What tests would you suggest for my 14 yr old young lad?

[JoanDublin]

Any luck yet Joan?

Hiya Justy
I shot off another email yesterday and will ring them today. The last phone call was a bit awkward as the lady was a bit 'short' just saying they would be in touch.... I didn't want to piss them off totally! Lol! Also her English wasn't great so it was a very brief call. Anyway, I'll give it another shot.

Delighted to see a plan in place for you in your other thread btw but you must be so angry with the lack of investigation over the years with your own doctors

It's so exhausting doing all this advocacy isn't it? One step forward, two steps backward

 

[JoanDublin]

@justy
I got through to them on the phone. Yay! They just emailed me the information. Earliest appointment will be October so now time to get cracking... Thanks for the prod

 

[shahida]

Just want to say what a great warrior you are for your son Joan- I know you'd probably say it's what any mother/parent would do but so many of us have family who just refuse point blank to listen and totally dismiss us, which when you're vulnerable is so cruel- and a dereliction of duty.Also I think the earlier you get at it the more chance you have of better recovery before it becomes entrenched and chronic-just my experience.

 

[justy]

So glad you have things moving now with the clinic. I know they can sound a bit short on the phone - but when I was there everyone was really lovely, including the receptionist who I thought I had been hassling.

Hopefully October will come around quick enough, and it gives you plenty of time to prepare for the appointment, travelling etc. Also gives your son lots of time to rest before going - he will need his strength for the journey and appointments.

I would also like to second what shahida said - he is so lucky to have you as his mum, to fight his corner.

Please feel free to PM me if you want to chat about anything to do with the clinic, area and appointment - there are also others on here who have lots of experience of the clinic who may chime in.

Take care,
Justy.

 

[JoanDublin]

Just want to say what a great warrior you are for your son Joan- I know you'd probably say it's what any mother/parent would do but so many of us have family who just refuse point blank to listen and totally dismiss us, which when you're vulnerable is so cruel- and a dereliction of duty.Also I think the earlier you get at it the more chance you have of better recovery before it becomes entrenched and chronic-just my experience.

Why thank you for those kind words This whole journey has been peppered with those who don't 'believe' him but alongside that I have good friends and family that are very supportive. He is my foster son so he only has me and my circle. I'm nervous about this whole journey with KDM because to be honest I don't know if I can follow it up with treatment, given the cost. I will apply to the local health board for some or all of the costs but I know this is going to be a difficult battle because of the 'unconventional' nature of the testing/treatments, etc. He has several doctors here who may not take too kindly to this step and I have to be careful to balance his needs out with their reaction. I dont want them taking him off me and making things 100 times worse for him.

 

[Gingergrrl]

@JoanDublin I agree with Shahida as well that you are an amazing foster mother and just MOTHER period and I believe you are doing the right thing.

Did you mean in your above post that they could remove your son from your care for getting medical treatment outside the country? Or just medical treatment not approved by NHS? Sorry I don't know if it is called NHS in Ireland?!

 

[JoanDublin]

@JoanDublin I agree with Shahida as well that you are an amazing foster mother and just MOTHER period and I believe you are doing the right thing.

Did you mean in your above post that they could remove your son from your care for getting medical treatment outside the country? Or just medical treatment not approved by NHS? Sorry I don't know if it is called NHS in Ireland?!

Hi Ginger
I'm not even sure what I mean myself! I just worry that somewhere along the line one of his docs or the social work department may say they don't feel another doc outside the jurisdiction can offer anything new and might just decide to block it. Doctors sometimes don't like to be challenged.....

Ultimately he is in the care of the State and they get the final say. Mind you, I did hedge my bets a while ago and applied for 'enhanced rights' through the courts which I was granted. This means I can make medical decisions for him so maybe I'm just worrying about nothing. If they tried to remove him I would go to court immediately to try and prevent them. The social workers are very supportive so I guess I shouldn't worry too much at this stage.

The other thing that worries me is trying to make a case to them for funding this or at least part funding it. I have had to reduce my hours from 40 to 11 per week over the past 18 months to be able to look after him so money is tight enough. The only chance of getting them on board financially would be to have a fairly watertight case that this trip would produce something that couldn't be produced here in Ireland and I'm already fretting over how I could make that case given the fact that I don't understand the names of some of the tests never mind what they might turn up Also from what I've seen so far, I'd say its hard enough to get clear info or support from KDM in order to make that case. He's just too busy to be asking him for that level of support.

Then there is the ongoing treatment, if recommended. Could I access it here in Ireland? Most likely not. I'm following @RML journey and she is having to relocate there for three months to get treatment. I simply couldnt afford to do that.

Maybe I'm worrying about too much too soon and I should just take each step at a time. My head is melted with it all.

Oh, by the way, the public medical system here is called the HSE (Health Service Executive)

 

[Gingergrrl]

@JoanDublin it sounds like you should be okay if you were granted the right to make health care decisions for your son. But I would be anxious about it too if I were in your shoes! The place where I just had my appt (OMI) treats children too but I know it would be far more expensive coming to the US than Belgium (on all levels) so probably not an option.

 

[taniaaust1]

Hi Ginger
I'm not even sure what I mean myself! I just worry that somewhere along the line one of his docs or the social work department may say they don't feel another doc outside the jurisdiction can offer anything new and might just decide to block it. Doctors sometimes don't like to be challenged.....

