Prader Willi Syndrome

totoro

Mom? What's a difficult child?
I see... I was hoping it wasn't. For us we have used Risperdal and Abilify and now Seroquel. As far as Atypical Antipsychotics. They have all caused K to gain weight. :( I wish I could say the opposite. The Abilify and Seroquel were the best as far as Mood Stability for her. They helped with anger and aggression the best.

For some they do not cause weight gain. But if he has a tendency to gain, then he may likely.
The woman I met said her son was on Prozac. It was very helpful for the Anxiety and helped calm him with his Obsessive Compulsive Disorder (OCD) issues. He had low tone as well.
What medications are listed that are approved fro him? What are they targeting? Anxiety?
I have used Zoloft myself for my Anxiety, it was helpful.
Some people with seasonal issues see signs in the Spring and Fall. They call this the September Slumps and March Madness... They can start occurring earlier or later though.
Hang in there!
One of us might have something to help! :)
 

Marguerite

Active Member
Lizzie, you wrote, "I see risperidal as one of the medications you are involved with. Did you find that there was weight gain with this medication and what did you think of the positive effects it might have had. It is listed as suitable for mood disturbance in PWS too."

Risperdal does often lead to weight gain, but this is due to it increasing appetite. I don't know if this would happen with PWS - it would be an effect on the satiety centre in the hypothalamus and in PWS the satiety centre is already out of action, so I don't know if risperdal would make any difference. Maybe ask a pharmacist, or an endocrinologist, for more information. Or maybe even call the company that makes it and ask to speak to one of the chief chemists there? They would have a really good idea of exactly how their drug works and might be better able to advise you. You might have to explain to them how PWS 'works' in terms of hypothalamus function, but otherwise they should be able to help. It would be a surprising blessing due to the PWS, if the usual effect of increasing appetite didn't happen in PWS!

To explain to other CD members who don't know - Prader-Willi people gain weight for two main reasons:

1) They only need about two thirds of the calories of other people; and

2) The satiety centre in the hypothalamus, the bit that responds to both higher blood sugar levels and also feedback from a full stomach that tells us that we've eaten sufficient, just doesn't work. It seems to be permanently switched off, so to someone with Prader-Willi they are always hungry, they never feel that they have had enough to eat. In younger kids especially, this can be a real headache because they can be desperate to get at food (or anything else). They also can't vomit, there are other issues too. It's a cruel combination - you never know when you've had enough plus you have to actually eat less than other people so you always see other people eating more, it just doesn't seem fair. It's physiological, the neurological and hormonal pathways can be easily traced to show what is going on.

Lizzie, if your son is already as disciplined as this with food, you have done an amazing job with him.

Other possible effects of risperdal - it sedated difficult child 1 quite badly. It didn't do that at all to difficult child 3. So if you need to get your son moving to exercise, the risperdal MAY make it more difficult if it sedates him.
As for what it does - it helped calm out boys down a bit, it smoothed out their moods (the ups and downs) and reduced the anxiety, which in turn reduced some of the Obsessive Compulsive Disorder (OCD) problems. For us the benefit here was very small, but for others it can be quite a lot.

About the apparently seasonal problems - it could also be hormonal, linked to melatonin perhaps. Or changes in melatonin due to changes in season. The seasonal issues totoro was talking about in the previous post are connected to changes in melatonin secretion. Would an endocrinologist be worth seeing? With so many other aspects of PWS connected to the endocrine system, maybe this could be too.

The suggestion to keep a diary could lead to some good background info on other things connected to the changes you notice. If you can go back and document what you recall from past episodes it would be a good start. There are so many things to consider - the season, the location, the temperature, any change in foods, especially if you eat fresh vegetables in season - you could be changing foods due to change in season, and a seasonal fruit or vegetable could be causing a reaction. For example, we just had blood oranges in season, about a month ago. We only get these for a very short time each year and for about two or three weeks only. I bought some and put them in our spare fridge - I found them last week and put them in the fruit bowl, but they've been finished in the shops for the last month. And there are other fruits/vegetables which aren't even available in our shops - lemonade lemons, spaghetti squash, various heirloom tomatoes - he could be getting a reaction to a food like this that maybe you don't buy often because it's highly seasonal, or maybe a friend/relative/neighbour has given you some home-grown produce which perhaps they do every year at the same time.

