontrollable this afternoon and as he was in the bath tonight, I notice yet another abcess appearing on his lip. He had once a while ago and Dr Shah said it signified how his insides were, so I guess that's why he's been so challenging recently. He was very poorly the last time this happened and ended up on antibiotics and steroids again, so I guess it may be a visit to the out of hours dr's at some point over the weekend. Just hoping he may sleep slightly longer tonight. We're back to GOSH on the 17th, they did say he may have to have the scopes again if he's not improving, hoping it won't come to that but if it does, I'll be a lot more prepared this time and will know what to expect.

Just wish I had a magic spell to make all of our poorly babies better or that I could have all the pain and suffering instead. Hate seeing him so poorly, it beaks my heart that I'm so helpless to him  xxxx

 Please let us know how you get on next week. Keep as strong as you can and I'm praying that you get some answers. 

Lots of love to you all xxx

Hi Kitty,

Thank you for your message. You've really made me feel a lot more positive as I realise my feelings are normal for people in our situation. I'm so sorry to hear about the tounge tie too - you have all been through so much. I'm hoping 2012 is a good year healthwise for you all. You truly deserve some goodluck xx

I'm so sorry you have felt lonely, my heart goes out to you. It is a very lonely illness, especially as most people haven't heard about it so they haven't really got a clue.

We were meant to see Dr Shah on tuesday but my little one was too poorly to make the journey so we're going a week on tuesday instead. I'm really looking forward to seeing Dr Shah, mainly as I'm feeling so desperate about the situation that I just want him to check him over and tell us what we can do to help him. I'll let you know how I get on.

Do either of your 2 suffer with mouth ulcers or abcesses? As I mentioned in my previous post earier this evening, my little boy has got another abcess appearing, although there are no signs of any ulcers as yet. He was really poorly the last time he got one, hoping it doesn't get so bad this time.

Keep strong,

Lots of love xxxxx

Hiya

sorry to hear he is unwell. Did you have to go to the out of hours on the weekend?

My boys do get lots of mouth ulcers and we've had referrals for this before but they think its linked to the EGID so nothing can be done. When its really bad we use a spray to slightly numb their mouths before we try to brush their teeth or to help them try to eat. You can get it prescribed but your little one may be too young?

Sorry to hear he had an abcess before - poor little guy.

Your feelings are definitely normal and I've heard many other mums say the same kind of things. It sounds a silly thing to say but I do think it gets easier as they get older and I cope so much better now - when they were babies it was just terrible.

Have you managed to get a new appointment at GOSH? We have one in April, they were too full to see us in March as planned. Not sure when our little ones scope will be but GOSH said they'd plan for April time. 

Hope he's not too ill,

Kitty  

Hi,

no the abcess popped almost immediately and is now just starting heal so we didn't end up at the dr's. Although something strange has happened... he had a very poorly day tummy wise yesterday but last night he slept from 7.45pm ish until 6.20am this morning!!!!! I feel like a new woman!! The first time in 2 and a half years I have had more than 3hrs sleep withough being woken!!!! I'm sure it was a fluke and was probably just a huge amount of overtiredness on his part that made him sleep but am so excited! He's been an absolute delight today and is so loving and happy and is just like a different child. We've done nothing different, haven't altered his medication so am unsure why the change, although I'm not moaning!!! Normally he screams for up to 2 hours when just trying to get him to go to sleep as he's become scared of going to bed as he says it makes his tummy hurt, although for the past three nights now I've (bribed him- i know I'm a bad parent?!) promised that if he goes to sleep on his own, I'll take him to the shops and buy him a little peppa pig figurine. Anyway, the bribe seems to be working as he's already talking about which figure he's going to choose at the weekend and this evening told me to go downstairs and do my jobs as he can "do it on my own mummy" (go to sleep). I am so proud of him and could burst with pride over how well he is doing with this. Normally when he sees his pyjamas he gets hysterical but the past few nights have been totally different, praying tonight is good, although realistically I'm sure it may not be. Sorry to go on, just so pleased I have something positive to report for a change!!

We're back to GOSH a week tomorrow...will let you know how we get on. 

Hope all's ok at your end and will speak soon.

