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Sleeping at night when baby has prolonged seizures. Advice?

(22 Posts)
Proudmummy9183 Thu 09-Nov-17 08:03:10

So my 5 month old baby boy has just, in the last few weeks, been diagnosed with epilepsy. He's has had 4 prolonged seizures, all lasting over 20 minutes, and the worst one just a couple of days ago which was 45 minutes long. He has started keppra about month ago and this has now been increased, and has just changed from rectal diazepam to buccal midazolam as he has not really responded to the diazepam. All seizures have presented with a loss of responsivesness, jerking of arms and legs, and in a couple of the episodes he has not been able to maintain his airway. It's been devastating but on a positive note he has been developing well and meeting his milestones.

So, since the first seizure, I have co slept in bed with my son. I keep him safe by not using a duvet or pillow, I keep him on the inside of the bed and I place him so he is actually lying above me, he sleeps in a baby sleep bag. It's worked for us and has meant we (dp and I) can get at least some sleep (dp does not sleep in the same bed as us). Our worry would be that should he have a seizure while in his cot, and we slept, would we wake up? He is so small and makes no noise during the seizure. So far there are no warning signs. We know that they are extremely prolonged and his airway has been compromised in the past. Up until yesterday everyone we have spoke to has said to just do what we feel is right for sleeping (I wake with every little movement he wakes). Anyway, yesterday a locum consultant who literally had just introduced herself to us and had only spent maybe 30 seconds scanning his notes asked about night time so I told her all of this, and she became very abrupt with me saying that "we will discuss this later! As she has seen too many parents roll over on to there babies!" She is still yet to actually come back. I now feel like rubbish. The one thing I felt I could do to keep him safe at night has now been trod all over without knowing any facts. Has anyone got any advice on what else we could do at night? We have tried staying awake in shifts but it Is not possible to do this for too long an extended time because we end up sleep deprived. dp works long days and I'm due back at work in jan. Any advice would be greatly appreciated! Thanks guys x

landofgiants Thu 09-Nov-17 09:59:28

I have no experience of epilepsy, but what you are doing sounds fine. When my DS was around 4 months I spoke with a breast feeding guru/specialist who explained that babies of this age were much more robust than a newborn. Her advice for safe co-sleeping included: keeping bedding out of the way; DP sleeping somewhere else (she was particularly keen on this) and obviously not drinking heavily etc.

Sounds to me that he is safer with you, and it is important for you to sleep too. Do not feel guilty.

zzzzz Thu 09-Nov-17 18:10:16

Lots of thoughts spring to mind but the first is to say the consultant is probably being abrupt because the funding for nighttime monitors is frankly difficult. (Nb my baby needed similar observation and it is gruelling we survived but it was awful)
I’m just going to google the place to check it’s still the same set up. On my phone and doing multiple bedtimes so might be a bit rambly.

zzzzz Thu 09-Nov-17 18:17:30

Ok these are the people
They provide alarms for under a cot mattress. I would push the cot up to the side of your bed, and have the monitor on and baby in the cot. Your consultant has to write a letter to them asking for funding. Tell her about it when she gets back.
Until then sleep in shifts and get a friend/nanny/relative in to watch the baby for a few hours every week day. This means you sleep two shifts (part of night and daytime top up). and the working partner sleeps one longer at night.
Apply for DLA. You may need to put offgoing back to work. Talk to someone about how this should be handled.

zzzzz Thu 09-Nov-17 18:25:21

Keep notes of when he’s admitted and when and how long his seizures are.
Be prepared for hard times coming but be hopeful. Early onset epilepsy as you are describing can be very difficult but some children come out the other side and are fine. Dd has had several prolonged stays in hospital and lost the use of one side for a bit and in a dreadful bit the ability to recognise mesad. It was nightmarish.
She is 10 now. Bright, beautiful, active, academically able, and she has been off medication for nearly a year. Sometimes I forget about epilepsy for bit.

