Ecoli/HUS Any experience?

[MrsPHollywood]

My DS was diagnosed with Ecoli / HUS at 15 months old. He had kidney dialysis for 16 days. He made a good recovery, but it was slow - it probably took about a year for everything to get back to near normal. His blood pressure was raised a bit and he was prescribed enalapril (at 5 years old)which he has been taking since.

He is now a tall,strapping 15 year old. His general health is excellent, but he continues with his enalapril.

Does anyone else have any experience of this? How are your DC years later? There's not a lot of info/statistics about long term prognosis. I was made aware at the time of his illness that he may have problems when he's older.

Bump

Yes, though we are not so far down the line as you. Our DS was diagnosed with HUS at 10.5 months. A month in PICU, nearly 2 weeks of peritoneal dialysis, several blood transfusions and 3 days of ventilation for a collapsed lung later, he was finally discharged from hospital 2 days before his first birthday.

This was just over two years ago. During that time we have progressed from weekly to now just annual urine & bp tests. Despite scares at both the 1 year and 2 year checks (abnormal rbc, then proteinuria), on repeat testing both annual tests came back clear. He's been given the all-clear by his consultant (who was clear from the outset that once the acute phase was over and the kidneys recover, there should be little risk of ongoing problems) though we will continue to do annual checks for the next few years at least.

He has had some other issues with hearing/speech delay that developed a few months after being discharged from hospital though that the doctors think these may have been linked to the collapsed lung, ventilation and regular chest infections that he suffered from in the six months or so afterwards. But other than that he is a healthy, naughty, wonderful 3 year old, just like all his peers, other than the two large battle scars on his abdomen...

The experience was indescribably horrific and continues to haunt us daily. I am so sorry you went through it too. A poster called Pamina has a daughter who suffered from HUS a few years - I have no idea if she is still around, but her posts brought me much needed hope in those darkest of days.

isitwakeuptimeyet many thanks for your post. Yes, at the time it was truly horrific but I'm glad to hear that your DS is doing well. DS is also on annual check-ups and thankfully there is currently no cause for concern.

I don't think the whole experience really leaves you. I like to think I worry about the little things a bit less!

Thanks for replying (I think it's a bit of a niche topic!). I'm really pleased to hear your DS is doing so well too.

As you note, research into long term prognosis etc is fairly limited (in part because there are so few cases to follow), but DS's consultant has been clear and insistent from the outset that the risks of any long term issues are very very low once a good recovery has been made, and especially for infants whose bodies & kidneys are still developing (despite which I still descend into blind panic at the sight of any out of range indicator on the urinalysis reports...) Do you have any sense of how long your DS will continue the annual testing for?

I agree with you about the little things. Though ironically the whole experience has left me completely paranoid about statistical (im)probability (and particularly about being struck by lightning)...!

We were told that DS would have annual checks until he was in his mid to late teens. Puberty can put the kidneys under extra strain and any problems would be likely to appear around then, but so far, so good. We go back next month actually. I think I maybe get a little anxious at this time of year!

I'm not surprised you are anxious. I'm sure it will all be absolutely fine from what you have said, but will think of you and wish you all the best nonetheless!

Wow this is a very old thread - I guess your children are now a teenager/adult now. I'm currently in the hospital with my daughter who has STEC-HUS. We've been here nearly 3 weeks. I can't find much about it online, or people's stories who've gone through it. I doubt either of you will see this but reading this thread has given me a bit of hope for the long journey ot feels like we have ahead. Thank you!