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Original poster

Measles and/or encephalitis: Advice & Support.

29 replies

MultipleMama · 16/04/2014 20:29

I feel like I'm sinking and DS4's health just seems to be endless.

DS4 (19w adj) has measles, which we were recently told, has develeped complications. He now has encephalitis too.

Anyone been in a similar situation that can offer some advice or support. I feel completely useless and the doctors have basically told us it's a wait and access the damage situation.

I've googled - couldn't help myself - and it's all mixed information. All information I could find is for children not infants, so I can find nothing to relate to beside symptoms. DS is very ill at the minute and I feel clueless and so uneducated.

OP posts:
sunshine1991 · 17/04/2014 11:32

Hey don't know much about his illness but didn't want to read in run let me tell u a story my mums got breast cancer ATM it dosnt look good but chemos and surgery has made it gone in to remission the doctors are speechless so my point is even when there's no hope somewhere there's someone or something looking after us all same with your little boy who btw what a brill name xx

Original poster
MultipleMama · 17/04/2014 13:04

Thank you, I'll take anyone stories of hope at the minute. Thank you for sharing and all the best to your mum xx

OP posts:
coldwater1 · 17/04/2014 17:46

I have no experience but i just wanted to wish you and your baby well.

Beanymonster · 17/04/2014 17:54

My mum got encephilitis aged 45, and it can be very severe or leave barely any noticeable effect..
I've been in your shoes..
Be strong! You can't do anything about the outcome, just be there to support your ds in the best way you can!
Feel free to pm me if you'd like

CoteDAzur · 17/04/2014 18:02

Has the doctor told you about Vitamin A supplements?

Vitamin A supplementation
The World Health Organization recommends vitamin A supplementation for all children diagnosed with measles, regardless of their country of residence, based on their age,[4] as follows:
Infants younger than 6 months: 50,000 IU/day PO for 2 doses
Age 6-11 months: 100,000 IU/day PO for 2 doses
Older than 1 year: 200,000 IU/day PO for 2 doses
Children with clinical signs of vitamin A deficiency : The first 2 doses as appropriate for age, then a third age-specific dose given 2-4 weeks later.

Needless to say, consult your DS's doctor and don't just feed him Vitamin A supplements. I don't know if it is indicated once encephalitis has developed.

CoteDAzur · 17/04/2014 18:02

(Clicked on "post" too soon) And good luck. Best wishes for your DS.

borninastorm · 17/04/2014 18:23

I'm sorry you're going through this, it must be incredibly difficult.

Is your son in hospital? If not, why not? I'm assuming he is because surely an infection of the brain requires him to be in hospital. If you are afraid and need more information don't hesitate to ask the doctors and nurses for more information and don't be afraid to ask them to repeat themselves and to take notes so you can read them back later.

My DD was hospitalised at 9 months old with a brain haemorrhage and an e-coli infection in the fluid that surrounds the brain. Her prognosis was bad for weeks and weeks - they didn't expect her to live.

But after 6 weeks, 3 brain surgeries and 2 blood transfusions she was sent home with a letter saying she was, quite simply, a miracle baby. The doctors at the time said they didn't know if she'd walk or if she'd talk because what she'd had was so rare.

She's now 15 and is happy and very healthy and expected to get all As in her GCSE's

When she was in hospital I pestered the doctors and nurses for information to help me understand what was going on. Sometimes they made me feel bad for constantly asking, but I needed to know and understand what was happening to MY child.

DO NOT hesistate to ask questions and push for answers. Don't rely on google unless its an official website like the encephalitis society.

I hope your DS recovers quickly.

Original poster
MultipleMama · 17/04/2014 19:07

Thank you for your replies.

DS is in hospital we took him when I woke to check on him and his fever was 41.5 and noticed a rash. He had a sezuire in the ambulance. He had lumbar puncture later that day that ruled out meningitis but told us the next day that something showed on the lumbar results, so they took him for MRI & EEG which confirmed the infection.

Though not everyone with the infection is hospitals they are basically told to go home rest and have plenty of fluids - from what I've read.

I do pester the doctors but they say they can't tell me anymore because they do not know what will happen nexts themselves. They have him on antivirals, anticonvultants and pain relief.

Thank you for your positive stories. I have nothing to do but sit and watch and wait and it's driving me crazy.

OP posts:
Friedbrain · 17/04/2014 22:08

The little boy I look after got measles and then developed this.

