Hi there everyone, this is my very first post so not sure about set up? anyhoo will give it a go. My son who has had asthma since 6months old, now age 10 was changed to seritide april10. he was on symbicort 2 puffs am and 2 puffs pm with 3 - 4 flare ups per year treating with pred for one to two weeks. the decision was made that this was uncontrolled asthma and that we would try seritde. he was on a high dose therefore the Cons carried out synactin test october 10. Obviously the results went awol and we got a call 23rd Dec !with the news that his adrenals were slightly supressed at a reading of 450 and it should be 500. open access to pead ward was then granted and as then got flu Dec/Jan we were there a lot! A few months after taking the seritide probably round about Oct dean started to become tired, sore heads, sore stomachs and generally lacking in energy, when we questioned this we were told that his adrenal score was not low enough to cause any of this so i questioned that he may just not agree with the drug itself. the cons dismissed this again and things never really improved from a generally well being perspective dean still complained of tiredness etc.
The hospiutal had reduced the dose of seritde in jan11 to a safe amount and were due to retest synactin test in june. The idea was that the 6 months on reduced diose would stimulate his own adrenal glands. 1st april dean got suspected tonsilitus and became very unwell, in actual fact it was strep infection in the end all signs pointing to scarlet fever. over the next 3 months april to june dean was in a very bad way, constant chest pain scoring at 8 out of 10 without exercising, sweating upon little excersion, sore heads, tummy, diarrhoea, loss of appetite and were were in hospital constantly but eventually many of the young doctors were unable to help as they would have to check with our cons who was never in hosp when needed. Both deans father and I suggested that perhaps dean was not getting better as a result of his impaired adrenal to us that seemed fairly relevant. This again dismissed as "" generally"" he should not be asymptomatic. Dean was bairly at school for these 3 months probably only managed 4 half days, and after most tests were done we were left with a diagnosis of post viral syndrome... potentially an ME style illness. With a younger sister at home things were pretty awfull, dean was away from his peer group. panicked at school as pain and fatigue was too much. When the repeat synactin test was finally done i was shocked to find that it had got worse by another 130 so at the moment it is around about 340. My local gp who is an absolute godsend who never knew why they had changed dean to sereitede changed him back to symbicort 800 daily. we were due to fly to spain on 17th June and my case was rattling with drugs not knowing whether the change would induse further decline in funtion but we all agreed the boy needed a break. Over the years we have cancelled 6 hols so we decided to go... Within 2 weeks of the seriteide leaving his system all symptoms stopped including chest pain. we had such a celebration that day. Now home and back at school we are now dealing with viral tonsiltius which is triggering his asthma but he has started his one tablet of pred per day for his adrenal so fingers crossed we wont need to up the pred for his asthma....... we saw our cons for the first time since they sent us home with the ME diagnosis and she has set up a meeting with endocrynologist to further test adrenal. I did ask the question as to why his second test was much worse after being on a much reduced dose of seritide for 5 months and the answer i got was due to the amount of pred he had in Jan for flu? at the time all doctors told me that pred takes 6 weeks to leave system? this doesn't really add up and I am so relieved that he is now off seritide for good. Our asthma nurse we see before cons has taken ou opinion on board and just because deans test result was at 340 he could be symtamatic or ideed react differently to seritide, the cons however stil have ruled it out.
Our next test will be interesting and we now have to encourage dean not to worry so much about his health as he does love all his sports but the affect of those months without any answers to help him have left a huge impact on him. we can only hope that his adrenal will improve back to full strength?? thanks for letting me rabbit on Laineyxx
I have adrenal failure caused by steroid use. I have had a number of years on daily prednisolone but when I was diagnosed earlier this year I had only been having about 2 courses of pred a year for the last 8 years. My only other steroid is seretide 500 twice a day. Makes me suspicious that it's actually the seretide that is causing this and not the pred. I'm now on hydrocortisone replacement every day to treat it. My Synacthen test was 100 before the synacthen and then only rose to 150.
Hope you find some answers soon
Hi,
Really interesting to read your post - we are in a very similar situation.
Our son aged 8 has the same as yours - was on high seretide plus in one year had a lot of courses of pred.
