Hi I am new

Hiya

This is my first time posting on here I'm after some advice/reassurance really. My son is 15 months old but was very premature - born 11 weeks early. He has had lung problems since birth (probably due to the fact that my waters went only 17 weeks into the pregnancy). He took ages to come off additional oxygen and was fully ventilated for 36 hours and on cpap for another 2 weeks.

Anyway at only 8 months old he was diagnosed with asthma. Now I was led to believe that children weren't diagnosed till they were 2. How are children diagnosed? We were just told Jake was asthmatic during one of our frequent hospital visits last winter. He seems to get a cold then it goes straight to his chest and sits there - not usually causing infection but very bad wheezing and shortness of breath.

Recently he has been wheezy for about 5 weeks. This is slightly helped by his inhalers but not for longer than an hour at a time. He has been admitted and observed but as he didn't need additional oxygen he was released the next day.

They did tests for cystic fibrosis which I am very pleased to say came back negative. They have also done allergy blood tests but still not got results nearly 4 weeks on.

Anyway what I really wanted to ask is are the level of meds I am having to pump into my son ok to be giving him over such a long period of time? We don't see his paedeatrician till December now and GP doesn't deal with his asthma as he is under a paed - grr!

He is currently having 2 puffs of pulmicort in the morning and same in the evening, 10 puffs of salbutamol every 3-4 hours, 2 puffs of attruvent every 6 hours and a sachet of singulair montelukast every evening. Edited to say he also has prednisolone tablets 4 a day for 4 days when he gets really bad - he's had 5 lots so far.

This seems so much to me as he is still very tiny - only weighs 19lb!

Sorry for the long post please give me any advice I'll be so grateful

mandy x

8 Replies

oldestnewest
  • Hi Mandy. Welcome to AUK. I'm sorry you are having such a worrying time with Jake. Does your GP have an asthma nurse maybe you should make an appointment with her or contact the nurse on this site (details on home page) as it sounds like Jake's asthma is not controlled as well as it could be, the fact that his 10 puffs of Ventolin only lasts for an hour and that he's been wheezy for 5 weeks isn't very good. Hope you can get Jake sorted out soon before winter and colds etc rear their ugly heads. Take care xxx

  • hi i totally agree if hes having that much med in that spaces of time it dont sound like his asthma is controlled properly.go to ur gp and ask to see an asthma nurse.

    sorry cant be of any more help.give em hell.

  • Do you still have open access to the childrens ward as he was prem? If not give them a ring anyway or ring paed secretary to see if can be seen earlier.

  • Thanks so much for your replies. Our children's ward doesn't do open access even for extreme prems so that isn't an option unfortunately.

    Our GP does have an asthma nurse but as Jake is seen by a paed they won't deal with him - grr!

    I am in touch with the paed's secratary as I am constantly chasing up these allergy test results so I think I may need to ask for his appointment to be moved forward - they just say he is a happy wheezer and is not compromised too much - but the level of meds just doesn't seem right even if he's a 'happy' whezer!

    Thanks again

    Mandy x

  • Hi I know how you feel. Both my sons have asthma, one when he was nearly 2 after having pneumonia after an operation. he was born with eczema and developed asthma when the eczema cleared up. My youngest son was nearly born nearly 9 weeks early. My waters broke, had severe contractions and all other signs of labour, given steroids to strengthen babies lungs. I didn't dilate so sent home after a few days and on bedrest for therest of labour. My son turned up on his due date, I only felt one contraction and had a pain free labour.

    Matty had problems with coughing very early on and was on ventolin from 5 months. Every time he gets a cold it goes straight on his lungs. Matty was on lots of medication from 12 months old. They thought he was allergic to pulmicort due to the amount needed to keep him well. He then went on to Flixotide and the doses got bigger, the same has been going on for years with even more drugs. He was on unlicenced doses for treatment at 18months old, it broke my heart thinking of all his medication. Especially the oral steroids as the doses get bigger and bigger, but his height and weight are perfect for his age, infact Matty is one of the taller kids in his class! I still struggle watching him take all his drugs but he needs them. We were told to take him off his atrivent last year as it's of no use and only works on babies, he missed three months off school and was very ill and on steroids for three months. So now we don't mess with any of it, only the consultant alters it.

