Well Maddie is 2 and a half. She is on so many meds, including maintenance pred 3mg daily and pulmicort 2mg daily. As well as montelukast, serevent, atrovent, omeprazole, ventolin, ceterizine.
Anyway she's always been a little chunk! Cuddly shall we say! She was put on maintenance pred about 8 weeks ago and since then her asthma symptoms have improved loads thankfully (although has still needed a short course on top) but she has the side effects that come with pred!
She was weighed at the time and was 14.45kg. I weighed her today and it's dropped to 13.68kg! I'd say that's quite a bit in such a little girl? That's about 30 ounces isn't it?! in just 8 weeks!
Is this normal on pred? I thought weight GAIN was the issue not weight LOSS??!!
Anyone?
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I'm assuming from your post that the two weights were done on different scales? That could account for some of the difference.
It could also be that she is able to move around more therefore burning more calories? Does the pred make her feel sick, because that could discourage her from eating? I've been known to lose weight on high dose pred too!
You could monitor her weight (and eating) for a few weeks if you're worried.
Maddie eats like a horse all day constantly. All she talks about is food and drink!!
In fact as far as the drink goes we are waiting for the hosp to call ne back to arrange for an admission for a glucose test as she is drinking and weeing for England too! Her random blood sugars are high too. I guess I worried about the weightloss in conjunction with these symptoms too.
the weight loss and symptoms could suggest diabetes.. though i think you have already thought the same thing... i hope the test comes back ok!! xxx
Hi Emily,
We are having the same issue with Tom at the moment. He is losing weight and his consultant thinks it is due to the long term steroid use. He is having a synacthen test (spelling is probably wrong) on friday which will show if this is the case.
Vicky, have you any idea how they will treat Tom? Has the hospital given any indications? I have absolutely no idea what they do!!
It's like being stuck between a rock and a hard place when the side effects of meds cause problems isn't it! Daily pred has made so much difference to Maddie but it's horrid to look at her little body so wasted.
Emily,
I have been informed that they put a canula in his hand and at certain times during the day they give him some kind of medicine and then take blood from him. From what I have read on the internet it is to test to see if his adrenal gland is being repressed by the steroids. I Posted a question about this on the site and some of the other users said that ironically if this is the case they treat it with more steriods! When they informed me he was having this test my mind went blank as I thought he was doing quite well and I was shocked at him losing weight so I did'nt ask the questions I should have.
I know what you mean about being stuck between a rock and a hard place, if it is not one thing it is another to worry about.
Well, off into hosp in the morning for THE glucose tolerance tests! I've been sure for weeks that it will show something, now today I'm wobbling and feel like a fraud for even worrying! Maddie has been so good today!!
I guess I just want an answer for why she's been grissly, thirsty, weeing loads, lost weight and having naps once again! But hey, today she's seemed fine! Is that typical or just fluke?!
Is t easier to have a 'reason' or should I stop worrying and just let be!!
I guess I just want my third child to be as healthy as my other two!
Good luck today Vicky and Tom. Let us know how it goes. X
We've been in hosp for 3 days as some of maddies test results came back v abnormal! We had a call at home at 10pm and were admitted immediately!
Her cortisol level was barely existent so consequently has caused great alarm! A few other cane back dodgy too a loooooong story and lots of v scary words and situations but we have been discharged with more emergency hydrocortisone and await further action now in the next few days. Our hosp is in contact with Bristol children's hosp now which is 250miles from where we live!!
Hi Emily,
So sorry about Maddie, you are really going through it at the moment.
You never know Bristol hospital might have some ideas about Maddie's illness, we have been going to Birmingham children hospital (for an unrelated asthma condition Tom has) and they have been brilliant.
Tom's test went ok, we are just waiting for the results now. Thanks for remembering us, it means a lot to get your support especially when you have so much going on as well.
Vicky, so pleased it went smoothly. Did they give you any idea how log the results will take? Has Tom had a cortisol level blood test prior to this? Hope it comes bk quickly and is a good result. X
Emily,
not sure if he has had his cortisol levels checked, I presume so as the last few outpatients appointments he has been to, full bloods have been taken. Not sure how long the results will take, I presume if I dont hear anything quickly it is good news.
is Maddie going to have to take extra meds now she has a diagnosis of adrenal failure? I am not sure what to expect if Tom has the same result.
Vicky x
Hi. My daughter is seen at Bristol Children's Hospital and we have been really well supported by the doctors there. She is currently well controlled but her asthma can be very unpredictable and suddenly be really bad. We are lucky enough to live nearby and I am always nervous about travelling to other places and not having the support from there if things suddenly go wrong. The asthma nurses there are also really supportive and knowledgeable. I guess what I'm trying to say is that you should be confident that there are experts there and that they will do their best for Maddie and for you. xxx
Caro, thanks so much for that. It's good to know. I live in Cornwall so it's a bit of a treck. Having said that our local hospital is liasing with staff at Bristol as to what steps to take.
Vicky- apparently as Maddie is on daily pred and budesonide anyway, it should replace her lacking cortisol on a day to day basis. However if she goes into crisis, we have hydrocortisone intramuscular injection to give. It's a bit of a mind field to be honest and a bit scary. The consultant said her levels shouldve been up nr 700 but they were only 16! We got the call from the hospital at 10pm on the same day as the test. Let me know how it goes. X
Hi, my son - aged 8 - has this too - he takes daily hydrocortisone twice a day, plus usual asthma meds. He had a lot of headaches, tummy aches and tiredness before diagnosis. Godo enws we managed to reduce his asthma meds but he is on daily hydrocortisone still. It's quite hard dealing with it and not knowing if he's ill due to adrenal problems or just ill generally.
Thank goodness for this forum Emily, it is nice to know you are not alone and have the support of others in similar situation. Thinking of you and Maddie.
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