Anyone with any experience of hypoglycaemic brain damage?

[vicsta]

Wonderful son is 9 weeks old now and after nearly dying from hypoglycaemia shortly after his birth, is doing remarkably well. Nobody knows what the future holds for our boy, so we feel a bit in limbo at the moment. Can anyone share their experiences (good & bad) to help us prepare? We are expecting epilepsy, physical and mental impairment and possibly blindness - such is the damage to his little brain, so please don't be wary of scaring me! All help gratefully received xx

Our dd1 had a massively severe brain haemorrhage when she was born prematurely, and very ill. The prognosis was very bleak, and initially she was not supposed to make it home with us.
DD1 has a variety of diagnoses, including CP (litle use of left hand, slowly learning to walk now), epilepsy, hydrocephalus with VP shunt, visual field deficit, and bahavioural issues, all due to the initial injury. But the general concensus on her is that the original brain scans bear little resemblance to the child she is now. (She shouldn't be here at all...) So in my limited experience it is very difficult to predict - something dd1's physio always says too!
Congratulations on the birth of your baby boy. I hope you get appropriate and good professional input as needed - we had a physio for dd1 from 6 months old, so things can start early. We also had portage from 8 months old, which I found useful.
With very best wishes to you all.

Hi, Congratulations on the birth of your son, I have diabetes and so hypoglycemia was a major concern for my two DSs after they were born

Luckily neither of them were hypoglycemic after they born, but I have quickly done some reserach now, and it seems that the extent of damage (if any) depends on the number of hypoglycemic episodes and the duration.

Sorry can't help out more, but all the best for you and your little one...

Hi, Just wanted to say congratulations on the birth of your baby boy x

You could try Specialkidsintheuk.org they have a forum (general) for mums like this one, you may find someone there in the same situation.

Wishing you both the best of luck x

Hi, nothing useful to add, but congratulations on your little boy.
x

Hi and congratulations on your little boy! My friend's daughter has hypoglycaemic brain damage, she is now a teenager. To be honest, the effects on her are pretty much as you describe, blindness, severe learning difficulties, physical impairments, severe epilepsy. Obviously all children will be differently affected, and despite all this she is generally a happy girl. If you want further info, perhaps you could join specialkidsintheuk.org and I will find you there. My friend is a member too. x

Thank you, have joined special kids last night, still trying to find my way round it. logged in as Gabrielsmum, so may see you there! xx

I'll hunt you down

Do you know what your DS BM was? This is something we are looking into at the moment with my DS.
He has CP - can walk a little indoors, but not outside. He has epilepsy and Horner's syndrome (affecting his eyelid and dilation of pupil). He also has problems with processing visual information - it takes longer to reach his brain.
He was born 5 weeks early and his BM went down to 0.3 for around 3 hours. We have a solictor who is looking into this for us, but I feel we are getting nowhere fast. Would be very interested to know what happened in your case. Have never come across anyone who has had the same sort of problem as us!
Congratulations on the birth of your LO by the way.

hi vicsta
just seen this message. My dd was born with hypoglycaemia. She also had IUGR. She's 3 now. She's also had a number of serious hypos, mostly when unwell. We still don't know why. She's under endocrinologist but all still a puzzle at the mo.

She's a delightful little girl. She does have developmental problems but it would be impossible to say whether this is a result of hypoglycaemia as she has a rare chromosome disorder.

There was a lot of concern over her vision initially and still now (is checked every 2 months)She's very short sighted in one eye but this has actually improved over the years. She wears glasses and needs eye drops due to eyelids not always shutting but she can see - no means a major deal.

There's some pics of her on my profile.

Hello, Thanks everyone for responding, NAT Gabes blood sugar was 0.8 on admission to SCBU, took a very long time to increase it as he also suffered hyperinsulinism and a bit of a dodgy cortisol level. EJ we are also under care of endocrinologist, Gabe is treated with hydrocortisone which is fake cortisol, at the mo, but, like you, he is a bit of a puzzle to everyone. Nobody knows what happened to make him so ill. We had a very difficult delivery (4days active labour, stuck at 8cm, V slow progress, ended in EMCS due to foetal distress and was not breathing) BUT he recovered well and fed brilliantly. He was seen by paediatrician on maternity ward at 2 days old and was OKd for discharge next day. We had a perfectly healthy baby. He didn't feed very well overnight but nobody was worried as he had done so well with his feeding and, of course, had been given his MOT by paediatrician. After about 6 hrs of harrassing the nurses being the typical overbearing new 1st time mum, the sister in charge came to see us. had a good look at Gabe and decided to try him with another bottle. Took a bit, went to sleep. He woke up and I burst in to tears, something was obviously very wrong. Eyes glazed, very cold. Then all hell broke loose, a nurse tried to bath him to try and wake him up a bit while the doctors came down, but he went completely rigid and was yelping. I was inconsolable at this point. they took him from me and I was sick. It took about 4 hours to stabilize him on SCBU, by which time the hypoglycaemia had caused significant damage, Gabe suffered persistant fits for the next 2 days. when we finally got to see him I thought I might just die. I couldn't understand what had happened. Still can't, 10 weeks later. I wish someone could tell me what was wrong with him, or why this happened. He really is the most adorable little man, who has fought so hard and proved his doom monger doctors wrong so many times. We love him dearly and each little hurdle he jumps brings us so much joy and we couldn't be prouder of him. But still, I can't help wondering why and what if? Its so frustrating having no diagnosis and no real prognosis other than wait and see. That said waiting and seeing is OK sometimes. He's a regular smiler now and, even tho he won't respond to any proper tests yet, his GP, health visitor and just yesterday, his outreach worker all think that he can see! It's not likely he has much vision, but even just that little bit will be extra stimulation for him. Yay!