Lots of love,

N xxxx

 Hiya

that abcess sounds so painful. glad you didn't need docs. A whole night sleep is fantastic - what a good boy!!! bet you couldn't believe it. Our boys do that sometimes, they'll sleep really well one night and we can't believe it. Sadly it doesn't last, but we still really appreciate the good nights and see it as real progress, as once up on a time we never ever had a good night and didn't imagine we ever would. 

I've come to the conclusion that its all about 'Small steps' and any step in the right direction, no matter how small, is appreciated!

I hope it lasts and you have more nights like it. Wonderful that he goes to sleep by himself now too, thats brilliant. 

good luck at GOSH next week. 

Kx

 Nicola,

I happened on your post in an unrelated  google search and felt I should sign up to share my experience.  I am not familiar with the actual illness your wee one has but the description is so like my son at that age. My family has a strong history of Coeliac disease. It seems to be a particilarly severe strain of the illness as we have actually lost relatives in previous generations and it has impacted hugely on the family members who currently have it. 

My son was three and a half and had had chronic diarrhea for three years. He also has the urine probelms you described. He was not toilet trained to go to nursery school. His tummy was swollen and he complained of pain all the time. He had mouth ulcers which are indicitive of coeliac but to the best of my knowledge one of the biggest indicators of coeliac is a child being excessively clingy to his mum. His behaviour had also become an issue and he had the dark circles, his eyes were too blue etc.

With the family history my son was screened for coeliac several times until a doctor  who had actually done the reading informed my sister ( her specialist) that the test is very unreliable, and particularly unreliable in the under fives. 

With my doctoirs help I started my son on a gluten free diet ( not just wheat). As many coeliacs are also dairy intolerant  and he had already been diagnosed as intolerant ,I ALSO cut out dairy too. 

The result was miraculous - within three days three years of diarrhea had stopped and the constant flow of urine was no more. It took time but he followed a very strIct dairy free and gluten free diet and gradually my little son became a healthy little boy. I also was completely over the top about additives etc.

I also had his nutritional status assessed in an allergy hospital and he was put  several supplements.

My son is now nine- he is well balanced, friendly, unaggressive and effortlessly top of his class of 28 kids. I understand the worry  especially if behavoiral issues arise but I am 42 and behave like an ogre myself when I am unwell and if it is coeliac, grown up members of my family have been put on a  morphine dripsfor the pain and describe it as excrucating,

It might be worth your while  trying a full gluten free diet - no barley, oats , rye etc.

Also research which I found helpful was  that being done by DR Paul Shattock at Sunderland university. I contacted him personally and he was so helpful. His research is into autism but it seemed to link in with what my son was going through.

Almost forgot- the sleep thing- ours was from two til five every morn--it turned out kind family members were giving my deprived son smarties behind my back. Once they were stopped the sleep problems stopped. So to conclude if your child is still in pain despite all those meds it might be worth trying a full gluten free diet??? 

Jewel

 Hi Jewel, I found your post really interesting and I wondered if you'd had any luck reintroducing the dairy or the gluten into your sons diet or whether he still avoids them?

Thanks, Kitty

AFTER TRYING EVERY SIX MONTHS FOR FIVE YEARS  WITH NO SUCCESS , i WAS GRADUALLY ABLE TO REINTRODUCE DAIRY - iT WAS EASY TO TELL BECAUSE HE CAME OUT IN A RASH EACH TIME IT WAS INTRODUCED.

HE NOW CAN TAKE CHEESE, ICECREAM, HOT CHOCOLATE ETC.

AS REGARDS THE GLUTEN - WITH MY FAMILY HISTORY OF COELIAC I ASSUME THIS WILL BE LIFE LONG CONDITION BUT WE STILL EAT OUT AND BRING HIS BASES, BURGER BUNS ETC WITH US.

Life is good - we have a fairly normal family life now and a happy child!!

It gets easier.

Hiya, thats great to hear you had success in the end with the dairy. Reassuring to hear! My eldest son is desperate to be able to have dairy as he longs to have all the normal snacks and chocolates that his friends have. Thanks, Kx 

Hi Jewel,

Thank you so much for you post. We do have coeliacs disease in the family but we have been assured our little boy doesn't have it. However, I do intend to omit all gluten from his diet and will see if it makes a difference. I'm willing to give anything a go and will let you know how we get on.

Thank you again,

Nicola xxxxxxx