Greta has regained almost all she lost due to ADEM, except for the things that aren't so obvious. She struggles with memory fluctuations. Sometimes she's on and sometimes the memory just isn't what it is supposed to be. She longs for comfort from things she has latched on to - things that make her happy and still feel like she is in control of her life and not ADEM. Sometimes she loves these things too much. Greta also gets upset easily. The biggest issue is when she makes up her mind to do something and someone tries to change that. Normally we could work things out. Now it's about 50/50 that she will be reasonable and work things out. The rest of the time, she goes into some sort of "you crossed the line and their is negotiating this" state.
One of her dear neighborhood friends said, I want Greta to be like she was before ADEM. We all do! I've tried to explain to the little girl that it is nothing personal, just things we are working on with Greta and trying to get her back to emotionally normal as soon as possible. In the meantime, how do we help these kids understand? Sometimes we don't even understand what is going on. It has been hard to see so many changes in Greta. She was a super reader and now only wants the comfort of picture books - struggling to force herself to read the required chapter books at school. It is very difficult to explain things to her and she demands explanations for everything! Sometimes we, as well as her friends, exhaust ourselves trying to explain something to her that everybody else got easily. Greta is also upset that her friends are treating her differently. What do we do? We can't turn back the clock. I suppose this is a true test of friendship - can you still love someone even when they change?
I kind of understand what Greta is feeling. I am 52 and had an ADEM 22 months ago. I used to be pretty quick on my feet but now I need people to explain things to me several times just to get a sense of what they are talking about. I would advise Greta to tell people, "slow down." Greta has nothing to be embarrassed by. It makes sense to me that she would latch on to things that bring comfort to her. I know that I do. Even if the comfort is only 10 minutes, to feel just for a moment like I did before the ADEM means a lot to me. So I would let her latch on to as many things as she can if you see that she's getting a momentary respite from how hard her world has become. I wish you and Greta all the best. I hope her world gets easier, and I'm sure it will.
All my best,
Barry
P.S. If it's not too personal, do you know what caused Greta's ADEM? In my case it was a reaction to the arthritis medication Enbrel.
Your words are very timely, thank you so much! Slow down is great advice. I'll try to help her explain this to her friends and I'll try to explain it to their parents. They know, but since so much seems "normal" on the outside, it is easy to forget. I'm so thankful Greta got her vision back. I'm so thankful for how quickly and completely her "physical" recovery has been. It is an answer to prayer. The cognitive and behavioral leftovers of ADEM are much harder to deal with because even we, her parents and siblings, sometimes forget because everything seems back to normal on the outside. Thanks again for your words of wisdom.
As far as what triggered ADEM? We're not 100% positive. Greta tested positive for mono at her local doc's office. In the myriad of tests run at Dallas Children's Medical Center, it came back negative for mono. Their best guess is that it was some sort of virus that is related to mono enough to trigger a mono spot at a doctor's office, but didn't test out with the full bloodwork at the hospital. Perhaps we'll never know the exact cause, but for most folks who are just curious, we go ahead and say she had mono and it triggered ADEM. At this point, I don't believe further investigation is needed. I don't want to put her through any more tests and it has been more than a year since her incident so it doesn't matter anyway. I'm content at this point to know it was just some sort of virus.
Sharon
bchap said:
Hello Greta's Mom,
I kind of understand what Greta is feeling. I am 52 and had an ADEM 22 months ago. I used to be pretty quick on my feet but now I need people to explain things to me several times just to get a sense of what they are talking about. I would advise Greta to tell people, "slow down." Greta has nothing to be embarrassed by. It makes sense to me that she would latch on to things that bring comfort to her. I know that I do. Even if the comfort is only 10 minutes, to feel just for a moment like I did before the ADEM means a lot to me. So I would let her latch on to as many things as she can if you see that she's getting a momentary respite from how hard her world has become. I wish you and Greta all the best. I hope her world gets easier, and I'm sure it will.
All my best,
Barry
P.S. If it's not too personal, do you know what caused Greta's ADEM? In my case it was a reaction to the arthritis medication Enbrel.
I'm glad to hear Greta is so much better. My wife was reading along with me and when you said it's easy to forget because so much seems normal, she said she feels that way with me all the time.
Best of luck,
Barry
Greta's Mom said:
Barry,
Your words are very timely, thank you so much! Slow down is great advice. I'll try to help her explain this to her friends and I'll try to explain it to their parents. They know, but since so much seems "normal" on the outside, it is easy to forget. I'm so thankful Greta got her vision back. I'm so thankful for how quickly and completely her "physical" recovery has been. It is an answer to prayer. The cognitive and behavioral leftovers of ADEM are much harder to deal with because even we, her parents and siblings, sometimes forget because everything seems back to normal on the outside. Thanks again for your words of wisdom.