Is now on daily hydrocortisone to treat adrenal suppresion.
His first test was around the 450 level then later tests the level has reduced. We're told that the basal level is also important - this is the level that is taken before they run the test. Has your son's basal level improved?
Our son too suffered from tummy aches/headaches/tiredness etc and so many days he has spent feeling really exhausted and not able to do the same things as his peers.
His last synacten test was in the spring and the 'spike' had fallen - to around 350 too - even though asthma steriods had been reduced. We asked too why the level had fallen despite reduced asthma meds and the answer was that the spike can vary if you're not well etc etc.
It is really worrying and the effect on our son when he is ill like this is not good.
Taking the hydrocortisone does make him feel much better - less tiredness, headaches and tummy aches.
We just hope that eventually his adrenals will start working better.
He has been 8 months on reduced asthma meds now and his next synacthen test is in a few months. We are hoping that his spike level will have got better. Last test was in the spring and was 2 months after reducing asthma meds - perhaps this was not long enough for the adrenals to start working again.
My daughter is only 2. She was diagnosed at just 6 months with suspected asthma. After alot of tests and ALOT of meds, she was confirmed asthmatic due to a swallowing defect causing constant aspiration and infection.
She was started on clenil, then spent about a year on seretide, before moving onto budesonide (pulmicort) nebules twice a day.
On top of that was the dreaded pred approx once every SIX weeks due to her brittle asthma.
At the beginning of June this year, Maddie was started on pred daily as a maintenance dose. Her cons sd that without this she had 'no quality of life'.
At the beginning of august, I took her to hospital for a routine glucose test due to her blood sugar levels being all over the place. While there, and after merely chatting about steroids and their effects etc, the nurse sent bloods off for her early morning cortisol level too. We were told the result would be bk in a few days.
The very same day at 10pm, we received a call from the hospital. We were told maddies cortisol levels were dangerous and she was immediately admitted. When we arrived there were a team waiting for her. Apparenty they had expected her early morning cortisol to be nr 700 but it was just 16!!!!!!! She was v v ill and we didn't even know.
Since then we have been abandoned. Not much has changed re meds. They are treating her adrenal suppression with her daily pred, along with the emergency IM injection for emergencies.
She had a scan yesterday of her adrenals and in fact, they couldn't even find them!!!!!
We are due to see the endocrinologist next week. We are still yet to be told if this is a congenital defect or in fact the steroid use.
When I asked if it were her steroids, could we take her off them as the asthma was easier to assess than the time bomb that adrenal insufficiency is. The dr's reply was ""her asthma is too severe to even think about er coming off the steroids and she never will""!
I feel abandoned with regards to it all an completely out of control!
I truly don't think there is enough information and support with regards to this. Our children needed drugs for chronic asthma, yet they now have another condition on top that's equally, if not more, scary!
I'm sorry if I've rambled on. I just wanted you to know you are not alone.
Lots of love,
Emily x
Hi Emily
Yes I agree with you - it's one thing to deal with asthma but this adrenal insufficiency is really scary and really isolating.
I try to control my worry about it but it's very hard.
I am fearful of my son getting into a 'crisis' and if he starts a cold or says he feels tired, I feel really worried and wonder - is this the start of something? Do I need to double up the steriods? How is he going to be?
The time of year with going abcl to school is always bad for him so we will have to see how it goes.....
On the plus side with the daily hydro he does have a good life and his asthma symptoms are much less now - infact asthma is not much of a problem now - its' the adrenal insufficiency that's the realy worry.
Jackie- I sooo know what you mean about the total fear of what's ahead. With the asthma, I knew totally her illness inside out! I knew her triggers, symptoms etc and knew what I had to do at each stage! It was v black and White. However with the adrenal problems, I feel out of my depth. Everything is a worry! If she vomits she could go into crisis! Just her temp above 37.5 is a danger. To me, that is not high at all though!! She has lost weight, shivers violently from time to time, has tummy ache, gets tired and irritable! All these things I see as danger signs yet when I take her to the gp, they have no idea! They then admit her and without testing her bloods, I'm told she doesn't look too bad so to go home and wait to see the endocrinologist!!
It's as if noone knows what to do and yet the harsh reality is my little girls life is in the balance while the medics continue to be clueless about it all!!
