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Old 27.12.2011, 08:42
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15-yr old son newly diagnosed Type 1 diabetic ... looking for help/advice

We are three days now into our son's new condition. As it was diagnosed by a doctor on vacation, we are now home and I will begin the search for a physician to get his condition managed.

We are in the Vevey area and, as newly arrived expats, don't even have an internist lined up. If you have any suggestions, please PM me.

Any suggestions for where the best selection of sugar-free products are? Any English support groups?

I have tons of questions and would appreciate if I could reach out to Type 1 people or parents out there who have navigated this through the Swiss medical system. I know it will be a tough road ahead and am looking for advice in all possible areas.

Thanks!

Last edited by jrspet; 27.12.2011 at 09:04.
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Old 27.12.2011, 09:42
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Re: 15-yr old son newly diagnosed Type 1 diabetic ... looking for help/advice

Just want to send some big hugs your way. It's definitely going to be an adjustment for your son and your family. I can see you're being really proactive already, which is fab.

I would strongly recommend a registered dietitian now and periodically for advice and support with food choices. Exercise is also something to consider.

While my next comment will seem negative, I think it's an important one. Diabetes has many very serious complications and it's critical that you and your son remain aware of these problems. That's because tightly controlling blood sugar is key to reducing your son's risk of suffering from complications relating to diabetes.

Please keep us all posted on his progress. =)
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Old 31.12.2011, 08:22
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Re: 15-yr old son newly diagnosed Type 1 diabetic ... looking for help/advice

Swisspea has a lot of experience and info on the subject.
Here's one of her posts.
She unfortunately lives in the wrong part of Switzerland for you, but it might help to get in touch with her all the same.
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Old 31.12.2011, 15:15
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Re: 15-yr old son newly diagnosed Type 1 diabetic ... looking for help/advice

Hi. I checked with my neighbours who have a son (11 yrs old) with type 1 and was diagnosed late 2010 if I am not mistaken. They have agreed to spend an hour or two with you to go through things from A-Z.

Can you make it to Lully (it is just above Morges so about 30 minutes from your place)? Ideally it would be in the evening or possibly on a weekend so you would have both of the parents there. Both of the parents speak English but it is not their mother-tongue.

Let me know and I will send you an PM with their email addresses so you can set up the meeting.

Good luck with the next steps. It is some work and some real discipline but it is a disease that can be managed.
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Old 31.12.2011, 15:45
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Re: 15-yr old son newly diagnosed Type 1 diabetic ... looking for help/advice

I have Type 1 Diabetes and they found out as I was 27 ... anyway, don't change everything in once, go to a specialist in your hospital and check with a nutritionist. The life will change but we all accept this and life goes on.

Diabetes sucks but is manageable!!!

As far as I know with the swiss health care system should not be a problem (I was still in CH as my doctor diagnosed it)

Good luck!
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Old 31.12.2011, 15:54
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Re: 15-yr old son newly diagnosed Type 1 diabetic ... looking for help/advice

So sorry to hear this.

The UK NHS diabetic site is full of helpful information and also a Forum for sufferers and parents, etc.
The forum also has a Youth section/club where young people can exchange experiences, etc- and also organise exchanges, trips, etc.
www.diabetes.co.uk

Bonne chance.
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Old 31.12.2011, 16:10
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Re: 15-yr old son newly diagnosed Type 1 diabetic ... looking for help/advice

Quote:
So sorry to hear this.
Why? Diabetes I and Diabetes II are not terminal diseases.
I have friends and family members who are both.
If someone has a condition like that they don't want people feeling sorry for them or telling them that they are sorry. They want people who will motivate and support them.
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Old 31.12.2011, 16:23
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Re: 15-yr old son newly diagnosed Type 1 diabetic ... looking for help/advice

I agree that support and motivation are important but no-one said they were sorry for the child. Helpful links like the ones given by Odile are support. 'Sorry to hear this' means to me that Odile realises that the lives of the whole family will be a bit more complicated in future. The one sentiment doesn't exclude the other.
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Old 31.12.2011, 16:24
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Re: 15-yr old son newly diagnosed Type 1 diabetic ... looking for help/advice

Absolutely- which is why I've given the details of a website for support. And yet, most teenagers will find it difficult at times to be different and have to be very careful about their choice of food, abstinence from alcohol, etc- so I am not sorry 'at' them, but about the situation. Sorry, again, if you misunderstood this.