A diary would pinpoint this.
Example - a diary could show an outing to a particular place or a particular group maybe once or twice a year, and this could be exposing him to something that triggers a sensitivity reaction or similar.

Sometimes it's just a matter of getting input from others in his life as well, a sort of long-term brainstorming session.

Here's hoping you can get some answers.

Marg
 

lizzie09

lizzie
Thanks so much Marg for the effort and detail you put into that post.
Since my son was diagnosed positively at 11yrs old (it had been suspected at birth because of floppiness,
 

lizzie09

lizzie
Dont know what happened with my last post as it jumped away!!
The second opinion ruled out PWS but as he did not grow very well and had learning issues I went to yet another hospital. I had been everywhere over the eleven years looking for information and got nothing
At the last hospital the professor was an endocrinologist and specialist in childhood disabilities. She ordered more chromosomal tests etc and the results came back positive for PWS. It was a bit of a fright at that stage as I had hoped but secretly feared the worst all along.
Growth hormone therapy was introduced and had marvellous results with growth and muscle development as he was quite untoned. He was at this stage 11yrs old.
Overall he looked wonderful on GH.
It was only at about 18 that some behaviour issues became evident. He appeared more stubborn at times but was overallc ooperative. Gradually as leaving school approached he seemed to get mood variation as I have explained and then in 2005 we saw the first of the odd 3mth length disturbances. Clearing up completely without medication and returning almost a year later to the day of the onset. The second time 2006 I sought help from the family doctor, Our son was still attending the paediatric endocrinologist and GH had stopped. The doctor would not prescribe and referred us to the district Family centre for Psychiatric Disorders. When we got our Ap psychiatric said he would do nothing as it was disability and not psychiatric....this was just daft as all our lives were up in a heap and I had children sitting state exams. It was a difficult time.
The next year last year my son was in his placement for young adults when he had his mood change. They have a psychiatric on board there but he thought son m ight have epilepsy and would not prescibe until we agreed to have tests done .....so we suffered 3mth as it was impossible to get en EEG private or otherwise before this.
I felt very bitter, At this stage we were attending the adult hospital endocrinologist and he could offer n o help or refferal to psychiatric private or public as no one was versed enough with the syndrome and would not take it on board, All we could do was depend on our day service and the elderly doctor there to prescribe and we had to wait till EEG was done This was normal but the mood had passed at that stage. We had no need then to medicate,
Now we are a year later down the road and all has been well....however as you can imagine I am extremely nervous of what each day brings. I noticed he was a bit hyper last Thursday but in the end I gave him a Xanax tab I had from last year from family doctor and it settled him down fine,,

There is a huge gap here in the mental health service for disability.
No psch hospital that treat normal people for want of a better word will treat people with disability.
The adult endocrinologist has admitted it really is a waste of my time to continue my visits to him 6 monthly as he only monitor his general health and hormone levels.
We will not or cannot send me to a doctor down the corridor that can help our poor son and all our family cope with this syndrome.
If a full blown episodes explodes soon I suspect the doctor in the day service will prescribe zYPREXIA he does not like Risperidol which is more documented for \PWS but I suppose I could plead for the first, They are similar drugs.
As to whether my son would be zonked or mildly sedated I dont know.
At the moment all is well and I wait in terror for the next time and what might be our fate along the road of medication

Many thanks again Marg and all who have put such thought into their replies

I wonder about the amount of Risperidol that might be zonking? I know its different for each individual. I think there is a maintenance dose but if we were to use Risperidol would it be reasonable to expect to come off it as we are OK for such long periods?
 

witzend

Well-Known Member
Lizzie~

Hi and welcome to the board. I also have a rare genetic disorder that effects about 1 in 20,000, and I understand how difficult it can be to find someone who specializes in the condition. I have usually found that when someone publishes, they are happy that people noticed their articles, and like to be asked for direction as to who can help them. I found an article on PWS, and what is probably the clinic that BestIcan wrote about. Here is the contact information.

