Cushing’s Syndrome
Ivy has the beginnings of Cushing’s Syndrome.
Here is a picture of Ivy when she started the prednisone
.
This was about a month in, January, weighing just under 12 kgs
This is Ivy at the beginning of May.
Weighing it at 15kgs.
See her face, the roundness, the loss of her neck? It’s known as ‘moonface’ and is a typical sign of Cushing’s.
I know, what she really needs is to get off the Pred but that is not an option, right now.
She also has;
rapid weight gain (obviously) but only on her trunk and in her face, it’s not all fat, it’s mostly fluid,
increased hair growth on her body,
joint pain,
and fatigue
and it’s getting worse.
With each day that she stays on the high levels of prednisone, the disease progresses.
It puts her at all kinds of risk for other things too, like stroke, heart attack, diabetes and brittle bones.
She is displaying symptoms of diabetes, with increased thirst and increased urine output.
That is why we need an endocrinologist.
Now.
Not in five months.
We got our letter today, giving us a date for our first appointment for the 22nd of September.
Am I the only one who thinks this is not ok?
NO WAY is that ok !!!!!
Is there someone who can go into bat for you and get you seen as urgent ??
You’re right, there is not ONE way in which any of this is okay! I hadn’t realized how dramatic that change was until you showed those two pictures!! I’m so sorry, hon. I’m praying that someone gets some sense and gets you in much sooner!! Is there anyone you can harrass? If there is, harrass them. Every day. This is NOT okay!
And if you need to, come to the USA, to my town…you and Ivy can sleep on my couch and go to the best children’s hospital around
Start ringing the Children’s Hosp in Sydney and light a fire under that paed’s lazy, good for nothing backside PRONTO!
Get your GP to ring around and/or write a referral to the Endo outpatients clinic at the Children’s Hosp, get the GP to state on the phone and in writing that It.Is.Urgent.
Tell the paed this Is.Not.Acceptable.
Tell him to start earning his damn degrees and either
A) get you an appointment earlier than Sept or
B) refer you to a decent paed who is willing to do something pro-active for his/her patients.
I know you’re in the country and have stuff all choices when it comes to health care but this guy has let you and Ivy down time and time again. He’s proven with his track record that he doesn’t have Ivy’s best interests at heart, going so far as to call you names when you question his (later proven incorrect) decisions.
You lost trust in him a long time ago Tiff and you’re wasting all your mental and physical energy on second guessing his ideas/decisions, researching the problems to watch out for with medications he’s prescribing, having to argue with him against further,useless procedures and tests on Ivy - This is NOT the healthy relationship between parent and paed.
Go to the specialist who saw Ivy and ask for some names of paeds she can recommend.
You might have to settle for one based in Sydney and face travel but, once you have someone you can trust and who can do something decent towards stablising Ivy, hopefully you wouldn’t have such constant travel to visits and appointments ahead of you.
(((((((hugs)))))))
*nods* I second everything that Jayne has said hon.
Start getting on the phone, lighting fires and sending up smoke signals.
This IS with the paed pushing for a sooner appointment but you are right, I will ring and ask for a referral to another endo in Sydney.
All I can do is echo everything the wise Jayne said. Push, push and push some more.
Get in their faces. Ring them everyday. Hourly if need be.
I especially agree with Jayne’s suggestion you find a better paed. This is not a good situation.
There HAS to be an endo that will see you sooner - there just HAS to be. Your poor baby girl, and poor you.
Sending you plenty of hugs and positive thoughts.
Love,
Suze
I think it’s time to come visit Auntie Shannon for an extended period of time. IN CANADA.
Tiff, I have tears for and Ivy, and you, and the absurdity that is our medical system. Yes, you need to light fires, I hope your friends and family can give you the strength to do so. I hope you get a break SOON, you and Ivy. I agree with the others, there HAS to be someone who will see you sooner.
Good luck Tiff, sending you massive hugs xoxo
I’d like to add my two cents here. I’ve met the paed in question. He is highly regarded in our area, and I honestly doubt if anyone else could have done more for Ivy. Don’t get me wrong, I haven’t always agreed with his decisions, but I don’t think changing doctors at this point would be in the best interests of the Ivy-girl. Unfortunately, the level of care in this state is dismal. It’s not even a matter of living in the boonies. Tiff has proven time and time again that she will go anywhere and do anything to procure treatment for Ives- it’s just that the services are so under-resourced and demand is so high, that waiting lists are a fact of life. My own GP has a 6 month waiting list. Tell me how on earth anyone knows they are going to be sick in 6 months’ time? And that’s just a GP, never mind a specialist.
