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Original poster

doctor appt friday for DS (sicky, off-balance, bad ears)

1000 replies

EdgarAleNPie · 23/02/2011 18:15

right - he's had an anti-biotic ear spray for two weeks. he has been particularly sick the past week so its doing bugger all

my plan for friday is to ask

-for heavy oral anti-bs to realy kick the infection (if it is bacterial, as if its in the inner ear an exterior spray won't touch it).
-for a referral to a paediatrician (which i can always cancel if he gets better before it coes through)

  • anti-emetics/ anti nausea pills? he's been keeping very little food down. quite thin.

how does that sound for a plan?

he already saw audiology, they said 'yes, there's fluid in his ear.' is there any point in seeing them again?

He's now been down with this since November. Gone from running and kicking a ball to staggering around the house and falling over. can't manage more than a few yards without support.

ok, any thoughts?

OP posts:
RumourOfAHurricane · 08/03/2011 20:59

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FriggFRIGG · 08/03/2011 21:07

still thinking of you all,
sending positive thoughts and love.x

CharCharGabor · 08/03/2011 21:15

Sending good vibes and love, hope your ds is doing ok and you are as well.

zonedout · 08/03/2011 21:24

have just read this and wanted to say i am thinking of you and saying a prayer for your ds. what a shock, it must all be such a terrible nightmare. so sorry, wish there was more i could do.

caramelwaffle · 08/03/2011 21:26

Hoping you have some good news x

SheWhoMustNotBeFlamed · 10/03/2011 10:07

Hoping and praying here, too. Please let us know if there's something you NEED, or that would HELP to make the stay easier.

RockinSockBunnies · 10/03/2011 10:12

Thinking of you and hoping that you're doing as well as you all can be x

ChickensHaveNoEyebrows · 10/03/2011 11:36

Thinking of you x

25goingon95 · 10/03/2011 12:21

So sorry to hear this edgar, keeping fingers crossed for you all. x

Original poster
EdgarAleNPie · 11/03/2011 00:18

thanks guys!

we are back home again (i didn't take internet with me, but will next time)

it is a jelly lump that is probably attached to his brain stem :( i think it was a Medella blastoma but we have to wait to know for sure.

he's had an operation (third ventricular endoscopy) to alleviate the pressure of spinal fluid building up. it went well. he tanked a bit coming out of surgery....very frightening.

the neurosurgeon and level of knowledge on the ward seems really great . but the facilities are crap! - only one loo with kiddy seats etc.

the Bf is for DD2 (7 months) who was in with me - she really isn't weaned enough to leave and she keeps DS happy. i got about in the end with a front-carry sling for her, rather than pushchair which there is no room for on the ward. She was bloody brilliant in the way a cheerful baby can be :) I may express some for him anyway because i think the lining has gone from his tummy and the steroids are causing pain. It'd make me feel better anyway.

Next time we hope to stay in the ronald macdonald house thing, though i was in Ingelby whilst DH stayed with DS all night. it is bloody boiling on that ward - thought it wasn't helping his swollen little head (very swollen, it looks so scary even though they said that level was to be expected)

next tuesday he's in for the removal. have been briefed on possible side effects, and he will need chemotherapy. it is ironic that i was very precious about his hair and didn't cut it before it stopped him seeing out!

There was another woman on the ward who i would swear was a mumsnetter....(very cute daughter with hydrocephalus) >wave<

will read through tomorrow morning as there is lots of practical knowledge i could use - was in total shock on the first day and didn't take in much, but now i'm ready to get on and try to care for him as well as possible.

OP posts:
Joolyjoolyjoo · 11/03/2011 00:30

You sound like you are doing brilliantly (that sounds patronising, but I don't mean it that way) I really admire the way you are dealing with this, and I'm sure you'll get a good outcome.

Neurosurgery seems very scary. Years ago, my mum had to have brain aneurysms clipped, and the prognosis was guarded due to an underlying illness she had. But I had great faith that the surgeons and doctors who do this kind of thing are really skilled, and it is routine to them despite being horrific for us.

I don't have a lot of advice, but I always found it helpful to find out as much as I could about the condition. The more I knew, the more I felt I could ask/ understand.

