Hello, my name is Berkay and I come from Offenbach. I am 21 months old. I´ve had hyperinsulinism my entire life and my mom tried everything: fed me every 3 hours, even during the night, and gave me high dose octreotide through a pump. But still the hypoglycemias became more frequent, and I often had to go to the hospital emergency. My parents didn´t dare any longer to drive anywhere.

 

Desperate, we put ourselves under the care of Professor Mohnike in Magdeburg. He ordered a genetic examination and it showed a constellation typical of a diffuse form. But, because the severe hypoglycemias kept increasing in spite of the high-calorie food and the medications, he sent us to the Diagnostic-Therapeutic Center at Frankfurter Tor for a PET-CT.  Both Professors Mohnike and Barthlen were present during the scan, because we wanted to weigh the option of an operation. The PET-CT then did show the expected diffuse form, but also small accumulations that pointed to a mosaic pattern. Professor Barthlen then talked for a long time with my mom and dad and answered all their questions. He was very frank in saying that an operation did not ensure a cure, but that an improvement might very well result. In the worst case, it would remain just like it was. And, he said, that he would operate on his own child, too. My mama believed him and drove to Greifswald.

 

I was operated on with the minimally-invasive "keyhole technique", too. I also lucked out: even though my pancreas was diffusely affected, there were parts that were low-level-active to almost-normal. And I had three large foci, two on the tail and one on the head right over the large bile duct. Professor Barthlen removed only the two foci on the tail with laparoscopy and nothing more. Because if they remove too much pancreatic tissue, as used to be the case and unfortunately a few surgeons still do today, then the hyperinsulinism flips almost always into its opposite, into diabetes that often does not appear until later, in puberty! Professor Barthlen wants to avoid that at all costs and that is why he very selectively removes only the most affected areas.

 

Anyway, so I was operated on in Greifswald at the beginning of June, 2011, using the keyhole technique; two days later, I was in tip-top shape again, and I have almost no scars. But the beauty of it is that since the operation I haven´t needed any more medication, and no pump, either!  My blood glucose during the day gradually settled in the normal range, only at night did it sometimes drop to 2.2 mmol/l but no lower. But that´s not a problem anymore either, because my evening meal is fortified with Mondamin. For the first time in my life, my parents and I could sleep through the night!

 

Nine days after the operation we came home. We still can´t quite believe how totally different our lives are: no pump and no more octreotide, no medications whatsoever, no waking up during the night, eight hours sleep for everyone! Of course, my mom still has to test my blood glucose regularly, since I still have a lesion in me, the one over the bile duct. But it seems to be too weak to make me sick, because, like I said, the blood glucose is o.k. since the operation! We´re enjoying our life a lot and please cross your fingers that it stays like this.

Thanks.

PET-CT from 24.05.2011

The trend in Berkay´s blood glucose since the operation. The fluctuations in blood glucose levels are smoothed with a meal rich in starch. Berkay no longer needs octreotide.

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