As far as what triggered ADEM? We're not 100% positive. Greta tested positive for mono at her local doc's office. In the myriad of tests run at Dallas Children's Medical Center, it came back negative for mono. Their best guess is that it was some sort of virus that is related to mono enough to trigger a mono spot at a doctor's office, but didn't test out with the full bloodwork at the hospital. Perhaps we'll never know the exact cause, but for most folks who are just curious, we go ahead and say she had mono and it triggered ADEM. At this point, I don't believe further investigation is needed. I don't want to put her through any more tests and it has been more than a year since her incident so it doesn't matter anyway. I'm content at this point to know it was just some sort of virus.
Sharon
bchap said:
Hello Greta's Mom,
I kind of understand what Greta is feeling. I am 52 and had an ADEM 22 months ago. I used to be pretty quick on my feet but now I need people to explain things to me several times just to get a sense of what they are talking about. I would advise Greta to tell people, "slow down." Greta has nothing to be embarrassed by. It makes sense to me that she would latch on to things that bring comfort to her. I know that I do. Even if the comfort is only 10 minutes, to feel just for a moment like I did before the ADEM means a lot to me. So I would let her latch on to as many things as she can if you see that she's getting a momentary respite from how hard her world has become. I wish you and Greta all the best. I hope her world gets easier, and I'm sure it will.
All my best,
Barry
P.S. If it's not too personal, do you know what caused Greta's ADEM? In my case it was a reaction to the arthritis medication Enbrel.
I'm glad to hear Greta is so much better. My wife was reading along with me and when you said it's easy to forget because so much seems normal, she said she feels that way with me all the time.
Best of luck,
Barry
Greta's Mom said:
Barry,
Your words are very timely, thank you so much! Slow down is great advice. I'll try to help her explain this to her friends and I'll try to explain it to their parents. They know, but since so much seems "normal" on the outside, it is easy to forget. I'm so thankful Greta got her vision back. I'm so thankful for how quickly and completely her "physical" recovery has been. It is an answer to prayer. The cognitive and behavioral leftovers of ADEM are much harder to deal with because even we, her parents and siblings, sometimes forget because everything seems back to normal on the outside. Thanks again for your words of wisdom.
As far as what triggered ADEM? We're not 100% positive. Greta tested positive for mono at her local doc's office. In the myriad of tests run at Dallas Children's Medical Center, it came back negative for mono. Their best guess is that it was some sort of virus that is related to mono enough to trigger a mono spot at a doctor's office, but didn't test out with the full bloodwork at the hospital. Perhaps we'll never know the exact cause, but for most folks who are just curious, we go ahead and say she had mono and it triggered ADEM. At this point, I don't believe further investigation is needed. I don't want to put her through any more tests and it has been more than a year since her incident so it doesn't matter anyway. I'm content at this point to know it was just some sort of virus.
Sharon
bchap said:
Hello Greta's Mom,
I kind of understand what Greta is feeling. I am 52 and had an ADEM 22 months ago. I used to be pretty quick on my feet but now I need people to explain things to me several times just to get a sense of what they are talking about. I would advise Greta to tell people, "slow down." Greta has nothing to be embarrassed by. It makes sense to me that she would latch on to things that bring comfort to her. I know that I do. Even if the comfort is only 10 minutes, to feel just for a moment like I did before the ADEM means a lot to me. So I would let her latch on to as many things as she can if you see that she's getting a momentary respite from how hard her world has become. I wish you and Greta all the best. I hope her world gets easier, and I'm sure it will.
All my best,
Barry
P.S. If it's not too personal, do you know what caused Greta's ADEM? In my case it was a reaction to the arthritis medication Enbrel.
Do mind me asking what your initial symptoms were and how long has it taken to get better? I am 55 and developed ADEM in April. I am MUCH better compared to where I was, but still coping.
I had ADEM nearly 5 years ago at age 54. I am far better than I was, but on days like today, the pain is nearly incapacitating. My ataxia is nearly gone. My cognitive failures are minimal - I can no longer remember the names of up to 40 people in a classroom after one hearing - oh well. If there was just some way to curb the nerve pain along the 10th cranial nerve.
I attribute the cause to gluten intolerance which prevented absorption of most vitamins, leaving me with nearly no Vit D in my system by blood test three months before the onset.
The ataxia cleared itself up in 3 weeks, but what I am dealing with is in my hands. I lost almost all control of my hands. After a month I was put in the hospital and place on 4 1/2 days of IV cortisone. At that time, I couldn't even take the top of a water bottle. After 6 months I'm able to do almost everything, but I still have the uck feelings in my hands. I feel like I have heavy ski gloves on all the time or since my husband has always called me "Dolphin"...I have FLIPPERS.
Hi Greta’s mom,
My daughter (age 4) has such similar issues at school with her friends. She used to be welcomed to her classroom with open arms from all her friends. Now they don’t know how to interact with her because she is sometimes like her old self, but then like a flip of a switch, she is impulsive, irritable and down right mean. She goes from hugging everyone and telling them she loves them to crying because no one loves her. She is an emotional roller coaster. My daughter was also diagnosed with mono prior to the ADEM diagnosis and then later was told it was a false positive. Interesting coincidence. My daughter was diagnosed 6 months ago. How old is your daughter? Did your daughter have a neuropsychological evaluation? Our doctor in Texas and our local doctor in New Orleans recommended we have one. We get the results next week. We are also in play therapy to help with social interaction and behavior modification. I do feel that has given me some tools to help when she gets out of control. It is so frustrating when things look normal on the surface but you know your child and you know they are different now.
