Headaches post ADEM

My 3 year old son is in month 17 of recovery from ADEM, which paralysed him from the neck down, he is making progress albeit slow but he can use his arms, crawl & stand with support. He is able to step around 20 metres with use of a frame. He has been having private physio rehab which is bringing him on. He’s off all meds but still has Botox injections into leg muscles… But he complains a lot about headaches, he’s 3 so it’s difficult to understand his pain & why he’s having them so often. He had a headache for over a month at one point Yet no one seems to have answers, neurology put it down to dehydration but he’s drinking plenty fluids… Feel like a neurotic mum but just want help for him or someone to believe us… Last neurologist said it’s common for children to suffer headaches… Surely not for that long though!!!

Does anyone else suffer post ADEM headaches & do you have any answers as to why?

Many thanks

My son is now 7, and is about one and half year out. He gets headaches about twice a month and we have to calm him dowm and I do a little menthol cream on his forehead, and we distract him.

My little girl (3) developed adem just over a year ago and is still suffering with head pains in one particular spot behind her right ear. I did think she was starting to make it up to get a reaction from me, but its exactly the spot which first alerted me that something was wrong (she wouldn’t remember that now).

I’m very interested in what response you all get from your Healthcare professionals, as since she had an ‘improved’ mri scan, we’ve been left to just deal with any remaining fallout, restricted sight for example and what I believe, changed behaviour.

I really think we should have some follow up.

The headaches are real, and pain behind and or in the ear is where mine are as well. I take my migraine medicine Maxalt when I get them. It works so well and gets rid of the headache, not sure if children can take it, but you should ask. I got ADEM from the flu shot last fall, and spent a night in the hospital for an allergic reaction. Did the mri and found the lesions in March, and I still have at least a few headaches per week. No one has really explained it, but I also take preventative medicine at night for migraines as well. Hope your kids feel better. I cant imagine not being able to explain what is wrong at that age.

hello, i want to ask you because your children as my son, he is 2 years and half . i dont know ,but he he is suffering mentally very much after adem since 6 months . he can't think right or understand us easily. crying a lot ,talking to himself and repeating the words.forget easily. the doctors said that the adem mentally affected him. does anyone go through this before in his child and is there any medicine will help him in this case thanks

Sorry for delay in reply it’s been a busy few months… And thank you for sharing your stories. Frankie’s headaches seem to have improved and I think this was a result of coming off his gabapenton! He still gets a headache if he is fatigued but has generally improved. NewbyAdem I am sorry to hear your daughter too has suffered from ADEM, I too thought my son was making it up, or wanting attention…thought I was going mad!!! But I believe the headaches are very real and shouldn’t be ignored!!! Keep on at your professionals till someone listens!!!
Encas … I am also sorry to hear about your son. ADEM is truly awful and for children so young. When Frankie had limited speech it was really difficult to understand his pain/frustrations but he has developed normally in this area and so he is now able to tell us. He doesn’t seem to be affected mentally, he is actually really happy and his mobility issues don’t seem to get him down which makes life a lot easier. I cannot imagine how painful it must be for you as parents to see him affected mentally by ADEM. Hopefully time & healing of the brain will help him recover and get over this. Time seems to be a great healer, when I think back to last year and where we are now it’s amazing, he has a long way to go but with time & therapy we hope to get there.
We still have struggles, ups & downs… And there sometimes never seems to be an end in sight but we take each day at a time and give Frankie goals to achieve… He is now managing around 50 metres in a walking frame!!
Flu Shot Adem, thank you for sharing, and sorry to hear you suffered ADEM after a flu shot!!! Frankie is due to have his flu shot soon and I’m petrified but was told by his neurologist that flu would be worse for him!!! What are you being told re flu shot now that you suffered ADEM? So confused !!!
Sending love to you all & wish you all well in your recoveries

Love Nicola x