Hello - this is my personal story. I released it on the internet, because I want other parents and my patients and their parents are encouraging.
Moreover, not much is known about hyperinsulinism. Here, perhaps (future) doctors read and I hope that they can learn from my story, maybe even a little:

My name is Cian and am on Saturday evening, born 27.06.2009 at 23.09 clock in the train (which is located in Switzerland).

My mom says that the pregnancy was without complications at birth and that I am 51 inches tall and 3'520 gram was difficult, so in the 38th Week of pregnancy. The birth went very quickly, within a very short time I was there. My dad and my sister Yara (Born 26.09.2006) have was thrilled when I was finally here!

In the night my mom has slept a lot, because she was tired of the strict, quick birth.
Everyone thought that I sleep soundly ... Until then I was on Sunday morning, taken as a clock at 9 attentive postpartum nurse, for a short in the interstitial space: I had it a little too pale.

The shock was immediately followed by: My oxygen saturation was barely at 40% and my blood sugar levels were around 0.3 mmol / dl.
The first dispatch time I got an oxygen mask placed in front of my face, to me, was orally administered glucose. But that was no good.
The pediatrician came to see me and quickly ordered the ambulance service from the Children's Hospital in Lucerne. Prof. Thomas Berger was there, I put the glucose infusion, and immediately felt better. But I had to check with to Lucerne where my blood sugar was monitored continuously. There I also had a unilateral seizure event, according to my doctor was so much to lead to low blood sugar after the birth. My parents visited me for the first time on Sunday afternoon. Incidentally, the lab report, the blood glucose level of 0.1 mmol / dl confirmed.

First it was said that I have difficulties in adapting to the blood sugar. This should be over in about three days.
Unfortunately was not the case. I constantly need new infusions of glucose, usually after two to three days later than I needed a new infusion. Placing these infusions, I did not like at all.
As my blood sugar levels were constantly critical, many blood tests done and it began a process of elimination. My parents (and sister) needed a lot of patience. My dad was furious about this situation and have my mom in the time to cry a lot. The time in the hospital I received from Dad and Mom especially when on the arm a lot. At least we have the hour-long Kangaroo (lying on moms chest) during this time a little comforted.
Mommy has pumped much breast milk and also prevailed with breastfeeding. Since I had always weighed before and after, so the doctors knew how much I drank.

After about 10 days, Prof. Thomas Berger was my parents first told his suspicions: hyperinsulinism. The final diagnosis was later confirmed through multiple tests.

My parents have the notion of time then googled on the Internet. My mom was shocked about this condition and the damage caused by low blood sugar levels.
You have the internet then what hyperinsulinism As long time shunned because she refused to be unsettling. There are different types of hyperinsulinism and the courses seem to be very different - that's why they wanted to see for yourself how I wanted to develop and not additionally be worried.

The Children's Hospital Lucerne I spent 4 weeks. Then my parents sent me to Children's Hospital Zurich brought because there is more experience with the rare Hyperinsulinsmus. Only one of these 50,000 children have hyperinsulinism. Because it so rarely, is unfortunately also often very late and often thought of becoming parents with supposedly 'healthy' children sent back home where it can cause a dangerous brain-damaging and life-threatening hypoglycemia.

The Children's Hospital Zurich, Prof. Eugene Schoenle over my care. Equal, the test was started with diazoxide and saw it only once promising. After five days it was clear that there were too unstable despite diazoxide values. Therefore, the diazoxide was discontinued and Sandostatin (octreotide drug) treatment. This then has stabilized my blood sugar better. Days later I received the insulin pump, wherein the reservoir had to be then filled with Sandostatin. Every two days, the catheter had to be changed from one thigh to the other. I did not like at all. My mom had to learn everything and was prepared for the dismissal. They got inside a huge box with lots of accessories: information about the pump, catheter and tubing, disposable syringes for insulin dosages should fail if the insulin pump, blood glucose meter and test strips, liquid glucose for emergencies, in the worst emergency Glukacon syringe, etc.
This is an emergency scenario as they had to proceed if there are any problems, and emergency phone numbers for emergencies.

