Aa
Recent MRI
So I typed in hyperintensity into Google and it sent me here and from what I'm reading I'm starting to feel a little freaked out because this is related to my 8 year old daughters MRI she has been having attacks of head pain and numbness and tingling on limbs I very worried for her because I do have MS and her episodes remind me exactly of my own attacks it makes me so sick to think about her living with this for the rest of her life is it possible for an right year old to have MS
We are about 3 hrs from there but we do already go to chop for a dentist for my son because of his cleft palate so I will be sure to look him up when I'm there thank you for the info
If you are within a few hours of Philadelphia, internationally renowned Pediatric MS expert, Dr. B. Banwell is at CHOP.
Thank you for the info i will for sure be addressing all of these concerns at the upcoming appt it helpful to know what I should ask about
Ah, Pennsylvania. Cool, us too.
So, what you will need to know for school is that PA is currently the only state with a dedicated BrainSteps team in each Intermediate Unit (the IUs provide services to the school districts. PT/OT, tech apparatus, cognitive work.) Originally BrainSteps was designed for kids with traumatic brain injuries (TBI), and you will notice mostly they talk about concussions, but they also work with acquired brain injuries/other medical, which we were able to show them that ADEM and MS also were. They will only work with the child while they are in school, so if she goes homebound instruction, there will be no assistance given.
http://www.brainsteps.net/_orbs/about/index.aspx In the upper right, you will see where you can make a referral. You can, your doctor can, a teacher can.
So, what you will need to know for school is that PA is currently the only state with a dedicated BrainSteps team in each Intermediate Unit (the IUs provide services to the school districts. PT/OT, tech apparatus, cognitive work.) Originally BrainSteps was designed for kids with traumatic brain injuries (TBI), and you will notice mostly they talk about concussions, but they also work with acquired brain injuries/other medical, which we were able to show them that ADEM and MS also were. They will only work with the child while they are in school, so if she goes homebound instruction, there will be no assistance given.
http://www.brainsteps.net/_orbs/about/index.aspx In the upper right, you will see where you can make a referral. You can, your doctor can, a teacher can.
I am in PA also I did open an account but I used a different name I understand the blocking part I did have the person blocked but they kept making fake account I didn't add her but some of my friends did and she started trouble with then but if she doesn't know I don't have an account then she won't feel it necessary to make accounts :) I would love to pull my daughter out of the school and homeschool her but my husband won't allow it and we checked into private school but none are very close and while we could afford it would be tight financially so we are at a dead lock on that lol I know I have considered getting a lawyer because of the extreme negligence of the school even as far a not providing bathrooms for the girls and having them use the bushes at cheerleading practice I caused a stir about it and the girls have a bathroom now but I have been on the blacklist ever since it is all very frustrating because my husband actually none of my family support any of my decisions and think I'm over reacting so ever decision I make is met with opposition from somewhere honesty the only support I have from anywhere is from the doctors that is one reason why I am glad I found this page
My MS started before the age of two. I have lived a pretty normal life. I was not diagnosed until I was in my 40's. I knew I had Neurological problem but not what it was. I worked in construction and still do therapeuric riding every once and a while.
I guess I have assumed you are in the USA...if not, Canadian MS Society also has Pediatric Resources, sometimes shared with its USA cousin. UK might be a bit weaker on Pediatric Resources at this time. Australia has some specific to Pediatric MS.
I want you to know, our daughter goes to school in PA, but was hospitalized extensively in NYC. The day after admission, a teacher from the NYC Dept of Education was in her room. That is right, NYC has teachers assigned to some hospitals! It was a bit dicey, with different curriculum, but they tried to keep her up on at least her core HS subjects.
Also, find out what you would need to do to get homebound instruction for your child, or on-line learning from the school district or your state. You might also be able, when she is in school, to get the school district to provide PT/OT as required.
Also, find out what you would need to do to get homebound instruction for your child, or on-line learning from the school district or your state. You might also be able, when she is in school, to get the school district to provide PT/OT as required.
BTW, if you open a FB account, you can go into security and privacy settings to block certain people, or people in general from locating or contacting you, as well as who can see your posts. As the PMSA group is a closed group, the administrator has to approve anyone that asks to join.
The school needs to know that YOU know that she has rights, and that under federal, and various state laws, they ARE required to provide accommodations to her. The parents at the FB group have a lot of experience with these issues. Also, the NMSS has books specifically about this, both for the parent/student as well as for educators. You can download them from NMSS, but when you contact them about pediatric MS, they will include a copy of each of these books in the package they send out.
If necessary, you can look up your state laws about educational services...very often you will also find links for lawyers that specialize in education law. Let me tell you, schools tend to roll over the second they believe that you will bring a lawyer into the mix.