Maria J. Mascari, Ph.D., is instructor in the division of genetics, department of pediatrics, in the College of Medicine, The Milton S, Hershey Medical Center, Pennsylvania State University, 500 University Drive, Hershey, PA 17033; 717-531- 8414. She is also coordinator and genetic counselor for the Medical Center's Prader-Willi Syndrome Clinic.
 

lizzie09

lizzie
Thanks witzend for that....it was very like my situation which took time to throw up chromosome abnormalities

Its great that people are passing on to me their knowledge of the syndrome.
It would be great if someone knew of a young adullt with this odd behaviour and what might be useful,

Its amazing the response I have got from you all.

Thanks again
 

witzend

Well-Known Member
You're welcome, Lizzie. I think you should try to contact the doctor who wrote the study and ask if she can refer you to someone who has experience with young adults with the syndrome.
 

Marguerite

Active Member
Lizzie, I'll ask the mother of the boy we know, to see if she's come across this odd 3-month-long behaviour change in young adults. She's very involved in Aussie PWS support networks.

Risperdal & sedation - it seemed to be very individual. difficult child 1 was zonked out by quarter of a tablet, difficult child 3 took much more (eventually four times the dose and more) with no sedation, despite being less than half the weight of his big brother.

Your son's delayed diagnosis - I'm wondering if he doesn't have full expression of the gene. This can happen with genetic abnormality, depending on exactly how the gene is usually expressed. Or there could be something else caught up with it. Again, I'm going to talk to my friend.

I actually learned about PWS not from her but years ago, when I studied endocrinology (as part of a physiology course). She has taught me more - I was never taught about the regurgitation problems, for example. That just adds to the hassles, with pica (which her son has currently, badly).

Despite the hassles it still seems to me that an endocrinologist is the best overall person for you. I just can't fathom why he's not referring you to a psychiatrist. Unless he already knows they will refuse to treat him if there's the slightest hint that it could be due to the PWS. He may already know the bloke down the corridor and doesn't want to waste your time.

I would assume you've run this mood change problem past the endocrinologist - is there a chance it's related to melatonin? You're in Dublin and have short winter days, shorter than a lot of people have. What sort of lighting is your son exposed to? If you could look into melatonin as a possibility, maybe install some fluorescent lighting with a higher than usual UV output and make sure they're on for extra hours in the evenings and mornings and get him outdoors during the middle of the day every day - if he still develops this mood change problem, then at least you will know you've ruled out the winter effect. But you might be able to reduce it, melatonin may still be a partial factor.

I'll do some digging, see what I can find. It's not a problem for us in Sydney, but again - something I learned about back in my misspent youth when studying. Totoro pointed it out first - a lead definitely worth considering.

Marg
 

totoro

Mom? What's a difficult child?
Lizzie- Risperdal does not knock out K at all. She uses it as a PRN. (As needed) which is nice, she has .5mg but can use more depending on mood. It just calms her agitated state. She has used Risperdal full time, but it caused her movement disorders, we then switched to Abilify, another Atypical Antipsychotic. She did really well on this for about a year. Now she is on Seroquel which seems to have a bit more of a Mood Stabilizing quality for her. These are all considered AP's though, with Seroquel now being used as a *Mood Stabilizer* as well.
Risperdal caused the most weight gain fro her.
We used a light box for K during the Fall until Spring. Now we have moved to one of the sunniest places on the planet! So we shall see.
 

