Here is My Question:
I have a question regarding pediatric cognitive problems, caused by lesions.
Our story:
We noticed that our little girl has some learning problems at about age 5, when she had difficulties to start reading and basic math. First year at school she struggled, and after that the homeschooling was recommended as nor teachers, nor doctors were able to detect her problem. Overall a bright, savvy child just “lost” some she learned again and again. The guess was – she can’t tolerate the stressful environment in the classroom.
Last November, at age 11, she had a bout. After an usual morning at 11 am she announced that she can’t remember how old is she, she become sleepy, then didn’t recognize numbers on computer screen (asked “if that’s 47” while looking at number 132), then vision went blurry (“why it’s snowing inside the room?”, and then within an hour whole left side was fully paralysed. She was conscious all the time.
Hospital: after first series of tests in ER she was appointed to neurology. MRI showed two small, sharp edged lesions in brain, no lesions in spinal cord. No fewer, no previous vaccination or fly symptoms. No inflammation of any kind. Doctors decided that there is no point to put her on steroids or any other medications and just monitored her closely for two weeks. The complete paralysis of the left side eased the next day, and about 24 hours after the attack she was able to make few wobbly steps with a support. The weirdest part – while she seemed normal herself mentally, she didn’t recognize some numbers (mixed 6 and 7, 8 with 9) and was not able to count up to 10. She was not able to even add 2+2.
The series of tests showed: LP - no oligoclonal bands, EP – unilateral ON.
Doctors just shrugged shoulders – very unusual case of ADEM, OR, most likely, beginning of MS. We were released after 14 days when girl was able to walk without a support 5 steps and was improving.
Physically now, 10 months later, she has improved a lot. Severe fatigue that kept her in bed for days has nearly gone now and while she gets tired easier than before, she is almost able to live normal (she takes a nap right after school work now which helps). She starts limping lightly only when she feels tired, and her left foot is a bit crooked out at ankle.
Mentally situation hasn’t improved much, especially with math. She had worked very hard and went through all the math from beginning up to her year now, but she can’t do arithmetic without a calculator. She understands, what she must do in math, but mechanical arithmetic she hasn’t got back despite her efforts.
Her language also has some problems – she gets very tired with reading (hard concentration tires her out), and has started to mix up words (like using “yesterday” instead of “tomorrow”, and not even noticing such a mistake) or even loosing meaning of simple words ( one day at the shop she pointed to cigarette packs, asking what’s that, and after long explanation it was like “oh, yes, that’s what you light with the lighter!”, weird things like this).
Three months after the first MRI both lesions were still in place, no new lesions.
Nobody is able to predict will this turn into full scale MS or not right now, but I would like to find some OPINION on these cognitive problems. Is there any chance that they will disappear, and - if not – what to expect?
Right now I see two options – pressing hard on her schoolwork in hope that it will improve, or – let her do things at her pace, leaving all academic aspirations behind.
It’s only medically related question, and you can only give an OPINION, but it would be a great help if you would share your experience from similar cases – if child had shown cognitive problems long before the first episode, is there any chances she will regain the cognitive level back to normal at some point or, when cognitive decline is detected at early age, it remains for the rest of the life?
I do not want to put the pressure on her schoolwork if that’s basically pointless, but I also do not want to pussy her around and let her slip hopelessly behind her peers thus destroying her future.
Answer:
I am sorry to hear about your daughter’s difficulty but glad to hear that she is making some progress towards recovery. Cognitive problems are very common in pediatric onset MS and require a management approach that differs from adults for two reasons; first, children like your daughter are at an age when the brain is potentially very adaptable and can recover from injury to an extent not possible in older adults. This makes it worthwhile to get expert assessment and individual learning plans and cognitive rehabilitation started as soon as possible. At the same time their brains are uniquely vulnerable to a variety of stressors and injuries; for this reason it is important to treat them aggressively and be attuned to the development of psychiatric issues (anxiety and depression) that may hinder their recovery. It is also important to solidify the final diagnosis as soon as possible.
There are a group of Pediatric MS Centers around the country and in Canada where you can take your daughter for an expert evaluation. In addition many comprehensive MS Clinics at academic centers around the country have programs for the evaluation and management of pediatric MS. You may want to start by contacting a pediatric MS Clinic in your geographic region: options include the National Pediatric MS Center at Stoney brook (Long Island New York), The Pediatric MS Clinic at UT Southwestern (Dallas Texas), the University of Buffalo Pediatric MS Center (Buffalo New York), or the Pediatric MS Center at the University of California San Francisco. As for support for you as a parent, the PMSA (Pediatric Multiple Sclerosis Alliance) might be able to help and understand what you are going through. (READ MORE)
- Rip Kinkel, MD
Dear Ann,
So sorry to hear about the challenges and frustrations regarding your daughter's experience and symptoms. This process is difficult and diagnoses often require time.
While we cannot give you specific guidance on your daughter's condition, we can get you connected with folks who have abundant expertise with these issues. Cognitive changes have been documented in children with all forms of brain based inflammation (ADEM and MS). The key is to be seen at a center that has a neuropsychologist integrated into the MS practice - these individuals have a unique ability to sort out the cognitive deficits and advise on management.
There are many centers that can do this, but a few to consider would be Children's Medical Center Dallas, CHOP, Brigham and Women's, UCSF and University of Colorado in Denver
--Ben Greenberg, MD
I have a question regarding pediatric cognitive problems, caused by lesions.
