Well I took Sean to his apt at RBH today to discuss theophyllin and things havent turned out as i expected. Sean was actually quite well this morning which is typical when he has hospital apt until he had to do lung function test. He has been doing lung function for years but today everytime he tried blowing his airways tightened and he was coughing and wheezy so the nurse gave up trying to get a result. We saw his consultant who has decided that he wants Sean admitted today for 1-2 weeks for complete change of meds and a bronchoscopy and ph study. He felt it was far safer to do the changes as an in patient as Sean has been having severe attacks where his sats have been dropping to 72% . His current regime was flixtide,serevent,ventolin,singulair,dexmethsone, sub cut bricanyl. They plan to stop flix and serevent and replace with symbicort twice day and add in theophyline tabs. I don't know how long Sean will be in hospital as his con said he will be kept in until they are happy there is no more airway inflammation. The reg at RBH has just rung said they got outbreak of sickness/diarohea and a child just been put in the cubicle they were saving for Sean so he being admitted to the local hosp tonight and ttransfer to RBH asap.
Looks like its going to be a long couple weeks but at least at end of this we should be able to get Sean stable again.
I am just reassuring you that I went through the exact same thing last October at the brompton although they did not change my drugs as I was already on maximum everything. The doctors are really nice and helpful and really try to help you. I was there for nine nights and had many different investigations. Two weeks later I had an endoscopy, bronch and pH study. Without alarming you pH studies are known to be quite uncomfortable but then again it doesnt always bother kids. Who is your doctor?
Good luck
May
Hi Maysie. Sean is seen by Prof Bush, he has been his doc since he was 3. Thanks for your reply. Sean has been admitted before for these tests so fortunatly I know what to expect. He was on max of everything as well and still getting ill hence the change of drugs. Dr Rosental did ward round today and has changed mind about symbicort as they dont think he will get high enough dose so he now on pulmicort and oxis inhaler but high doses. The bronch and ph study are booked for monday, Sean had a ph study when he was 4 and they found he had reflux so he had surgery but unfortunatly it didnt make any difference.
He had an ECG today and from those results he now having a 24-48 hr heart trace done as he sometimes gets very fast heart rate.
I'll keep u posted
Julie x
Hi Julie
Nice to hear from you i hope things are going ok. I have Prof. Bush to and lizzy the nurse always calls home to see how i am. Do you know when you are going to start theothylline yet? I take 500mg twice a day it does help but i get used to the dose quite quickly then turn toxic. I also have s/c bricanyl- how much does your son have? Im hoping to go up to 10mls next time i see them.
BTW what is dexmethsone?
The tests I had also showed i had an immune deficeincy which i now see GOSH for.
Good luck!
May x
Hi Julie
Hope the admission will help, thinking of you both.
Caroline
Thanks Caroline.
May, i've not spoken to lizzie for a while but was chatting to Marcella yesterday and told her I had bumped into you on here. The sub cut dose is 5ml but in a 10ml syringe over 24 hours, i think thats right anyway :=) The theophylinne started on thurs at 250mg am and pm and he is now on pulmicort 1200mg am and pm and oxis 24mg am and pm. They are going to keep raising the oxis dose for next days until he is showing side effects and high so we are in for a few fun days as Sean is a bit of a nutter anyway! Dexmethsone is a oral steriod like prednisilone (prob have spelt both wrong) , pred made Sean into the physco child from hell when he was four, he caused havoc in hdu and rampaged through rose ward so Prof bush suggested dex and it worked wonders for his behaviour.
As you and Sean are both seen by same doc you have prob both been on ward or in out patients together at some point.
Anyway I best go and get some housework done as thats reason I came home from hospital, I've left Sean and his dad playing PS2 lol
Julie xx
Hi Julie
How are you getting on at the brompton or are you home yet? Im going to out patients tomorrow whgere i am hoipingto have theo, s/c and seretide upped. I will also find out about my iummunoglobulin s/c too.
Hope everything is going ok.
Love
may x
Hi May,Sean is in out patients fri 7th as well. Hope we all there at same time would be great to say hi We are there at 9.15 I'll ask marcella if you are there when we get there.
If we miss each other I hope everything goes well for you
Julie xx
Hi Julie!
I think we must have missed each other! I was there at 11- if you were there i was the onw ith the blonde curly hair and wearing blue and white stripes.
Do you mind if i ask how old Sean is? I think marcella may have mention him going on PEAK holidays, does he go? I'm going to Southampton this yr! Sz for all the questions.
Since finding out i am allergis to seretide i am now on pulimicort 8 puffs a day and am starting oxis but going up every 2 days till feel side affects.
How are you getting on with theo? Is symbicort working?
Me and sean are on similar meds althouhg i have drugs for over probs too.
I hope you are ok and that your appopintment went well.
May x
Hi May, I hope u r well and things went well on friday. I'm sorry we missed you, we left by 10am. Sean is 10 but is very tall so looks much older, he went to Peak last summer for first time and loved it. This year I am hoping he is going to Southampton I am just waiting for conformation.
Sean isnt on symbicort now as docs thought it would be best to put him on pulmicort and oxis instead. He is on 6 puffs twice a day of both inhalers. During the recent admission he was started on five new drugs so its difficult to tell which one is working or if its a combination but i am very pleased to say he has been really well. We are currently trying to wean his dose of oral steriods down.
It does sound like you are both on similar meds, he currently takes pulmicort,oxis,dexmethzone,slo-phyllin,domperidone,omprazole,montelukast,neo claritin,sub cut bricanyl,dexmethsone and ventolin.
Anyway I must go and start wading through this huge pile of washing my kids have created
Julie xx
oh i forgot to say Sean was also put on the increasing oxis dose until he showed side effects but for some reason he got up to 7 puffs twice day with no side effects so we decided to stick with six and he was keeping well on that dose. Hope the change of meds works for u
Hi Julie
Im glad things are going well for you and Sean. Im not feeling to brilliant at the moment but hopefullt i will start to feel better soon.
Im currently on pred, ventolin, atrovent, oxis, pulmicort, slophylline, azithrimicin, erythrimicin,omeprazole,domperidone,ranitidine,cetirizine and s/c.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
We are there at 9.15 I'll ask marcella if you are there when we get there.
Update
My poorly boy
Recovering after hospital stay
15 month old son-numerous admissions to hospital