He was given a 50% chance of walking again, but he is absolutely fine now!!!

Sounds like you are in the right place, and I'm sure Ur baby will be ok x

CoteDAzur · 25/04/2014 00:28

How is your baby now, OP?

Original poster
MultipleMama · 25/04/2014 11:01

He's sedated and on the ventilator, the swelling hasn't been going down as much as they like and we had some desicions to make earlier this week so today he has more scans and if the swelling hasn't gone down they're going to try steroids (which we've tried to avoid as long as possible.)

OP posts:
Eyelet · 26/04/2014 22:06

Thinking of you and your DS, I can't pm you but my dd was cooled after a brain injury - it saved her life without question but was a frightening time for us -

I belong to a support group for cooled babies if you want to know more do get in touch. Don't want to overload you with information.

306235388 · 28/04/2014 21:24

Thinking of you.

My best friend had encephalitis as a 35 year old new mum. She was in a coma and on life support for a month and has some ongoing memory problems but is otherwise fine.

Martorana · 28/04/2014 21:28

Don't forget to mention vitamin A supplements.........

Theonlyoneiknow · 29/04/2014 20:50

Thinking of you OP and hope your DS is getting better x

Original poster
MultipleMama · 29/04/2014 22:03

DS is currently in an induced coma (he was having cooling treatment). They warmed him back all through Monday night/Tuesday morning so now they plan to "rouse" him tomorrow and then we wake for him to wake up.

Spoken with DS's neurophysiologist and neurologist this evening and they are pleased with how well he is responding to this method. They say the damage is permanent however he is young and his brain is still developing that his brain with accomadate and pick up the slack and other parts of his brain will take over. He will need physiotherapy for his left side and he may always have trouble in some aspects but they are optimistic that he can and will make a full recovery. We spoke to a pedeatric physiotherapist who deals with children like DS and talked us through our options. All of his care team are weary but optimistic. :)

I can admit with a lump in my throat we were very very close to losing him on Sunday, the situation was very dier and at one point a nurse asked us about last rites. So glad that I can now say, he's critical but on the mend but will remain in ICU until he's awake and then move him to HDU.

OP posts:
Original poster
MultipleMama · 29/04/2014 22:05

I meant Monday evening; x-posted this.

OP posts:
Original poster
MultipleMama · 29/04/2014 22:06

I meant Monday evening; x-posted this.

OP posts:
Eyelet · 29/04/2014 22:42

What a massive relief - our dd was cooled - did they mention neuroplasticity?

Oh I hope so much he is home soon with his twin and his family around him. Thabk you for the update you have all been in my thoughts x

Original poster
MultipleMama · 30/04/2014 00:49

Yes they did - I could never remember the term for it (too much info shoved in my head!) or I would have wrote that instead of an essay! Grin

They say it'll be 2-3 weeks before they'll consider letting him home. We still have no idea when his swallow reflex, head control etc will return.

OP posts:
Eyelet · 30/04/2014 20:02

Such a roller coaster, there is a Facebook page called Newborn Brain Cooling which has links to some great advice and support.

its a waiting game, is he on iv fluids still? Which hospital is he at (you don't obviously have to say!)? My daughter does have residual issues (mild cerebral palsy) but it could have been so very much worse.

will keep you in my thoughts x

Original poster
MultipleMama · 30/04/2014 20:28

Yea, he's still on fluids but they've recently stopped his antivirals, and he was given his last does of steroids yesterday morning. He's in a children's hospital which has an excellent neurology department - reason why ds was transferred here.

OP posts:
Eyelet · 30/04/2014 20:35

Long slow path to recovery, but I hope he does make a complete recovery, sounds like he is one heck of a fighter.

Quangle · 01/05/2014 14:53

good lord mama what an awful thing you've been through. No experience but just wanted to wish you and your little one well.

mrsnec · 01/05/2014 15:12

Hi, I was diagnosed with post infectious encephalitis about 18 months ago. I have some very minor after effects. The encephalitis society website was very helpful. It can be a very scary condition but it does vary a lot between individuals. My symptoms presented themselves similar to those of a minor stroke which is what doctors thought I had at first. I lost the movement in my left side but after steroid treatment and physio I was back to normal in a few weeks. The after effects for me were, mild anxiety, low tolerance of high temperatures and I get tired easily. I hope your son makes a full recovery soon too. Thinking of you.