I had ADEM about 11 years ago and still trying to cope day to day.
I too recovered from most (not all) of the physical problems but I've been coming to realize that mentally/psychologically my recovery was not as good. I can only imagine how this would affect a child and the people around her.
Reading through this discussion I have to agree that the 'slow down' advice is like gold. Patience from the people around her is so much more important now. The way you describe her now brings a tear to my eyes because it pretty much describes how I feel/behave.
For me the key is for people to be there and listen when I desperately need company. Also, for people to leave me to myself when I need some space. I was never like this before. Still find it amazing how this has changed me. I often look at my life as 2 halves - Before and after ADEM.
As an adult it's obviously different because, for instance, when I get upset I can hide it better and hold back until I'm alone. As a child she has not had the chance to build up these kind of defenses and maybe holding back wouldn't be the way to go anyway...? Children (I have 2 young daughters or my own) should be able to show their emotions and upsets but when they are augmented by, in this case, ADEM, I can imagine it's more distressing for her and those around her.
Not sure I'm making as much sense as I am to myself but since ADEM I've learnt to just go with my feelings as best as I can. My wishes are with your daughter and family. I dearly hope she continues her recovery. Sounds like she has a lot of love around her already and that can only help I'm sure.
It sounds like we are sharing the same story. Thanks for your understanding and support. Greta is 10 and was diagnosed when she was 8. She has yet to return to her full reading capability. She can read anything! She just doesn't want to. One of her friends actually told her that she wishes things were like they were before ADEM. Honey don't we all!! This devastated Greta because she knew there was nothing she could do about the ADEM.
We did have a neuropsychological exam done in Dallas and are very glad we did! It gives us an idea of where she was at shortly after diagnosis and initial treatment. It also gives clear guidelines for what can be done at school and at home to help Greta the most. These recommendations have been very helpful when shared with Greta's teachers. So glad we have that information.
Here is hoping that our little girls have a great life and never let ADEM stop them!!
Nola mom said:
Hi Greta's mom, My daughter (age 4) has such similar issues at school with her friends. She used to be welcomed to her classroom with open arms from all her friends. Now they don't know how to interact with her because she is sometimes like her old self, but then like a flip of a switch, she is impulsive, irritable and down right mean. She goes from hugging everyone and telling them she loves them to crying because no one loves her. She is an emotional roller coaster. My daughter was also diagnosed with mono prior to the ADEM diagnosis and then later was told it was a false positive. Interesting coincidence. My daughter was diagnosed 6 months ago. How old is your daughter? Did your daughter have a neuropsychological evaluation? Our doctor in Texas and our local doctor in New Orleans recommended we have one. We get the results next week. We are also in play therapy to help with social interaction and behavior modification. I do feel that has given me some tools to help when she gets out of control. It is so frustrating when things look normal on the surface but you know your child and you know they are different now.
Your words help so much. Thanks for sharing how it works for you in daily life. This is something I can present to Greta on her level and then help her figure out how to process things so she has a manageable system. When she gets upset and can't control the emotions, it is like a nuke going off in our home. My husband and I are learning to not take it personally, but sometimes it is really difficult. We pull back and help her process as best we can and she eventually recovers. We, however, feel traumatized for a day or two. So glad she doesn't have these breakdowns more than a couple of times a month. They are a lot to handle!
Thanks again for your words of encouragement.
Marley said:
Hi Greta's mum,
I had ADEM about 11 years ago and still trying to cope day to day.
I too recovered from most (not all) of the physical problems but I've been coming to realize that mentally/psychologically my recovery was not as good. I can only imagine how this would affect a child and the people around her.
Reading through this discussion I have to agree that the 'slow down' advice is like gold. Patience from the people around her is so much more important now. The way you describe her now brings a tear to my eyes because it pretty much describes how I feel/behave.
For me the key is for people to be there and listen when I desperately need company. Also, for people to leave me to myself when I need some space. I was never like this before. Still find it amazing how this has changed me. I often look at my life as 2 halves - Before and after ADEM.
As an adult it's obviously different because, for instance, when I get upset I can hide it better and hold back until I'm alone. As a child she has not had the chance to build up these kind of defenses and maybe holding back wouldn't be the way to go anyway...? Children (I have 2 young daughters or my own) should be able to show their emotions and upsets but when they are augmented by, in this case, ADEM, I can imagine it's more distressing for her and those around her.
Not sure I'm making as much sense as I am to myself but since ADEM I've learnt to just go with my feelings as best as I can. My wishes are with your daughter and family. I dearly hope she continues her recovery. Sounds like she has a lot of love around her already and that can only help I'm sure.