I get so fed up with having to remember to give ds all these medicines every day

[emkana]

Inhaler two puffs twice a day which is torture unless I catch him in deep enough sleep so that he doesn't notice.

Prophylactic AB's three times a week via syringe, also no fun, via spoon he would
just spit it out.

Plus Singulair granules mixed with yoghurt which he's also not keen on.

I know it could be alot more and lots of people have to give more but I still wish I could have a break from it sometiems.

And more importantly he could have a break from it.

Also worry about side effects sometimes.

Yes I wish I didn't have to too but then I think that's what keep dd healthly, and the physio helps prevent infections, but the nebuliser is like torture 2x day ( for me and her ) as she hated it so much

Then I think of those in a different position with overnight feeds etc and think we can cope atm.

Ah medicine, me too, some days I feel like all I do is dole it out to DD. Her ordinary regime, although its a lot, I am used to. But its when she's put on anti biotics or something (thankfully not often)then it feels overwhelming. On a positive note, she will have to take some of her meds for life but there was one that had four times a day and she's just been taken off it as its something they only need as babies. So it is four less a day but did I feel excited like I thought I would? No I felt a kind of anti climax as we have to go back next week for more blood tests to check she doesn't need it so I can't really celebrate till then. And I feel strangely sad, like its the end of an era. But that is just bonkers!Anyway, I understand what you mean!

Re the side effects thing.

They have to put everything that has ever been reported on those dratted pack inserts. I know, I used to have to write the damn things. Even it it was a 1 in a million cases. In general the potential effects of nottreating are far worse....hard to keep that in mind I know.

I know it isn;t the same because dh is a grown up, but he is on so many tablets now we need a check list. He takes about 12 in the morning alone. When he went into the hospital last the doctor saw our printed list and said how nice it was to have an organised patient. I had to explain to her what some of the drugs were used for Crapola really though, isn't it?

I do the lining up the syringes thing too! When DD was tiny I thought I'd never be able to go out and about but she's got so used to taking her meds that she comes and opens her mouth for them when I show her the syringe. Its good but makes me sad too. Like the fact that she starts to struggle when she sees a needle as she knows only too well that they hurt

know what you mean.

i am going away with the girls this weekend.

i still havent packed the medicine bag

2x ventolin (could judt take one, but they have their own ones)

1x clenil 50

1x becotide 100

1 bottle of loratradine

1 tube of aveeno

1 bottle of balneum bath oil (always leaves residue everywhere)

tube of hydrocortisone (because they want to go swimming and i have to battle the benefits of swimming vs skin attack)

1 bottle of eyewash+eyebath

plus usual toiletries.

Oh Em. I used to have a chart pinned on the fridge for dd. Twas a PITA. We also had the 'recipe' for her fortified formula. And getting hold of decent syringes that would stand the washing...

dd does all her own now which is fab in a way but makes me sad too.

Try not to worry about the side effects. After all, what's the alternative?

Where do you all get hold of syringes? Atm my friend steals them from work for me! The chemist will only give one with each prescription but they are often not the good purple ones like you get from the hospital and alSO,dd has to take medicine in varying amounts 12 times a day so one syringe each time doesn't cut it. There must be a better way to get them.

At least I don't have to sterilise syringes anymore.

dh bought loads back from the hospital with him

including a little dinky one.

Our nurse specialist gives us bags full each time we go, try asking when yu next go...

I used to get mine from the nurse practitioner at our GP's surgery. Or 'aquire' a supply from the hossie when we were inpatients.

I've also paid for them from Baxa. It was a long time ago but I think they were about £20 for 100.

We always take as many as poss back when we have to be in hospital, the purple ones are special oral ones I think and they wash well. They chuck them away after use there so I just rinse and bring home all the ones they've brought in for DD's meds. Annoyingly my friend has just got me a load of teeny 1ml ones but I needed them for the one she's finally been taken off so don't need them anymore, typical! I've been struggling with just ne of those for weeks as they were reducing her dose gradually and it went down to 0.25 of a ml!