Our story:
We noticed that our little girl has some learning problems at about age 5, when she had difficulties to start reading and basic math. First year at school she struggled, and after that the homeschooling was recommended as nor teachers, nor doctors were able to detect her problem. Overall a bright, savvy child just “lost” some she learned again and again. The guess was – she can’t tolerate the stressful environment in the classroom.
Last November, at age 11, she had a bout. After an usual morning at 11 am she announced that she can’t remember how old is she, she become sleepy, then didn’t recognize numbers on computer screen (asked “if that’s 47” while looking at number 132), then vision went blurry (“why it’s snowing inside the room?”, and then within an hour whole left side was fully paralysed. She was conscious all the time.
Hospital: after first series of tests in ER she was appointed to neurology. MRI showed two small, sharp edged lesions in brain, no lesions in spinal cord. No fewer, no previous vaccination or fly symptoms. No inflammation of any kind. Doctors decided that there is no point to put her on steroids or any other medications and just monitored her closely for two weeks. The complete paralysis of the left side eased the next day, and about 24 hours after the attack she was able to make few wobbly steps with a support. The weirdest part – while she seemed normal herself mentally, she didn’t recognize some numbers (mixed 6 and 7, 8 with 9) and was not able to count up to 10. She was not able to even add 2+2.
The series of tests showed: LP - no oligoclonal bands, EP – unilateral ON.
Doctors just shrugged shoulders – very unusual case of ADEM, OR, most likely, beginning of MS. We were released after 14 days when girl was able to walk without a support 5 steps and was improving.
Physically now, 10 months later, she has improved a lot. Severe fatigue that kept her in bed for days has nearly gone now and while she gets tired easier than before, she is almost able to live normal (she takes a nap right after school work now which helps). She starts limping lightly only when she feels tired, and her left foot is a bit crooked out at ankle.
Mentally situation hasn’t improved much, especially with math. She had worked very hard and went through all the math from beginning up to her year now, but she can’t do arithmetic without a calculator. She understands, what she must do in math, but mechanical arithmetic she hasn’t got back despite her efforts.
Her language also has some problems – she gets very tired with reading (hard concentration tires her out), and has started to mix up words (like using “yesterday” instead of “tomorrow”, and not even noticing such a mistake) or even loosing meaning of simple words ( one day at the shop she pointed to cigarette packs, asking what’s that, and after long explanation it was like “oh, yes, that’s what you light with the lighter!”, weird things like this).
Three months after the first MRI both lesions were still in place, no new lesions.
Nobody is able to predict will this turn into full scale MS or not right now, but I would like to find some OPINION on these cognitive problems. Is there any chance that they will disappear, and - if not – what to expect?
Right now I see two options – pressing hard on her schoolwork in hope that it will improve, or – let her do things at her pace, leaving all academic aspirations behind.
It’s only medically related question, and you can only give an OPINION, but it would be a great help if you would share your experience from similar cases – if child had shown cognitive problems long before the first episode, is there any chances she will regain the cognitive level back to normal at some point or, when cognitive decline is detected at early age, it remains for the rest of the life?
I do not want to put the pressure on her schoolwork if that’s basically pointless, but I also do not want to pussy her around and let her slip hopelessly behind her peers thus destroying her future.
Answer:
I am sorry to hear about your daughter’s difficulty but glad to hear that she is making some progress towards recovery. Cognitive problems are very common in pediatric onset MS and require a management approach that differs from adults for two reasons; first, children like your daughter are at an age when the brain is potentially very adaptable and can recover from injury to an extent not possible in older adults. This makes it worthwhile to get expert assessment and individual learning plans and cognitive rehabilitation started as soon as possible. At the same time their brains are uniquely vulnerable to a variety of stressors and injuries; for this reason it is important to treat them aggressively and be attuned to the development of psychiatric issues (anxiety and depression) that may hinder their recovery. It is also important to solidify the final diagnosis as soon as possible.
There are a group of Pediatric MS Centers around the country and in Canada where you can take your daughter for an expert evaluation. In addition many comprehensive MS Clinics at academic centers around the country have programs for the evaluation and management of pediatric MS. You may want to start by contacting a pediatric MS Clinic in your geographic region: options include the National Pediatric MS Center at Stoney brook (Long Island New York), The Pediatric MS Clinic at UT Southwestern (Dallas Texas), the University of Buffalo Pediatric MS Center (Buffalo New York), or the Pediatric MS Center at the University of California San Francisco. As for support for you as a parent, the PMSA (Pediatric Multiple Sclerosis Alliance) might be able to help and understand what you are going through. (READ MORE)
- Rip Kinkel, MD
Dear Ann,
So sorry to hear about the challenges and frustrations regarding your daughter's experience and symptoms. This process is difficult and diagnoses often require time.
While we cannot give you specific guidance on your daughter's condition, we can get you connected with folks who have abundant expertise with these issues. Cognitive changes have been documented in children with all forms of brain based inflammation (ADEM and MS). The key is to be seen at a center that has a neuropsychologist integrated into the MS practice - these individuals have a unique ability to sort out the cognitive deficits and advise on management.
There are many centers that can do this, but a few to consider would be Children's Medical Center Dallas, CHOP, Brigham and Women's, UCSF and University of Colorado in Denver
--Ben Greenberg, MD
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