I'm wondering if there is any type of Psychologist I should ask for with a child after ADEM. After reading a lot of stories on here I feel we were really lucky! But I have also seen a number of parents are dealing with major mood swings in our children. Have you seen a Psychologist? I know some psychologist have a specialty area, but which one does ADEM fit.
Thanks!
Merry
Merry,
My son is 16 and we feel lucky as well. I did seek therapy for my son because of mood swings. I asked for referrals through the neuropsych who evaluated him at the hospital. The therapist recommended to us has a specialty in the brain trauma/injury; which is great but my son did not click with this person at all. The most important thing is the connection, but I think if the therapist has some level of expertise in the impact of trauma and or illness on the brain it would be helpful. My son is not in therapy right now but that door is always open… tough to figure out if his mood swings are ADEM related or typical for teenagers.
Best,
Lauren
Hi Merry,
May I ask what caused your childs ADEM
Merry
Being an ADEM survivor I was seeing a Pychologist in the rehab I was in, because ADEM is not well known hear, I was treated under the acquired brain injury. We talked a lot about issues I was dealing with, plus she put me through a question answer and written program to see how my memory and other functions were going, she said I went OK, but I still have moment 2 years on.In regard to the mood swing, even I cannot explain them, it just build up and you explode, and it can be over the smallest thing. My wife was not copping with these outburst,s so my doctor put me on Epilim, which seem to have helped. I think seeing a professional in Neuro/stroke or MS, plus medication can improve the situation. If I cannot give you an answer to why we act like this, and I,am an adult, just imagine what it is like for a child or even a teenager. Sorry I can not give you a straight answer, be patient its a long journey.
Rob
My Daughter is 6 and that is my problem too. Is she just a brat or in a power struggle or is this related to ADEM. We never did get the follow-up MRI and are doing them now (2years later)because I'm seeing a bit of the same attitude and a BIT of clumsiness.
LB said:
Merry,
My son is 16 and we feel lucky as well. I did seek therapy for my son because of mood swings. I asked for referrals through the neuropsych who evaluated him at the hospital. The therapist recommended to us has a specialty in the brain trauma/injury; which is great but my son did not click with this person at all. The most important thing is the connection, but I think if the therapist has some level of expertise in the impact of trauma and or illness on the brain it would be helpful. My son is not in therapy right now but that door is always open... tough to figure out if his mood swings are ADEM related or typical for teenagers.
Best,
Lauren
I don't know. I thought she had a concussion due to a fall down the stairs, but it kept progressing. From what I have seen in other stories, I think a few weeks before we were all sick so I dismissed the fever she had even though hers lasted a day or two long. I think what we were luckiest with is one of the top Children's Neurologist happened to be in the hospital we were in and they kinda did one of those, "Hey got something for you to look at." things. Just from hearing what was going on he knew what it was, so for us it was less than 24 hours when we had an answer and were released 4 days later.
bchap said:
Hi Merry,
May I ask what caused your childs ADEM
As an adult (diagnosed as a child) with ADHD I have said, "I can't tell you why I'm this way....." Someone told me to expect the Dr to tell me what changes I can make. And that is fine with me. If I can change the way I talk to her or if I need to give some kind of warning, X will be happening in Y, then I'm all for it. Maybe this is not related at all? I hope not to be to forward, but from your note I take it you did not have mood swings before. I'm also guilty of letting things build and then "blowing my top". But hers are different and over the silliest of things. Saying thank you to grandparents for gifts. We went to Disney a few months ago for the first time ever and it was full of flip-outs and her never wanting to do anything. All of our pictures of the family have someone holding her and her back turned pitching a fit. Her brother never had fits like that at this age. He would tell us he was angry and then pitch a fit. She just hides in the corner, screams, kicks, and etc. I start out by being nice, but then (faster each time) I lose it and "become my mother". LOL. She was becoming such a sweet little girl and still is, but I need to find out how to approach her so she doesn't flip out on me.
Beaufort said:
Merry
Being an ADEM survivor I was seeing a Pychologist in the rehab I was in, because ADEM is not well known hear, I was treated under the acquired brain injury. We talked a lot about issues I was dealing with, plus she put me through a question answer and written program to see how my memory and other functions were going, she said I went OK, but I still have moment 2 years on.In regard to the mood swing, even I cannot explain them, it just build up and you explode, and it can be over the smallest thing. My wife was not copping with these outburst,s so my doctor put me on Epilim, which seem to have helped. I think seeing a professional in Neuro/stroke or MS, plus medication can improve the situation. If I cannot give you an answer to why we act like this, and I,am an adult, just imagine what it is like for a child or even a teenager. Sorry I can not give you a straight answer, be patient its a long journey.
Rob
We are seeing a play therapist and psychiatrist. I would like to find a different psychiatrist that specializes in brain injury, but it is hard to find in our area. My daughter was diagnosed in May of 2013. She has been taking Respirdone ever since for agitation, impulsivity, short attention span and mood swings. She turned 5 in December. She requires a “shadow” at school to help her get through the day without hitting or becoming aggressive when she gets frustrated. She has good days and bad days. She continues to repeat things she hears over and over, asks the same questions, watches e same clip of a show, listens to the same songs over and over. She has difficulty with transitions and requires nearly constant attention. We have tried other medications for ADHD and they just make the symptoms worse. We have seen some improvement but she is definitely not back to pre ADEM status. It has cost her her friendships at school and we plan to move her next year to get a fresh start.
Best,
Kim
Merry,
I also get the flip outs from my daughter. It is so frustrating because they come out of no where. I have adopted the “take a deep breath” advice I give to my daughter but it doesn’t always work out and I blow my top too! We are doing therapy called PCIT with my daughter and that has helped more than anything. Maybe that is offered in your area as well? Check it out online.