If necessary, you can look up your state laws about educational services...very often you will also find links for lawyers that specialize in education law. Let me tell you, schools tend to roll over the second they believe that you will bring a lawyer into the mix.
I don't won't her to struggle through school either especially since the school is so horribly unsupportive :(
I will think about reconsidering I had one and deleted it because of a family member making trouble yes she had a horrible time this year in school she missed 21 days total because of being sick she also has a kidney disorder so that was some of the issue and she was hospitalized for a strep colonization of her body because of frequent strep throat the Drs were at a loss because her tonsils and adenoids are already taken out they ended up putting her on IV antibiotics of rafampin for 5 days anyway she barly passed 3rd grade but I f
http://www.nationalmssociety.org/Resources-Support/Resources-for-Specific-Populations/Pediatric-MS-Support-Network
I believe the woman at NMSS most involved with pediatric services is Kim Koch. Reach out, they can send you a packet of specialized information to get your family started, including a book you can give to her school.
I believe the woman at NMSS most involved with pediatric services is Kim Koch. Reach out, they can send you a packet of specialized information to get your family started, including a book you can give to her school.
Please reconsider coming to FB. You would have over 350 parent minds to pick from USA, UK, Latvia, Australia...and support with the odder things such as IEP plans, 504 plans for school, social issues young kids and adolescents with a life altering diagnosis face, and various get togethers and even camps for kids... October,
NMSS will have a Kids Get MS too family get together outside Baltimore (free) but you need to register.
NMSS will have a Kids Get MS too family get together outside Baltimore (free) but you need to register.
My daughter was finally diagnosed as she was turning 18, she missed half a year of her senior year of HS, but will graduate next Tuesday.
But because pediatricians are mostly still under the old and mistaken idea that kids don't get MS, no one put the pieces together for 3-4 years. She has black holes in her brain...it was unnecessary. She was treated as Major Depression with school refusal, and was even psyched for 8 days. Unnecessary. All because no one here knew that kids get MS.
We are in a Rural/Suburban area, but now there is ANOTHER kid entering this HS with pediatric onset MS.
It's not so rare...just misunderstood. Tw o weeks ago at the MS conference in TX, not one drug company rep knew that kids get MS. So many doctors stopped at the Pediatric MS Alliance booth because even these established neurologists never heard of Pediatric MS. I believe that we are going to see more diagnoses now that MDs will learn about it.
But because pediatricians are mostly still under the old and mistaken idea that kids don't get MS, no one put the pieces together for 3-4 years. She has black holes in her brain...it was unnecessary. She was treated as Major Depression with school refusal, and was even psyched for 8 days. Unnecessary. All because no one here knew that kids get MS.
We are in a Rural/Suburban area, but now there is ANOTHER kid entering this HS with pediatric onset MS.
It's not so rare...just misunderstood. Tw o weeks ago at the MS conference in TX, not one drug company rep knew that kids get MS. So many doctors stopped at the Pediatric MS Alliance booth because even these established neurologists never heard of Pediatric MS. I believe that we are going to see more diagnoses now that MDs will learn about it.
If you don't have or want FB, I urge you to go to nmss.org, which has a section just for pediatric MS information, including the listing of Pediatric Centers if Excellence around the USA. Some are Stony Brook Lourie Center in Long Island, NY, Dr. Banwell at Children's Hospital of Philadelphia, The Cleveland Clinic, UCSF in San Francisco. I think there are nine around the country, with a FEW pediatric MS specialists scattered. Don't futz around with this, when Ped MS makes itself apparent, it gas already been doing damage to white and gray matter during the child's brain development, and none of the DMT have been tested in children, so you want to go with doctors that have extensive experience using them off label in children.
Also,there are a lot of school issues that regular MS doctors have no experience dealing with.
Also,there are a lot of school issues that regular MS doctors have no experience dealing with.
Oh I see it blocked out my email address well I keep up with thing in here and hopefully that will help with some tips and support :)
I appreciate the invite but I do not have Facebook but my email address is ***@**** We are very lucky to live close to a very good hospital and I really believe that it is indeed a rare condition considering the head of pediatric neurology said he wants to take her on as a patient Do you have MS as well? I was just very surprised when they suggested it a a possibility because I've been told so many times that it is so unlikely for my kids to have inherited it but now bam here it is in our face is your daughter on any meds? My neurologist is trying to get our ins to pay for caponex for me I'm so hesitant to to persure anything with the kids because I just worry about how it will all impact their future like what if it affects Er having babies then she may feel bad that I allowed he to be put on meds it is all a huge responsibility one no one ever warns you about in all their lecturing about the decision to have babies but they are worth it and I wouldn't trade them for anything :)
Being a parent of a pediatric MS patient, I can say it is less rare than many here realize. If you are on Facebook, we have a closed group, Pediatric MS Alliance that I would invite you to join. Parents from around the world can help guide you and your child through the steps of getting through the diagnosis stage and after. The world of Pediatric MS, while similar, is even more specialized, with a limited amount of medical practices trained in its intricacies.