lizzie09

lizzie
Thank you again totoro and Marg for such great replies.
In relation to light issue, I originally thought it was too much light as the 1st and 2nd episodes occurred during our UNUSUALLY bright sunny warm summers 2 and three years ago. However last episode in October 07 was in October which is a grey muggy month here approaching winter. So it appears to be due neither to light or lack of it. PWS do have temperature issues. Not like fever but with regulation during hot weather.
I really havent a clue. The idea that its anxiety borne seems likely but as he probably doesnt identify immediately a factor its too late when it begins to nip it in the bud.
However the Xanax appeared to work on Thurs last which gives me a bit of hope.
I have a 21st party for my second son who is one year younger on Friday and I am praying that nothing odd behaviour wise disturbs the celebration. Si far we are looking good but as you b oth know we, as mothers, do suffer the stress of what might happen despite our best efforts.
Totoro what does PRN mean? I am not great on these abbrev just yet!!!

Sweet thoughts to you both winging there way many miles across the seas.

Isnt the internet justs so COOL as the kids would say!
 

lizzie09

lizzie
Hello again Marg
In relation to the endocrinologist...for the last two yrs we have had the adult hospital service for our son. The endocrinologist is extraordinary in so far as he appears to have no interest in the overall syndrome. He doesnt even weigh my son and really just asks for bloods to be done every 6mths I suppose because of the growth hormone though its now finished. Testosteone is a bit low too. Endo is not interested in big picture. When we appeared in April last routine I expressed my disappointment over the dept lack of support during the episode in Octiber. At that time I arrived to this Endo dept tro see the doctor with my aggitated son and I was turned away!!! How mad is that (and it was mad! believe me) The hospital psychiatric only delat with people living in that catchment area and I was not. I was told to go back to the Mental Helath facility/hos which I had already dealt with in 2006 and was turned away from there....ne medication no help whatsoever. I once again told the Endo about this and then he said the Day Service provider had the part time doctor ( the one that looked for elipepsy tests) and he should look after the issue.
What I need and do not have is a multidisciplinary team on board and at adult leve; it does not exist here.
In Paediatrics there was a fantastic lady doctor, it appears the only one with real knowledge of the syndrome. She was the one who eventually diagnosed my son.
Unfortunately during the eight yrs attending her clinic and getting GH treatment we had no real problems at all.
I
 

lizzie09

lizzie
Hello again Marg
In relation to the endocrinologist...for the last two yrs we have had the adult hospital service for our son. The endocrinologist is extraordinary in so far as he appears to have no interest in the overall syndrome. He doesnt even weigh my son and really just asks for bloods to be done every 6mths I suppose because of the growth hormone though its now finished. Testosteone is a bit low too. Endo is not interested in big picture. When we appeared in April last routine I expressed my disappointment over the dept lack of support during the episode in Octiber. At that time I arrived to this Endo dept tro see the doctor with my aggitated son this was not by app but I was desperate. and I was turned away!!! How mad is that (and it was mad! believe me) The hospital psychiatric only dealt with people living in that catchment area and I was not. I was told to go back to the Mental Helath facility/hos which I had already dealt with in 2006 and was turned away from there....ne medication no help whatsoever. I once again told the Endo about this and then he said the Day Service provider had the part time doctor ( the one that looked for elipepsy tests) and he should look after the issue.
What I need and do not have is a multidisciplinary team on board and at adult level; it does not exist here.
In Paediatrics there was a fantastic lady doctor, it appears the only one with real knowledge of the syndrome. She was the one who eventually diagnosed my son.
Unfortunately during the eight yrs attending her clinic and getting GH treatment we had no real problems at all.
I found it very hard to be civil to this adult Endo man and I told him he had let me down and my family in my time of need. I am sure he could have helped....he had to know someone,
He had no great answers for me when I asked him how many other patients with the syndrome did he have on his books. I asked this to see if anyone had problems like we had.
At that point he more or less told me a yearly visit would me more than enough as he could nothing for me but the bloods as I explained.
I felt he was peeved with me but what the heck! He saw me trying to keep tabs on my son iin his waiting room last Ocotber in dire straits and then he turned me away. Even the admin staff were better and tried to get me ap with psychiatric but failed beacuse of catchment area,
This hospital is one of the few that have expertise in these kind of disorders so there is no point in my going to my local hospital dpwn the road.
Isnt it mad?Day service doctor is retired from practice and seems to visit this place now and then, I feel I need to have a team that I can contact.
No point in looking for anti psychotic medication if I cannot contact anyone about possible adverse results.
If this episode happens again I suppose I at least have this elderly man in the serv who will have to help....or will he? With my experience of late I stand alone.
They say noone wants to take on the psychiatric treatment of PWS as its too complicated!!!!!!!!