Home
On 21 August 2009 - just over 8 weeks after my birth - I was finally home.
I did not know that the world can be as colorful and had to get accustomed to the place, get to know the sounds and smells.
It was followed by a beautiful, peaceful time.
My mom has me not later than breastfed every 3 hours during the day. Prior to that, of course, measured the fasting blood sugar and blood sugar registered in the diary. At night she nursed me usually every 5 hours.
My sister Yara took the breast-feeding also very exciting. Often she sat next to the doll and has this - before they took to the breast - even the blood sugar measured.

First PET-CT and MRI
In October 2009, I had to go back to the Children's Hospital / University Hospital of Zurich for PET-CT and an MRI. They told my parents that I have a focal form of hyperinsulinism. The focus is on the forefront in the pancreas: to go through because there vital arteries, bile ducts, etc., is a surgical removal of the focus, however, too sensitive. It has therefore been recommended to my parents treat me to continue with Sandostatin.
The MRI of the brain showed no abnormalities.

First months of life
Until my seventh Month of life, everything went so far as 'normal' - as you can just live with hyperinsulinism: blood glucose measurements and appropriate food intake (silent at this time). My mom took me about breastfeeding every 3 hours, until the age of 6 months it worked very well. The Sandostatin (I got the concentrated form) was the starting dose of 2.0 units on a fifth, ie 0.4 units can be reduced. That made us all very hope that the hyperinsulinism grows on me. From 7 Month of life has changed the milk, it was watery and also because of the stress less.
In that time I also became more active and have not slept as much as in previous months. My mom has weaned too and I got the bottle adapted meal (Bimbosan, Swiss product). The dosage of Sandostatin was very quickly at 1.6 units, 2.0 units at the end again.

Sandostatin - in the insulin pump
The Sandostatin had to actually be refrigerated. No sooner was it in the insulin pump, there has been probably due to room temperature (and body heat) reaction: the formation of bubbles. This has upset my mom. If these air bubbles in the catheter (tube) of the pump were, they had to constantly check the hose, let the air escape - and that was very difficult. Because if I take Sandostatin only get air, my blood sugar levels are much lower! So Mom took the Sandostatin from the fridge, this filled the reservoir to the pump and then left this time to rest for about 6 hours. Then they had the first big air bubble in the tube by tapping escape and were then almost no bubbles. Nevertheless, they controlled the reservoir when changing diapers, and any air bubbles escape directly from the reservoir can be. Thus, the handling was made much easier the pump again.

Profile in the insulin pump - daily blood glucose fluctuations
My blood sugar levels were higher in the morning and in the morning rather than midday / afternoon. Towards evening, from 16.30 clock my values ​​were generally not as good and often my parents had to adjust the blood glucose measurements after their gut feeling. It was her motto: better to have too much measured, rather than too little time. My parents have created a profile in the insulin pump: thus was early morning and forenoon a reduced dose of Sandostatin and this increases at midday / afternoon, and especially in the evening until bedtime.

Emergencies
In an emergency (especially stomach / intestinal infections) Mami has increased the dosage of Sandostatin on the insulin pump enormous - up we then oh and cracking, the cannula with 50% glucose in a handy place moms hand in to me the sugar water to the had reached the mouth to dribble (I often had to throw up because of the sweet stuff) to the clinic with saving the glucose infusion. The worst was always stressful trip to the hospital and I finally get to the saving infusion. Then we were able to breathe first - and nothing else to do but wait until the values ​​had leveled off again in the normal range.

Sandostatin - side effects
Side effects of Sandostatin my parents have found none.
My mom has never read the package insert. Although she has thrown a glance: to read, however, shied it. My dad has read the side effects and told my mom that they do not want this. Papi knows them very well and they would have next to hyperinsulinism additional attention to possible side effects (and even then she had not slept for sheer worry me).

Infections
I've had teeth at 18 months, all (except for the second set of molars). So I had the time, many infections.
No doctor will tell me that teething is not associated with an increased susceptibility to infections go - I am the best example:

January 2010: infection with RSV (HRSV): hospital stay of 3 days (total of mucus had no chance to eat something trike /).
March 2010: diarrhea in the hospital then also infected with Rota, hospital stay of 2 weeks
April 2010: diarrhea in the hospital then also infected with adeno-virus (could barely swallow, etc.). Since I got the Port-a-Cath was so easy to make with the infusions.
Summer 2010: we struggle through. I'm getting teeth, so I'm thinner chair and an increased susceptibility to infection (hand-foot-mouth disease).
October 2010: 2 day hospital stay as an aftermath of a norovirus infection (which has only two days afterwards made apparent in deep unstable blood glucose levels.