Maddie started Pre school today! A momentous day as it was delayed by a term as she was too poorly after Easter!
Anyway it was a 3 hr session and after just 2 hrs I got a call to pick her up early as she'd flaked on the floor and had intermittent shivering again.
When I got there she looked wiped out bless her.
I went and bought her some choccie buttons for her on the way home and once she'd eaten them, she was ALOT better!
Is this all to do with the adrenal insufficiency?? She flakes so quickly! And is more tired than a yr ago. This shivering/shaking things is odd too.
Have any of you experience of this??
Hello,
How is Maddie today? really hope she could get back to pre-school.
If it's any consolation, what you describe is what we have oftern experienced with our son - him getting wiped out and exhausted in situations (school, outings, parties etc).
I believe this is all part of the adrenal insufficiency. Hospitals tell us about the physical stress that we need to look out for - ie sickness, colds etc - but what I have noticed with him is that emotional stress of any kind - ie excitment, also feeling upset, new places and feeling nervous - cause him to become shattered and v v tired - much more so than his peers.
He used to then develop asthma aswell - ie when he started nursery etc.
He didn't get shivery though.
A sweet thing to eat is a good idea as it brings back the blood sugar level.
I used to get calls a lot from school to collect him as he was so tired (even one day he actually fell asleep).
But I have to say on his daily hydro his symptoms are much better. Though stressful situations still affect him - eg this week back to school is hard on him. So maybe its just Maddie getting used to a new place at pre school.
If she can go for a shorter time then build up gradually to the full session, would that be possible?
Do you work? I do part time, but very very hard as I miss a lot of time at work.
Jackie, it definately sounds as if Maddie is experiencing similar to your son. I hope he's managed school ok this week.
Maddie only goes to preskl on a wed morn at the min with the aim to build up gradually. Bless her but having only managed 2hrs of that, she then slept alot of the following day (thurs). I then took her to a new playgroup yest thinking it may build her up a little. After just one hr, she looked so hot. When I touched her she was cold and sweaty/clammy tho. She was gettig really cross and agitated with everyone/thing too. I just thought maybe she was a little tired but I happened to be sat with a nurse. She mentioned that Maddie seemed hypoglaecemic. We gave her some chocolate buttons and v soon Maddie calmed down and seemed less cold and clammy.
The thing that confuses me is that shes had all the blood sugar levels checked for diabetes and they've generally been high, not low!
Also, her cortisol was only 16 at the last check. When they tested it she was on daily maintenance pred. Does the test take this onto account too or is it just the natural level that is checked? I wasn't sure if the figure of 16 was as high as it gets WITH pred if that makes sense!!!!
She still seems poorly. Looking at her she seems happy, smiley and content and can in fact move and walk due to her asthma being controlled at last. BUT when undressed, her illness is visible she's lost soooo much weight, is COVERED in hair. She's also constipated, shakes, is still drinking and weeing for England and keeps getting panicky and exhausted suddenly! I just wish she was old enough to tell me how she feels!
The endocrinology appointment can't come quick enough now.
Wow I was just about to post this
Yes, my daughter has now been given her ""Crisis"" kit which is in fact a
injection of hydrocortisone which will be given by myself,school, GP, ambulance in time
of incident which will require hospitalization, due to long term steriod use.
I was interested in the test synactin as i'd never heard that term before but meeting with the Endo nurse this week again and will ask her about my daughters scores.
she also had the bone density scans done but not able to make out if this has started to affect her yet due to the steriod use. (She's still on her step down programme and the scans do not give a true picture while on pred)
Also seeing cons this week so might ask if we can go back to flixitide as were on the xolair programme and seems to be working.
Since being on xolair she can yawn, sneeze and hiccup without feeling tight chested and going into full blown attack, so keeping her fingers crossed for that side of things and hoping the Adrenal gland wakes up soon and wont need daily injections of hydro cortinsone, to add to the list of other things.
I am so glad I posted this topic, being new to this site I was unsure what to expect but everyone is really positive whilst trying to find answers , I have loads of new qustions to ask my sons Cons at endo appoint Oct, Thanks you all xxx
Hunter- it's a long scary road but this site has been invaluable to me coping with my daughters illness.
