Twin mum in dilema

Hello I'm new so sorry if I repeat on other subjects touched. OK My 20 mth old boys since July last year have had a persistant cough (worse at night as per usual). Within this time they have caught many bugs (as they do) and have had at least 4 bouts each of bronculitis the last 2 times our GP wanted hossie addmissions but we managed at home with steriod, Anti biotics and salbutimol (blue inhaler?) 10 puffs every 4 hours. We are awaiting chest xrays and have a consultant paediatrican appt this Thurs. The boys frequently (weekly) have intercostal breathing problems but we are getting better at telling now and step up the inhaler but I am gettin paranoid about being around people with colds because they get so ill when they catch them.

Gosh what I am trying to say is...yes there is a point to my rambling...what questions should we be asking the consultant and is it realistic/reasonable to hope for some preventative treatment? The steroid tabs make the boys hyper and aggressive (so out of character but at least their appeites return) and the ventolin only works in the early stages of their breathing difficulties...it doesn't stop the symptoms worsening though and we have had to give them so many antibiotics that I am starting to get twitchy about it. GP is very supportive.

Sorry long post but it seems a bit complicated to my tired twin mum brain lol.

Just a note..I know I can't get medical advise from these postings but what I would like is an idea of relevant questions so I don't waste the consultants time.

Many thanks

Jane

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Hi. No matter what you ask you will niot be wasting the consultants time. If I were you I would just mention if they thing it would help for them to use a preventer and see what answer they give you.

My son had asthma (viral wheeze at the time) in Dec 05 and wasn't given a preventer until Sept 06. This was after 4 hospital admissions, 1 boubt of pneumonia and 10 courses of antib's and 5 courses of pred.

Can't remember how we got the preventer or if it has something to do with age but he was 20 months at the time and we started on becotide 50mcgs 1 puff am and pm then it was gradually increased to 100mcgs 4 puffs am and pm then added singulair (this is not until 2yrs) and reduced to becotide 100mcgs 2puffs am and pm. It takes a while to get the right 'mix' of meds but please don't feel you are wasting anybodies time by asking lots of relevant or irrelevant questions.

If you are not happy with anything you have been told go back and get a second, third, fourth visit. I have as have many others I'm sure.

I hope your 2 are ok at the moment

Sarah

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Hi Jane Its no wonder you are tired It must be hard going with two kiddies with asthma at the same time It does get better I promise you As the boys get older they will be able to tell you how they feel and as you have already discovered you get used to your own childrens warning signs of asthma and start treatment all the quicker You should try phone the asthma nurse (number on the home page of Asthma UK website) they are very helpful and will stay on the line till you are happy with things they will maybe give you some useful pointers to ask the Consultant Hope things start to improve for you and remember to look after yourself as well Take care

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Tomorrow's a big day

Thanks for the replies I have spoken to one of the asthma nurses on the helpline number..wow they are so helpful. I really has boosted my confidence and given me pointers for our appointment with the consultant. I feel that we won't leave until we are happy and with some sort of plan in place. It was also nice to hear someone agreeing with us that this wasn't a normal pattern of behaviour.

Brian and I are exhausted but determined and lets face it..it can only improve. For the first time in 6 weeks the boys have eaten eveything I gave them today and although they still tire very easily it's nice to see an improvement we may be able to build on.

I'll let you know how we get on and tanks fo the support.

Jane

xxx

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I have 3yr old twins with asthma if it's any consolation parents of 20mth old twins without asthma are usually all at breaking and exhaustion point when they reach nearly 2!

Are you a member of a twins club? They can provide a lot of support or try the tamba forum as having multiples esp multiples with health problems brings a whole different set of issues than just having a singleton.

Don't all jump on me I know this i have older singleton and twins all with asthma!

The most important thing is to make sure that 2 of you go to appointments one to play one to listen and that dr's treat them as individual patients as there is a temptation to lump them in together treatment wise. I also keep written records as it is really easy when exhausted to muddle up who's had which bug which inhaler when and who wheezed on which days!

It does get easier and eventually you do get sleep.

Hang in there!

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Tell me about it...

We both laughed about the breaking point comment..and sooo agree..I had the day from hell with my two today. I found myself shouting 'Shut up' at Owen today because he was screaming for an Easter Egg he knew was in the cupboard..I have never shouted at them before and was appalled at my behaviour..but yesterday's appointment was really tough. We were sent away and told to come back when they were 2 years old..despite being well informed we got nowhere. He said he didn't know whether he was treating asthma or a viral infection so couldn't do anything. I was sooo frustrated.

