Hi everyone
I’m not sure how this site works so please be patient with me.
My daughter was diagnosed with ADEM on Friday 19th October. She was admitted to hospital on Friday 5th October after being sent home from school. She had blurred vision (for a few minutes), her head was hurting and she vomited. A week before this she had had tonsillitis but didn’t take antibiotics as it wasn’t infected. Whilst at the hospital her only problem was headache and tummy ache. They did a full neuro exam (found nothing) and because I have chiari malformation they referred her for an MRI. Fast forward two weeks and we have been told that her MRI showed lots of bright patches in her white matter. The doctor said it was so bad that she is baffled by her lack of symptoms. I got a text book brief explanation of ADEM and we have spent the last four days in and out of the hospital for steroid treatment. Now my daughter is home and we are waiting for somebody to get in touch. I overheard a doctor talking about an abnormality with her right eye and ? Cortex damage. When I ask questions they tell me they can’t answer as they don’t know about the condition. My daughters treatment at the hospital was pretty bad too. She’s only eight and they were pretty mean. They are in touch with another hospital (specialist children’s hospital) and keep going back to them to relay information to us. In the meantime we are waiting for answers and my daughter is receiving no treatment. She looks very sick and I don’t know what to do.
Any help/advice would be greatly appreciated.
Chiarime -
I'm sorry to hear about your daughter's condition. ADEM is really rare so it's not surprising that your hospital had never seen a case before. Out of curiosity were you able to get your daughter to a children's hospital? They tend to not be as "mean" as you said your current hospital is. My advice would be to get to a hospital that has treated ADEM before, rather than stick with your current hospital that is just relaying info from another hospital. I would ask your doctors about treatment with IVIG as my son had success with that treatment course. I also found with my son that physical therapy really helped him regain mobility so I would suggest that for your daughter as soon as you are able. Good luck with everything.
Best,
Ken
I’m sorry to hear that you haven’t had an easy time with treatment. I know how scary it can be, my son had ADEM 6 times. It’s sort of a routine for us by now. Your daughter needs to be seen and followed by a pediatric neurologist. My son had akways received steroid treatment in the hospital and then went home on an oral dose to take for several months to continue treatment. Obviously I can’t state that as"magic" treatment because of the number of relapses he has had, but I can’t imagine it’s good to go home without further anti inflammatories. I hope she recovers well, if you have any questions, I’d be glad to help. 
My daughter was diagnosed in Sept of this year, so it is fairly new to us too. We were in a Childrens Hospital in Buffalo NY and we were diagnosed within 3 days with treatment of IVIG right away. We were very lucky that the doctors that saw her had seen this before.
Like everyone else has said, I would attempt to get her to a childrens hospital and to see a pediatric neurologist. Good luck and we'll be praying.
Getting her to a referral childrens hospital is a good idea. There should be neurologists there who are familiar with ADEM. I'm not advocating this, but did she get a brain biopsy? Sometimes this is done to exclude malignancy. If the answer is yes or maybe, please contact me. I might be able to help. Best wishes.
wonderful post Chiarime. I see that a lot of people are already reaching out with advice and support. really wonderful.
Hi Ken E
Many thanks for your reply. We do have a childrens hospital about an hour away which our own hospital was consulting with. They decided it would be easier for us to go to our own hospital and the two hospitals would communicate with each other. The problem is that the communication takes ages and I only get told some of what is said. We are going to ring the hospital today and asked to be reffered to the childrens hospital. Will update when I know more.
Thanks again
Kerry
Ken E. said:
Chiarime -
I'm sorry to hear about your daughter's condition. ADEM is really rare so it's not surprising that your hospital had never seen a case before. Out of curiosity were you able to get your daughter to a children's hospital? They tend to not be as "mean" as you said your current hospital is. My advice would be to get to a hospital that has treated ADEM before, rather than stick with your current hospital that is just relaying info from another hospital. I would ask your doctors about treatment with IVIG as my son had success with that treatment course. I also found with my son that physical therapy really helped him regain mobility so I would suggest that for your daughter as soon as you are able. Good luck with everything.