I am ranting here now as I so clearly see myself and son almost a year ago to the day wandering around that hospital begging for help. Think of the effect that had on my son as we drove sadly away with nothing.
He said...Mum, why can you not help me!!!! In his eyed I had failed and of course he could not understand that it was the system that failed him.


Hope your eyes still work after reading this rant!!!!
 

Marguerite

Active Member
Lizzie, I have no personal knowledge of the health system in your area, but from what you describe it doesn't sound good. You're right, you DO need a multidisciplinary team. failing that, you can make your own team (which is pretty much what I need to do for my own health issues; husband is in the same boat but has his own different team).

What ALL good health teams need is the spider in the centre of the web. In most cases, this is the GP. A GOOD one. I know that a health system which divides people into areas and pays them according to how fast they can process people through, is not conducive to this. However, you can still be lucky sometimes. To get what you need, you need to give the doctor what HE needs. I can only give an estimate, but I suspect what your doctors value, is anything that can speed up the consultation process. From my own experience, a tricky case that is going to take time to hear the story, isn't welcomed by the sort of GP who just reaches for his prescription pad as you walk through the door.

If your current GP isn't too keen to actually do the work, and you can't change to a different GP, then you will have to somehow turn this GP into one who will become the spider. If you are seeing GPs in a clinic environment and this means it's pot luck according to which GP you get to see, you could TRY to request the GP of your choice. You will still be restricted to the range of doctors on duty, but it's a start. Over time, they will get to know you.

Next step - keep a diary. Before you go to the doctor, summarise the problems concerning you into a single sheet of paper, preferably no more than three questions. If you have more than three, pick the most important three and note that there ARE more but you're saving them for a later date.

Keep it streamlined as much as possible. And no matter how tempting, don't rant at them - it loses time. Your main aim is the important one - to get help for your son. At each appointment, watch the time, don't overstay your welcome and stick to your agenda. If you need to, come back next day, and the day after, for the same short time, and keep plugging for answers. Be politely persistent.

At first the doctor is likely to try the "take two aspirin and call me in the morning" routine. So if you can see that your five minutes is up, then go away and do just that. Do what he asks, to show willing. Demonstrate that you will do your bit. It's annoying, it's frustrating, but worth the trouble. because you then go back and request the same doctor (if you can). Go in with your little scrap of paper and three questions. The scrap should begin with, "You advised X, we have done X. We observed Y. The following questions include Z number of my initial three that remain unanswered. I am desperate to get help for my son - I need a good GP to help me do this. Please help me."

It could take some time but you need to continue, to persist with the same people. At some stage the GP may very much value a detailed summary of his medical history. Again, put it in writing, keep it concise and include anything of relevance. List names, dates, places. If you have copies of letters from specialists and test results, attach those as an appendix.

At some point, the GP (if he eventually picks up the ball and runs with it) will make contact with the endocrinologist and the lady doctor in paeds. He will require written reports, but may have to settle for verbal reports from people. But a good GP will keep notes in your son's file.

If your own point of view of the endocrinologist is borne out by the GP's own opinion, then maybe the GP will be in a better position to find an alternative for you. Certainly he should have more power, more contacts.

This is a process which takes time - housetraining a GP and setting up a working spiderweb - but any improvement has got to help. Right now, you sound like you're being given the Royal Order of the Runaround.

