Born without a Pancreas?

[VickyA]

Hi there, my son Finlay (6 months) was born without a pancreas :eek: and started pumping at 2 weeks. We know that this is incredibly rare, we have found a handful of cases in the world over the last 40 years through scientific literature (many of them haven't made it :() but we were wondering is there anyone else out there at present?!?

Would love to hear from anyone :)

[BozziesMom]

Welcome to the board! What an incredible story. We're in the bigger boat - ours stopped working.

So I have to ask - is it effectively the same as treatment and maintenance goes, or do you deal with additional issues due to the lack of the pancreas?

So glad they got him pumping! How's he doing? :)

Looking forward to hearing more from you. Come on over to the Parents board if you haven't been already - that's the most active part of the site. I'm sure everyone will be welcoming and enjoy "meeting" you.

[mjtjmcouch]

I have never heard of such a phenomenon, but I'm sure there are others out there in the world. No honeymoon period for you I guess. Just curious, how much insulin is your little one currently taking?

[VickyA]

Hi there, thanks for replying so quickly :)

Essentially it's the same treatment as for Type I Diabetes. Additionally because of the lack of pancreas we also have to give him his digestive enzymes before each feed as he does not produce them himself.

If that wasn't enough he was also born with a complex congenital heart defect (open-heart surgery 4 weeks ago!) and without a gall bladder!!!

At present he is running at 0.125 (units per hour) during the day from 07:00 - 15:00 then 0.225 from 15:00 to 21:00 then up to 0.25 from 21:00 until 07:00 when it starts all again!!!!

I'll definately go over to the Parents Forum and post there :)

[Scotty's Mum]

Hi Vicki

Nice to "see" you here. There are a few of us kiwi's around, and I'm sure they will chime in and introduce themselves also.

This is a great place for information and support, and there is usually someone around, no matter what the time, to answer any query you might have. As the others have said, the parents board is the busiest so I look forward to "seeing" you over there.

[grantsmom]

welcome!

This is a great group of people. I sure hope you find the support you need here.

[Nancy in VA]

Welcome! I've never heard of anyone born without a pancreas but my kids writing teacher wears a pump because she had her pancreas removed!

[OSUMom]

Welcome Vicky!! Really great to see you join our community!!! :cwds::cwds:

[Daxdog]

Just wondering, what type of pump is he on? I am assuming animas because they have thesmallest basal increment.

[VickyA]

Just wondering, what type of pump is he on? I am assuming animas because they have thesmallest basal increment.

Yes he's on an Animas pump, as you said it was able to give him the smallest insulin doses when he was very small and even now gives us more scope :)

[deafmack]

Welcome to these message boards. I am glad you found us. Keep posting.

[LantusFiend]

There's an invitation only subforum for people whose kids were diagnosed before age 1, some of whom have unusual sorts of diabetes- perhaps you should ask there.

[VickyA]

There's an invitation only subforum for people whose kids were diagnosed before age 1, some of whom have unusual sorts of diabetes- perhaps you should ask there.

Had a quick look but couldn't see the subforum - whereabouts should I look? Sorry if I'm being daft :)

[LantusFiend]

The most recent thread on the topic of the subforum: http://forums.childrenwithdiabetes.com/showthread.php?t=22714&highlight=neonatal+forum

[Becky Stevens mom]

Hi, just wanted to tell you that there has been someone in the parents chatroom with a 14 month old that was born without a pancreas. I cant remember her name but it might have been Julie

[Zainab]

I don't know what to say? I haven't spoken to anyone with the same problem.I am new on here and I have many questions for you.My son, Adam is 22 months. not a lot of time now hope to talk more soon.

[clb1968]

Welcome.

I do not know of anyone personally at this time, with a child born without a pancreas.
I did have an endo back in the early 90's , his father did not have a pancreas.
I have had type 1 diabetes for 18 years , I was diagnosed at 21 years old and I have been pumping for a little over a year.

[SarahsMum]

I did a search and came across this topic

My DD was born on the 28th november at 31 weeks, weighing 735 grams.

Although not yet conclusive it appears she also has been born without a pancreas.

Due to her small size its throwing some obstacles in her way, but she is a little fighter indeed.

Was your baby born early or of a small size?

Cheers

Kat

[VickyA]

I did a search and came across this topic

My DD was born on the 28th november at 31 weeks, weighing 735 grams.

Although not yet conclusive it appears she also has been born without a pancreas.

Due to her small size its throwing some obstacles in her way, but she is a little fighter indeed.

Was your baby born early or of a small size?

Cheers

Kat


Hi Kat

Sorry not to have replied sooner, my husband just pointed out your message (he has also replied on another thread). Firstly congratulations!!! Finn was born at 38 weeks (so considered term) weighing 1.3kg. Within 10 days he was diagnosed with pancreatic agenesis. Does your daughter have any other issues? Finn was also born with a number of congenital heart defects which we found out about during my 19 week scan. Finn is now 9 months old and doing so well. It hasn't been easy but we have a fantastic Endo team. He was put on a pump straight away and we haven't looked back. I hope that everything continues to go well ..... feel free to ask any questions you may have and I'll try and answer them. I'll send you a private message with my email address if you want to get in contact that way.

Take care

Vicky xx