    I find massaging Matty's back when he is ill really helps and get rid of any mucus so it doesn't get to the chest.He loves this and did as a baby and it keeps him calm and he feels safe. I remember the stress of waiting to see a specialist, we've only just seen a respiratory specialist this year. We had the test for cystic fibrosis too, luckily it was clear. We don't get open ward either but we have a letter from the paediatrician to get us past A and E as they are quite happy to send us home, that may be worth organizing.

    I would push your Doctor to be seen earlier, December is a long time away, especially if your son is still unwell

    Good luck, it does get easier when they are older as you get to know the signs to look out for, each child reacts differently. But getting them to remember their treatment is another thing!!(sorry it's so long!)

    Take care

    Rattles

  • Hi all

    thanks so much for your advice I took it all on board and was about to ring paed's sec when my hubby decided enough was enough and we went straight to A and E. Jake was admitted for observation his inhalers increased to 10 puffs salbutamol every hour, 4 puffs steroid inhaler morning and evening, 2 puffs attruvent every 6 hours, antibiotics, oral steroids 4 tabs each morning for 5 days and his montelukast singulair granules. He was discharged as soon as this all kicked in and his wheeze clamed although his SATs were slightly low (92ish).

    As soon as we got home it all started again - we put up with it for another few days before heading back to A and E for him to be admitted again same protocol but this time we also got a referral to an asthma specialist!! Discharged again about 12 hours later when all calmed down.

    Again we got home and he was just as bad so 2 days later we were back at A and E as Jake was tachyapnoeic (65 breaths per min) and sucking in between ribs as well as awful wheeze. Same protocol again got through an entire blue inhaler in the 18 hours or so he was there! Also his SATs were 86-88 but they didn't give him oxygen ohter than a blast in A and E.

    Anyway needless to say we are now a week on from last discharge. Jake is as bad as ever - still having 10 puffs salbutamol every 2 hours plus all other meds I listed before. Isn't this a crazy amount for a 16 month old!?! He is now coughing so much he is sick after every milk feed (bringing his antibiotics back up too) He hasn't eaten a meal for 2 weeks he had lost 2lb when he was in last week I hate to think what he weighs now - he was only a tiny 20lb anyway. I am so stressed I spend ages counting his resps (always over 40!) and checking him in the night. I am exhausted and so down about it all. I feel like we've hit a brick wall. We got the asthma specialist appointment through for 4th Nov but it seems ages away. I rang our HV and she is sending a paed nurse to visit next Weds again seems ages away.

    Sorry for the moan but any advice will be greatly appreciated. we've been to doc many tines he just says he has a bad chest infection on top of asthma and we need to get the antibiotics down him - aargh!

    Thanks

    mandy x

  • Hi you have been through it, you poor love. I do know how you feel, every cough makes my heart break.I know the feeling of the exhaustion, trying to live as normally as possible while inside you feel anything but, the endless useless trips to a + e, I have to shout at my husband to get our son into hospital as he doesn't trust them. He says I do a better job but the pressures just too much. Someone told me a good bit of advice. I used to leave my husband to sleep though the attacks and used to wake him up when I could cope no more,as he worked more hours than me, but he never understood how bad Matty was. I now wake him up after the first few attacks and tell him, it's all kicking off and we get through it together and make the decisions together.

    I am so glad you are seeing a specialist on the 4th, so are we in Southampton. Matty's is at 11ish. Do allow a long time, we were there for 5 hours,he was really thorough, there were loads of tests, and with the specialist nearly an hour.The asthma specialist nurses and all the staff were fantastic too.

    Good Luck

    If you need to talk. just email me

    take care

    kate

  • Hi I meant to say my boys used to be sick all the time with their asthma, our old sofa had the marks to prove it.We got rid of it after only 2 years and got a leather one.The boys are no longer sick with it anymore. I do know what you mean about the medication, it worries me sick still, Matty is back on steroids yet again, and his blue puffer every 4 hours. Matty used to be on a nebuliser every four hours when he was two, it makes his heart race and still scares me. We have a nebuliser at home and at school. Matty has been off school another two weeks, his peak flow has just come back up after weeks of being bad and it only took 8 days this time, yippee, he's just been out for a very short bike ride with his brother and all is fine.They are also fighting again so Matty feels better!!! I hope Jake feels better soon too

    take care x

You may also like...