After all these infections and the associated hospital experience, my mom was probably one of the more critical patients' mothers. She has been very active for me, at times even doctors and nurses fought against illogical decisions or decisions critically scrutinized and justified. It was at this time, my lawyer first.

Breastfeeding, bottle food, porridge, meals
My sister Yara as a baby could eat no mush. And I liked it even less - yuk.
A true sister boy I've exclusively until the age of around 12 months of feeding milk. That was why mommy by the testimony of some doctors was 8 or 9 months old when I can not feel insecure. The fact I wanted to force the broth, respectively. enrich the vial. But Mami has refused the strict and do not continue to pressure the food given. I could eat with the table, or rather trying to say and then stop still got the bottle.

Enriched diet was not my bottles. After a few trials with appropriate amount of Mondamin Mommy has given up. The blood glucose concentration remained stable for almost 15 minutes - if at all. So I got the bottles meals every 3 hours (approximately 120 to 150 ml).

Depending on what and how much I eat, blood sugar after a meal was between 45 minutes to a maximum of 3 hours. With 3 hours was extremely rare! Back then there were just what to nibble or just a bottle. Risotto with lots of cheese in it I've always liked very much and that kept my blood sugar even more stable. Otherwise, I liked a lot of vegetables or fruits, which, unfortunately, just for the blood sugar was not ideal.

My weight was always below normal, but I was on the length of her above average.

Surprising News
In August 2010, my dad traveled for two weeks in Alaska, USA. Thanks to satellite phone was my mom tell him that she has found on the Internet that focus on the surgical removal of the pancreatic head in Germany is perhaps possible.

Seek a second opinion from Germany
On 8 September 2010 I was with mom to the control (blood, etc.) in Zurich. They discussed with Prof. Eugene Schoenle obtaining a second opinion in Germany for a possible operation. Prof. Schoenle gave us to Prof. Klaus Mohnike in Magdeburg DE and supported us in the Swiss disability insurance cost credit.

Second L-dopa-PET-CT and ultrasound
19th October 2010: My whole family travels with me to catch up to Magdeburg DE with Prof. Klaus Mohnike a second opinion. The L-dopa-PET-CT has been in private practice at Frankfurter Tor in Berlin, the brother of Prof. Klaus Mohnike, Prof. Wolfgang Mohnike. Dr. Ludwig von Rohden, a veteran and seasoned ultrasound specialist has confirmed the focus in the pancreatic head, one day before the L-dopa-PET-CT (only by ultrasound and by his practiced eye - he did not previously know if I'm diffuse or if I have one focus). Dr. Traugott Eberhard makes the important evaluation of the images of L-dopa-PET-CT. Thereupon, Mr. Prof. Klaus Mohnike consultation with Prof. Winfried Barthle (surgeon) recommend you to my parents the surgery.

Questions about surgery
Home my parents create a huge list of questions with different scenarios of operation: Opportunities, risks, complications, consequential damages, so this had to be the surgeon, Prof. Barthle only answer exactly once.

Operation
Tuesday 16 November 2010: mom travels with me to the Baltic Sea to Greifswald, where DE makes Prof. Winfried Barthle with his team the operation. The surgery is not easy and takes almost 12 hours. The digestive enzymes of the pancreas had to be diverted otherwise shared in the intestine via Rouen-Y. But the operation has been more than worth it: I AM HEALED of hyperinsulinism!

The focus was sitting up front at the head of the pancreas. Not impossible, but a difficult and complicated procedure. The operation had been using abdominal cross-section to get to the point of focus. Because the pancreas was dissected and the digestive enzymes needed to be diverted to the other reason, I was asked during 4 days after surgery artificially calm.