Ultimately he is in the care of the State and they get the final say. Mind you, I did hedge my bets a while ago and applied for 'enhanced rights' through the courts which I was granted. This means I can make medical decisions for him so maybe I'm just worrying about nothing. If they tried to remove him I would go to court immediately to try and prevent them. The social workers are very supportive so I guess I shouldn't worry too much at this stage.

The other thing that worries me is trying to make a case to them for funding this or at least part funding it. I have had to reduce my hours from 40 to 11 per week over the past 18 months to be able to look after him so money is tight enough. The only chance of getting them on board financially would be to have a fairly watertight case that this trip would produce something that couldn't be produced here in Ireland and I'm already fretting over how I could make that case given the fact that I don't understand the names of some of the tests never mind what they might turn up Also from what I've seen so far, I'd say its hard enough to get clear info or support from KDM in order to make that case. He's just too busy to be asking him for that level of support.

Then there is the ongoing treatment, if recommended. Could I access it here in Ireland? Most likely not. I'm following @RML journey and she is having to relocate there for three months to get treatment. I simply couldnt afford to do that.

Maybe I'm worrying about too much too soon and I should just take each step at a time. My head is melted with it all.

Oh, by the way, the public medical system here is called the HSE (Health Service Executive)

As you are seeking out ME/CFS treatments which many in the general public health system view us experiemental for this illness/not mainstream ways to go about it cause it isnt CBT or GET, I personally suggest to not tell them at all at this point let alone ask them for help. It that may put your relationship with your foster child at risk. It could even be used against you as being a suitable caregiver for a ward of the state. Real parents over the world have lost their natural children due to authorities who dont understand this illness.

Generally gov agencies the world over, are very poor at backing things for us and the help we need, no matter where we are in the world with this illness.

Maybe it would be far safer to some how help him off your own back rather then telling them what you plan to do (and very possibly being then stopped from being able to get him the help he needs! I think that is a big risk), when its comes to treatment which isnt well accepted for ME/CFS by public health authorities etc. who dont know much about this illness.

In my own personal views with having this illness for so long and seeing what goes on worldwide with it, I personally think the risk is too high to currently be asking for help from gov depts or whatever (those involved in his case), with what you are wanting to do with currently, helping him as far as other treatments go then those your local health system probably fully supports. You are very likely to be told no by them and then he may not have a chance to get decent help.
.......

Also are you using your real name? Take care, I myself wouldnt publically post my real name if I had a foster child with this illness.

 

[JoanDublin]

As you are seeking out ME/CFS treatments which many in the general public health system view us experiemental for this illness/not mainstream ways to go about it cause it isnt CBT or GET, I personally suggest to not tell them at all at this point let alone ask them for help. It that may put your relationship with your foster child at risk. It could even be used against you as being a suitable caregiver for a ward of the state. Real parents over the world have lost their natural children due to authorities who dont understand this illness.

Generally gov agencies the world over, are very poor at backing things for us and the help we need, no matter where we are in the world with this illness.

Maybe it would be far safer to some how help him off your own back rather then telling them what you plan to do (and very possibly being then stopped from being able to get him the help he needs! I think that is a big risk), when its comes to treatment which isnt well accepted for ME/CFS by public health authorities etc. who dont know much about this illness.

In my own personal views with having this illness for so long and seeing what goes on worldwide with it, I personally think the risk is too high to currently be asking for help from gov depts or whatever (those involved in his case), with what you are wanting to do with currently, helping him as far as other treatments go then those your local health system probably fully supports. You are very likely to be told no by them and then he may not have a chance to get decent help.
.......

Also are you using your real name? Take care, I myself wouldnt publically post my real name if I had a foster child with this illness.

I take your points and they're well made but it's catch 22. No point in going ahead if I can't afford it and also I wouldn't do anything without getting the authorities on board. It's just the way it is and I'm not about to start breaking any laws and run the risk of something worse happening down the road as a result of not informing them. I have a duty to inform them of any medical decisions etc and his mother has a duty to be informed as well. It's just the way the law is and I will have to do my best to win them round and prove a case. If I can't, I can't, but it won't be for the want of trying

I realise that may not be possible but I will have to do my best I guess. I have a lot to think about it seems

 

[Gingergrrl]

@JoanDublin my gut instinct is with yours and I think the situation could be made worse if you left the country for medical care without informing his social worker or proper court authorities. I do not want to steer you wrong and know nothing of the system in Ireland and wish you the best with a really hard situation.

 

[JoanDublin]

Well we can cross symptom no. 8 off the list 'blurred vision'. He had an eye test yesterday and he has developed short sightedness so has to get prescription glasses. He has always had perfect vision (I have that statement in black and white from the hospital at his last appointment to review his colour blind problems) so this is new and I'm convinced it's linked to his ME. Suppose it doesn't really matter at this point though so long as he gets the right intervention.

 

[Little Bluestem]

@JoanDublin, how widely is your son's ME diagnosis known among the powers-that-be? I think KMD is also a digestive specialist, so you could say you were taking him there for evaluation of his digestive problems which are not being resolved locally. Generally, the less you say about ME, the better.

 

[JoanDublin]

@JoanDublin, how widely is your son's ME diagnosis known among the powers-that-be? I think KMD is also a digestive specialist, so you could say you were taking him there for evaluation of his digestive problems which are not being resolved locally. Generally, the less you say about ME, the better.

Its widely known amongst the various doctors he has seen and also I have already introduced the idea to them of going to see KDM for specialist testing etc.