I’m so sorry this is happening to you all.

JsOtherHalf Thu 09-Nov-17 20:48:11

Muir maxwell had a huge waiting list a while ago.

They are great for signposting the type of monitor you might need though.

Some councils can provide these alarms via care line scheme - it depends on the individual council.

Does your area have a sapphire nurse?

The New life charity has a helpline, and can fund various equipment if needed.

zzzzz Thu 09-Nov-17 21:32:45

Get on that list though. The time flies by and they are £££s

Disquieted1 Fri 10-Nov-17 00:45:07

To hell with waiting lists and writing to charities!
As there is a problem maintaining the airway, you need to force this. My daughter struggled to maintain her airway while in hospital for a gastric problem, had a respiratory arrest and is now brain damaged. There were TWO people asleep in the room at the time. A compromised airway is about as serious as it gets, though it is probably very unlikely that the same misfortune will befall you.

Take your child to the hospital and don't leave unless they give you a SATS monitor to take home. This is attached to a finger or toe and will alert you if there is a problem with the airway. The hospital will have plenty of spares.

All the best.

Proudmummy9183 Fri 10-Nov-17 02:35:08

Thank you so much for everyone's replies. It means a lot. You have all given me some really useful information and im going to look further into it. We are still in the early stages of diagnosis so this is all new to us and is just sinking in. Its a lot to get our heads around but ds is so brave and strong and despite such a big seizure he was still sitting up by himself and rolling over less than 6 hours after. Im just holding onto these positives just now as i stupidly spent a lot of time on google previously scaring myself.

zzzzz Fri 10-Nov-17 07:51:53

@Disquieted1 To hell with waiting lists and writing to charities!
As there is a problem maintaining the airway, you need to force this.

Just to be clear. This IS the NHS route to the equipment needed. No amount of “pushing” will get you a monitor any other way no matter how many you perceive are lying around in hospitals. The set up is (or to be more accurate WAS as dd is now 10), that the Trust is provided with a grant and then distributes monitors direct to parents and provides support choosing and setting up. The ONLY way to receive one is if your consultant puts you on the list. This isn’t anything like family fund for an iPad. Waiting lists however are long (9 months when we needed it). SUDEP is a real danger for these children and it is horrific that their parents are put in a position where 24/7 observation is provided entirely by them. It is what it is though and in our experience Consultants are just as appalled as anyone else by the reality.

OP the fact your boy has responded to some medication is a really great start. It can take time to find the right meds’ and is very much a suck-it-and-see exercise. Once you find one that can be seen to influence seizures it gives clues to what might be “your med”. For us I think we were on #8 before any improvement and 57 days in to seizures many many times a day in hospital mostly in HDU. Topimax was our saving drug and our “last try” before we moved on to Ketogenic diet. We switched to Keppra at her last relapse and it was magical for us. Quickly loaded (ie you can stick it in a drip and get up to therapeutic levels fast) and little or no side effects for us (dd learns fast on it). Try not to panic. I know you must be so very tired and frightened. There are others on the board who have been where you are, and we all know how very difficult it is. Post if you have questions or just need a handhold.
Has he had mri/lumber/muscle biopsy?

Proudmummy9183 Fri 10-Nov-17 08:45:11

zzzzz it sounds like you had quite a horrific journey but its such a comfort to hear how well your daughter is doing. Its so hard to watch him have a seizure. So far they have all been through the day but the fear that it could happen at night is very much there. A problem i have is that people around us dont seem to educate themselves. Im often left to feel as though im just a paranoid mum when i express my fears e.g SUDEP, brain damage, respiratory arrest among the many, the length of his seizures are frightening. I am trying so hard to stay positive for my wee boy but find having little people to speak to about these things difficult. Ive been a lurker on mumsnet for a while, enjoying reading rather than posting but a nurse at the hospital suggested here for advice from other parents. Im glad she did. Thank you. X

zzzzz Fri 10-Nov-17 11:06:01

You aren’t paranoid and your babies epilepsy is serious. I have/had this problem too. Early onset (before 12 months) and prolonged hard to control seizures are serious. I think people get muddled between that sort of epilepsy and managed seizures which are a totally different ball game. They also don’t want to frighten you, but I find plain talking easier.