Ozzie girl- is your daughter having daily hydro injections now or have they mentioned it for the future? Can I ask how they're treating her adrenal insufficiency? Are they relying on the pred used for her asthma or supplementing it with hydro as well? I'm not sure if maddies adrenal is beig addressed properly as she's struggling still on the dose of pred she takes.
Emily - I'm sure it's different for everyone and particularly so with children, but I have hydro for the adrenal insufficiency AND Pred for the asthma. They've basically said that although they're both steroids, they're treating different things. The hydro gives me a more 'normal' daily steroid dose, doing what my body doesn't, whilst the Pred treats the asthma. It works for me this way as it's much clearer. I did have one doc make a really complicated plan of using hydro for both, which the endocrinologists tore to shreads!
Found any cure for the shivering yet? I'm sitting here wrapped up in a blanket shouting at the weather man who's just said it's 'mild' outside...
Aw Ratty, bless you. I really do feel for you. No cure yet for shivering but sure it wen she struggling! 3 sleeps to go til endo app. Thanks so much for the clarification re meds for adrenal v's asthma. Makes it much much clearer. I think I'm going to mention this possibility to the endocrinologist. I really don't think she's being managed. I hate seein her struggling and feelin so out of control. She's constant telling me she's 'shivering inside her body' and half the time its visible, the other half I think it's an internal feeling.
Thanks again. Hope you manage to get warm. Xxxx
Adrenal insufficiency
This seems to be more common than the docs have us believe. I've just been diagnosed with adrenal issues after having nearly 6 years on pred. The docs did free cortisol and severe syntacten tests and on all occasions cortisol couldn't be detected or was less than 22. No wonder I felt ill! I didn't know about the shivering and blood sugar levels. I'm being treated like Ratty with pred for asthma but hydro for the adrenal issue. I don't have a 'rescue' kit is this something I should ask for? After landing in A&E due to what I've now been told was a 'crisis' I'm scared. If its my asthma I know exactly what to, I have a written action plan. No-one seems to be able to give me the same for the adrenal issue although I now appreciate from this thread how dangerous it can be.
I'm having trouble coping with whats going on and I'm an adult, I can only say how 'lucky' all the children are to have parents to look out for them. I really feel for them, life tough enough when you're growing up without having to cope with not one but two conditions.
Any help/advice would be gratefully received.
Hi Rabbit,
Yes you should have a crisis kit and instruction in how to inject yourself (and even better a close partner/friend who can also do it if you are too unwell). It's basically little bottles (sorry, can't remember the medical word!) of 1ml Hydrocortisone and needles to inject yourself. You need it if you vomit more than twice and can't keep your hydro down or if you have an accident with risk of shock.
Ask your endo nurse about it - they should be the ones who show you what to do - the hospital provide the needles etc., but the hydro glass bottle thingies come on prescription from GP.
Rabbit- sorry to hear you have been suffering too.
What were your presenting symptoms when you arrived at hosp and diagnosed? Have they given you any info as to what you should do re crisis?
We have the kit of vials, syringes and needles etc from the hosp. Like Ratty says, two vomits can mean potential crisis. Maddie goes down too when she has any virus onboard which obviously due to Pred damaging the immunity, she gets quite a lot of!
We see the endocrinologist on wed for the first time. Is there anything I need to ask that may be beneficial? Obviously now v concerned she not on hydro so will definitely be asking about the possible need for that!
Ratty-are you warming up?
Hi
I have found this site useful to explain the background and about the medication:
Hydrocortisone is often given as it more closely 'resemble's the body's natural steriod than pred does, but AI can be treated with pred too. Pred stays in the body longer (and is 'stronger'), whereas hydro stays only for a few hours - which is why you have to take it several times a day (morning, lunch, afternoon). the idea is to mimic the body's own production of cortisol whichs is high first thing, then reduces during the day.
For example my son takes 5mg of hydro at breakfast and 2.5mg at 3pm - this is the equivalent of 1.5mg of pred. H eused to also take 2.5mg at lunchtime too. Plus he takes asthma meds too. I think for someone with 'total' adrenal suppression, the replacement amount is around 20mg -30mg a day (for adults).