What I suggest should help at least later, and hopefully sooner. And if it doesn't help, then at least it sets up a much more effective paper trail of solid evidence that you can take to your local MP to get him to "prod buttock". Preferably with steel-capped boots, preferably borrowed form Lotte Lenya. ("From Russia With Love" - oldie but goodie James Bond film with Sean Connery).

Marg
 

lizzie09

lizzie
Yes Marg you are so right.
I see the same GP. Each family signs up to a GP. This one has all my sons history from birth and reports from Endo docs regularly. She just has been wary to prescribe antipsychotics as she feels its not her area...she is shocked that no one wants to know. I explained about the Endo in adult hospital and she just looked shocked.
I need to get her on board. She has all the in formation. I need to shout louder and probably refuse to move till I get help...it has come to that,
If son had not improved last year I intended leaving him in Day Service as someone would listen to them. A horrible thing to contemplete but thats whats happening.
The most shocking part is that the Mental Service does not want to know and noone wants to get involved with PWS because its not so documented here and its a very odd disability.
However I do intend to keep appearing at the GP surgery if necessary but this can be difficult if son is in that mood and you can cause a bit of a commotion..
Somehow I am not happy with the attending doctor at the day service but I suppose he is better than nothing,,,,maybe with GP help I will get some cooperation but it actually is unlikely to be the multidisclipinary approach that would be the best.
I am now documenting everything that happens.
 

Marguerite

Active Member
"if son is in that mood and you can cause a bit of a commotion.."

If that happens, don't get embarrassed. Simply say, "I know it's a problem. That's why we're here, because this is NOT right, we need help and we're not getting the help he needs. This isn't fair to him, either."

Don't blame the people there - just enlist their support. Sometimes you can go a long way by agreeing with people.

Example - local high school was having to accept the high likelihood that difficult child 3 was going to be enrolled there the next year. We were going through "transition to high school" at the only school which COULD NOT refuse to enrol him, and it was interesting to see the deputy principal quake in his boots. On the one hand he was trying to 'sell' the school (and making obviously untrue statements, such as "At this school, teachers do not shout at students" when I could clearly hear a teacher's raised voice from the floor above). On the other hand, he was struggling with the real problems we had already encountered with difficult child 3 due to his autism and realising bleakly that they just were not equipped.
The deputy was saying things like, "We make no exceptions here, no special consideration for a student's behaviour just because he has issues. He has to obey the rules like everyone else."
I pointed out, "He ISN'T like everyone else and cannot meet the same behavioural expectations. He also needs to be protected against bullying, I will require staff to be vigilant and to act preferably proactively."
We went into the problems and the deputy said to me, "I think your son would be better off somewhere else, somewhere more suited to a child with his special needs."

Instead of being offended at the implication that my son was not fit for 'normal' placement, I agreed with the deputy and thanked him for both his honesty and his perspicacity. "Thank you, sir, for being so refreshingly frank. Can you recommend such an alternative placement? All suggestions are very welcome."
He ummed and aahed, couldn't think of anywhere right off the cuff, then said, "What about partial attendance?"
I immediately replied (in the presence of the District Special Education staffer who had previously denied us access to this), "I am sorry, I have been repeatedly told that partial attendance is not possible. We requested it repeatedly over the past few years with no success."
It WAS true we'd been told it was not possible; I also knew this to be a lie. ANd now she'd been publicly called on it in front of this deputy. She had to speak up. "Actually, perhaps we COULD consider partial attendance now."
This gave me the opportunity to publicly tear strips off her. "NOW you suggest something we requested repeatedly for years and were repeatedly told was not available; and NOW you suggest it could be an option, when we are discussing enrolling him in a school which is over an hour's drive form where we live? The time to use this option was when he was in a school five minutes from home."

I had got to this point in the discussion, by agreeing with the expressed concerns of education officials who THOUGHT they were going to have to walk on eggshells, talking me out of something I had my heart set on (enrolling difficult child 3 in a mainstream high school). What resulted - I publicly demonstrated the total lack of appropriate placement/services for a child like difficult child 3. This then made the next step possible - the springboard into the public campaign to fix this.

