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January 11th 2008
04:23:54 PM
Name:  

CAH Support Group

Comments:  

Hi,

The Support Group website address has been changed to:

http://www.livingwithcah.com

There is a full forum there, so please do not post any messages here.

Many thanks
CAH Support Group

    Website Website    
January 11th 2008
01:09:44 AM
Name:  

Andrew

Comments:  

This new florinef tablet is very restricting, as it has to be kept refrigerated.

We are active, and like to make sure our boy gets out and about and enjoys as much exercise as possible.

Our pharmacist tells us that the efficacy of this new tablet decreases quickly if not refrigerated and that after a day out of the fridge it won't be of much use.

We cannot even keep both sets of tablets in the fridge, as the cortef are to be kept at room temperature. The new florinef tablets are white, further increasing the chances of error.

It is disturbing that some accountant trying to shave a few more pence for the drug company shareholders can have such a damaging impact on our family.

Given that non-compliance is an issue with an estimated 50% of children with CAH, isn't it a problem when dosing becomes that much more difficult?

   
January 7th 2008
10:24:19 PM
Name:  

Sue

Comments:  

Hi Sharron

Sorry to hear that you have suffered problems for years without any answers but if you do have CAH, then I am sure the diagnosis will be a relief to you! I assume that the blood tests you have had point in this direction and a synacthen test should confirm the diagnosis.

If you do have CAH, then you may need some medication to balance your hormones, although you obviously have a very mild form due to your late diagnosis. Obviously I do not know what you have been reading but you shouldn't be too alarmed. The internet is a great source but don't believe all you read, especially when it comes to medical conditions!

If CAH is confirmed after your synacthen test, I would advise you to request a referral to an endocrinologist, who has experience of treating the condition (if this is not automatically forthcoming). With the appropriate expert help, the problems you have suffered over the years can hopefully be resolved. Good luck with the tests and do let us know how you get on.

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January 7th 2008
09:47:10 PM
Name:  

Lee

Comments:  

HI Sharron
Untreated adrenal insufficiency certainly has a lot to answer for and is a chronic condition. I hope you get some answers soon

I had a mix up with my GP's surgery over christmas and the woman who does the referrals today told me they are still awaiting acceptance from the pct but to let me know things are happening. I think seeing that endo-surgeon inbetween slowed things down aswell. I have to see Professor Ross!

   
January 7th 2008
07:41:48 PM
Name:  

Sharron Elliott

Comments:  

Hi all, im new to all this and am nearly 39 years old, i know i have had a problem for about 15 years and was never really taken seriously but finally i hope that i will find out what all my problems have been about. I went to see a consultant in december 07 and after lots of blood being taken i have recieved a letter to say that i need to have a synacthen test done which i am having done on the 16th of this month. I am a little alarmed and amazed by what i have been reading lately but at the end of the day i just want to get to the bottom of all this.

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December 26th 2007
02:55:27 PM
Name:  

Rick

Comments:  

Hi Sheeta,

I think a fair way to sum up MedicAlerts is "you don't need them until you need them". Most people will thankfully never need one because many people are never involved in a serious accident. The whole point though, is that when you ARE involved in something serious, that's when you are least likely to be able to communicate yourself, and also when your CAH poses the greatest risk - with additional treatment, you may have dangerous consequences that someone without CAH may not experience.

Think of it like a seatbelt, you don't always need to use it, but when it is used, you definitely need it.

Regards


Rick

   
December 24th 2007
03:29:43 PM
Name:  

Gail

Comments:  

I have worn some sort of 'Medic Alert' disc since I was a baby, over 40 years. Although, thankfully, it has never been needed in a medical emergency it is reassuring to know that no matter where you are in the world the international sign for medicine used on one side of the disc should be recognised.
Best Wishes to everybody for a GREAT CHRISTMAS.

   
December 24th 2007
02:41:08 PM
Name:  

Catherine

Comments:  

Hi Sheeta
When my two boys went from their paeds endo to the adult he recommended that they wear id,I saw an advert for Medic Alert outside the clinic so I contacted them and they were very helpful.I pay 20 a year and the boys wear a necklet with a phone number on it, and if anything happens to them medical staff contact medic alert who inform them what is wrong and also what medication is needed.It gives me peace of mind as they are out with their friends and not with me as much

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December 24th 2007
12:32:22 PM
Name:  

sheeta

Comments:  

I went to the hospital recently and was advised by the CAH nurse that I need to wear a ID bracelet. I wanted to know ow important is it to wear one? ive been without it so far and am 29 now.

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December 23rd 2007
02:24:47 PM
Name:  

Anna

Comments:  

Thanks Sue that's reassuring, the last profile showed that she was slightly overtreated but nothing to worry about.So I guess it's just a case of waiting for the results of the latest one to come back. As for the measuring thing I am not surprised it's difficult to measure accurately, what a nasty piece of equipment, Scarlett gets nearly as upset being measured as she does having blood tests! This time I think they are right that she hasn't grown much though, I had noticed that she hadn't grown much because she hadn't changed size in clothes since the summer. Thanks again and happy christmas!