Edit, Lonbyt, posts crossed. Thank you.
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Old 31.12.2011, 16:34
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Re: 15-yr old son newly diagnosed Type 1 diabetic ... looking for help/advice

Just checked in and saw your post. Thanks for the reference Longbyt!

You will find the diabetes care excellent, but your son will need to see an endocrinologist probably at the kids hospital.

Things to do:
- ask your son's school for a recommendation for a paediatrician. The quickest way to get the details of the local Paediatricians is to go to your local pharmacy - ours could print a list of all the doctors info off their computer - they were reluctant to recommend any in particular...

Or just phone one off the telephone book. I've not found any doctor yet that can't speak enough english to send you the right direction.
It's normal for kids to see paediatricians as their primary doctor.

- contact the local paediatrician, tell them you have just arrived in Switzerland for work, your son has only just been diagnosed with diabetes, and can they please refer your son to the diabetes clinic. We did this over the phone, saw the Paed a few days later, and a couple of days after that a letter arrived with a specific appointment date at the diabetes clinic to see the specialist.

- we did this and got an appointment at the top endocrinologist at the kinderspital in Zurich within a week. We were very impressed, and quite lucky, he'd just sent a kid back to Australia who was diagnosed on holidays, so when our son's file arrived he went 'Oh, gee, swap you one!' - he felt sort of obliged to take us in (and quite frankly I think he wanted to suss out the diabetes stuff that we knew from Australia, and also our son has triple-auto-immune disorders, so he's a pretty special case).

Be prepared that the endocrinologist becomes your primary diabetes consultant, and should also have access to a specialist dietician (compulsory) and psychologist (recommended, if they can get you one that speaks your language). They gave us a phone number of the on-call endocrinologist at the kinderspital - we can telephone any time day or night if our son is ill, so we can get their advice.

For the first couple of weeks we emailed our son's numbers to his specialist, and phone him at a set time each day to update the progress and get the recommendations for the following day.

I'm not sure what else you need to know except "Welcome to the club that no one wants to be a member of" and take care of yourself. Our elder son was diagnosed when our younger son was 10 days old. Not fun at all.

You will have regular clinic appointments for your son at the hospital. These are all covered 90% by your basic health insurance. Our son was knocked back on supplementary cover because of his diabetes, but the basic is absolutely fine, and he'd get 'special' treatment anyway because of being diabetic (when he has been to hospital for other things they keep him away from other sick kids so he has less chance of catching whatever is going around)...

What else to know ?

Don't listen to anyone's advice about what to eat, not eat, don't get too hung up on 'sugar free' stuff, lots of people will think that being diabetic equals 'no sugar'....that's simply not true - but they do emphasise a very health balanced diet and regular exercise - in terms of general health, our son is healthier than the rest of us!

Take a list of your questions with you whenever you have a doctor's appointment, and take notes! At 8 our son could do his own injections, calculations etc, so I'd imagine at 15 they will try to get your son to be as responsible as he can for his diabetes management as possible.

Health insurance covers you from date of entry. Make sure you get your health insurance lined up quickly. I don't think one is better than the other for basic, but we have cover with Visana and haven't had any problems, although I find that I can only deal with them in English via letter, but it works out in the end.

Everything, as I said, can be set up in a matter of days. Take care. I'm very happy to help - our son was diagnosed at age 5, and I have one nephew, my husband's half-sister, our son, one cousin and one aunty all with Type 1 diabetes (my aunt was diagnosed closed to 30 with type 1 and is now 60), plus a friend of ours whose daughter was diagnosed at age 2, so that's a pretty good reference group.

There is a diabetes association. Our info comes in German and covers both type 1 and type 2, and is mostly not easy to read, but our son gets invited to 2-3 events per year and a diabetes camp for a week. He went on a weekend trip to Europa park sponsored by one of the big pharmaceutical companies which was awesome!

He finds diabetes camp very challenging, we don't let him chicken out.For us it's the one week a year we have off from diabetes, and for him he learns a million tricks about diabetes from the other kids, finds out he is not alone in his experiences, and is extremely well cared for (all the doctors and nurses from the diabetes clinic usually come to help or for some part of the week, even his specialist! - and the helpers are all young adults who have diabetes too - so he's in excellent hands!).

