Aa
Further Investigations
My son had a second Synacthen test done last month in the hope that it would show improvement over the December one as he is on a greatly reduced dose of inhaled steroid! No such luck. There is no improvement at all. So, our paed is going to get the paed with an Endo interest to see him again. He saw Rob in January and did some bloods, the main one being for Adrenal Antibodies but the results are not in his notes! Our paed thinks Rob will need further planned tests but I didn't ask what!!! How stupid am I?
Any ideas what tests may come next?
Any ideas what tests may come next?
It is so frustrating. I feel that since his diagnosis I have done my utmost to learn about this disease and know him and how he reacts etc. but the medics are sooooo sure they know best. If it falls withing their 'normal'limits then there is nothing wrong!
It really was a sneak attack and I just hope we don't have any more of them as this was sooo stressful. Why won't doctors or more especially nurses take on board that I have known my son for 15 years and I have had to fight for 15 years to get medics to see what I see with him!
I will keep fighting and I will keep chipping away at the medics. They will not leave my son like that again!
We are looking for ways to spot a problem before it becomes a problem if you see what I mean?
Thanks to the knowledge from others who REALLY understand what it is like to deal with adrenal insufficiency has been a lifesaver for my boy!
It really was a sneak attack and I just hope we don't have any more of them as this was sooo stressful. Why won't doctors or more especially nurses take on board that I have known my son for 15 years and I have had to fight for 15 years to get medics to see what I see with him!
I will keep fighting and I will keep chipping away at the medics. They will not leave my son like that again!
We are looking for ways to spot a problem before it becomes a problem if you see what I mean?
Thanks to the knowledge from others who REALLY understand what it is like to deal with adrenal insufficiency has been a lifesaver for my boy!
Sorry you had a sneak attack.
Yeah, they were wrong to just use his BP as a marker - oh yeah. lets just wait until he drops.
In my records, where my K, NA, cal, magnesium, red and white blood cells went down, I had a 103.5 fever, a near heart attack, etc. - my records say "she did have all the symptoms of an adrenal crisis" - TRUE STORY!!!
Yeah, they were wrong to just use his BP as a marker - oh yeah. lets just wait until he drops.
In my records, where my K, NA, cal, magnesium, red and white blood cells went down, I had a 103.5 fever, a near heart attack, etc. - my records say "she did have all the symptoms of an adrenal crisis" - TRUE STORY!!!
Thanks for that rumpled.
R has just had ANOTHER crisis! This one was brought on by a viral infection that didn't show up till 2 days later! Ear and throat!
Nightmare! The docs this time and the nurses were hell on earth! They didn't listen to me and because his BP had come up by the time we got to the hospital bloods etc weren't done till his BP was 70/30 and he was semi concious! So, IV HC and LOTS of fluids and he was okayish.
Thankfully our consultant was on this weekend and is going to speed up things by talking to the specialist tomorrow, can't today as it is a locel holiday there. They will put together a management plan for us AND the hospital to follow if he is admitted and arrange further investigations to establish, if posible, the reason for the adrenal insufficiency.
Watch this space. He is on a stress dose again and we will see what happens! I am at the end of my ability to cope with all this. I want answers and I want them yesterday!
R has just had ANOTHER crisis! This one was brought on by a viral infection that didn't show up till 2 days later! Ear and throat!
Nightmare! The docs this time and the nurses were hell on earth! They didn't listen to me and because his BP had come up by the time we got to the hospital bloods etc weren't done till his BP was 70/30 and he was semi concious! So, IV HC and LOTS of fluids and he was okayish.
Thankfully our consultant was on this weekend and is going to speed up things by talking to the specialist tomorrow, can't today as it is a locel holiday there. They will put together a management plan for us AND the hospital to follow if he is admitted and arrange further investigations to establish, if posible, the reason for the adrenal insufficiency.
Watch this space. He is on a stress dose again and we will see what happens! I am at the end of my ability to cope with all this. I want answers and I want them yesterday!
Honestly, few of us are textbook! But the docs don't see that!
Usually the sodium will raise the BP - which is why my doc pushes me to go sodium (take salt!) before cortef to see if that will knock the socks off the crisis - and it is easier on the bones - and I still have the cortef handy... the salt works fast for me if it is going to work, if not, I take cortef.