My mom will forget the day of surgery probably never. She has asked Wieck and Greifswald, the beautiful Baltic Sea seen and thought to myself constantly.
The days that followed were not easy for her: she was sitting on my bed and waited and waited. Because many of the water, I looked like a Michelin tire males. Until I was extubated after 4 days - hardly the breathing tube was out, went back all the water. Of course I was scared and pain - I wanted out of this bed and my mom. But this I could only comfort her sitting on the bed because I could not be moved. This was something of the hardest for them. But because they had to stop by with me. Fortunately, the doctors and nurses were very understanding about her (and me) and have encouraged us.
On the tenth day after the operation I did gymnastics around in bed, despite my belly cross-section of the left lower rib cage to the right lower rib cage. And I kept mum and sisters on the trot. Mom told me recently that I should have been one of the loudest patients.

Why my parents drove me to Magdeburg, DE and DE are Greifswald?
They have at length by telephone, via e-mail and know personally inquired with experts about what doctors and hospitals in hyperinsulinism and things which are recognized International! The success rate (not the number of transacted operations) was important to my parents. In addition, my parents have a very good understanding of people and my mom has Mohnike Professor and Professor Barthle from the beginning because they were familiar and honest with her.
The surgeon, Prof. Barthle knows exactly what he is doing and what can happen if he removed too much tissue from the pancreas - and he wants to avoid. Because my parents did not even diabetics have Type 3 made out of me.

Thank you
We thank Prof. Winfried Barthle and his professional team for his work with the best expertise and his skills! Thanks also to Dr. Mueller and Dr. venison from the surgery. Thanks to this extraordinary teamwork, we can lead a normal family life without limitations. I need no more check-ups!

Special thanks to the team of children's intensive care unit of Prof. Stenger in Greifswald - thank you for your patience with my mom.
Thanks also to Dr. Silke Vogelgesang (pathologist), Dr. Schroeder (endocrinologist), the anesthesiologist is Dr. Kuse, and our thanks to ALL the people I have not mentioned directly, but that their valuable work to my recovery have contributed.
Only through your work team and an excellent balance between I may be healthy today!

Thank the Magdeburg team: Prof. Mohnike, Empting wife and everyone who helped and supported us!
Dr. Ludwig von Rohden for his esteemed work and knowledge.

Many thanks also to Dr. Traugott Eberhard. Without your exact evaluation of the images from the PET-CT step of the operation would not have been possible. Only your long years, trained eye makes an accurate diagnosis at all possible!

Our thanks also go to Prof. Thomas Berger of the Children's Hospital of Lucerne, which has ensured my perfect first medical care. And what an early age had a possible suspect in hyperinsulinism, until then this had unfortunately confirmed. With your right action could prevent subsequent damage.

Many thanks to Prof. Eugene Schoenle from Children's Hospital Zurich (Endekrinologie), who has accompanied us for 18 months. And what my parents have been very early awards for the expertise that they could provide me well (with insulin, Sandostatin, blood sugar measurements, etc.). Thanks to the support of Prof. Eugene Schoenle we could obtain a second opinion in Magdeburg, DE, and then perform the operation in Greifswald DE - many thanks that you have referred to the correct address in Germany!

For more information
Further details in the post of 21.12.2010 in the forum or at the following links:



http://www.medizin.uni-greifswald.de/ki_chir/


Thank Prof. Barthle for your help!
In the meantime, you have also helped other children, which include the diagnosis of diffuse and have had to get up but then showed the mosaic form. I recommend everyone get a second opinion from Prof. Barthle in Greifswald and Professor Mohnike in Magdeburg catch! For my child I would put everything in motion again.

http://idw-online.de/pages/de/news403283

First Christmas without hyperinsulinism
December 2010: We enjoy the family life and celebrate Christmas special.

Help, questions to ask my mom
My mom is in terms of hyperinsulinism remain active and interested - these 18 months, our entire family have strongly influenced.
If you have questions you can you be happy with PN speak to my mom.

I wish you good luck and enjoy your special child!

The longest march begins with the first step. Lao Tzu

Only those who stumble does not creep. Niklaus Brant's

Update
23/07/2011: 25 Month of life
I was developing very well. I talk, play, run, climb, fight, drive Bobby-Car and Motorcycle plastic do, so everything that a young child is doing at my age Sun
I like how much I eat, or let it be well again. I like to nibble chocolate.

My whole family is grateful every day that I could be cured by surgery. Only the very nice scar reminds us become what we have gone through in the first 18 months of life.