Please feel free to PM me. As you can see, I can go on for hours!
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Old 31.12.2011, 17:14
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Re: 15-yr old son newly diagnosed Type 1 diabetic ... looking for help/advice

Here is the address of the Vaud diabetic assoc:

adresse



ASSOCIATION VAUDOISE DU DIABÈTE
Chemin de Rovéréaz 5
1012 Lausanne
téléphone



+41 (0) 21 657 19 20
fax



+41 (0) 21 657 19 21
e-mail



vaud@associationdudiabete.ch
site web



www.associationdudiabete.ch/vaud
visible sous :




www.les-associations.ch
www.les-conseils.ch
www.les-therapies.ch
www.les-aliments.ch


And also

www.fdse.ch
an association that organise holidays and camps for diabetic children from Romandie area.
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Old 31.12.2011, 17:23
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Re: 15-yr old son newly diagnosed Type 1 diabetic ... looking for help/advice

PM sent - from type 1 diabetic in CH.
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Old 31.12.2011, 17:38
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Re: 15-yr old son newly diagnosed Type 1 diabetic ... looking for help/advice

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Just checked in and saw your post. Thanks for the reference Longbyt!

You will find the diabetes care excellent, but your son will need to see an endocrinologist probably at the kids hospital.

Things to do:
- ask your son's school for a recommendation for a paediatrician. The quickest way to get the details of the local Paediatricians is to go to your local pharmacy - ours could print a list of all the doctors info off their computer - they were reluctant to recommend any in particular...

Or just phone one off the telephone book. I've not found any doctor yet that can't speak enough english to send you the right direction.
It's normal for kids to see paediatricians as their primary doctor.

- contact the local paediatrician, tell them you have just arrived in Switzerland for work, your son has only just been diagnosed with diabetes, and can they please refer your son to the diabetes clinic. We did this over the phone, saw the Paed a few days later, and a couple of days after that a letter arrived with a specific appointment date at the diabetes clinic to see the specialist.

- we did this and got an appointment at the top endocrinologist at the kinderspital in Zurich within a week. We were very impressed, and quite lucky, he'd just sent a kid back to Australia who was diagnosed on holidays, so when our son's file arrived he went 'Oh, gee, swap you one!' - he felt sort of obliged to take us in (and quite frankly I think he wanted to suss out the diabetes stuff that we knew from Australia, and also our son has triple-auto-immune disorders, so he's a pretty special case).

Be prepared that the endocrinologist becomes your primary diabetes consultant, and should also have access to a specialist dietician (compulsory) and psychologist (recommended, if they can get you one that speaks your language). They gave us a phone number of the on-call endocrinologist at the kinderspital - we can telephone any time day or night if our son is ill, so we can get their advice.

For the first couple of weeks we emailed our son's numbers to his specialist, and phone him at a set time each day to update the progress and get the recommendations for the following day.

I'm not sure what else you need to know except "Welcome to the club that no one wants to be a member of" and take care of yourself. Our elder son was diagnosed when our younger son was 10 days old. Not fun at all.

You will have regular clinic appointments for your son at the hospital. These are all covered 90% by your basic health insurance. Our son was knocked back on supplementary cover because of his diabetes, but the basic is absolutely fine, and he'd get 'special' treatment anyway because of being diabetic (when he has been to hospital for other things they keep him away from other sick kids so he has less chance of catching whatever is going around)...

What else to know ?

Don't listen to anyone's advice about what to eat, not eat, don't get too hung up on 'sugar free' stuff, lots of people will think that being diabetic equals 'no sugar'....that's simply not true - but they do emphasise a very health balanced diet and regular exercise - in terms of general health, our son is healthier than the rest of us!

Take a list of your questions with you whenever you have a doctor's appointment, and take notes! At 8 our son could do his own injections, calculations etc, so I'd imagine at 15 they will try to get your son to be as responsible as he can for his diabetes management as possible.

Health insurance covers you from date of entry. Make sure you get your health insurance lined up quickly. I don't think one is better than the other for basic, but we have cover with Visana and haven't had any problems, although I find that I can only deal with them in English via letter, but it works out in the end.

Everything, as I said, can be set up in a matter of days. Take care. I'm very happy to help - our son was diagnosed at age 5, and I have one nephew, my husband's half-sister, our son, one cousin and one aunty all with Type 1 diabetes (my aunt was diagnosed closed to 30 with type 1 and is now 60), plus a friend of ours whose daughter was diagnosed at age 2, so that's a pretty good reference group.

There is a diabetes association. Our info comes in German and covers both type 1 and type 2, and is mostly not easy to read, but our son gets invited to 2-3 events per year and a diabetes camp for a week. He went on a weekend trip to Europa park sponsored by one of the big pharmaceutical companies which was awesome!

