advice greatly received

Hi everyone.I'm really hoping someone can give me some useful information on here.My daughter Chloe is 6yrs old and from a very early age has suffered from allergies and asthma which has worsened over the years and became brittle.For the last 2yrs Chloe has been in and out of hospital every 4-6 weeks with severe attacks.Since September she has been going only every 2 - 3 weeks and we are admitted to Hosp with severe attacks requiring admission to ITU/HDU to be given IV amino.I am at my wits end with knowing what to do best for her.As a family we are all extremly tired as she is awake most nights.She is on a sats monitor at night and c-pap to keep her sats stable but this alarms during the night regularly.Her consultant has referred her but we are told the wait is 9 months.Chloe is missing lots of time off school.She is currently on salbutamol nebs 5mg every 3-4 hours

atrovent nebs 4 x day ,seretide inhaler 4 puffs 4 x day, piriton and clarityn,singulair granules,domperidon,omperizol and 30mg pred daily. does anyone have any suggestions of long term meds which may help her ?. Chloe is allergic to eggs, dairy, all nuts, wheat and has coeliacs disease. She is also allergic to numerous household products.She has had a sweat test and we are waiting to see if she has CF as she is very tiny for her age and is fed by NG tube.Thankyou for taking the time to read this from a very desperate & tired mum . Nikki xx

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  • Hi Nikki sorry to hear you are having so many probs with Chloe. Which hospital are you being referred to? 9 months sounds like a really long time to wait with such severe uncontrolled problems!

    Chloe sounds very similar to my friends daughter. She was treated as an asthmatic until she was seen at Great Ormond street and after they did loads of restes including a broncoscopy they realised she didn't really have Asthma but a number of other wierd problems!

    I see Chloe is taking Domperidon, is this for Reflux? Courtney has svere reflux and it was found she has an unsafe swallow which meant all liquids and soft solids were entering her lungs as well as going to her stomach. This caused a geat deal of infection resulting in a number of admissions for Pneumonia. She was initially fed with a ng tube but now now has a gastrostomy as she couldn't tolerate gravity feeds. Courtney had the the test for CF but it came back negative but she is also very small for her age and now is treated the same way as for CF due to recurrent infection. She has physio twice a day and has IV antibiotics every 10 weeks to bring her back up. This really seems to have helped as she has not been admitted to hospital so far this winter. She also takes daily anti's . Courtney started school in September and her nursery recomended she applied for a statement. She attends a brilliant special needs school for children with mobility needs and due to tiredness only currently attends 3 days a week. The classes are very small and lessons ar planned around each child so if they miss time from school they do not miss a chunk of learning. Te also have nurses available to deal with Courtneys feeds (she is on a 21 hour feed) and they do her IV's when she needs them during school. This system seems to be working well for Courtney although her mum found it hard to make the decision not to send her to main stream school as she doesn't see Courtney as 'disabled' but realised a main stream school would never have coped with her needs and sh would be at home/in hospital more than at school!!

    If you like I could pass your e mail address onto Courtneys mum as she feels she is the only one with a child Courtney and would be good to chat to someone in a similar position.

    Hope you can somehow get her appointment brought forward - it can happen you have to speak to the right people and get the hospital to emphasise the severity of her condition.

    Good luck and hope Chloe pics up a bit soon xx

  • Nikki, I dont know what to say to make things better as im going through similiar stage with Sean at mo. Just wanted to say push for that referal, when Sean was refered to RBh he was in local and was transferred for tests etc within 2 days. Just wanted to let u know I understand how stressful this must be for you and if you need a chat please Pm.

    Take care, hope Chloe starts to improve soon.

    Julie x

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