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Anybody know anything about babies and diabetes?

13 replies

cardy · 13/06/2008 09:13

I've just had a very distressing phone call from a close friend - her 3 month old baby has been rushed into hospital (now in intensive care) and has been diagnosed with diabetes. She was ringing to ask if I could look after her 4yo and take her 6yo to school which, of course, I have done. She was obviously extremely upset and not thinking stright so other than practical things for her other 2 dds she wasn't able to say very much except dd3 is very poorly.

The whole thing is really upsetting and dd2 (here with me) is very upset. I just wanted to know if anybody has heard of diabetes in such a young baby and how it might be treated. I know of toddlers who have been diagnosed but not younger children. Any info would help.

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getbackinyouryurtjimjams · 13/06/2008 09:32

Yes- when it's in such a young baby it is often a type monogenetic diabetes. Which can be misdiagnosed as type 1. The advantage of monogenetic diabetes is that it isn't treated with insulin.

see here this research and medical team are UK experts. The useful bit for your friend is 'maturity onset diabetes of the young' (MODY). There are quite a few UK genetic diabetes nurses now - who can arrange testing for this condition. Hopefully your friend is in an area that has one and it will be done automatically. If not I'd advise her to contact this team for advice.

getbackinyouryurtjimjams · 13/06/2008 09:33

Sorry - I meant check out the neonatal diabetes link.

getbackinyouryurtjimjams · 13/06/2008 09:37

this story is a bit more accessible

getbackinyouryurtjimjams · 13/06/2008 09:40

Here's the important bit. Scroll down to the bit at the bottom where it says instead of insulin they take pills twice a day. It's why it needs to be ruled out as its so much easier to manage:

In the last two years, however, a team led by researcher Andrew Hattersley, of Peninsula University, Exeter, UK, has begun to study specific genes in patients diagnosed with diabetes before the age of six monthsâ??about one-tenth of a percent (1 in 1,000) of all type 1 diabetics. Nearly half of these patients, about one out of 200,000 newborns, turn out to have a mutation in one of two critical genes that work together to form a channel that regulates the flow of potassium ions in and out of the insulin-producing beta cell.

In the normal beta call, glucose metabolism results in increased levels of ATP, a molecule that cells use to store energy. The increase in ATP causes the potassium channel to close. After it closes, potassium ions accumulate within the cell. When they reach a certain level, they trigger the opening of calcium channels. Calcium ions flow in and the cell responds by secreting insulin.

Mutations, such as Lilly's, that affect the potassium channel, make it less sensitive to the build-up of ATP. The channel remains open, allowing potassium ions to flow in and out rather than accumulate. As a result, insulin secretion is drastically reducedâ??in Lillyâ??s case, to undetectable levels, even though she still had the normal number of insulin-producing cells

Drugs of the sulfonylurea class, developed decades ago to enhance insulin secretion in patients with type 2 diabetesâ??usually seen in adultsâ??can close this ATP-dependent potassium channel.

A study by Hattersley and colleagues, published August 3, 2006, in the New England Journal of Medicine, showed that in 90 percent of patients with neonatal diabetes caused by mutations in one part of the potassium channel, high doses of sulfonylurea could restore normal insulin secretion. The only side effect was mild, short-term diarrhea in about ten percent of patients.

A second study, published in the same journal by a group from France and Houston, found that five out of nine patients with a mutation in a second gene that affects the same potassium channel could also be successfully treated with a sulfonylurea drug, allowing those patients to stop their insulin injections.

In short: Lilly's mutation prevents the cells that make it from secreting insulin. The sulfonylurea drugs correct that defect, and in Lilly's case empower her own cells to do what they are supposed to do.

Precise genetic diagnosis and targeted medication doesn't cure the disease but it vastly simplifies disease management and improves long-term prognosis. Patients still need to monitor blood glucose, although much less often. Instead of frequent insulin injections, they take pills twice a day.

"As long as they take their pills, it's like trading a severe case of Type 1 diabetes for mild case of Type 2," said Philipson, "a trade anyone would make. It's comparable to swapping influenza for the sniffles."

cardy · 13/06/2008 11:12

Thanks for this. Baby being transfered to Alder Hey in Liverpool from a local hospital, I assume they have more expertise there. Will pass on this info when she is ready for it.

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dilbertina · 13/06/2008 22:12

Have a look at this website or suggest she does at some point - it is an american website, is very good and she'll be able to find lots of info and hopefully support from other parents. There is a section "ask the diabetes team" where effectively you can ask questions from top US diabetes specialist docs. I've found it very useful when I wanted advice.
children with diabetes link

Until you know the exact diagnosis it's hard to say what the future holds, but as Yurt says Diabetes in one so very young is extremely rare and recent developements have shown that often this isn't usual Type 1 diabetes as used to be assumed. It is an area where big advances have been made recently.

bramblebooks · 13/06/2008 22:21

I wholeheartedly second the link dilbertina has given. VERY IMPORTAN@TLY (sorry , pimms!) there is a link to the UK email list. I suggest your friend open a googlemail account to deal with it as there are lots of emails going back and forth. A couple of parents on that list have children who were diagnosed at birth. There are also parents with toddlers and other young children who will be able to give your friend an idea of what to expect and about the very positive treatment regimes that can be followed. Other parents are working with feeding young babies on insulin.

I wish her all the very best. x

cardy · 14/06/2008 10:38

Thanks for all the advice. Baby is still in ICU at Alder Hey and is critical but stable.

Although she has been treated for diabetes and her blood suger levels have decreased to less dangerous levels, they are now not sure whether or not it is diabetes and are going to do various other tests.

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getbackinyouryurtjimjams · 14/06/2008 13:23

Sounds terrifying. Hope they work out what it is soon.

Oblomov · 15/06/2008 18:54

Gatbackinjimjams, that is fascinating, and i had never heard of it. I was diagnosed as a type 1, at the ahge of about a year.
If it is daibetes, and we can be of any more help, please come back to us.

cardy · 17/06/2008 20:53

They have now confirmed diabetes (diabetic Ketoacidosis). Baby is now stable and responding to treatment although blood suger level is flucuating. The main thing that she is OK and recovering whereas on Friday night there was the possibility that she wouldn't be with us....that is just unthinkable.

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getbackinyouryurtjimjams · 18/06/2008 13:42

I'm glad she's now stable. Must have been very scary. If she's difficult to stabilise do mention the monoegentic stuff- apparently that's a key sign- hard to stabilise on insulin.

I don;t know a great deal about it, just sat next to someone who is doing research in this field at a works dinner (and asked her quite a bit about young children as it's in our family).

bramblebooks · 18/06/2008 13:57

Pleased to hear that things are looking better. There are some amazing treatments out there, including insulin pumps (we're trying to get funding for one for my son). All the very best, let us know how things go. x

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