[kizzybr75]

Hi - Finn, my 4 year old Son was diagnosed 4 weeks ago with Obstructive Sleep Apnea following a sleep study! It has taken us 2 years to get here...many trips to the hospital as he was getting high temperatures that we couldn't control...
Finn started school last September and the school were really concerned as he was constantly falling sleep during the day, lack of concerntration and extremely emotional, the slightest thing tipped him over the edge and once he starts crying he is very hard to calm down!! They wrote a letter to Finn's consultant and hey presto things started moving pretty quick.... he was sent for a sleep study which was a real eye opener for me, I hadn't realised how bad he was during the night, thrashing about, shouting, talking, sitting up and literally throwing himself across the bed - I was scared stiff - didn't sleep a wink, I ended up in bed with him as I needed to comfort him.
He was then diagnosed with OSA and sent off for a CPAP, which we have now had for 2 weeks. He is a little star, he goes to bed with it on each night (sometimes there are a few tears) and falls asleep... but early hours of the morning he screams in sheer terror... wondering what the hell is on his face.. I take it off immediately and he is shaking and needs calming - I refuse to put it back on as this could scare him so much that he refuses to wear it full stop... It's heart breaking... but I need to be positive, it has a great success rate and he will feel so much better soon, he'll grow (currently very small), he'll eat (either feels sick or falls asleep), he'll stop wetting the bed (can be up to 3 times in one night) and will get some energy to be able to run in the park after school with his friends, he will get the quality of life that he deserves as a 4 year old!! instead of being a crumpled, crying, frustrated, tired little boy!!
There just isn't any support out there for parents of children with OSA...
thanks for reading
x

[threewheelweave]

Hi kizzybr75,

Thank-you for having the courage to tell us your story it must have been really hard to write it down - hopefully having spelt it all out it provided a little relief to see it in black and white! This forum is full of great people with a wealth of combined experience and hopefully you will continue to find the support and encouragement from all of us!

Some of your account brought back deep memories of my own restless sleep as a child - I had fights in my sleep, ripped sheets with rugby tackles, talked all night, sweated until I was drenched, had screaming fits and sleep walked regularly.
Then little was known of OSA its study may have been in its infancy but it was difficult as when I woke I too was tired and grumpy - hyper sensitive and as I got older I went through a very introverted phase.

I bet you are so relieved to know what is going on, as a parent you'd rather the problem was yours than with your offspring!

As an idea have you tried a reward system for your son; collecting stars everytime he goes to bed with the mask, a full week gets a larger reward (something he really likes to do / have etc). Although he is only four have you explained what is happening to him? You may be suprised that just knowing in simple language may help him adapt. Our kids are amazing sometimes they accept things that as adults we find so hard to adjust to!

Before bedtime try no TV just read a favourite story or sing a short song together - make it a calm time. If he likes planes tell him he is your little star pilot and all pilots have to wear a mask! Try and make it "normal" and "fun".

Thank you again - keep us posted how you're getting on and that positive attitude will stand you and little Finn in good stead.

Come on everyone lets post up the support this lady NEEDS!

Take care

TWW
UK

[countyDownMum]

Hi Kizzybr75, I have just read about your little boy having OSA and hope he is feeling better Your story has given me inspiration and much needed courage as although I am 60 yr. I have been informed I have severe OSA and have spent lots of time waiting for hospital appointments and then a further 5 months for a machine. I had my pressure recorded by a special apap this weekend and will also do an oxi meter test tonight. Then I return both machines on Tuesday when I will be issued with a CPAP that I can keep. The 1st night I used it with the nose mask felt very strange so I can understand how frightening it would be for a child. I managed better 2nd and 3rd nights and already feel I have more energy and am less ifatigued. I hope your son is a lot better now and more used to using the cpap Indeed I look just like Gonzo out of MUPPETS, when I go to bed. If your son could relate to cartoon characters or even Darth Vader it would appear more natural to him, good luck anyway. My 2 sons are still at home and both love computers, both single so I have no grandchildren. Graeme my eldest son found 'The Muppets' on the BBC web site and I have enjoyed watching the various stories of them, I am sure your son would love to watch them too. This would make it a lot less frightening for him.

My sister has a little grandchild aged 4yr last January and I visit her often so know how terrified she would be if she had to wear a mask and use CPAP.

I have posted a short diary of my 1st experience using CPAP on UTube to try to help others. My name on Utube is sdt-candy. I am getting used to using the machine at night so know how hard it must be for your son.

I attend the local leisure center and am trying to lose weight which I am told will be easier to do now that I will be using CPAP machine.

Once again many thanks for you having the courage to explain about your little boy and I sincerely hope he is feeling a lot less tired and able to play more with the other children. Give my love to him. xxx

[Richard]

Hi Kizzy,

I am so sorry to read of your young lad, Finn. You don't say if he has had his tonsils and adenoids removed, that is the standard remedy for young children with respiratory disorders.

You might like to have a look at:


http://www.sleeping.org.uk/Paediatri...p_Section.aspx

and www.medikidz.com, which explains childhood ailments in a child-friendly way: some grown-ups may be able to understand it, too.

kind regards

Richard