In my experience as a mother of a boy who had one episode of ADEM at age 6, followed by several repeated attacks of a "disease of the white matter of the brain, primarily optic neuritis," we used two different psychologists for my son from age 8 to age 12. He had behavior problems, which were worst at school (such as having difficulty starting and completing classwork, refusing to cooperate, having meltdowns, hiding under desks, etc.) and general psychological difficulties adjusting to the trauma of illness. He had an underlying learning disability that made school especially frustrating, with the ADEM on top of it. The first psychologist was okay but not as effective as the second one, though their qualifications were identical: PhD in psychology, specializing in children.
I have never heard of a specialization among psychologists for children with ADEM, and I don't think it's necessary. Only a specialization in children is needed. You will have to educate the psychologist on what your child experienced. The psychologists we worked with readily understood ADEM when we explained it to them, and perhaps they took some time to study it on their own. What is needed is a skilled counselor who can help your child process what has happened to him/her and help your family communicate well. Finding a trusted professional with good counseling skills and insights into reaching children is most important.
I would also add that there is no psychological quick fix. If I had it to do over again, I would be much more patient with my son and less eager to see that he got "fixed." My own anxiety and fear was the real enemy. The number one thing parents can do is provide a stable, loving home for your sick and/or recovering child, despite the tremendous worry you feel.
I wouldn't recommend this, but homeschooling my son for 7th grade finally broke the terrible cycle of negative school experience. It wasn't a good homeschool experience, either, but that year of absence from the pressure of school really helped my son.
My teenaged son does not see a psychologist now, but he knows one is available if he ever feels he needs help coping again. He came through the storm that ADEM created, and yours will, too.
As a side note, no psychologist or neurologist we consulted ever suggested psychotropic medications for my son. In fact, my son's main neurologist specifically advised against it, saying that he was dealing with enough medications in the way of immunosuppressants and anti-seizure drugs, and it wasn't a good idea to to complicate matters with psychiatric medications. I'm grateful we never went down that route.
Thank you so much for your reply. It gives me great hope to hear your son has “come through the storm.” I have considered home schooling my daughter next year to give her a break, but I’m not sure how effective it would be or how I would handle it. We are in the process of weening my daughter from the Risperdone now. We have tried in the past but it was not good. I hate that she is on this medication and I hope we can ease her off in the next few months. I wonder also if she ever needed to be on these drugs. Our neurologist recommended it, but it was prescribed by a psychiatrist. I don’t have much confidence in our psychiatrist. I am actively looking for another alternative. Like I said before, the PCIT has been the most beneficial therapy so far.
I am glad you have hope! Hold on to that. I feel one of the hardest things about caring for a child with serious illness was always second-guessing myself and never being satisfied with his treatment. At some point you just have to stop and say, "We're doing the best we can." But at a sensible level, one should always be evaluating treatment and looking for alternatives -- but within reason. I have a bias against psychiatric medicines, but I recognize it's a bias and I must be careful not to let it sway me too much. Many people are helped by them, but my gut feeling is they are best avoided, especially in children. I had such frustration homeschooling my son, but looking back at it, it was worth doing. If I could do it over again, I would not worry about his academic progress or compare myself to other homeschool moms and feel inadequate. My son and I watched a lot of science and history documentaries, played math games online, and I read books to him. I didn't stick to my ambitious plans -- I didn't have the discipline to do so and felt constantly guilty. More than half the battle is just managing to stay on an even keel. If you could overcome the guilt and worry, and do things you and your daughter would enjoy, then I think it would be beneficial for a year, just to give her a break. My son had a very different attitude about school after his homeschool year. I think he realized what he missed about school, and felt willing to put up with the struggles in order to have those things -- being with other kids and not having to be with Mom all day. Ha! (He was 13 when he rejoined public school.) I wish you the best, whatever you decide.
Nola mom, I highly recommend homeschooling for kids with differences who are struggling in the school system. JD's mom is right, though, it works much better if you don't worry about offering a "perfect" homeschool experience but just be happy with "good enough for us." Keep the pressure off, and make the experience as fun as possible. My kids were out of school in middle school but rejoined one way or another in high school.
Thanks for both for your replies. I agree that the hardest part is the second guessing. I have just now started taking some time for myself. I had to quit my job when my daughter got sick and now I only work part time as needed. I have the time now to home school but I’m scared I don’t have the patience to deal with my daughter all day, every day. Did you guys set up any activities with other mom’s that home school their kids? My daughter can not focus on any one activity for more than about 2 minutes. She is in CONSTANT motion and requires almost constant attention. Her temper is fierce, she is very impulsive and has very little frustration tolerance. I can handle it most days but when I’m stressed about something it adds fuel to her fire and makes for a very distressing situation. I want to do what is best for her. I plan to keep her home all summer, which will be a good test.
Nola mom, when I homeschooled my son, we had regular breaks from each other. He took one class a day from the local school (either typing or gym). We didn't seek out other homeschoolers, as he was in scouts, church youth group, and had a handful of neighborhood kids to play with. Though things didn't always go smoothly when he was with these groups, at least I didn't have to be the sole caregiver at all times. My husband helped a lot with childcare responsibilities on evenings and weekends. If my child needed constant attention, I would think it especially important to share the responsibility with others. Perhaps a better route than homeschooling your daughter is pressuring the school to make more accommodations for her, so her experience at school can be improved.
We hope to get her into the public school system next year where they have more resources available to help her. May will mark a year since her diagnosis. I am hoping her brain continues to heal and with that, the behavior improves. She is already much better than where we started. I have to keep reminding myself of that.