The Molly saga continues.......

Molly has her review at the hostpial today.

We have had endless problems since the last vist, her medication has been changed numerous times and we have been in and out of the doctors like a yoyo.

The appointment was useless. He suggested that we carry on as we are and he'll see her again in 6 weeks.

Molly is up at LEAST 5 times a night coughing herself blue and then after more relievers she goes to sleep for a while. This can be all night long though and we never have a rest and the poor little thing is really struggling - yet the doctor told me that it is a part of asthma and that's life. He said that I shouldn't forget that she is was born at 28 weeks and this is the result. She's 3.5 now - surely there has to be a way to make life better for her?

I cannot seem to get through to them how awful our life is. She isn't too bad during the day and of course the appointments are duing the day. Nights are truly hell.

I am tired and frustrated and don't know what to try next!!!! I feel like a broken record?

We've got private health cover but I am not sure if this would count - has anyone ever tried? I just don't know what to do next - I think possible instead of dealing with it at home I am going to turn up at A&E every time it happens so the get the proper picture.

I have said before but she is on:

Salbutamol - up to 10 puffs as required

Seretide - 2 puffs twice a day

Cromogen/Intal - 2 puffs, 4 times a day

Montelukast - Every Night

Cetirizine - Every night

Has anyone's child had similar symptoms that won't go away? How did you manange to get the right treatment sorted?

Thanks for listening to the moan again

Annie x x

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hi

sorry to hear molly is so bad and that you are feeling the strain of it. i remember when zack was that age and things were similar. i did find an improvement when he went on pulmicort (budesonide). also would it be better to have the cetrizine in te morning. especially as she is on singulair already at night. this might help as both work on the hayfever symptons. we also bought a water air purifer which we add eucalyptos drops to which helps to make the air more moist and helps with breathing. i take it you do all the obvious things like no pets, smoke, wet dusting and anti allergy bedding. (sorry if that sounds obvious). not sure what else to suggest. maybe A and E are an option. i know with zack at one time we had a direct link to our children's ward and could phone them and by pass A and E. also do you have 'doctors on call'? if yes take her to them at night.

i hope molly soon feels a bit better and that you get some rest.

deb

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hi Annie, Firstly i have to agree with most of what deb's has said, (cant comment on pets as i have a dog althou with no ill effect of shane). Maybe a change in GP if posible too as to me it seems his attitude stinks towards yourself, molly and asthmatics in genral.

A ray of hope thou for you, shane was also a prem baby 30wk thou not 28, and has been on many diff medications,(he is now on as much as he can have for his age/size(his tiny for age) and weight. At the same age as Molly, well from about a 1 1/2 till he was 6, we sepnt more time in A&E and the childrens ward it was more like home than home was. He has got much better, in the controling side of things mind, and now spends less time in the hos and off school. The only major change in medication made has been the combi inhaller, other than increased doseages ect.

Do you have someone else you can turn to when molly isnt well, a resp nurse,homecare team, Cons', ect, other than yur GP.

It is unfair on yourself, your family and more so on Molly to have to be going through this degree of suffering. Asthma isnt somehting that should be taken lightly, (shanes school have just learnt this also). Shanes resp nurse said asthma in its self can seem contridicting even in its own paitent. On one hand they could seem to be struggling, coughing, even as if choking, yet not having an attack of any form, yet you can also have no cough, very little or even no wheeze, yet be having a very serious attack, Her advice to us was, if unsure, or concerned, get them to A&E. Its best to have serveral trips to A&E than a very sick child.

Hope things do start to settle down for you soon and that molly no longer suffers as she is now.

Best of luck.

Shayrn xx

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I wish I had a magic cure for you. It can be heart-breaking to see your little one suffer like that. I remember when my kids were that age just like it was yesterday. Sometimes propping up the front end of the bed can help. I never liked to prop up the younger ones on pillows for fear that they would be too tired to roll over. But propping up our kids beds did help alot. We only propped them up about 5-10mm and it made a big difference. Hope Molly is better soon!

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Annie,

My heart goes out to you. If Molly is still this bad then you must get a second opinion or referral.

You can take your 'funding' or Molly's to another PCT and/or specialist consultant, anywhere else in the country. Just ask your GP for a referral.

I've done the same for myself via my GP. I don't have private medical insurance either. When you find a good specialist asthma paediatric doc then stick to him or her like glue.

I don't have any knowledge of good specialist paediatric asthma cons.But maybe others on this board do.

If the one child out of my three, - that still suffers from asthma, - had been as bad as your daughter at this age I would not have hesitated to get a second opinion.

Molly can't tell you how bad she is. But you can speak on her behalf.

Lots of love to you.

Mia

xxx

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I had to realy push to get my son to see a specialist . Where we use to live the gps were happy throwing steroids tablets and all the other meds at him constantly and allowing him a neb at home when needed. I eventually insisted and I never looked back. I have to admit he still needed the meds and steroids but having an itu pedeatric respiratory specialist, gave me confidence that it was the right treatment. As parent up all night and exahsuted you need advice reassurance and confidence you are doing everything right.

Push for a second opinion if you are not happy. The story you tell with coughing etc was similar in his younger days but once the asthma was controlled better I was amazed to see him sleep better and not so noisy at night but this was after his tonsils were checked, sleep study done which did reassure me that all I was doing was right even when he was rough and I could see no improvement.

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I can only say the same as the others if she's not right at night take her to the dr on call or if blue A+E. We went repeatedly with my older daughter until her meds were sorted out and then we had open access to the childrens ward where i could ring and speak to a dr and come in if needs be bypassing A+E. They kept her notes on the ward.

This may sound wierd but If you do go to A+E just tell them the truth that your absolutely exhausted and don't know what to do next as they can admit a sick child for social/parent education reasons as well as illness reasons ie mum needs a break because she needs to sleep for at least 2 hours and nobody will think any the worse of you! They'll then see what she's really like at night get reviewed by a consultant in the morning and it might help!

Marmite