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Post by vickia on Jan 12, 2008 8:57:45 GMT
Hi guys, sorry to be moaning but I really feel like I need a bit of a whinge. I know that most of you probably understand how I feel at times so I thought this would be the best place to do it! lol
For the past 12 months Thomas has had constant chest infections. This is partly due to his Downs and partly due to the fact that he aspirates food and drink into his lungs. We use Thick and Easy to try and prevent this but there is no way to stop it happening completely, short of him having a gastrostomy fitted, which I wont even consider! That, combined with the crappy British weather, means hes just about ALWAYS ill! I know he can't help it, the poor little man, but I am now completely knackered and fed up!
Thomas has antibiotics at least once a fortnight, which makes him grumpy and horrible and the infections mean that he doesn't sleep on a night. He gets up at the crack of dawn EVERY day so I exist on around 4 hours sleep a night.
We go to a family support centre , run by Mencap, on a Monday from 9.30am til 2.15pm which is lovely for Thomas. Its like a nursery setting where support workers look after the little ones while parents can have a coffee and a chat. Its great!! Other than that, I work Weds - Fri and try and fit in Thomas' many appointments around this.
I feel that I'm constantly running around from one appointment to another. Just in the next week alone we have 3 hospital appointments, Cardiology, ENT consultant and Hearing Centre plus portage and a physio appointment. Then we'll probably be at the GP's again about his chest. I feel a bit fed up by all of this.
I'm really hoping that over time Thomas' chest will get better. I've been told that once he's more mobile it will help but I can't see him walking anytime soon! Its a constant worry to me and I hate to see him ill. Does anyone else have experience of this sort of thing? Will it improve or is this just how things will be?
I'm really sorry to be moaning. I know things could be a lot worse and I am so grateful to have Thoms and love him to bits. I feel bad about whinging when I know things could have been so different if his operation hadn't gone well. He's doing so well in other ways and when he isn't ill he's a wonderful little boy. His smile warms my heart and he has such a cheeky personality. I wouldn't swap him for anything!
Thanks for taking the time to read this. It feels good to get things off my chest. I just hope you all don't think I've turned into a right whinging cow!! lol.
Vicki xxx
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Post by max on Jan 12, 2008 9:15:21 GMT
I totally understand that feeling of exhaustion. I'm lucky that Caleb is rarely ill but at the moment he has eczema on his face and an eye infection so I spend every waking hour applying lotions and wiping goo.... though thats nothing to what you have to go through. I've heard that as he gets bigger he will get healthier too so lets cling on to that eh?
Would it help to cut your work hours? Does Thomas get DLA? My job is killing me at the moment (like you said - trying to fit everything in is a logistical nightmare) so we're trying to get middle rate DLA and carers allowance so I can give up work for a couple of years, we'll be a bit skint but quality of life is worth it - I love my job but not the state of my life at the moment.
You whinge all you like love - you are totally entitled! Hope he gets better very soon. hugs to you all. Max xxxx
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Post by debs4 on Jan 12, 2008 9:20:59 GMT
You poor thing, its horrible to see your little ones poorly and it must be so hard for you. Gemma suffers from croup quite badly so I know whats it like to have lack of sleep and it does you know good at all. I really hope he gets better soon, and you get some well deserved sleep. Gemma sends Thomas a big kiss xx
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Post by pinkshell1110 on Jan 12, 2008 13:40:21 GMT
i felt exactly the same as you, when is this all gonna end, but trust me it does!!!!!!!!!!!!! charlie had endless chest infections and croup and usually ended up on oxygen and antibiotics. As soon as he turned 3 and was starting to find his feet things improved and last year he only had 3 chest infections and no croup ! His paed said as soon as he put weight on and started getting around things would improve and they did,and so did the endless hospital and doctors appointments all we have now is ENT,His paed cos of his size and the paed who looks after the DS side of things and school and orthotics.We probably have about half a dozen appointments a year and we used to have at least one a week. As for the sleeping side we still suffer unfortunately we cant seem to solve this problem ,but his paed said it isnt unusual for kids with DS to have sleep problems no medical cause though. Hope this helps it really does get better we didnt notice it straight away,but all of a sudden we had more time at home and things were alot easier. lots of love shell,charlie and jasmin xxxxxxxxx
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Post by lisajg on Jan 12, 2008 14:07:00 GMT
Hi Vicki
Big hugs to you and don't apologise for whinging, we all feel like that sometimes. My experiences with Harrison are very similar to yours and I also work Wed to Friday and try to fit everything around that. Most weeks I feel like it's a miracle when I make it into work!