I have written numerous letters to my MP with regard to the lack of medical care available in this region. His last response indicated that they are currently establishing a telephone service. Can you imagine that? You ring a Helpline, wait on hold for hours, discuss your symptoms with a nurse, who decides whether or not you have to go to the emergency department of the local hospital. And we pay taxes for this?
I don’t know whether or not healthcare is any better elsewhere in the state, or indeed the country. I do know that a friend visited a medical centre in Sydney one day last week, walked straight in, saw a doctor, and he treated her condition with acupuncture on the spot. And he bulk-billed her! Maybe we all need to go to Sydney to consult a GP!!
Totally unacceptable.
You say the paed is pushing for an earlier date but is this with the one Endo? Maybe you need to see another one. Speak to your GP and let him know how dissatisfied you are. Get a list of names from him and ring them all. Check earliest appointment dates and the likelihood of cancellations. Ring the Children’s Hospital and find out the Endos who run the clinics. They most probably have a private Practice.
When it comes to the paed I’d be moving on. It sounds like the trust has gone. Even if he is the best qualified in the country it doesn’t make him the greatest. If there is no trust or respect then he is no good to you or Ivy. But of course that has to be your call. Being a longtime worker in the system I get extremely frustrated when I hear of things like this and I have had negative personal experience too.
First things first…find yourself an Endo!!
Good luck!
Sounds like a email to one of those tacky so called current affairs shows is needed! That should get her seen too faster!
It most certainly is not okay
Definitely not ok
I can only second what the others have said - KEEP PUSHING. I don’t think there’s any point in changing doctors at this point though, you’ll just have to go through the whole rigmarole with them not knowing everything about Ivy and you being frustrated at having to explain it all to them 
((huge hugs)) I really wish I could just take it all away from you all
I have been lurking here for a while, but just wanted to de-lurk to say that in Sydney it depends on who you want to see to get an appointment. I can get an appointment with a GP the next day if necessary with one of 2 doctors. One bulk bills (so no charge for me) and I can expect to wait at least an hour. The other bulk bills for kids and not for adults and I can expect to wait about an hour. Oh and there’s a third one that I might have to wait a week for an appointment, pay full fees and still wait for an hour.
As for specialists, I think that its the luck of the draw too. The ENT that my kids go to can have a wait for a couple of months or more, depending on whether you are a new patient or not. That seems to make a big difference to waiting times. New patients wait ages and then once you have seen them once you could get an appointment almost every week if you wanted to. Go figure………
I would agree with what the others have said - keep pushing and pushing. Find the names of some other endo’s here in Sydney and give them a call. See what the lead times for an appointment are like. There is no harm in asking. And maybe be so bold as to make appointments with at least a couple and ask to be put on a waiting list for a sooner appointment. If one of them comes through sooner, rush off to the GP and get the referral.
And it sucks that you have to fight battles with the health professionals, as well as the daily battles that you face. Sending you vast amounts of strength and patience to get through it all.
I cant offer anything other than moral support Tiff..I wish that I could push buttons and get things done for you but all I can do is sit here and think ,”Fuck this really sucks!!!”
((((hugs))))
kim xxx
Not Ok. Try your local member of parliament. One of my friends had trouble with getting an older person into a local hospital and our local member made all the difference.
All the best. Thinking of you and the trial you are experiencing. Wish I could think of something to do and hope that someone who can help reads your blog -soon - yesterday in fact.
I am just going to flick you an email on this…
I like Fiona’s idea. Send an email to A Current Affair, do it A.S.A.P.
And dump that paed. Do it yesterday. Ivy’s life is at stake here.
Damn the health system is going to shit, if this is what you get WITH the paed pushing.
It is NOT okay. Maybe you could go public and talk to A Current Affair or someone?
Haha, I suggested ACC without even reading the other comments about it.
No, that’s not ok.
I’m sorry Tiff.
Wow. Um, you know the word I wanna say….
I know the others mean well telling you to push, and please guys don’t take offense, but I know you are doing all the pushing you can to get your baby girl seen ASAP. It is the system that sucks.