A good fact to know is that 50% of children grow out of it regardless of how serious it is. It’s something to hold on to in darker moments.

Once you find meds’ that work and keep working the whole thing changes. So long as you take them regularly and don’t get sick/upset tummy, it’s all relatively manageable.

Checklist Fri 10-Nov-17 11:33:31

Parents should not have to watch over their children 24/7, where its a life threatening condition, so I suggest you:

1. ask children's social services for an assessment of need under the Children's Act 1989 - because your DS is at "critical risk", one of the criteria for assessment and getting social care

2. read "Working together to safeguard children" - this is the guidelines for social services on the assessment of need for disabled children. (Children's social services have two functions - everybody knows they do child protection; but less well known is that their other arm is Children with Disabilities Teams, to provide care and support to a disabled child and their family. Unfortunately, the government saw fit to mix up the guidelines for disabled children with those for child protection, so you have to ignore all the stuff about child protection.)

3. once the assessment of need is underway by the Children with Disabilities Team at Children's Services, ask them for an assessment for continuing care for children by your local CCG. (This is where the care needs arise from a primary health condition, and obviously severe epilepsy is one - the child's care is then funded by the NHS not Social Services. It won't matter to you really which one provides the care, but one would hope that the CCG would have more understanding of complex, health conditions.)

4. read "The National Framework for Children and Young People's Continuing Care", the guidelines for CCGs on how to do the assessment.

There is a Decision Checklist, which they use to make a decision on whether a child or young person meets the criteria for continuing care - there are 10 domains of need.

The guidance says at S 148

"A child is likely to have continuing care needs if assessed as having a severe or priority level of need in at least one domain of care, or a high level of need in three domains of care."

In DC's case, this is going to be the one for seizures - looking at them, if I were you, I would argue that his needs come under severe, seeing as they are life threatening! Also see Annexe A for life threatening conditions.

Children and young people with severe, poorly controlled epilepsy can have a carer at night to watch over them, so their parents can get some sleep. DD got carers from social services under 18, but we now get continuing health care for DD (as she is over 18), and I know another parent, who got continuing care for DS under 18, both for uncontrolled seizures at night, with a high risk of SUDEP. We were offered carers at night to watch over her, while we slept, which we did not want but she had carers in the daytime, so I could catch up on sleep if I wanted. The other family got a carer all night for three nights a week, and one night overnight, plus one weekend a month respite at a specialist medical centre, run by the CCG, while he was in a school with a nurse onsite.

The CCG now funds a specialist epilepsy residential placement for both DD and the other DS, where there is an audio/video monitor in their bedroom, linked to a computer in the office, watched by night staff all night, and I think they use a mattress alarm, plus they physically check on them at regular intervals through the night.

Consultants don't like parents telling them what their professional opinion is, but next time, you see the consultant neurologist, ask them nicely to put in writing about DS' seizures, the risks of what can happen and what care DS needs, in their professional opinion, whatever it is. Nurse assessors at the CCG, or social workers at Social Services are not qualified to ignore what consultant neurologists say!

zzzzz Fri 10-Nov-17 12:39:35

I’ll be honest checklist that would have been WAY beyond my capabilities with a high needs 5 month old baby. shock

Checklist Fri 10-Nov-17 13:39:11

I would just write to the Chief Executive of the LA and ask for the assessment of need for DS, spelling out that I believed DS was at risk of dying due to....Then ask about Continuing Care Assessment once that is underway. The reading can wait, although it does help to give you the right phrases if they try to wriggle out of their statutory responsibilities, or try to argue that the other service is responsible for DS.

