Desperate Mum to son with UARS seeking advice

[BunnyMummy]

DeepBreathing, wow that has shown up so many more events....here are some pics from various pressures at the setting you suggested....

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one more

[Gideon]

Note: This still doesn't explain this extremely irregular breathing.

[BunnyMummy]

Geer1 thank you so much for such a lengthy informative reply. I really do appreciate the time people are giving to help us, I have browsed a lot of aponea forums and picked this one to post on as you all seemed such a friendly bunch, and well informed. I definitley chose the right place. If I am late in replying it is that I'm juggling everything and will reply more soon. Be assured I am reading everything and taking it all in. I have to be brief now, but have tried the mask myself, vent is fine, it didn't make me feel like I was hyperventilating so I don't think that is an issue...

[BunnyMummy]

Bonjour, yes I know....it seems there is so much going on The consultant originally said my sons case was complicated....even more so than he realised I think! He always focusses on the rotating sleep pattern, which is going to be a problem when he has the overnight test if he isn't in sync with the sleep period. He needs 12/13 hours in bed and try as a might to get him up earlier it is impossible, after the 12 hours is stressful enough he feels so ill. Despite being fatigued all day I can't manage to get him to turn in after 12 hours, it takes him 2/3 to feel properly awake for a start! I am sure that could be resolved if he was rested from sleep. So we have the erratic breathing, machine not picking up some events, and the rotation, with all the physical and mental symptoms that brings along....

[Gideon]

Do realize that by figuring this out, you will be helping us to help others.

[Geer1]

Has your son been tested for allergies or is it just believed that he has allergies?

Can you also explain what you mean by sensory issues? As in sensory processing disorder?

Another doctor that might be worth seeing is an internist. They are kind of like a general all around doctor but specialize in more complicated cases.

[BunnyMummy]

Geer1 - he had an overnight oximeter test at home, well two nights. No nasal canula or anything else. Results showed very erratic heart rate all through the night, severly fragmented sleep. He didn't have an overnight in hospital as due to the severe ezcema, I thought he would end up dislodging all the paraphenalia in the night (this will happen next week!) coupled with anxiety about staying somewhere unfamiliar. Consultant could see his facial make up which made it likely UARS, combined with symptoms and trialled him on cpap. For the first 9 days he was a lot better. Sleeping shorter periods, feeling refreshed, sitting instead of lying all the time, more mental clarity, managed to make a video for his you tube channel saying how much better he felt....day 3 was bad, but for the other 8 days, although he still felt tired, there was a big improvement. Then day 10 he started going downhill, nighttime sweats came back ( not every day but 1/4) brain fog returned, though not as bad, and despair as he felt he was going downhill again. Consultant cannot explain this and as I read this can happen I thought it would be his body repairing and in a few months he would feel better. But it's clear that isn't happening. Now back to 12 hour sleeps, waking unrefreshed, half hour-1 hour to get out of bed, unable to play video games let alone make a video, and pretty damn hopeless.

What I don't understand is this....the hyperventilation seems to be when he is awake, but after already being woken up, not the CAUSE of him waking....could it be anxiety? Panic attacks in sleep? He does suffer anxiety but have only known him to have one or two panic attacks. The data doesn't look any different on the whole in the first 9 days to now....only that he is sleeping longer. He still had the frequent wakenings and hyperventilation. Obviously we don't know if the cpap use brought about hyperventilation or if it was there before as he never had full psg.

I will ask for a copy of his oximeter test. We don't have one of our own to use at home now.

In these shots I assumed that was flow limitation waking him, but there is nothing to note going on when he wakes up....no aponea, no limitation, and the minute vent and tidal volume go up once he wakes. His respitratory rate goes really high too....I'm so confused! Oh and the test is 9th Feb unless we get an earlier cancellation. Can't add shots as over limit.

[BunnyMummy]

He is atopic, has ezcema, allergic rhinitis and asthma. I have always been told there is no point in testing him as it will result in multiple things coming up, because of the atopic bit. That his immune system will react to all sorts of things. He doesn't have severe allergic reactions or anything like that, and never had any issues with food allergy. He was given a rast blood test which came back with animal dander, house dust mites and grass. But I get the impression that was just picked out because of what I put on the questionaire that accompanied the test, as we have house rabbits and guinea pigs, hay in the house. I don't thinkthe test is very specific. He does have a high esonophil count which I know would contribute to fatigue, but he has been the since he was about 13 and always been full of energy. The pets never go in his room, and we have hepa filters in his room and downstairs where they are. Doctors would never refer him to an allergist, I don't think they even exist in our area on the NHS.

His room is a very small room with a slatted bed frame and I do worry about dust as it is hard to hoover in there well, and he sheds skin from ezcema. I hoover daily but it's hard to get everything. The filter on machine looks fine, and I've read it's only the same as breathing the air in the room as if you were breathing it without a mask. His ezcema is problematic but waxes and wanes, due to hating the feel of slimy greasy creams he doesn't moisturize enough sadly. There isn't much else that can be done for his skin apart from immunologic drugs  (methotrexate) which he doesn't want because of potential side effects. 

He probably has sensory preocessing disorder, not been diagnosed, but is overly sensitive to certain fabrics ( partly due to ezcema), and has other traits related to it too. He hates bright light now, but again this is a new things since being ill. I think the sleep deprivation just exacerbates everything for him. I have thought about the possibility of aspergers as again he has a lot of the traits. When he was first ill to me it was almost as if he had a breakdown so the first five months were spent with me focussing on mental health issues and anxiety, but then when I observed him sleeping the direction of things changed. Again with UARS there is hypersensitivity and anxiety which to me all fitted, hence my suspicious, especially after watching him jolting awake every few minutes or so....

[mesenteria]

I take it you have hypo slip covers and mattress covers, and that they are swapped out and laundered regularly, NLT once per week?  The laundry cleaner isn't the problem all by itself?Also, regular vacuuming, even if you have to get down on your belly to get under the bed, or actually displace the bed some.  Dust mites are really bad for many who suffer from allergies.  I'm guessing this is old news, but it never hurts to mention it in case someone is reading who doesn't know.

[BunnyMummy]

Yes all pillows and bed has anti allergy covers, I don't wash them that often to be honest, but changed the actual pillowcase and sheets at least once a week, sometimes every other day if he has had night sweats
I use an eco ball thing for all his stuff so no detergents, and it is line dried in the fresh wind.
The room is so small, with bed one side and a few small storage units the other, he doesn't even have room for a wardrobe. I couldn't get on the floor to hoover under bed as the gap is only a little over the width of my body! I do lift the mattress and try and hoover under slats to get to floor. It's used as storage under the bed as well with lots of boxes which makes it even harder. He could do with a bigger room but we can't move sadly. I have considered one of the beds where it lifts up and you can store stuff inside the base.
Dermatology told us not to be too obsessive about dust mites, that you can't eradicate them all, just a good hoover daily.... Not saying I agree with that, just that that's what we were told. He has a dehumidifier in room.
We have holidayed in various places over the years, where there is less clutter / dust / no pets, but sadly it never made any difference to his rhinitis or ezcema. Ok I guess we were only away a week at a time but all the same...