i feel like   non stop im so so tired

Matthew is 2 1/2 and has been having apnoeas for the last 2 years and there is no signs of improvement
hes on a apnoea alarm which is going off so much, its been worse the last 6 nights as hes just come out in a chesty cough.

he also suffers asthma so gets coughs worse anyway and also suffers silent reflux.

hes averaging apnoeas about 1 every 10-20 minutes some r self resolved which after he lets of a little moan but some r requiting stimulation

hes due another sleep study in 2 months time hes last one was in August.

we see the gastro team in 3 weeks time about his reflux as hes on 4 meds and they r not helping. we see the paed 4 days b4 he has his sleep study im march

its so tiring having to deal with these everyday.
he does have good weeks but we havent had good weeks or days for months now.

anyone else feeling like they need a whole 365 days to catch up on sleep

hope ur all well
HAPPY NEW YEAR

Natalie

Natalie,

My daughter is 14 and has her own set of problems so I know how exhausting caring for a special needs kid can be.  You need some respite care.  Is there anyone who can come in and help you so that you can get a good nights sleep or an uninterrupted day nap?  I don't remember if you have a significant other around to help you share the burden.  If you do, can you work something out so that at least a couple of times a week you get a full night's sleep?

Vicki


_________________
That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

I know how you feel as well.  My son has a host of health issues and it's been non-stop since he was born.  He's only 17 months now but had 5 surgeries on his esophagus and trachea by the time he was 14 months old.  There were months when he would only sleep about 30 minutes, then be up for an hour, etc.  I also work full-time so it was so exhausting!  Things have slowly gotten better though.  Of course, we were dealing with OSA so we had his tonsils & adenoids removed and now we're dealing with possible central apnea.  

Hang in there!  Brighter days are bound to come our way!

Does your insurance cover any type of home nurse care?  That way they could come at night and you could sleep also.  Just a thought.

Hi natalie,

 So sorry to hear you are having a bad run ( is there ever a good one with apnoea and reflux?) We had a depressing christmas due to all the apnoeas too. You could try the humidifier ( I got it in either jo jo maman bebe or blooming marvellous - cant remember) it is a bit noisy  but I have asthma and it helps me so should ease matthews breathing a bit.
I am now getting desperate trying to help josh but am at the end of my list of things to try - v demoralising. Its tough not seeing any light at the end of the tunnel and as I am 6mths preg too I am desperate for sleep. The reflux meds seems to be giving him tummy pains now too. Good luck with the gastro guy - let me know how it went. I am sure reflux pays a bigger part in night time disturbances than all the docs think. I wish you some good nights sleep.

Erica x

hello thanks
im sure reflux does play a part in sleep apnoea as well but its just trying to get all the info together and maybe findingout the causes i know when matthew gets ill hes reflux gets worse and hes apnoeas get worse so i do think it is all linked up.

well hes cough hasnt got as bad as i thought it would in past experiences. think the new inhaler dose has definately helped.

it must be hard on u as well being 6 months preggers
im desperate for another but i dont think i could cope with another with matthew the way he is.

hes had a high temp for the last few days and complaing of constant belly ache, hes poo is acidy and hes soo moanie.

but hey ho we r mums who have to just get on with it all

we have 10 days til matthew sees the gastro for the 1st time and its soo long overdue we have tried to bring him app forward but it enevr happened,

on monday we managed to catch matthew on video of one of his possible aspiration episodes  he had some medcine and then got breathless and started coughing, wrecthing, cough sounded fluidy/chesty, got camera out and managed to get the cough etc and him fianlly vomiting up thick white foamie stuff.

now im going armed to london a week on monday hoping for some help with his reflux.
alarm still going off to. just watching him now to see if he gets ill from this

From what you wrote, sounds like he is either aspirating immediately or he swallows it but it immediately refluxes back up and spills into his airways.  Difficult to know without doing a barium swallow study.  Good thing you were able to get it on video.  Good luck with the doctor!

hi sara have sent u the link

as soon as the medcine seemed to hit the back of the throat he started. hes had a upper gi which was clear. think he needs another videofluscopy done, had one in 2005.

thanks

J is coming down with a cold today and last night his sats were terrible, I cant believe what a difference it makes.
Natalie - you mentioned somewhere that matthews seisures were caused by his reflux? Do you mind me asking how the reflux causes them and  how was it diagnosed? I am interested as j has v bad reflux and sometimes I see him stairing into space in his sleep looking a bit 'funny' ?

We have a barium meal scheduled for nxt week (providing he will cooperate). good luck with your gastro guy. J is on omeprazol thats the strongest drug they can have for reflux. It might be worth a try even if its just for a few weeks to see if there is any improvement. Josh started sleeping much much better after 2 days on it although unfortunately it hasnt completely sorted him. The domperidone is also good I think.

X

hi ya
Matthew started having seizures at 8 weeks old. and they continued til he was 14 months. hops done EEG and ultrasound nothing showed up so was sent home, these then continued and he also would have staring episodes where he would start mini shaking and going into a world of his own, he had about 20 of these, these where said to be ok apprently. the bigger fits continued, they where like epileptic fits, he would go blue, all his body would shake, he would foam at the mouth, eyes rolled, these would last from anything to 2-12 minutes. at 9 months old he was dx with epilepsy despite the EEG'S all coming bk ok, he was started in Epilim but the fits continued, CT scan showed nothing so he was referred to t a neuro at great ormond street. we saw then when matthew was 13 monhts old, went over all his history explianed the issues, with feeding, weight etc and that the Epilim wasnt really making any diff to his seizures, they were not sure if they were epilepsy or related to reflux/pain/possibe aspiration episodes.
so he was admitted for a week and had loads of test.
another EEG was again clear and the PH study showed bad reflux, the VF showed abnromal swallow. and the sleep study showed apnoeas.
 
the neuro did feel that the seiures he was having was not epilepsy but infact due to the pain he had been having with the reflux, its the bodys way of coping with pain so he would fit (never heard of this b4). so they decided to take him off the Epilim and put him on 3 reflux meds, and he has not had a fit since. Great ormond street did say the fits where so much like epilpesy but all the tests have come bk ok, and the epilim wasnt working.
hes last seizure was september 2005 and hes been on the reflux meds since.
he had had a couple of weird epiosodes a couple of months ago which seemed like seizures but hes not had anymore since. but the gp did think these where related to his pain he has with the reflux.

matthew is currently on gaviscon, domperidone 6ml 3 x a day, lansprazole 12ml once a day, erthmycrin 0.5ml 4 x a day so hes on full wack of everything

sorry to hear J is poorly, it is amazing how a cold can affect ur 02 levels, hope he dont get to poorly with it.

hope i havent gone on to much here just wanted to explain the full story