PS- EJ - your daughter is a babe, such beautiful colouration, like a little doll. She looks a wilful little thing too!
NAT - we have not approached a solicitor yet but have asked for a formal inquiry into Gabriels care. We feel we are getting nowhere too so I share your frustration. Good luck xx

PPS - not to be a competitive mum or anything, but I've posted a piccie of the gorgeous one on my profile, if anyone owuld like to see.

Yep, with you on centre of universe. Have to click on my name to see piccie. Am off to look at yours now!

RIVEN WOW! You must be sooooooo proud. These kids are bloody amazing, aren't they? Pictures like that make me feel so humble. When i look back on Gabe's photo's, I can't believe how much he's been thru and how strong he is to do so well. If I had half their strength...........

vicsta
I can't see yr piccy either - get the no such page or privacy settings won't allow access message. Owww! Bet he's adorable. He has lovely name.

Riven yr dd is a poppet! I love the pic of her and eyore!

vicsta - you've had an incredibly fraught and stressful few months. I'm sure you are very strong. You may not feel it all the time (or any of for that matter) but you are also having to contend with all other conflicting emotions. Try and be kind to yourself.

Gabe sounds like he is doing very well - smiling is a very good sign. I think you just have to relish all of this good stuff and blot out as much of the fear / uncertainty over the future. Easier said mind.

fwiw dd has ended up in coma and needed iv lines in both arms and legs to bring her round after bad hypo at 17 mths. Her body chemistry went totally to pot and took a few days to settle down. She's had hypos frequently since but never so bad cos we have bm kit and keep a check. We've only ever been given reasurrance by her paeds re long term effects. Sometimes I'm convinced her development slowed after but then I think how a few months after this the OT discharged her and she did score some age appropriate stuff in dev test. She has learned to stand since - despite various recurrent illnesses - so has it affected her? Impossible to say really and it drives me mad at times

Please feel free to chat / moan / rant to me any time. I'm not on here loads but check in on evenings when nippers are in bed. Sending you lots of love and kindness x

EJ Thank you for your lovely message. I think I might have finally sorted the photo probs. Please feel free to try again - he is rather lush, but then I am extremely biased. You are completely right, sometimes I think the uncertainty is worse than a terrible diagnosis (only sometimes, while there's uncertainty, there's always hope). Am trying to worry about tomorrow when tomorrow comes - hence we have a million smiley photos of the little lad!

aww just had a look at yr picture vicsta. He is gorgeous

I know this is old now but my dd had this, got diagnosed with PHHI, does that ring any bells?

Never come accross anyone before who has even heard of it! Looked on here at the time but nothing, something made me look again recently and I found this.

Your ds looks like a very cute smiley boy

Hello Lowsugartoo,
Its me, vicsta, original poster! Yes, we are a rare breed aren't we (thank God). It is very difficult, I've only found one other person with the same problems and we are in regular e-mail contact now, which is lovely. Her daughter is a teenager now so it is a comfort to be able to ask questions to someone who knows the answer. not that I haven't had a lot of help from the ladies on this board too.
How old is your DD?
I haven't heard of PHHI (yet ) but Gabe is being treated (as a working hypothesis, I don't think we'll ever really know) for 'possible adrenal insufficiency possibly caused by immaturity of the pituitary adrenal axis'. So, no sitting on fences there then!
He is doing very well at the moment, despite a recent reflux problem (not so smiley right now!) Last week he had a controlled 8 hour fast which went well, he maintained his blood sugar throughout and even went as high as 6.4 at the end due to a massive strop when they had to get lots of blood for testing. They couldn't get a canular in, so had to try and get enough out with butterfly needles, poor baby. We'll have the results of those blood tests in a fortnight or so and I am hopeful he can then come off his medication and be allowed to demand feed.
It was a surprise to see this thread resurrected this morning. A nice one, but sad too that someone else has had to suffer as Gabe has. Its somehow comforting and frustrating at the same time to be dealing with such a (thankfully) rare condition.
I hope you are still about and can find me on my new name. It would be nice to hear your experiences if you want to share xxx

Hey there, just found this thread while searching for info on hypoglycaemic brain damage. My 9 week old DD also had severe hypoglycaemia shortly after her birth. She was an IUGR baby (intrauterine growth retardation - she stopped growing at 28 weeks).

We have been given no real indication as to what the future holds - her paediatrician said it was too early to say how she had been affected. I put all thoughts of this to the back of my mind somehow and just enjoyed her for the past few weeks but we have her 8 week check tomorrow and I am dreading it.

feelingbitbetter - hope your DS is continuing to do well

I think feelingbitbetter is unwell herself so I don't think she will see this. Just wanted to let you know so you didn;t think you were being ignored. I can't help I'm afraid, but I do know that no doctor can really tell you what the future holds for your DC, for me that is simultaneously the most difficult and the best thing about it all. Sorry that's not much help!

Thank you Hairy! I think it will be a while before I come to terms with that uncertainty and adjust to motherhood! I've been frantically reading up on hypoglycaemia and the neonatal brain. There are just too many variables for any useful conclusions to be drawn. And, anyway, there is no real way to prepare.

For now, I just wish I could meet other mothers without seeing the dismay in their faces as they look at my DD and promptly ask what happened "was she early then...?"