5 Answers

My 11 month old was diagnosed last month with Epilepsy, atonic seizures and was put on Keppra. We have had to up the dose twice, it seems to be working now……we are now waiting for an MRI to see if there are any structural issues with her brain. Anyone else in this situation. She also has Sandifers Syndrome and is on medication for that, thankfully she will grow out of that, just not sure about the epilepsy. How do you handle it? Are there any helpful tips that the doctors or neurologists didn’t give you?

Posted anonymously, 11th December 2014

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  • I now have a great nephew, only just turned 3, who has bad epilepsy. He usually ends up in hospital after a seizure. His mum has been given a list of things to avoid, its huge and includes so many every day activities. I think it’s all a matter of working out tge best combination of drugs, which sometimes takes time

  • I have a nephew who has epilepsy. It’s so frightening when he has a seizure! He has hurt himself really badly due to seizures. He’s had one whilst showering, banged his head up,pretty bad and ended up in hospital. Also one in the street and he woke from that seizure thinking someone had mugged him, he was so battered and bruised

  • I don’t have a child with it but have had friends and brother in law with it, They seem to live a perfectly fine life with it, most their medication keeps it mostly under control, my brother in law has a severe type of epilepsy and even with medication he has fits, generally he cant remember 10 minutes beforehand and goes strait to sleep after. Probably non of this is of any help but I wish you the best of luck. Im sure she will be one of the many who the medication is able to control it.

  • Is it possible that there is a connection between Sandifers Syndrome and Epilepsy ? I confess I have no knowledge of Sandifers Syndrome nor can I find it in either Medical Guide I have. Some medications can have the side effects of Epilepsy. Unfortunately your baby will have to be at least sedated to ensure she doesn’t move at all. The standard machines are …very…noisy. I am talking from experience. It is a shame they didn’t do the MRI earlier but they may have decided to try to stabilise her condition first. I have heard of babies being born with Epilepsy. Could she have developed it during your pregnancy if she at some point went up against your ribs? I know a Mum whose baby did that, her Ob. managed to move the baby down and she was warned that the baby could have brain damage When born the baby had a line across her head between both ears but is OK. Your baby could have and inner ear infection. I know of 2 children (one was then a small baby) who had MRI and that was found to be at least part of the problem.
    One child was school age – old enough to tell her parents if she had an earache but when asked said no she had never had one. Unfortunately the inner ear cannot be seen via standard equipment. Have you been advised to protect her head? If she is gurgling, her saliva could be causing a blockage in her throat or going down into her lungs, or frothing at her mouth, put her in recovery position (not wait until she is conscious as some medicos say) and should be taken to hospital by Ambulance. Hopefully your neurologist should already have advised you about that. Unfortunately your baby isn’t old enough to know the symptoms before a seizure occurs to try to put herself in recovery position as it often helps with breathing. Some children may have had a head trauma as babies or toddlers. I know of one such case but she didn’t have regular seizures until she was 5 years old. In her case if she falls over and hurts herself she cries then sit up and get up and walk then collapse, having a bad seizure. Last time she had the presence of mind to immediately put herself into recovery position which was good as she frothed at her mouth Her EEGs and MRI both came back clear so her neurologist won’t give her medication at this stage even though she is now 8y.o. The one who developed it as a small baby also had what is known as “glue ear”. None of these theories may not apply in your baby’s case. These are just cases I know of. Epilepsy can be hereditary but Drs. are usually reluctant to use that theory. I know of a case where 2 cousins, a second cousin + her great niece all have epilepsy…One of them is controlled by medication provided she doesn’t suffer from another illness such as gastro or one that causes a high temperature…..I hope that your baby’s cause is found and that your’s baby’s medication is very helpful.

  • i haven’t had to deal with this. my heart goes out to you. stay strong mama! i hope it turns out ok! i hope that you find some comfort in other mum’s answers.

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