I hope the OP finds the right medication for DS and achieves control; or DS grows out of it. However, its like everything in SEN imo, effort now though hard, saves even more stress, lack of sleep, etc further down the line!

Its not a competition with OP, but a young person with complex learning disabilities and severe epilepsy, ime has just as high needs as a baby! The only difference is that they are bigger!

zzzzz Fri 10-Nov-17 15:02:33

The difference really is that OP is in a crisis situation rather than a longer term one. If her experience is anything like my own she had a happy bouncing baby one day and then fell down a rabbit hole. OPs Drs will be well aware of the situation her family find themselves in. I think the whole writing of letters and quoting of rights may be valid but would have tipped me into gibbering wreck.

While I think of it OP one thing that did really help me, was training in resuscitation for babies by the hospital.

Do you have open access to A&e? (A letter that wafts you through triage). Do you know exactly when to call an ambulance? Once all these things are written down you can relax in a way.

Proudmummy9183 Fri 10-Nov-17 20:26:34

Our situation is pretty much as you've said zzzzz. This came on really suddenly just short of 2 months ago and has been a total shock.

Im grateful for the advice Checklist but at this point i dont think carers are appropriate for us. But thank you, it is useful information.

We have family who are able to support us which is great and i plan on speaking to the epilepsy nurse on Monday regarding the sensor mats as we already have a meeting planned for then. With regards to resuscition my family and i were trained just a couple of weeks ago. We also have a seizure protocol in place and due to the nature of ds seizures we are to call an ambulance immediately and give rescue meds straight away too.

Sorry its taking me so long to reply.

Miloarmadillo1 Sat 11-Nov-17 11:49:49

HI. I just wanted to send you a ((hug)) because all this is so hard. My daughter was diagnosed with infantile spasms at 7m old and we had the same feeling of falling down a hole - totally normal one day, catastrophic epilepsy and very poor prognosis the next. She did not have seizures that affected her breathing, but we had her in a bedside cot for a very long time after her diagnosis. I'm now admin of a group for children with her condition, I will see if there are any recommendations of seizure monitors from parents on there.

Miloarmadillo1 Sat 11-Nov-17 21:16:34

This pulse ox was recommended, and is available via the Daisy Garland charity.

Checklist Sun 12-Nov-17 07:55:42

zzzz - I can assure you we were in a crisis situation with DD vomiting during seizures, upto 8 tonic clonics a night, 3 - 4 a day, plus drop attacks and regularly going into status with up to 150 complex, partials...leading to 999 calls. None of the family got any sleep because DD made a noise like a donkey braying in a tc! DD 2 was in the final year of her A levels and suicidal three times! DH lost 50% of his income because he could not work. Meanwhile, I was fighting the LEA over the school placement, Social Services to try and get some overnight respite and CAMHS to get counselling for DD1 who told me everyday her life was hell and she wanted to die! (while telling DD2 she wanted her dead).

Five years down the line, DD2 has been suicidal 22 times, DH has significant coronary heart disease, facing a triple bypass and I had a breakdown where the police threatened me with a S 136 - while we spent 10 months this year dealing with a S 42 investigation into her last residential placement, and fighting the CCG for what her consultant neurologist said she needed, as residential care at approx £3,500 per week!

Checklist Sun 12-Nov-17 08:03:32

I have to say she does not vomit during seizures most of the time now, but she is assessed by the CCG as needing 2:1 care, and she saw 4 careworkers off in tears due to her verbal abuse towards them for 8 hours a day for weeks! She has to go somewhere, where the care staff get input from clinical psychologists, speech therapists and OTs on how to handle her!

zzzzz Sun 12-Nov-17 08:08:12

I’m sorry checklist I really wasn’t trying to minimise your experience and I’m so sorry if it came across that way. Perhaps “acute” might have been a better word? Either way I didn’t mean to be hurtful it sounds like you have and are living through enormous challenges.

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