Best,
Ken
Hi
My daughter was in a childrens unit but not a childrens hospital. All the doctors we have seen have been paediatric doctors but I don't think we have seen a neurologist. When speaking to the hospital this morning. the nurse said she should have taken some oral steroids home but then couldn't tell us any more. We are waiting to speak to the doctor who 'knows the condition' later today.
Dylansmom said:
I'm sorry to hear that you haven't had an easy time with treatment. I know how scary it can be, my son had ADEM 6 times. It's sort of a routine for us by now. Your daughter needs to be seen and followed by a pediatric neurologist. My son had akways received steroid treatment in the hospital and then went home on an oral dose to take for several months to continue treatment. Obviously I can't state that as"magic" treatment because of the number of relapses he has had, but I can't imagine it's good to go home without further anti inflammatories. I hope she recovers well, if you have any questions, I'd be glad to help. :)
Hi Sandra
Thanks for the prayers. We can't understand why we didn't get sent to the childrens hospital. Its only an hour away and I would travel to the ends of the earth and back just to make her better. Unfortunately 'they' decided that we would be better off aqt our own hospital. We will be speaking to a doctor who knows the condition this evening.
Kerry
Sandra said:
My daughter was diagnosed in Sept of this year, so it is fairly new to us too. We were in a Childrens Hospital in Buffalo NY and we were diagnosed within 3 days with treatment of IVIG right away. We were very lucky that the doctors that saw her had seen this before.
Like everyone else has said, I would attempt to get her to a childrens hospital and to see a pediatric neurologist. Good luck and we'll be praying.
I don't know anything about a brain biopsy. What does that involve? We were told that the scan had lots of bright patches and she had ADEM. They've not mentioned any other tests and I don't think they're doing another MRI. I will post later after we've spoken to the doctor.
JDK said:
Getting her to a referral childrens hospital is a good idea. There should be neurologists there who are familiar with ADEM. I'm not advocating this, but did she get a brain biopsy? Sometimes this is done to exclude malignancy. If the answer is yes or maybe, please contact me. I might be able to help. Best wishes.
Thanks Scott. When I was diagnosed with Chiari it was a support site that got me through it all. Without these places people can feel very lonely and scared. I'm overwhelmed by the replies and hope that I can help people as much as they help me.
Scott Orn said:
wonderful post Chiarime. I see that a lot of people are already reaching out with advice and support. really wonderful.
hi Chiarime, this is a relatively new support site. here is what our Chiari site looks like (1,500+ members). Feel free to join: www.chiarisupport.org
Hi all
Just an update. The doctor we have spoken to has treated three children with ADEM. They all had a three day course of IV steroids like my daughter and no other medication. He believes my daughter shouldn’t need it as none of these other kids did. There is to be no follow up MRI as he said it won’t show anything. My daughter will recover in her own time, she needs to take it easy and not be rushed into anything. We have an appointment with this doctor on 8th November when we will see her scan for ourselves and go through the report with him. In the meantime we have to closely observe Megan for any changes in mental/physical abilities. I’m not exactly sure what we should be looking for but I’m pretty sure that I will be slightly neurotic and have her at the doctors surgery for everything I think is a bit strange.
A few questions
As we are in The UK and don’t pay for our healthcare does anybody think it would be worth us paying for a private MRI just to put our minds at rest?
What should I look out for that relates to ADEM?
Is it normal to be sleepy? Is that a recovery thing or something I should be wary of? Megan is sleeping for 15 hours.
Hi Chiarime -
I'm glad it sounds like things may be looking up for you and your family. I have a couple of thoughts and mind you these are just thoughts.
1) When my son had ADEM he was very tired and week during his recovery. We were told this was normal. He also sweated profusely - especially during sleep - so that may be something to look out for or it may have been specific to my son. While I think it's normal to be sleepy 15 hours does sound like a lot. Not to sound unnecessary alarm but one of my son's primary symptoms was lots of sleep - more like 18-20 hours - so it may be worth monitoring her sleep. Over time my son had more energy and required less rest but he was definitely more sleepy post ADEM for about 5 weeks and even now he is still more easily tired. For instance he requires a nap each day while his twin brother is starting to move more towards napping only half the time. Sleep on it's own would not concern me but if you see a combination of excessive sleepiness with loss of appetite or decreased speech then I would call my doctor.