I had minuted that meeting in detail. I carry my laptop computer with me and use it to take notes on the spot. I can also secretly record a meeting and have done so, although I can only use the recordings to help me ensure my minutes are accurate. I can never produce a recording because I have done it illegally. Having my own witness present as well, generally is enough to back me up (especially if my witness can refresh their memory by listening to my taped record, if they need to).

So if your frequent visits to the medical centre begin to cause problems, apologise for the problems but ask them if they can help you find a better way to get your son the help he needs. You will happily listen to all suggestions to see if there is something useful you haven't yet tried.

I do believe you, that your son is in the "too hard" basket and I think they really are hoping you will take him home and stop bothering them. The best way to deal with them, then, is to keep coming back again with the obvious expectation that someone will eventually decide to treat him.

Also, write letters. Your local MP is a good start. Keep copies of all replies as well as what you write. Also recognise that in just about every case, the first reply form your MP is likely to be a general, "tut, tut, you poor dear, I will get my department to look into it." And then nothing else. Maybe in a few months you could get another letter telling you what a wonderful health service you have in your country and how "of course any problems you may have had have undoubtedly been sorted out by now; glad we could help, don't hesitate to ask for any help in the future."

The secret is, to keep writing. Also make an appointment with your local MP (be prepared to only see a lackey - that's OK) and at tat appointment, have copies of the problem, of relevant correspondence etc ready to hand over. Keep your question simple and to the point - only ONE question, here. That question - "Where can I get appropriate medical and psychiatric treatment for my adult son with PWS? He has ongoing recurring problems which have been a serious concern for the last few years but we have not been given access to anyone who was prepared to treat him. There does not seem to be anywhere capable of treating a person in this category." Outline your experiences, mention what he has said to you (the emotional touch always sells it well, especially as a closing sentence coupled with, "I want you to fix this so my son never has to ask me, 'Mum, why can you not help me?' He does not understand the complexities of our health system, he only knows that he needs help and isn't getting it.") And see how this goes.

Once you start this process you need to be prepared to keep chasing it. You also need to show you've already done your homework - you do not want the MP to write back triumphantly with the contact details of the Dublin PWS support group. You need to show that THEY are desperate too, or they don't deal with adults, or whatever the problems is (maybe they don't exist?).

Other people to write to - the Opposition Health spokesperson (they kick rear ends harder, they have a political interest in doing so), the media, local charities. But go carefully - begin with your MP. Write to the Opposition Health person only if he's the same party as your MP. Chances are, your MP will already have contacted him. If your MP is government and comes back as a dud even after contacting the health Minister, then later on (after your final letters from the MP) write to the Opposition Health person. Be prepared for THAT person to bring in the media - they grab any chance they can to embarrass the government.

In this, your political system will work similar to ours in Aus. We shouldn't have to do this, it's extreme Warrior Mum stuff.

Anyway, begin with the GP, sit down and spell it out. "I need you to help me build our own multidisciplinary team for difficult child. You as the GP are the main driving force and organiser of this. I am more than the client here, I also am a vital part of the team since I have to keep the appointments straight and administer medication, treatments etc. We need to work as a team. And we're already losing vital opportunities. What do we need to do, to make this happen?"

And see what the GP says to this.

Good luck!

Marg
 

lizzie09

lizzie
Yes...another great reply.
This is what is necessary.
Incidentally the PWS Ireland support can not get anyone on board either...there was a major conference in Dublin in 2006 with representatives from all over the world present.

Thank you Marg. Hopefully I willl get another bit longer before I launch my quest.
 

Nancy423

do I have to be the mom?
Lizzie, I just want to give you and your son some HUGS. I'm sorry you're not getting the help you need. I'm hoping some of these suggestions may help to open a door, somewhere. Wishing you some luck.
 
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