Will be thinking about you all. Keep us posted if you get time x

TheFallenMadonna · 11/03/2011 00:46

Every possible postive vibe coming your DS's way Edgar. Take care.

Valpollicella · 11/03/2011 00:55

Edgar, huge best wishes for DS. Will be keeping you in my thoughts x

I am literally down the road (if he will be at the same hospital) and I am off work on Tuesday and Wednesday so if I can do anything for you please let me know. I'm more than willing to help out in anyway possible. I hope that's not too weird a thing to say/offer Smile

FriggFRIGG · 11/03/2011 08:20

thinking of you all,and sending every possible positive thought.(i dont pray,but i have friends who do,and they are focusing on you too)

i wish i could offer you something more tangible,my DD is the same age as your son and my DS is just a month younger than your DD so i feel oddly conected to the position you are in(im sorry if that sounds too weird)

i would express some milk for your son if i were in your position.it's lucky you're feeding your DD and are able to do this for him,it could really help him.you could always stick it in a smoothie or somethingGrin

(and dont forget to look after yourself too.xxx )

itisnotgoingwelltoday · 11/03/2011 08:23

Thinking of you xxx

bamboostalks · 11/03/2011 08:25

What a tough time for your little one...and for you all. You will come through it though, praying hard for you all. You sound very positive and strong, I'm in awe really.

ILikeToMoveItMoveIt · 11/03/2011 08:35

Glad to hear you are at home for a few days, having time at home feels wonderful after the grind of a hospital stay doesn't it?

You all sound like you are coping with the enforced situation really well. I remember feeling totally shell shocked for a few days when we arrived in the hospital. The facilities were shocking but you soon realise it is the care and expertise which is important.

When you are back in the hospital ask the Doc's, pharmacists and nurses about giving your ds a probiotic - a lot of them are very open to it.

The Ronald McDonald houses are an amazing facility. When ds was having a good day we used to take him back there for the day and night and just returned to the hospital for his meds if they were intravenous (sp?), or would take them with us if they were oral. I thought I would mention this just incase it is an option for you at some point.

Good luck to all of you and especially your ds, you will all be in my thoughts xxx

Alibabaandthe40nappies · 11/03/2011 10:10

Edgar you sound amazingly positive. Enjoy your time at home this weekend, and I wish you and your DS all possible good luck for Tuesday. xxx

ChickensHaveNoEyebrows · 11/03/2011 12:24

More good vibes coming your way xxx

eastendmummy · 11/03/2011 12:37

Thinking of you and your lovely ds xx

herbietea · 11/03/2011 12:52

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Buda · 11/03/2011 13:02

Very pleased to see an update. Am off MN for Lent but keep checking in on you and Rindercella.

I don't have any practical advice except to say to look after yourself too. I am sure that between DS and DD you will be shattered and that is without the stress of everything. Take a good multivitamin. Drink lots of water. Eat when you can. Sleep when you can.

whomovedmychocolate · 11/03/2011 13:25

I'm sorry he has to have further treatment but glad that you are all making it through this. :)

Try and get as much rest as you can (and him too obviously) and wishing him a speedy recovery. :)

Doyouthinktheysaurus · 11/03/2011 13:35

Oh, Edgar, what an awful experience for you all...

So good to see an update, I have been checking. No practical advice to give but just wanted to send my best wishes to you all.

Look after yourself and I really hope the op goes okSmile

MotherJack · 11/03/2011 14:52

Glad you are home for a few days. It will do you the world of good to be out of there. How is he feeling in himself? Part of my son's condition meant his cerebro-spinal fluid was blocked and I understand from adults with the condition that it can be an odd feeling when the cerebro-spinal fluid flows again and it may take some time for the pressures in his head to readjust.

I suppose that you will be a great judge of the things you will need to take now you have seen the facilities for yourself. My son's ward had fab facilities, but oddly only one child's toilet too!

I fully agree what Joolyjoo says - the surgery is routine to them, despite it being horrific to us. Take things one step at a time though. A little bit like you, my son's surgery was not the end of it (but not the same thing).

You poor love. Can I just say that I think you are absolutely brilliant handling it in the way you seem to be.

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