2) Our doctors suggested an MRI 9 months to 1 year post ADEM to make sure the whiteness had gone away. We are 16 months post treatment and have still not done the MRI because I don't want to put my son under general anesthesia (he is deadly scared for doctors now) and he appears to be back to normal. Anytime he gets a cold we worry to death that something is coming but for now we're comfortable not getting a repeat MRI. I think doing one this close to your daughters episode would be too close to be useful. Ask your doctor if 9 months to a year would make more sense.
3) Depending on your daughter's needs I would recommend physical therapy. I know not everyone needs PT or has access to PT but it really sped up the recovery time for my son and frankly I don't think we could have gotten him to where he needed to be without PT.
Best of luck and keep us posted!
Ken
Chiarime - I'm curious to know how the Nov 8th appointment went and how your daughter is doing now? Is she still as sleepy as before? I do know that my son was tired and sleepy post treatment for ADEM but 15 hours sounds more like his symptoms pre-diagnosis not post. I hope all is going well with your daughter. Ken
Chiarime said:
Hi all
Just an update. The doctor we have spoken to has treated three children with ADEM. They all had a three day course of IV steroids like my daughter and no other medication. He believes my daughter shouldn't need it as none of these other kids did. There is to be no follow up MRI as he said it won't show anything. My daughter will recover in her own time, she needs to take it easy and not be rushed into anything. We have an appointment with this doctor on 8th November when we will see her scan for ourselves and go through the report with him. In the meantime we have to closely observe Megan for any changes in mental/physical abilities. I'm not exactly sure what we should be looking for but I'm pretty sure that I will be slightly neurotic and have her at the doctors surgery for everything I think is a bit strange.
A few questions
As we are in The UK and don't pay for our healthcare does anybody think it would be worth us paying for a private MRI just to put our minds at rest?
What should I look out for that relates to ADEM?
Is it normal to be sleepy? Is that a recovery thing or something I should be wary of? Megan is sleeping for 15 hours.
thanks so much for posting! stories like these with your daughter help a lot of people. I noticed that the post has been viewed 127 times as of this morning. there are a lot of people that read the site that don't necessarily post back, which is ok.
thanks for sharing chiarime! My best wishes and thoughts go to your daughter.
We did not have a follow up MRI until the 6 month mark. Thankfully all was clear on the scan at that point,
I believe we did 5 days of steroids at the hospital but then went home with 6 weeks of steroids given at home on a tapered dose.. If you have access to the internet there are some great web sites out there if you type in ADEM. I hope all is well with your daughter. I know you feel alone but your not now. I just found this site and I cried when i logged in. Its been 3 years since my son was in the hospital and I am still learning and looking for information.
Hi,
I want to start by saying YOU have to be your child's best advocate. We were in a major city's childrens' hospital and NO one there had even heard of ADEM. We ended up at another hospital very well known for neurological issues and of the peds neurologists working there, only one had ever dealt with ADEM.
When my daughter got out of inpatient rehab, she slept and went to outpatient rehab. Loud noises and crowds bothered her. We weren't even allowed to have the TV on loud. In Feb. (4 months from initial symptom), she went back to school and her afternoon was spent sleeping in the nurse's office for a 2 hour nap.
I think each person displays different symptoms so I would suggest just looking for what used to be and watch for any new symptoms. My daughter's big issues were walking, academics/memory(couldn't remember her middle name) and personality changes.
Best of luck!
Well said ADEMMom
ADEMMom said:
Hi,
I want to start by saying YOU have to be your child's best advocate. We were in a major city's childrens' hospital and NO one there had even heard of ADEM. We ended up at another hospital very well known for neurological issues and of the peds neurologists working there, only one had ever dealt with ADEM.
When my daughter got out of inpatient rehab, she slept and went to outpatient rehab. Loud noises and crowds bothered her. We weren't even allowed to have the TV on loud. In Feb. (4 months from initial symptom), she went back to school and her afternoon was spent sleeping in the nurse's office for a 2 hour nap.
I think each person displays different symptoms so I would suggest just looking for what used to be and watch for any new symptoms. My daughter's big issues were walking, academics/memory(couldn't remember her middle name) and personality changes.
Best of luck!
Chiarmie,
How is your daughter? Please give us an update.