I also have emergency shots and anti-nausea pills on hand.
Usually the sodium will raise the BP - which is why my doc pushes me to go sodium (take salt!) before cortef to see if that will knock the socks off the crisis - and it is easier on the bones - and I still have the cortef handy... the salt works fast for me if it is going to work, if not, I take cortef.
I also have emergency shots and anti-nausea pills on hand.
I just find it hard to get doctors to listen full stop!
Last crisis Rob had his BP was still in his boots after 120mg HC (20mg oral, 100mg IM) and they would not give him any more as his sodium was fine! 3 hours later his BP was still very low for him. They had given IV fluids and I managed to persuade them that him having a low BP and being drowsy was not a good plan!
I just feel totally out of my depth at times like that as I need them to either do what is needed or give me the kit and let me get on with it! I make a lousy patient and a worse parent of a patient!
Rob has NEVER presented with anything classically! If you want textbook, he is not it!
Last crisis Rob had his BP was still in his boots after 120mg HC (20mg oral, 100mg IM) and they would not give him any more as his sodium was fine! 3 hours later his BP was still very low for him. They had given IV fluids and I managed to persuade them that him having a low BP and being drowsy was not a good plan!
I just feel totally out of my depth at times like that as I need them to either do what is needed or give me the kit and let me get on with it! I make a lousy patient and a worse parent of a patient!
Rob has NEVER presented with anything classically! If you want textbook, he is not it!
I can't use the artificial sweeteners either - so I go V8. It naturally has high K and lots of salt that is bad for everyone else.
Yes, I was raised with hardly any salt. Now I have about 7 kinds of sea salt floating around, carry it with me (and salt tabs) and salt everything (after cooking) much to the dismay of my hubby with high blood pressure. :)
I only know my tank as I was in the hospital getting a treatment (to help boost my immune system, right) and I dropped NA, K, magnesium, red blood cells, white blood cells, calcium, etc etc - almost had a heart attack. My tumor twin also drops K when she gets sick. I know another without adrenals that drops K too. Since that is not the norm - it is hard to get them to test let along listen.
Yes, I was raised with hardly any salt. Now I have about 7 kinds of sea salt floating around, carry it with me (and salt tabs) and salt everything (after cooking) much to the dismay of my hubby with high blood pressure. :)
I only know my tank as I was in the hospital getting a treatment (to help boost my immune system, right) and I dropped NA, K, magnesium, red blood cells, white blood cells, calcium, etc etc - almost had a heart attack. My tumor twin also drops K when she gets sick. I know another without adrenals that drops K too. Since that is not the norm - it is hard to get them to test let along listen.
Now that is interesting about dropping the K as well as the Na. I was going to get him to avoid gatorade as it has K in it but Lucosade doesn't. We use Gatorade as it doesn't have artificial sweetners which have caused him problems in the past with his ADHD. It is a hard balancing act with this kid! It is finding things he can and will drink versus what is good for him!
I did wonder what the point of telling me his Sodium was 'normal' after that much HC! I would like to be amazed at how little doctors understand but I am not! Seems to be the norm for them to BS the rest of us!
I did wonder what the point of telling me his Sodium was 'normal' after that much HC! I would like to be amazed at how little doctors understand but I am not! Seems to be the norm for them to BS the rest of us!
Uh yeah, checking sodium after stress dosing - does not tell them anything.
The only bad thing about the gatorades is the high sugar content... there are some drinks, they come in packets, that are lower in sugar - but as long as that works...
I use V8 but I know I tank in potassium too - the usual is to drop in NA and spike in K, but a minority of us drop in both - so ask to get tested in both before he gets dosed so you know how to dose him. If he spikes, avoid K when he is feeling wonky, if he drops, then he needs both.
The only bad thing about the gatorades is the high sugar content... there are some drinks, they come in packets, that are lower in sugar - but as long as that works...
I use V8 but I know I tank in potassium too - the usual is to drop in NA and spike in K, but a minority of us drop in both - so ask to get tested in both before he gets dosed so you know how to dose him. If he spikes, avoid K when he is feeling wonky, if he drops, then he needs both.
I have heard a lot about florinef but R is not on this. At the moment he is only on hydrocortisone. When he had his last crisis his sodium levels were just within normal levels but this was after he had been given 20mg oral HC and 100mg IM!