The synacthen test (standard or short) should be taken with no hydro - ie when our son has this test, he does not have the afternoon dose or his dose in the morning. But his asthma meds - seretide and clenil - do not affect the test. I don't know where pred sits in this.
What is also important for the test results is the difference between the basal level of cortisol (the level taken at the start of the test) and the 'spike' (the spike needs to be around 550 or above to be normal) - the difference should be double or even treble I believe. It is important to see the basal level increase.
I find the problem with it is that due to the steriods, his immune system is low and so he gets all viruses and then gets them worse and for longer than other people, and it then flares up asthma.
He started back at school and already asthma has flared up and he is not as well as in the summer. We have increased his asthma meds.
Jackie, thank you so much. I am definately going to question maddies need to try hydro. We were told her 7am cortisol was so low (16) that her synachen test would be irrelevant so they actually cancelled it, despite being on the ward and ready for it!!!!
I wish they'd done it!!
Have been having a look on the addisons self help website.....
I really wish you every 'success' in the appointment.
I'm sure you'll get the support of the specialist endocrine nurses too - they can help with the day to day issues.
It's really worrying dealing with this isn't it, it just seems invisible to some extent yet takes over life so completely and the unpredictability of it is very hard.
I am already feeling stressed about this autumn as he is already struggling again with asthma and feeling 'grotty'.
I can so empathise with the worry about impending autumn. Maddie has had her asthma symptoms increase in the last few days and I'm more worried re how this all effects her adrenal symptoms. whether I need to double up on the pred or not! Her temp increased for a few hrs and I panicked about that too!! She has flaked a few times recently too!
Thanks so much for the best wishes. You seem so strong and in control re your sons AI. I so hope I can feel like that soon too.
Lots of love,
Emily x
Hi all sounds like Autumm is becoming a bit of a nightmare for all.., Dean still suffering from virus, now going on a least 10 days longer than his class mates and still all usual symptoms, tummy, head, chest and (throat) which tends to be the only symptom everyone else got..
jackie- I am sure when i last asked about pred and synactin test you are advised that if you are taking pred you need to wait 6 weeks post pred for test to give accurate reading, not sure if that was what you were asking? Dean is not on daily hydro but he has just has his 5ml pred for 4 days to give him a boost during virus but his recovery is slow, all activities on hold again and he is an emotional rollercoaster. I feel he needs or lacks something else and am panicking how long he will be down for. Tears again tonight as he got upset about whether he could manage judo in between stomach pains xxx
Thanks
Thanks for all the help, i'll give the websites a look. Didn't think there would be so much info around. Definately need to be more aware of my issues especially as many of the medics I'm seeing don't seem to be able to answer my questions because they don't frequently see them.
Scared about the winter as I'm already having symptoms earlier than other years. Don't want to go to a&e again. Felt stupid not knowing why what I thought were vague symptoms were a crisis. Have never been so cold or had a headache/dizziness like that. The cramps I thought were pmt & too much salbutamol. I felt like I was wasting the docs time although nothing was actually said to me. Now I know what's going on hopefully I'll recognise the signs & take action sooner. Do wish I had an endo nurse. My IV nurse is great if I want to just run something by her i'm not sure about without having to make an appointment. Could do with the same for the addisons. Would also be helpful if treatment was the same all over. Docs won't prescribe rescue hydro injections & it worries me, especially as I'm prone to being sick due to other meds. Sure the peace of mind from having it would be one less thing to be worried about & help my asthma control.
Sorry end of moan, thanks for letting me get things out of my system. Am still awake thanks to the rescue pred. Oh well can't have it all. Before addisons was diagnosed was complaining that I was always falling asleep. Goodnight all fellow insomniacs x
Well Maddie had her endocrine app today. It's been confirmed it's ""steroid induced adrenal failure"". All her symptoms were accountable due to Pred. - the excess hair, intolerance to cold, shivering/tremors, weight loss, lack of stamina, oral thrush, hypoglaecemia, tummy ache. The list goes on!!
She won't be having the synachen test as apparently she has no adrenal output so therefore would be not worth doing.
As for meds, she is still on Pred daily with the view to reduce that and introduce hydro too.
