Toddler asthma? Pls help! Docs aren’t doing anything

[Abn23]

My LG is 21 months . She’s basically had a cough since Sept ‘18. Always worse at night and much much worse with a cold/virus. She’s had croup 5 times this year. IV antibiotics with a really bad chest infection, a couple of other chest infections.

We stayed at my Father in laws at the weekend , his house is really old and probably damp (smells musty) and dusty as they have had building work in the last few months (but obvs tidied up etc) (sounds mean - they are clean people it’s just a very old house , single glazed windows , gaps around windows etc) . Since our stay , my LG has had an awful cough , not too bad during the day but awful at night. We are on montelukast and blue inhaler, we use steam humidifier and give piriton at bedtime . None of which seems to help !! She’s coughing and wheezing for 9pm-2am! It’s affecting her and us. I just want to help her and make her better . Doctors aren’t listening at all I’m at my wits end .

Sorry for the long post . Has anyone has similar ? Thanks

[Minushabens]

The first thing I'd say is the links between croup & asthma are probably fairly tenuous. That's not to say that a child with one won't get the other, but it's a viral infection of the larynx as opposed to a (usually in children anyway) genetic/atopic illness of the lungs. My daughter had terrible croup to the point she was even given an inhaler, but never developed asthma really; my son never really had croup but to this day (he's 23) has asthma.

There are other things though that are a concern. Damp is a well-known asthma trigger & so is dust. The problem with small children though is diagnosis. Nowadays, most local NHS Trusts have a policy of not formally diagnosing asthma until the child is old enough to undergo diagnostic tests, which can be as old as 8 or 9. NICE guidelines though say that a child presenting with symptoms that are consistent with asthma should be treated on a presumption that it is, until such time as asthma can formally be ruled in or out. The fact she is on montelukast & (I presume) ventolin suggests that your GP is at least conscious of NICE guidance, but it may be that either it isn't actually asthma or they haven't got the medication quite right yet. I'd fix an appointment with the asthma nurse/prescribing nurse at your surgery & ask for a medication review...maybe adding a preventer inhaler might help.

The other thing to focus on is why is she worse at night? Check around her room & look for any triggers, e.g. small damp patches, dust...get mattress & pillow protectors (Dunelm Mill sell these quite cheaply), hoover the mattress & replace the pillow every 3-6 months.

Good luck

[Abn23 in reply to Minushabens]

Thank you ! I’m quite conscious with her room, we keep it clean and tidy and I wash her bedding once a week . Maybe I need to step it up ! I’ll get anti allergy pillow etc as maybe it’s time to replace her pillow anyway.

We’ve asked for brown inhaler and been told she’s too young ( we know kids the same age that have one ) .

We’ve been asking for a review appt but had a long wait . We’ve not been given much advice beyond the usual basic stuff x

[Echoblue in reply to Abn23]

You can pick up anti allergy pillow protectors too - bought replacement ones myself this morning in QD!

Good luck

[xxggtt in reply to Abn23]

She might well be too young for a GP to prescribe a preventer inhaler, but she's definitely not too young for one altogether! If your GP can't prescribe what she needs due to restrictions, they should be referring to a consultant paediatrician, who can prescribe! I'd be asking for a referral to a paediatrician ASAP.

The alternative, if your GP won't refer, is an A&E visit when she's really bad. Then A&E will do a direct referral to paeds once she's treated if you explain she's struggling and GP won't refer. I was on three inhalers (clenil, serevent, ventolin) + montelukast when I was her age, so she definitely can have them - it might just be that a GP can't prescribe them, so you'll need a referral to paeds.

[Abn23 in reply to xxggtt]

We’ve been asking for a referral but it’s taken months ! A&E said they can’t refer it has to go through GP. Finally got told we can have a referral, it took me crying down the phone and telling them we’re not supported and we’re all suffering .

[Hidden]

Try a fan that brings down the smell's in rooms as that might be affecting them. (Sorry I didn't know the name of it.) Try and see a nurse not a doctor as my asthma was diagnosed by a nurse and the hospital confirmed it. Nurse straight away give me a brown inhaler, then fostair and I have been on fostair since. You can also complain to the practice manager and go to the GMC if you are not happy. But try practice manager first and keep a couple of the letter you sent practice and any response from them just in case you need to send them to the GMC. Send copies of what was said to GMC

[Abn23 in reply to Hidden]

We’ve seen doctors and nurses. An out of hours doctor said she need a brown inhaler but she couldn’t prescribe as it needs to be her GP. I’m going to put in a complaint as I’m so upset we’ve had no support

[Hidden in reply to Abn23]

I didn't have a doctor prescribe it mine was done by a nurse. I hope my suggestion on how to put the complaint in is helpful. I would like to know how your child is doing and how the complaint is going also

[444nM]

Sorry to hear your distressing situation. Molds are hazardous especially black mold and aspergillus. These pathogens thrive in mucous especially if the mucous is at a cooler temperature. If your daughter is running at a below optimal core temperature the mucous can harbour molds and other pathogens. l personally would avoid a cool damp environment. Montelukast can precipitate to blood vessel and kidney disease, Churg-Strauss syndrome. A dehumidifier combined with a HEPA type air filtration system in the bedroom could help with reducing mold exposure. ln my experience these molds can increase bronchitis and 'cold' symptoms not linked to asthma. I would find out what your daughter's oral temperature is and if it is too low (below 98.2°F in daytime & 97.34°F at night) l would try to raise it to optimal levels. I had 59 years worth of bronchitis and cured it with a temperature reset 5 years ago. One little sniffle and no bronchitis for the last 5 years. My asthma is separate and was caused by a vaccine. Not sure if steam inhalation is wise particularly with regard to mold and increased mucous. Hope this info and experience is of some use, good luck.

[Abn23 in reply to 444nM]

Thank you! I am looking into getting an air filter . I’m not keen on the humidifier as I can’t get it all completely clean as I’d like. We moved all the furniture and checked for mould - no visible signs . Our house is only 15 years old and we keep it nice and clean and have windows open / don’t dry clothes inside , so we’re quite careful.

[444nM in reply to Abn23]

One of the most common asthma causes in the environment is by infection with ascaris roundworms. The larvae migrate to the lungs once inside the body. They can be picked up on fingers and transferred to mouth and eyes quite easily. The microscopic egg spores can also be breathed in. If there are any pets present in or near the home with airbourne dried faeces present then all members of the family are at risk. In autopsies performed on asthmatics ascaris larvae were present in 100% of cases.

[Elspe in reply to 444nM]

444nM do you have a reference for this please? We're curious about the ascaris issue and the autopsies you cite. Thanks!

[444nM in reply to Elspe]

l have come across this years ago, l will have search in my files. lt will take some time unfortunately.

[Elspe]

Thank you!

[maryemma]

Hi just some simple things that may help all her bedding anti allergy with covers that go over pillows and if she sleeps away from home take them with you.No carpets or curtains soft toys like a teddy washed and put in freezer in a bag would need more than one keep bedroom cool .wash her clothes in anti allergy power .look at diet milk eggs etc . No pets or don't visit with any no perfumes on anyone near her no one smoking anywhere near her very hot or cold weather and don't dry her clothes outside in hay fever season .good luck 😃