Email Email    
December 22nd 2007
03:42:42 PM
Name:  

Rick

Comments:  

Hi Catherine.

I can't speak from personal experience since I don't take it, but I know of people who do and have had no problems with the new type (apart from the inconvenience of keeping it chilled!).

Regards, and best wishes for Christmas.

Rick

   
December 22nd 2007
10:59:10 AM
Name:  

Catherine

Comments:  

Hi I have two sons with CAH aged 18 & 19 and they are both doing fine but what i wanted to ask has anyone had the new type of fludrocortisone? I picked up a repeat prescription yesterday and the pharmacist told me that I had to keep the fludrocortisone in the fridge and also the tablet is now white. I phoned the manufacturer and they said it was to increase the shelf life of the tablets. The boys do not go back to see their endroconologist until May (we have just recently been there) but I wondered if any of you have had the new tablets and was there any problems.
Many thanks Catherine
ps I wish you all a very merry Christmas and a prosperous 2008

Email Email    
December 21st 2007
09:22:03 PM
Name:  

Sue

Comments:  

Hi Anna, It is very rare that a child remains consistently on the same growth percentile and if you are only talking about a few months of slow growth, I doubt there is really a problem, especially as your daughters medication hasn't even been increased in the interim. It can also be very difficult to accurately measure a very young child - I remember once my son was measured 2cms differently by 2 different people on the same day in clinic!

It is true that too high a dose of hydrocortisone can affect growth but if caused by over treatment, it usually slows the bone-age down too, so growth is just delayed, rather than lost. I really wouldn't worry too much. The doctor you saw is obviously vigilant and as a precaution is doing all the necessary tests to ensure your daughter is receiving the correct amount of medication, which is good to hear!

Email Email    
December 21st 2007
08:33:20 AM
Name:  

Anna

Comments:  

My daughter (15months) had endocrine clinic yesterday, it seems her growth has slowed down significantly. I saw a visiting consultant and she said to wait for the results of her latest profiles but that the most likely cause is over treatment. Her dose is the same as it was when I did the last profiles in August and they were fine. Is it possible that she needs less hydrocortisone now even though she has got (very slightly!) bigger? And will this mean she will end up smaller now or can she catch up when the dose is adjusted? I am a bit worried as she has always been average height and weight until now.

Email Email    
December 18th 2007
04:23:47 PM
Name:  

Sue

Comments:  

Hi Lee, If the Isocort is making you feel better, then stay on it but do let Prof Ross know how much you are taking and how long you have been on it when you see him, so he can take this into account. If he wants you to come off it, then he will say and can arrange more tests on a follow up appointment. It may even be useful to have the two sets of tests to compare.

I think it is a shame that you have had to try over the counter treatment in desperation but you will be receiving the good specialist help you deserve soon, so relax and try not to worry (easier said than done, I know!!!) and have a great Christmas.

   
December 18th 2007
12:15:19 PM
Name:  

Lee

Comments:  

The only thing concerning me is if I should now start to come off Isocort for my appointment if he wants to run more adrenal function tests? Really after effectively failing the stim I should have had the long synacthen test done straight away. I also have a 24 hour saliva test showing the same thing after the morning period I am gone.
So glad to be getting to see someone who specialises in this field!

   
December 17th 2007
05:29:09 PM
Name:  

Sue

Comments:  

That's great Lee!

   
December 17th 2007
04:12:47 PM
Name:  

Lee

Comments:  

HI Sue
I got through to the surgery and there doesn't seem to be a problem with the PCT and getting me referred to Prof Ross. Hopefully things go ok from here

Best Regards
Lee

   
December 17th 2007
02:20:56 PM
Name:  

Sue

Comments:  

Hi Lee, Don't worry, GP's do have to get PCT approval for referring out of area - I am actually impressed yours is going to get you an answer by this afternoon! If it is refused, you can appeal and if you give good enough reasons, it is usually agreed. Explaining your disatisfaction with the Dr you have already seen and the fact that Prof Ross has been recommended to you as he has a special interest in adrenal conditions, should sway it, as there are few specialists in the Country who claim this. Under the patients charter you are entitled to a sceond opinion and as long as the request is reasonable (which to my mind yours is!), patients do generally get approval. After all, the extra cost of seeing a consultant out of area, is minimal to the NHS, as it is the patient who has to pay their travel!

Do let us know the outcome. Fingers crossed....

   
December 17th 2007
12:39:02 PM
Name:  

Lee

Comments:  

I have been to see my GP today and have to phone him again at 3pm about getting the appointment approved by the PCT for going out of my area on the NHS. How annoying is this? I hope this goes through. I don't know if I could ask Prof Ross to make a request to see me otherwise, seems ridiculous

I am praying this goes through

   


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