# Please Help!



## Tootsie (May 5, 2010)

I am so sorry for just launching in here as a new member, but I have been desperately looking for someone to talk to about my son, and would appreciate any advice from other parents.

He is 15 now, was diagnosed at the age of 6.   We were very lucky in that we/he was able to control his levels very well, and he only had one REALLY bad episode which needed hospital treatment.

For some reason I have been sort of okay with his condition, just "got on with it"............but the last year he has been suffering terribly from sickness/acid reflux - he has been off school more than attending

 - we have had tests done for helicobactor - which were positive, he got the triple antibiotic which seemed to settle it down but his symptoms came back - due to him missing so much school we paid privately to have tests done (barium meal, scope down etc).............the consultant said that he suffers from mild acid reflux and prescribed omeprozole.

This is still not helping and my husband and I have handled it TERRIBLY this last week or so, more or less doubting his symptoms (thinking he is exaggerating as it seems much worse during school hours).

This morning he was sick - my husband and he had words and he burst into tears - he seems really upset and down - and so am I.  After 9 years coping I seem to have gone into shock - I cant seem to get this sickness sorted for him and he now (on top of all of the other complications in his life) thinks that we dont believe him.

I feel SUCH a bad mother - Im sat at work here and am in floods of tears.

Can someone please, if not give me advice on making him better, tell me why I am feeling like this after nine years coping......................


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## Northerner (May 5, 2010)

Hi Tootsie, welcome to the forum, but sorry to hear of the circumstances that brought you here  

First off - you are NOT a bad mother! Goodness me, it must be so difficult trying to deal with all this, and very stressful for the whole family, so don't put yourself down.

How are your son's levels throughout this - has his control gone to pot at all? I sometimes feel sick if I am at either end of the BG spectrum so it may be a contributing factor, especially with growth hormones kicking in at his age. I was on omeprazole for a while to help with side effects from other medications but found it didn't really help much, so it might be worth asking the doctor if there are any alternatives you might try.

Hopefully, some of the other parents will be along with better help than me as I am 51 and have no children so don't know a great deal about what might be happening.


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## Tootsie (May 5, 2010)

Thank you very much Northener. My husband is convinced that its when he goes a bit "low" that the symptoms are worse - the Consultant (who spoke to us in no uncertain terms when we asked questions says that its NOTHING to do with his diabetes - I still think it is.

Thank you for your kind words.  His levels arent too bad - the highest would be maybe 12 - 13 (which I know isint great - but it doesnt happen that often)

Are there any other parents with children who suffer from sickness (not hypos etc) who feel that its connected to their condition.  Or type 1 people who this sounds familiar to?

At the end of my tether with hospitals today I have rung a Homeopath!


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## Kei (May 5, 2010)

Hello and BIG hugs to you!  That sounds like a lot to deal with, and must be very hard for your son to cope with too.

I can't help personally, but I have a friend whose children all suffered terrible acid reflux when they were small, and I think her youngest still does.  I know she had some amazing support from http://www.livingwithreflux.org/

Kei
xx


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## Tootsie (May 5, 2010)

Thank you Kei.

I am going to look at that link now.

The thing is I think that after nine years coping well with his condition, at 15 he now really realizes the implications of it all - when he was younger it was just "accepted" as part of his life.

I do have a gut feeling that its blood levels and puberty that has a lot to do with this.

In a way Im glad I was desperate this morning becuase this seems like a brilliant site, and I might be able to help other people on some of the other sections..............

thanks!


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## Northerner (May 5, 2010)

Quite a few of our Parent members are also members of http://www.childrenwithdiabetesuk.org/ which might also be able to help. Their site operates an email list, rather than a forum, but I've heard it is very good.


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## Steff (May 5, 2010)

Hi Tootsie and a warm welcome to the forum, sorry i cant directly help you out but we have amazing parents on here who go through the same trails and tribulations you will to and there all so great so your in the right place for the best help xx


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## Tootsie (May 5, 2010)

Cheers!   Ive just looked at the parents forum, some very useful information there.