My GP called today and she's not happy either..the xrays have come back and although there is evidence that their lungs are inflating fully it is also clear that there has been/is a significant infection in both children. There fore she is referring us to a respiratory consultant now instead of paediatrics. I am totally confused but glad we will have a 2nd opinion. I am so tired I don't know what to think but glad we will see someone soon so I need to get my head together. Added in to all this I have not long been out of hossie myself as I developed Horner's syndrome and I have a neurological problem that gives me daily (yes daily how cruel is that) migraines. We cannot get the pain under control so I really need to get the boys better..that way at least I can feel I have achieved something. It also makes dealing with all the doctors harder because like you mentioned Marmite they do lump the boys together and hadn't even got Owen's hospital admitance noted down..just Sam's etc..I am not on my toes as much as I could be normally. Brian is lovely but these things aren't his forte and he is very quiet at appointments.

Ah well wish me luck..I could do with some.

Love

Jane

PS can I have a big hug please....

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When we go to see the consultant now i have three pieces of paper detailing meds, how many times they are using reliever in week and any allergic reactions, hospital attendances infections etc one for each child and a list of general questions.

I just say whether true or not i'm sorry they had me up all night i'm sleep deprived and have no brain today and hand them the paper and let them ask me anything they need to ontop of that. It's just easier all round. I ask them to write down anything they tell me because i don't remember it and he seems quite happy to sit and tick off questions as he goes and has even commented it makes for a quicker consultation!

My girls were all labelled as wheezy babies,viral wheezers until they hit three the asthma label was never used. Some babies are wheezy and don't have asthma. It's just a name anyway and as long as they are well and you continue to seek help from gp/hospital when they are not don't worry about labels at this age.

On a side issue if you are finding it hard have you heard of homestart an organisation who help support families with stress so as a mum of multiples with a health condition you are covered! They provide you with a volunteer a few hours a week who can do whatever you need, help you with the twins, allow you to go and lie down and have a migraine in peace, go to toddler groups as an extra pair of hands and also run family groups with play workers and organise trips to Zoo's etc.My volunteer comes to hospital appointments with me too.

To other parents finding it hard you don't have to be a parent of twins anyone whose finding it tough with a child under 5 can contact them.

You can self refer to them if you find the number in the phone book or but it's probably best to contact your healh visitor can refer you. They have been a godsend to me and i'll be really sad to lose my volunteer when the twins start school in Sept.

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Return to nursery gulp

Well Sam and Owen had recovered enough to go to nursery today and I am really anxious about it as they will probably pick up another cold whilst there..as they do at this age. I only have the nursery place available for another few weeks and they love going. Saw 2 other kids with colds there and thought 'well I can't keep them away from other for ever and maybe this time they will just get a normal cold and that'll be the end of it'. It's hard when your confidence has been shaken but the Health Visitor felt it was OK and I am so tired.

They are still not eating brilliantly but we are getting some food in them even if it's not at every meal time. I just try and make what they eat as packed with vitamins as poss to build them up against the buggie wuggies lol.

Am waiting to see the respiratory consultant now but GP says the waiting list is only 3 weeks so we should hear soon. I am taking all your advice on board for this check up and am keeping seperate notes both children etc as suggested (good tip Marmite).

I'll keep you posted..any suggestions happy recieved.

Jane

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A huge thank you

Well I did the lists as Marmite suggested and it worked. The consultant we saw this time was brilliant and even asked how me and my partner were coping...very refreshing.

I got a list off the GP of all their illnesses and as she keeps really good notes this helped explain where the infections and crackles were in their lungs were. He told us that the boys rib cages were flared at the bottom (we had pointed his out at previous hosp appts but had been ignored) and this was consistant with prelonged breathing distress. I also mentioned about their lips and nails turning blue (even when breathing ok-ish) and he explained how it was all connected..once again this was previously dismissed.

So we have steroid inhalers and once the 5 day course of predisorone ends they can start on those. He will now monitor them over summer and next winter then ease off the inhalers and see if the problems return. If they do then he will start further investigations.

I am so relieved and quite confident that once he boys get a chance to recover fully they will be able to fight off further infections normally. However if we are unlucky and this doesn't happen we now have a great consultant on board to help us out.

Thanks you for all your advice and help..it really made a huge difference and I think we wouldn't have got to where we are now if I hadn't hade the chance to reflect on what you all said.

Now time for some R & R for all the family I think lol.

Thank you thank you thank you

Jane

xxxx