She had a bone density scan today too to check for bone age.
She is also being refered to a dietician to give input on certain foods that can stabalise her blood sugars as she's really struggling with this right now.
All in all very informative. BUT at the end of the day, she still has adrenal failure
I asked if he could see Maddie coming off pred and her adrenals reversing. He replied it has been noted that Maddie has ""life threatening asthma"" and with that in view, she won't be comin off pred
All tough to hear but also good in a way as we have direct answers to all her symptoms. At least maybe we can now move forward. Mind you, he listened in on her chest and sd ''mm, v wheezy""!! Oh great!!
Oh Emily, I am sorry to hear outcome xx but you will probably be glad to have an answer and not be constantly guessing all the time. I really hope you get the support now that you need for Maddie.
I recently started seeing a lady to help Dean who tests his hair, I know loads of people are skeptical regarding these things but our experience has been good so far and what impressed me the most was that she never reads personal illness problems until after test and as soon as she started testing Dean his adrenal gland was off the chart in the wrong direction. Any hoo it was just a thought.
Well done for getting through appt yesterday.xxxxxx Lainey
Really sorry to read about Maddie, but it is good to have definite information. I realise you
must need time to come to terms with it. We certainly did when Alex was diagnosed, especially thinking about all the medicines needed and the emergency kit.
Blood sugar levels - this is what I try to do and keep our son's levels even and in fact saw a nutrionist (privately) to help with this - my son has responded well to the changes in diet - we're not at the end point yet by any means, but he's been willing so far. I can message you what we eat/how we eat to keep blood sugar levels even, if you want.
This is a book which I have found very helpful as background, and also explains about blood sugar levels too ------- by James Wilson, called Adrenal Fatigue.
Sorry to hear that Emily. Knowing what you're dealing with should make things easier, but it's still something that's really tought to understand, I find it hard enough to explain how I'm feeling so I can't imagine what it's like for you with your daughter. I'm really struggling with mine at the moment - so cold, and just don't feel right - but how can you explain 'not feeling right' to medical professionals - they don't get it. I ended up in tears at my asthma appt today and felt rediculous but I'm at the had enough point.
Does anyone know if a similar forum to this wonderful place exists for adrenal supression?
Hi Ratty
there is the addisons uk support group - you have to pay £12 for the year for the online membership that gives you access to the online forum. I joined to get info to help my son but haven't been on the forum atall really. The actual website has lots of info on it.
I have come across some US websites, which are really active.
Really sorry you are suffering too. I feel really bad for my son now as his symptoms seem to be increasing now, and it affects his quality of life - it is hard to get the meds right.
Oh Ratty, you poor thing sending you massive hugs and warmth. Sounds like you are really struggling.
I too have looked for online support in regards to this. I looked at the addisons support site but felt that due to this being secondary adrenal insufficiency and not autoimmune addisons, I wasn't sure where we fitted in. I would sooo love somewhere though too. I have found this v tough. Mind you, now it's all been confirmed and all explained/ questions answered, I actually feel a sense of calm. Bet that sounds wierd. I just felt the 'not knowing' really screwed me up. At least I can be prepared on a practical level.
Jackie, have you doubled up the steroids? Poor thing.
So hope you are all ok. Hope Dean stays strong, and ratty, you stay well. Take care.
Lots of love
Emily x
Hi,
I feel really down right now as my son is ill again with the adrenal problems - his asthma has flared up this week so we increased the meds, he was needing salbulatamol quite often but in good spirits.
Then he got very tired today, and developed headache and tummy ache and said he felt terrible - and is now asleep. I gave 3 times his usual hydro - usual morning dose, then another at lunch, at 5pm and again at 6:30 as he said he felt so ill.
He's asleep now, I guess he won't be at school tomorrow.
He's been much better recently and now he's just got ill and exhausted and worn out - I know it's getting back to school, and autumn coming, but it really seems to happen so quickly - yesterday he seemed in good spirits and had good energy, even though asthma wasn't great, then by lunchtime today he was getting flaked out.
I really felt for him, but just didn't know how to make him feel better.
Is this the same as your children?
Anyway I just wanted to get in touch with other people who are in the same position.