He finds diabetes camp very challenging, we don't let him chicken out.For us it's the one week a year we have off from diabetes, and for him he learns a million tricks about diabetes from the other kids, finds out he is not alone in his experiences, and is extremely well cared for (all the doctors and nurses from the diabetes clinic usually come to help or for some part of the week, even his specialist! - and the helpers are all young adults who have diabetes too - so he's in excellent hands!).

Please feel free to PM me. As you can see, I can go on for hours!
Excellent post. I started a long one too but then decided to give the OP my phone number instead in a PM as felt it was easier to cover the ground.

But you are the perfect person for the OP to connect with as you have a child with type 1. Maybe drop them your number in a PM too? Can't imagine how busy (worried) they must be right now.
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Old 02.01.2012, 14:39
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Re: 15-yr old son newly diagnosed Type 1 diabetic ... looking for help/advice

Many thanks to all who responded to my post. I appreciate the outreach and support! It has been a crazy week, but I will get back to those who PMed me separately.

We were extremely lucky to have been immediately hooked up with the pediatric endocrinologist who works in the area (even before we have found a general doctor). For a new type 1 diabetic in Switzerland, the protocol is hospitalization for 10 -14 days. This put us in a bit of a shock, thinking as Americans would -- you would never stay that long in a hospital unless you were in critical condition! It is day 8 for us now, we are very thankful for the intervention and the attentiveness that the Swiss medical system has shown (access to dietitian, specialist nurse, psychologist, sports specialist). After about 5 days, they now feel he (as well as us) understand his condition and can start managing it at home. He is coming home for a meal or two and then going back to the hospital for overnight monitoring (again -- very different from what we would have in the US!).

2012 will bring a new 'normalcy' to our family, but we inspired by our son's courage and acceptance of how his life suddenly became very complicated.
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Old 02.01.2012, 17:26
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Re: 15-yr old son newly diagnosed Type 1 diabetic ... looking for help/advice

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...Don't listen to anyone's advice about what to eat, not eat...
I would generally agree with that advice, with one exception. T. Colin Campbell has been studying the relationship between diet and disease for several decades. He's not just another fad author with another new diet, out to make a profit. What he, his colleagues, and his students have determined, via long-term peer-reviewed scientific analysis, is that exchanging a mostly animal-based diet for a mostly plant-based diet can not only prevent, but reverse diseases such as heart disease, obesity, cancer, and diabetes.

His point is that the Western medical community largely relies on chemicals and surgery to "treat" diseases that can be avoided and reversed with dietary changes.

Don't take my word for it. To give him a fair chance, at least consider reading his book The China Study. For a more popular-level (if a bit hyped) treatment of the subject, there's the movie and book entitled Forks Over Knives.

Dr. Campbell began his research as the meat-eating son of a dairy farmer. He was not looking for the results he got.

Full Disclosure:
I am not a vegan or vegetarian, so my recommendation is not motivated by a personal ideology or agenda. I am currently reading Dr. Campbell's book for the first time, and find it informative and compelling. It may well change my own eating habits. I share this information because I would want to take Campbell's research into account when considering the way forward, were one of my children diagnosed with diabetes.
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Old 02.01.2012, 19:43
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Re: 15-yr old son newly diagnosed Type 1 diabetic ... looking for help/advice

I am glad your son was only in hospital for 5 days. Our nephew at age 15 when first diagnosed was in hospital for several weeks because he was so ill by the time he got there (muscles wasted, vision affected, very high ketones). Because he was a very serious athlete they had to send him out to do sport, eat normally at home, and then come back to the hospital for monitoring (this was in Australia).

We were 'lucky' in that our son was diagnosed very very early (no ketones at all) and his sugar levels normalised with the first dose of insulin. He was only hospitalised for 3 days, then we had to do 2-4 hourly sugar checks 24 hours a day for a few days, and then 2-3 checks overnight for a couple of months before being able to leave his testing for longer. In a lot of ways, I'd rather have that done in the hospital! We had a brand new baby at that stage (I'm talking 10 days old) and my husband was getting up several times a night to our son with diabetes, whilst I was getting up several times a night to the baby - it was absolutely insane for our family at the time...so I am very glad for you in that respect...

I just had a thought - did you get much written stuff from the hospital/clinic ? We have an awesome resource book from Australia, which answers just about any practical question you have, and of course in English. If you feel like you don't have enough written information in English, please let me know and I'll try to get my hands on another copy or make a copy of what we have....or the relevant chapters.