But I have a little tip for you babe. Ring the endo office, hope to God you get an ‘older woman’ not some young chicky babe with no kids. Start off confirming the appointment and asking to be put on a waiting list. Cry. A lot. Talking about her pain and how you can’t cope seeing her like that. Talk about you are worried about how fast she is gaining weight, stack it on - talk about laboured breathing and snoring from the sudden weight gain. Anything to make her think that you are at the end of your rope and NOT coping. Sometimes it works in getting bumped up the list.
It did for me with Boo. 18 months become a few weeks. And it has worked for a few others I know too. They always have spare spots for emergencies.
I will be sending you positive strength vibes hoping it works for you.
Hey, Kelley, now that’s what I was looking for, a really good idea - one that would work.
Tiff, that sounds like a plan to me. Kelley is right, I’ve had success with that method before too!
Tiff - (hugs) I am sorry you must be so worried - It isn’t acceptable - I thought the same thing about Ivy myself when I saw the photos last night - the pred - she has changed so much since I last saw her.
I know like Tracey said you have done everything in your power to push already.
Having worked in the hospital system ourselves -you and I know it sucks .It is unacceptable that you have to fight battles with the Paed , ENT and other health professionals, as well as the daily struggles that you face caring for one very sick little girl and six other children who need you too.
I offer all my support and I am sending you vast amounts of strength and patience see this through.
I too wish that I could push buttons ,kick butts and offer better advice to get things done for you but it wouldn’t be more than you have and David have tried yourself.I know you have. I will chat to you.
(hugs) and Lindt balls …next week !
My word when you see the two pictures side by side, the difference is startling.
I hope so much you can push things forward or at the very least she remains in the best of health until the gits get off their holes.
I am SO NOT OK with that! They are really not paying attention to her needs!
Praying hard for her and for you and also that the docs find a way to give her more immediate care!
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OMW that’s too long to wait!
She looks like a completely different child. I’ve only been reading your blog for a relatively short time, but now I really understand your frustration.
Isn’t there anyone else you can see? What about travelling somewhere to see another specialist? Kelley’s idea sounds like a good idea to me actually.
That is most certainly not alright. That is outrageous! I’m so sorry, and hope that you will get through to someone with enough compassion and knowledge to understand the importance of early intervention.
Sending many *hugs*
I found the change in those photos quite shocking. It must be heartbreaking for you to have to watch the change in your child. I hope some of theses suggestions work. Prayers and best wishes for you and Ivy.
Tiff, I’m sorry I didn’t mean to sound like I was cross at you or having a go at you.
I know how hard you work and do the hard yards for all your kids, especially Ivy.
I’ve been through the mill with paeds for Feral Beast over the years, some good, some revolting and a handful of child psychiatrists, ENT’s, psychologists, Neuro specialists, speech therapists, allergists,geneticists, tactile and play therapists, you-name-them-and-we’ve-seen-them-ists !
We finally have a fantastic paed who specialises in Autism, lives 5 mins walk from us, bulk bills, knows what he’s talking about, is a really nice bloke who doesn’t dismiss anything or talk down to us and who is available on the phone during an emergency at any time of the day or night. But it took us a long time to find him with plenty of dross along the way who called myself plenty of names, some who doped FB up to the eyeballs on adult medication (against my better judgment) until he was sick with side effects, some who refused to even look at previous test results or case notes before they changed other medication that was working, one who decided the old “refrigerator mother” syndrome was the problem and another who even questioned if there was anything really wrong with a 3 year old who spent 8 hours of the day screaming!
I’m just cross with a system that lets our kids down time and time again.
It is NOT ok, it is FUCKING outrageous! We are talking about YOUR baby girl!
Oh Tiff, I am so frustrated for you. It is out fucking rageous! System or no system, paed calling to push the appointment along or not, it is WRONG.
JUST GET HER AN APPOINTMENT!
Yes, get on the phone and start making some noises. September is far too far away to wait that long and it’s ridiculous that you should. My son has allergies and to get in and see an allergist takes about four months but if it were something urgent he could see someone at the Children’s hospital. Surely you can do the same?
Good luck and fingers crossed!
Want to picket, Tiff? I can dig out some of my old signs — I haven’t been to a good specialist ’sit in’ for some time now…
I really feel for you on this one and you’re right — soooooo NOT ok. Keep pushing Tiff and don’t give in. I think every one of Jacqui’s medical charts must have a big red marker pen note on the front reading something like: “Mom is a crazy psycho — If you love your life, DON’T agitate her!!!”
I wish you didn’t have to deal with yet another obstacle…
That is SO. NOT. O.K.!
That is wrong, wrong, wrong.
Hugs to you all…