And also VERY emotional.  I think my problem is that I didnt want to think too much ahead - just coping from day to day and the thoughts of what my son will have ahead of him just seems overwhelming.   

He copes very well with his injections overall - if we could get rid of this sickness life would be so much easier.

thanks again to those replying.


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## bev (May 5, 2010)

Hi Tootsie,
Sorry your feeling so down - very understandable though! I am just wondering whether you have had your son tested for coeliac? Sometimes the symptoms for coeliac dont fit the 'norm' so it can often be overlooked, and as you know, there is a direct link between diabetes and coeliac and stomach problems. There are quite a few on the other forum who have a child with diabetes and coeliac and after reading some of the posts it seems that clinics are often reluctant to have them tested. How long has your son been taking the medication for acid reflux? I take the same medication and have been on it for 3 months now - the GP said I may have to be on it always as the symptoms do come back when you stop. Dont worry about feeling down - its very normal - it just shows what a caring mum you are!Bev


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## Patricia (May 5, 2010)

Hi Tootsie and welcome to the forum. So glad you've found it.

My first thought was like Bev's -- has he been tested for coeliac? I presume so since he's been through so much, but sometimes it seems to get missed over and over....

This all must be so hard on all of you; I feel for you. It's true that 'one more thing' on top of diabetes can seem just like IT -- the proverbial straw.

Things hit people at different times. Don't beat yourself up for feeling all this now. If you didn't have to feel it, you wouldn't be going through it. But please do, DO depend on this site for support.

My son is now 14, diagnosed only 18 months ago. But certainly his growth has made dealing with his numbers often like wrestling a snake -- or herding cats, as they say. It's had and I'm sure will have, lots of moments of despair...

Is your son in touch with other teen T1s at all? Does he facebook? I'm just wondering if it may be worth me trying to get my son to send him a note... I know they are all sometimes resistant, but if your son  is going through a hard time, maybe just touching base with someone else not involved could help? My son's a good listener, and an open kind of guy (most of the time!).

It sounds like you are right that if you all could get on top of this sickness then you could look at the future with less panic. I'm sure you are doing the right things, and your OH sounds so involved and part of it too -- this is a real bonus of course. Mine is too and I just don't know how I would cope otherwise...

PM me if you like to pass on info, but no worries if you think it's not right. Meanwhile stay in touch.

best,

Patricia


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## Tootsie (May 6, 2010)

Sorry for not replying sooner, I was offline while at work yesterday and am just back in again today!

I feel so much better after speaking to you all.  You have no idea how much just being in touch with other parents/people in the same situation just makes it seem easier to manage.

Yes he has been tested for coeliac - it was negative.   I have been googling like mad yesterday morning and see lots of informtion on diabetic gastroparesis (spelling!) - the symptoms completely match my sons to a T!

We have his 6 month diabetic check up coming up, at the last one the Consultant was very supportive and asked us to keep in touch regarding the tests he was having, but seemed to think it wasnt connected to his diabetes, and he is the expert after all!   But it would do no harm to mention this - it could still be the acid reflux though, his medication was changed from the omeprozole and we were told it might take a few weeks to kick in.

Re Facebook - yes he uses it regularly - but isint directly in contact with other diabetic teens.    My husband spoke to a co-ordinator from Diabetes UK just yesterday and has got a form to complete for him to go on the summer holiday this year - I think it would be fantastic for him to meet other teenagers - I think he is feeling his life is out of control, bad enough the diabetes - but the sickness just compounds it!!!!!

Thanks for your support, I will stick around as this seems a fantastic bunch of people!

Sorry meant to add - Patricia I think it would be a great idea if your son contacted him, being so close in age - I dont know how to pm yet (!) so if you were agreeable I would let you have his Facebook account for your son to contact him.


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## Akasha (May 7, 2010)

Tootsie 
I am not a parent so i wont say i know how you feel. 
But reading through and just wandering, what year in school is your son?
It may be that stress (exam stress) or even hormones could be causing his stomach problem (and diabetes) to play up. 

I was going to say that Diabetes Uk should be able to put you in touch with groups but you have already said about the summer holiday form. 

Hope he has fun (if he does go), and you are both feeling better now.


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