From what I understand, most families go through an adjustment process to the diagnosis which is not unlike the stages of grieving. The nurses/doctors at the hospital seemed to be waiting for us to have a meltdown about it - to be shocked, angry etc. But for us that did not come at that point, but I think in smaller doses along the way...and I find it gets pretty heavy whenever our son gets sick because that puts us into 'emergency' mode again.
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Old 03.01.2012, 10:49
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Re: 15-yr old son newly diagnosed Type 1 diabetic ... looking for help/advice

I am a type 1 diabetic on insulin. I remember when I was diagnosed that I felt terribly depressed for a good week and others I have met (type 1 or 2) also went through that, so it's probably a normal thing. Talking about it with others is good and even talking with your doctor can be helpful.
You need to have a talk with a nutritionist and your doctor should give you a prescription so that the costs are covered by the health insurance.
One thing I have understood over time, is that handling diabetes is very much a life-style type of issue. It's not just a matter of taking pills or jabbing yourself with insulin.
In other words, it's not just about sugar. I don't want to start giving advice on a forum like this, as it's very much an issue you need to discuss with your nutritionist and one person's diet is not necessarily right for someone else. However, the basic principle is that you need to eat good healthy food in reasonable quantities. If you want to "sin" occasionally, that too is allowed. The best way is to ween yourself completely off chocolate, say for 3 months or so, to know that you are no longer addicted and then allow yourself occasional small amounts.
Remember that diabetes is treated by your life-style. There are three factors that all need to be taken into account, two of which are under your control. They are: diet, physical exercise, medication. All three are essential and you need to understand that to keep it under control.
If you want to PM me, feel free to do so and I'll be happy to talk with you.
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Old 03.01.2012, 11:22
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Re: 15-yr old son newly diagnosed Type 1 diabetic ... looking for help/advice

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Why? Diabetes I and Diabetes II are not terminal diseases.
I have friends and family members who are both.
If someone has a condition like that they don't want people feeling sorry for them or telling them that they are sorry. They want people who will motivate and support them.
Just because something isn't terminal, doesn't mean the morbidity isn't extremely high. Also, diabetics have a lower life expectancy.

In addition, diabetic complications put it high up in the list for amputations, blindness and death from heart disease - to name only a few. Diabetes must be taken very seriously because failure to keep blood sugar tightly confined increases the risk of complications and death.

Please don't speak for all diabetics by saying that someone sharing sadness (i.e. sorry) that they are experiencing diabetes isn't helpful. I can tell you that hugging my best friend in grade 6 when she was diagnosed with type 1 diabetes and telling her I was sorry and that it would be better at least now that we knew what was wrong (she was undiagnosed for far too long and lost heaps of weight) did help. I can tell you the same for those adults in more recent years who have been diagnosed with type 2.

I know I'm doing a wee rant here but I thought the post in question was a caring one and I think you're unfairly picking at something that needn't be picked at. Saying you're sorry to hear someone is going through a hard time with anything doesn't preclude giving support and motivation.
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Old 03.01.2012, 11:44
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Re: 15-yr old son newly diagnosed Type 1 diabetic ... looking for help/advice

Hi illinifan, i don't have much useful info to post here but i am sure if you have any specific questions i could help! I was diagnosed with type 1 diabetes when i was 4 and am currently in my late 20's. I remember being 15 and not being very cooperative about diabetes care bc i thought i knew everything and could care less what i was told to do (hopefully this is not your son BUT i can relate and try to send some advice if it is). I see you are from the US so hopefully your son is not having too difficult of a time adjusting to life here.
Try to let him feel like he is making his own decisions so he feels better about taking the actions he is meant to- not something he is being told to do. Has your son considered an insulin pump? Something to consider down the road and to start speaking to your dr. about soon.
Do feel free to PM me if you have any questions or just wanna chat about life with diabetes.
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Old 08.02.2012, 12:07
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Re: 15-yr old son newly diagnosed Type 1 diabetic ... looking for help/advice

Hi
We moved to Zurich in Sept. 11 and took our Christmas break last week in ireland, we figured it would be less stressful to travel out of the Xmas period with a 4 a 2 yr old and a 4mt pregnancy. Last Friday our 4 yr old was diagnosed with Type 1 diabetes and my wife and her have been in hospital all week. The care has been fantastic but we fly back this Sunday, and whilst we are still dealing with the shock we do not want an interruption in the care and have no idea where or how to start in Zurich. Our GP is on holiday and his locum isn't answering the phone. We live in the nuerensdorf area.
Any tips on how to hit the ground running with appts, endocrinologists etc.
Cormac D
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