Have consultation with Dr. Nigel Speight

[JoanDublin]

I only remembered now that I hadn't finished off this thread. Apologies for that. Just to say we had our appointment with Nigel Speight. A lovely, warm man who was so respectful of my young lad, asking him direct questions and being sympathetic in all the right places. It makes a huge difference.

Anyway he confirmed the ME diagnosis and has written letters to my young lads GP and also his hospital consultant. For all the good the latter will do....but still it's good to have these things in writing.

He also recommends that I take him out of school completely for the time being as his pattern has been to get reinfected when he goes into school and then spends months in a relapse. I have since met with the school and although I am going to register him for next year we have all agreed that he will not be attending classes until at least this year is over and we will review everything in December. He has written a letter for the Dept of Education stating that he is unable to attend school at the moment.

Dr. Speight recommended our GP try Melatonin for the sleep reversal and we recently had a two week trial. Unfortunately however he seems to have had a bad reaction to it with severe stomach cramps and diarrhoea so the GP has stopped it. So it's back to not sleeping all night.

My next step is to enquire about bringing him to KDM in Belgium to get some thorough testing done at least. I have fired off an email to his clinic to ask some questions and to see if KDM sees minors as well as adults.

Once again, sorry for taking so long to get back on this thread. How is it that weeks and months seem to just fly by?

 

[Valentijn]

I have fired off an email to his clinic to ask some questions and to see if KDM sees minors as well as adults.

I've seen a young boy in there before (7 or 8?), with his parents. Little guy couldn't walk in, so was riding on a wheeled suitcase I've also seen a girl around 12 or 13 getting some form of IV.

 

[JoanDublin]

I've seen a young boy in there before (7 or 8?), with his parents. Little guy couldn't walk in, so was riding on a wheeled suitcase I've also seen a girl around 12 or 13 getting some form of IV.

Oh that's great to know! Not for the poor kids of course but you know what I mean.
I see you have been to see him yourself? I noticed on the website they said to phone them for an appointment but I sent off an email instead. I'm better with writing than speaking so thought that was the best way. Presume they are good at responding to emails? I know I sound anxious...I am

 

[Valentijn]

Presume they are good at responding to emails?

Not really The doctor is super busy, and the receptionist generally doesn't know the answer to questions. But the doctor is good at answering questions during appointments.

But more generally, testing usually costs about 3000 euros, though that can be more or less depending on what you can afford and what your priorities are for testing. Appointments are dirt cheap: 60 or 80 euros for an appointment with the doctor, and 40 euros for a short IV antibiotic treatment. Some medications are expensive: up to 270 euros per month for 4ME, and some prescriptions won't be available locally or covered by insurance, but can be bought in Belgium if your pharmacy won't ship them in.

Testing depends quite a bit on symptoms, but generally seems to be focused on infections (viral and bacterial) and immune system dysfunction, as well as a fair bit of gut-related stuff (stool bacteria, fructose and lactose absorption, immune reactions to food).

If you have any other questions which patients might be able to answer, we're quite happy to do so!

 

[Sushi]

@JoanDublin

They get so many emails that they have trouble keeping up. A phone call usually works better. I also know of kids and teenagers who are patients there.

Best,
Sushi