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Another winters on its way and I can't cope.(9 Posts)
Hi - sorry to hear this. My only thought is have you asked for a consultant immunologist to assess your dd? Immunologists (not allergists or haematologists which they might try to refer to first) look at the whole child and test for all sorts of things I had never heard of until I had the testing and see if there are reasons for infections etc (low of missing IgA, IgG levels etc, or low pneumoccoccal levels). My immunologist also does a monthly joint clinic with a respiratory consultant which was amazing. It took many years of very poor health to get this testing, diagnosis and treatment and I would never have known to ask for such a consultant. Your gp can refer you but unless you live near a larger hospital you may have to travel to see one, but worth it. I am on a prophalactic antibiotic every day, have a letter to give to any gp or hospital inpatient visit to explain what treatment I will need (higher dose of medication, longer dose), had various immunisations to help and so on. And yes, for me winter is worse. I am much better now as I increase antibtiotics before I get ill - and know my symptoms at an early age, at a stage when my gp would never have treated me.
Sorry to talk about me, only way I could explain it.
Agree with cmot.
Push for a referral.
My son was constantly ill for his first 7 winters.
He, like your daughter, was ill from sept to march every year.
It's deeply upsetting and exhausting.
We were referred to a great respitory paed.
He put ds1 on a profilactic AB (7.5mls) per week and it really worked. This year is his first year off it in 3 years and we are seeing a difference but he is 9 now so his immune system is better than it was.
The AB was called azithromycin and he had 2.5mls x 3 per week
He hasn't used an inhaler in months and months and his excema is also much better.
Ds2 is now suffering much the same way...is off pre school now with an awful chest infection/viral wheeze
My only comfort is that it does seem to get better with age.
I hope your dd feels better soon x
My ds coughed constantly for a year with all sorts of things tried before a gp did an xray and found he'd collapsed part of his lung due to chronic infection plugging it. Fortunatly, the respiratory consultant was brilliant, and really tried to track down just what was going on. 6 weeks of high dose antibiotics, months and months of chest physio, and new inhaler scheme got rid of the initial problem, but he was really left vunerable to chest infections. Eventually, it was decided that he just produced too much mucus and couldn't shift it, so was prescribed Sudafed to help dry it up, and the last couple of years has been ok if we jump on things fast. But as the consultant had him tested for cf and immune system problems we knew it couldn't be anything big iyswim.
In your place, I'd be demanding a consultant referral, and then ask them for a long term plan to keep your dd out of hospital.
Does he see a respiritory consultant?
There is an asthma thread on here for virtual support when you need it.
The key thing is getting the medicine right which is easier said that done I know! Ds is on seritide and singulair now as well as a daily antihistamine which has made an improvement so far this winter
I think it is worth asking about the x-ray. Once they saw the patch on her lung they definitely started taking things with dd more seriously. Before that it had been nebs, antibiotics, pred and take her home. Which only seemed to be a short term solution. The longer hospital admittance and iv antibiotics definitely made a drastic improvement at the time. She actually got some time between infections and got a bit stronger.
In general though the improvement was gradual. Bit by bit we noticed she was going longer between attacks, her appetite started to improve etc.
We delayed a bit sending her to school (in Ireland so no pressure to go at 4) We sent her to pre-school at just turned 4 and she started school at 5.
She missed a lot of pre-school due to asthma and actually missed the first week due to being in hospital with it. We knew we made the right decision re:school.
She started school last year and did miss quite a bit but from Sept '10 to today she has only had 3 hospital admissions whereas in the 2 years previous to that she was sometimes in twice in a month.
It is an old wives tale here that these things go in 7 year cycles. I am starting to believe it a little now as the closer she gets to 7 the better she is.
Unfortunately she has started getting tonsillitis this year but it doesn't seem to bother her and anti biotics sort it out.
Hi pink, no support unfortunately DP works away weekly and my family isn't 'helpful', friends think I'm the 'can cope with anything type' and I tend to avoid them when DD is ill as I'm one of those people that people tell me all their worries and I can't deal with Thier worries aswell.
We tried singulair last year with no affect unfortunately.
She had a xray before she was one, Would it be worth asking for another one?
Did your DC improve gradually or did you suddenly notice a difference?
Dam accidentally pressed post, I shall continue with my despair.
List of everything she's had/been on and all the GP and hospital visits. She tends to say let's do a longer course of antibiotics and see her in a month or two. But she is on antibiotics constantly so what goods 'longer' going to do.
I'm so fed up and dreading loosing my happy carefree DD again for another 6 months, don't see how this year will be any different. She's already started with the meds and GP visits and the sleeping and regressing the progress she's made this year.
She has a hospital visit on Thursday to discuss being discharged as she's had a good 6 months, failing to see its this 6 months that the problems are with.
Sorry for the rant I don't expect anyone to reply, I just needed to write my feelings down and make them visible to help cope with the impending struggle we with face in helping DD get through the next 6 months. All the hard work she's done this year, learning to put her shoes on and counting to 7 will be lost again, all the weight she's put on will be lost, all the skin thats settled will all thicken, bruise and open again.
I can't cope with it, she manages, she sleeps, reverts back into herself and does her puzzles, but the struggling breathing, itchyness, not eating is heart breaking to watch. And no-one medical will actually look at her and realise she's suffering. They see her for one appointment and forget about her.
I hope that she won't have another 6 months like last year but I can see it happening all over again.
Hope getting this out in the open now will clear my head and help me focus on the appointment on Thursday stop them from discharging her as 'well' when I know she's not, and won't be all winter long.
Oh clutchingpearls I really feel for you. My dd1 is now 6.5 but at your dd's age she was in the exact same position with the asthma and eczema. Seeing them like that just drains the life out of you.
My dd doesn't have diagnosed SN but is a very highly strung, anxious child. I think as a result of all the hospital stays, middle of the night dashes to A&E etc.
Do you have any support in RL? I found it so difficult as no-one is my family or circle of friends had dealth with this level of illness in a child so found it hard to understand how utterly emotionally and physically drained it leaves you.
The asthma support thread here is great for hand holding through the bad times.
My dd is also on Seretide but she takes Singulair as well and I think her symptoms improved on it.
When your dd is ill does she have a chest x-ray?
When dd was younger she kept getting chest infections ancd never being quite well. Once when she was admitted to hospital they gave her an x-ray and could see a patch on the lung. They put her on IV antibiotics and monitored her until the lung was clear.
It made such a difference as the oral antibiotics hadn't been clearing it and she was lurching from one bout to another.
As regards the eczema we have been using products by La Roche Posay and have noticed a great improvement in her skin.
There is light at the end of the tunnel though. DD is 6 now and is vastly improved on what she was like at 3. Both her asthma and eczema and well controlled and she is eating and sleeping better and has grown so much in the last 2 years.
DD2 3 years has SN that cope with fine and she generally is a very happy, carefree little girl.
But I struggle every winter, she is an asthmatic on seretide and atrovent that gets constant over winter. Severe eczema and recurrent chest/skin infections.
She ends up on endless antibiotics, steroids, creams, wet bandaging, down the GPs on an nebulizer, hospital stays. She ends up sleeping 20 hours a day, not eating, not playing, looking miserable for 6 months a year.
But no-one seems to change anything GPs stick her on another cream or course of antibiotics on top of the ones she's on. Hospital send her home to 'recover' as soon as possible and don't realise she won't recover until May/June. Her consultant nods when I tell her she's not been well since last visit and provide her with a list of everything.
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