We are trying to unlearn the healthy eating stuff about salt and encourage him to have saltier foods now. Not easy! But that plus sports drinks are doing great things when he has been playing sport. He dropped his blood pressure the morning after a hard training session the other night so we upped his dose of HC before the next session and that has done the trick!
As far as I know he has not had Aldosterone and Renin levels checked. I will ask when we see the Endo. It is going to be a LONG list of things to discuss!
We are trying to unlearn the healthy eating stuff about salt and encourage him to have saltier foods now. Not easy! But that plus sports drinks are doing great things when he has been playing sport. He dropped his blood pressure the morning after a hard training session the other night so we upped his dose of HC before the next session and that has done the trick!
As far as I know he has not had Aldosterone and Renin levels checked. I will ask when we see the Endo. It is going to be a LONG list of things to discuss!
The florinef will help him hold sodium, and if on the right level (to much makes one rather puffy or fluffy), it helps hold off the crisis's as you keep levels up.
Some people do not need it though. Does he ever get tested for aldosterone and renin?
As for doc reaching end of expertise - some patients sometimes do so much research that there are some of them that are way better than most docs. I read a lot, but I still have a lot to learn.
Some people do not need it though. Does he ever get tested for aldosterone and renin?
As for doc reaching end of expertise - some patients sometimes do so much research that there are some of them that are way better than most docs. I read a lot, but I still have a lot to learn.
To be honest, rumpled, I have no real idea what they are thinking! I know he had his adrenal antibodies tested for in January but those results have not made it to his notes and no one knows if they actually came back to the hospital!
When we get an appointment for the paed endo I will have to make a list and ask them. The general paed we have seen has reached the end of her knowledge and is asking the endo to see and advise.
I have so much to learn!
When we get an appointment for the paed endo I will have to make a list and ask them. The general paed we have seen has reached the end of her knowledge and is asking the endo to see and advise.
I have so much to learn!
Are they going to put him on florinef? I forget his age - but are they thinking about DHEA as well for the androgens? Adrenals have a hand in that too.
Sorry! I forget the terminology etc is different between the UK and US!
A Synacthen is when they take baseline cortisol readings and then give synthetic ACTH and measure the cortisol response every 30 mins for a specified period. My son's responses have been poor both times as well as his baseline cortisol being very low!
He has now been decleared 'interesting' by his paediatrician! I hope this means she will pull out all the stops to ensure he gets the investigations and treatment he needs to be as well as he can be as much of the time as possible. We are all on a learning curve!
Rob, my son, has been on hydrocortisone since the results of his first synacthen in December. In that time he has had 2 crises and numerous near misses but we are learning. Slowly but surely.
Ruth
A Synacthen is when they take baseline cortisol readings and then give synthetic ACTH and measure the cortisol response every 30 mins for a specified period. My son's responses have been poor both times as well as his baseline cortisol being very low!
He has now been decleared 'interesting' by his paediatrician! I hope this means she will pull out all the stops to ensure he gets the investigations and treatment he needs to be as well as he can be as much of the time as possible. We are all on a learning curve!
Rob, my son, has been on hydrocortisone since the results of his first synacthen in December. In that time he has had 2 crises and numerous near misses but we are learning. Slowly but surely.
Ruth
I am not sure how it is for you in the UK...here in the US, my husband's endo actually when he came in and saw him on the 1st visit, said to him, "I think you have Addison's"...of course he took a lengthy history...and one of the 1st tests he did was the ACTH test...which he said he would expect my husband to "fail"...and that would point to the adrenal insuff...there is also the Cortrosyn test...but, I am not sure if they are the same things your son has already had...as I am not familiar with the term "Synacthen". The day my husband's Dr. got the results of his ACTH test, which hubby did "fail" (unfortunately, but glad to get a diagnosis, as he was feeling so ill...)the Dr.called in the cortisol, and put him on the dose immediately. From what I gather If AI is confirmed, it is recommended to start the treatment immediately, and do further testing as needed...Now, I must also say, according to his Endo Dr., my husband's case is one of the most severe he treats...
I am sure there will be some others along who know more and can help you out more...until then I hope this helps some...
C
I am sure there will be some others along who know more and can help you out more...until then I hope this helps some...
C
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