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
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Sleeping at night when baby has prolonged seizures. Advice?
Proudmummy9183 · 09/11/2017 08:03
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