Harry has always suffered from chest infections and we went through the same as you for the first 2 years, he'd have antibiotics, then get better, then 2 weeks later back on the antibiotics. For the past year or so he has been kept on a constant low dosage of Amoxycillin, he has it twice a day and touch wood(!) it has been keeping him well. This was recommended by Dr Patrick Sheehan (ENT expert who does lots with the DSA and also has a son with ds). At first I was really concerned about him being on antibiotics all the time but I have to say it has made a huge difference to Harrison's health. Apparently they do this for alot of children with ds who are constantly poorly with their chests. Harry has a repeat prescription set-up with our gp and our local chemist give me batches of antibiotics which aren't made up so that I can keep a supply at home and we never run out. Harry also has physio at home to help his chest, which I do with support from one of the physios at our local hospital.
If you find you don't get much support from your gp and you want an expert opinion then i would recommend emailing Dr Sheehan. He's very supportive and if you wanted to see a specialist local to you he could probably recommend someone, not sure where you live(?), he is based in Manchester.
Having waffled on for ages, I promise it does get easier. Harrison used to be in hospital constantly when he was younger, he finally started walking when he was 3 years old and being stronger and more mobile has made a world of difference.
Hope you manage to get some sleep soon and Thomas feels better. Take care xxx
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Post by claireyd22 on Jan 12, 2008 22:02:00 GMT
This is the place to have a whinge hun so don;t appologise x I really feel for you having to cope with Thomas having constant chest infections. George is just getting over one and it was/is really draining so you must feel totally shattered if he;s getting them all the time. I hope he gets better soon and you can get some well deserved sleep xx
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Post by max on Jan 13, 2008 14:18:28 GMT
My GP mentioned keeping children with DS on antibiotics all winter/all year round (I think he's been doing research since Caleb was born bless him!) You could ask your GP for it as it sounds like the kind of case where it's necessary.
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Post by vickia on Jan 15, 2008 12:40:19 GMT
Hi guys.
Thanks for all your nice replies. I'm glad that some of you can relate to my problems! It makes me feel better when I can see that some of you have been through it and come out of the other side. I'm glad your little ones grew out of these problems. I just hope Thomas will soon!
Thomas is still ill with his chest and I had to take him to the docs this morning. He's basically said that there's nothing more that he can do now for Thomas so he's writing to the paed to try and get us an app. I'm totally shattered as Thomas can only sleep for around 30 mins at a time at the minute. After that he has a really bad coughing fit which upsets him so he cries for ages afterwards, poor little man. :0(
With regards to DLA etc, we do get DLA and Carers allowance, but I really don't want to stop working because this is the only time I can get away from the kids and be an adult again (probably sounds really selfish!). Plus, it means that we can afford holidays and nice things with my wage. I wouldn't want to give that up for anything, even if I do look like a zombie most of the time. ha ha...
On a positive note, we saw the Cardiologist yesterday and she was really pleased with how Thomas is doing. So much so that we don't have to go back for 9 months!!!! Yipee! lol. She says that there is NO leakage around Thomas' heart valve so it looks like the repair was 100 % successful at this stage.
Must go, we have a hearing appointment this afternoon about Thomas' hearing aids. It never ends does it......
A big thank you to you all and big hugs from Thomas. xx
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Post by max on Jan 16, 2008 8:25:18 GMT
wanting to have a job and holidays and stuff is most definately NOT selfish - got to stay sane after all!!
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Post by lisajg on Jan 16, 2008 10:12:34 GMT
Hope Thomas gets his referral soon, and hope the appt went ok yesterday with the hearing aids. That's great news from the Cardiologist, good to get some positive news at a time when you must be feeling drained. Hope Thomas feels better soon and you can all get some sleep, take care xx
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Post by leeandali on Jan 16, 2008 18:53:31 GMT
Really hope Thomas gets better soon, chest infections are awful and they affect everyone..... Excellent news about the heart, you must be really pleased! Finlay sends a big hug!
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Post by katie29 on Jan 27, 2008 3:38:26 GMT
I fully understand how you are feeling, Marshall is nearly two and his sleep is still poor but is health is generally much improved only having two chest infections in the last six months. I am tired a lot too working full time on little sleep, but its worth it when he looks up at you smiling without a care in the world, an am positive as time goes on things will get easier xxx
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Post by shirley on Jan 28, 2008 6:54:28 GMT
AwwVickia, I am sorry you are having a hard time at the minute, I can only imagine how your feeling. Grace has gotten the synagis injections through the winter from she was born, these help to keep away infection and they work cause she has never had a checy infection yet. I am told that next year she will not be entitled to it but that her GP will definatley give her the flu jab which should also help. Try ppushing this.
Glasd the cardio visit went well , keep us posted, and rememeber we are all here for you, like max says .
Lots of love and hugs from Shirley & Gracie xxxx
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