Oh you poor thing and poor Dean you've deffo done the right thing re hydro. It's so scary when they are ill anyway but then when they have these adrenal issues, the impact is harsher
Yup, this is exactly what it's like with Maddie. She seems ok ish and then goes down like a fly. One minute she seems in good spirits and the next she is shaking, freezing cold, has tummy ache, and White as a sheet. It's scary. I've really noticed recently that if I give something sweet and a drink, things temporarily improve with her.
Will you take him to the gp tomorrow? How's his asthma doing?
Maddie keeps doing this harsh tremor/shiver. Her asthma has worsened the last wk or so and she has today come down with a cold too. Her temp is v unstable. Are due to see resp cons tues so hoping that she may try her on hydro too as I feel her adrenal is suffering.
I know what you mean about needing someone else who is going through the same fears. Maybe this thread is just the thing.
Can anyone just refresh my mind as to the acute adrenal symptoms their children suffer from?
Maddie has been complaining of tummy ache for a few days. Today she's been a bit grizzly and tonight hasn't settled at all and is crying that she's cold! That's all she keeps saying, that she's cold. Her temp is not too bad to be honest. (36.8)
Just wondered if these symptoms is her adrenal insufficiency rearing it's head or not!
Anyone??
Sorry to hear she's not well. I have adrenal insufficiency and the main symptoms of a crisis are...feeling the cold, tummy ache, nausea, vomiting, diarrhoea, weakness, fatigue, dizziness. My main symptoms before diagnosis were extreme tiredness and fatigue. You wouldn't necessarily get all of these symptoms though so if I were you it would be worth getting her checked over. Better safe than sorry xxxxx
When Maddie was diagnosed she slept alot and her blood sugars were all over the place. These have settled now but the intolerance to cold is back with vengeance!
If no better in next couple of days, I'll give the consultant a call.
Thanks again.
Hi Emily,
I have had to take my son once to A&E when I was worried about adrenal insufficiency, worried about if he needed the injection. He had had a cold, asthma was bad,
- he slept a huge amount for a day and the next day I tried to wake him but it was really hard to.
- So he had huge fatigue, not eating, very pale, found it hard to move; wanted to lie in bed, complained of tummy aches and headaches.
- I'd been doubling the hydro for the 2 days before, and so was worried that he didn't seem to be responding. I then, on advice of A&E, tripled the hydro till he was well again - and with that he got better.
Crikey jackie. That sounded terrifying. So glad he responded to tripling.
I've doubled up the last few days as she's been off sorts but not been able to put my finger on it. Today she's short of breath but the adrenal symptoms seem to be ok!! Wierd!!
It's all so confusing isn't it.
Thanks so much for the insight. Sorry you had to go through this though
X
Hi all, hope all kiddies are having a restful sunday .xx A wee update about Dean, he has since had his appointment with the endocrynologist who did have some interesting info. He stated that he would not split hairs with us over the cause of Deans 3 month spell of trips to hospital and non being able to attend school due to the fact that all the symptoms that the respiratory cons put down to viral were in fact all the same symptoms of low adrenal!! Finally someone was at least listening! However he also said that it may have been viral and when I asked him why that since this bed spell every time that dean now gets any virus he also displays the same symptoms as previously stated, Tummy, Head, feeling cold, chest pain ... his answer was that if you have a really bad virus like Strep that it is not entirely unreasonable that for the next few viruses that he catches he will continue to felt old symptoms nut each time for a lesser time? I have never heard this before? He also said that Dean technically should recover and that his next test due 11nov should show some improvement now that he is back to symbicort. Potentially he stated that Dean may feel worse when he is viral due to the fact that this is when your adrenals need to fire up and his may be bottoming out at this time?
I asked about the synactin test and to the levels they deem acceptable to produce symptoms and he did admit that this whole subject is a bit of a guessing game as there are no tested limits for children other that what hopsitals decide upon through general discussion therefore Wishaw hospital have liased with yorkhill and come up with their figures however other hospitals may have different amounts which I suppose why I have found out some children in different parts of UK who have better results than Dean are actually on daily adrenal medication.
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I ended up in tears at my asthma appt today and felt rediculous but I'm at the had enough point.
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