If you need an invite to the group, please reach out to me, I will do everything that I can to help you out.
If you need an invite to the group, please reach out to me, I will do everything that I can to help you out.
I'm glad I found you :) she hasn't had any test yet we see Neuro for her on the 24th and will develop a plan then they did do an EEG on her to rule out seizures because her baby brother has partial complex seizures and that was normal
I myself was only recently diagnosed with MS it will be a year in Sept but the dr said he thinks I've had it for at 4 years my symptoms got really bad after I had my son and my dr said that is common it just kept getting worse as bad as tremors that had me bed ridden Fromm anywhere from 25 mins to 3 hrs my pcp finally agreed to send me to Neuro and they found ms since I've been diagnosed I've made several lifestyle changes and that has drastically helped I rarely have tremors anymore I had to change jobs I went from being a pediatric nurse in the hospital and taking care of 10 kids to a home health care setting and that has reduced my stress level a lot my biggest concern and worry is my forgetfulness since I have a lot to remeber in my job my phone reminder is my constant beat friend overall we are all happy and live everyday to make the best out of every situation and to learn not to use our problems as crutches mine line of work as really showed me that it could as be worse so really I try to tell myself it could have been something different for her this is something we can deal with but yes as we all know MS has a way if playing with our emotions and sometimes I have to get in the shower and have a good cry but usually we are determined to not let any of it change our lives and it is always nice to find support so thank you all for responding
I myself was only recently diagnosed with MS it will be a year in Sept but the dr said he thinks I've had it for at 4 years my symptoms got really bad after I had my son and my dr said that is common it just kept getting worse as bad as tremors that had me bed ridden Fromm anywhere from 25 mins to 3 hrs my pcp finally agreed to send me to Neuro and they found ms since I've been diagnosed I've made several lifestyle changes and that has drastically helped I rarely have tremors anymore I had to change jobs I went from being a pediatric nurse in the hospital and taking care of 10 kids to a home health care setting and that has reduced my stress level a lot my biggest concern and worry is my forgetfulness since I have a lot to remeber in my job my phone reminder is my constant beat friend overall we are all happy and live everyday to make the best out of every situation and to learn not to use our problems as crutches mine line of work as really showed me that it could as be worse so really I try to tell myself it could have been something different for her this is something we can deal with but yes as we all know MS has a way if playing with our emotions and sometimes I have to get in the shower and have a good cry but usually we are determined to not let any of it change our lives and it is always nice to find support so thank you all for responding
I'm glad I found you :) she hasn't had any test yet we see Neuro for her on the 24th and will develop a plan then they did do an EEG on her to rule out seizures because her baby brother has partial complex seizures and that was normal
I myself was only recently diagnosed with MS it will be a year in Sept but the dr said he thinks I've had it for at 4 years my symptoms got really bad after I had my son and my dr said that is common it just kept getting worse as bad as tremors that had me bed ridden Fromm anywhere from 25 mins to 3 hrs my pcp finally agreed to send me to Neuro and they found ms since I've been diagnosed I've made several lifestyle changes and that has drastically helped I rarely have tremors anymore I had to change jobs I went from being a pediatric nurse in the hospital and taking care of 10 kids to a home health care setting and that has reduced my stress level a lot my biggest concern and worry is my forgetfulness since I have a lot to remeber in my job my phone reminder is my constant beat friend overall we are all happy and live everyday to make the best out of every situation and to learn not to use our problems as crutches mine line of work as really showed me that it could as be worse so really I try to tell myself it could have been something different for her this is something we can deal with but yes as we all know MS has a way if playing with our emotions and sometimes I have to get in the shower and have a good cry but usually we are determined to not let any of it change our lives and it is always nice to find support so thank you all for responding
I myself was only recently diagnosed with MS it will be a year in Sept but the dr said he thinks I've had it for at 4 years my symptoms got really bad after I had my son and my dr said that is common it just kept getting worse as bad as tremors that had me bed ridden Fromm anywhere from 25 mins to 3 hrs my pcp finally agreed to send me to Neuro and they found ms since I've been diagnosed I've made several lifestyle changes and that has drastically helped I rarely have tremors anymore I had to change jobs I went from being a pediatric nurse in the hospital and taking care of 10 kids to a home health care setting and that has reduced my stress level a lot my biggest concern and worry is my forgetfulness since I have a lot to remeber in my job my phone reminder is my constant beat friend overall we are all happy and live everyday to make the best out of every situation and to learn not to use our problems as crutches mine line of work as really showed me that it could as be worse so really I try to tell myself it could have been something different for her this is something we can deal with but yes as we all know MS has a way if playing with our emotions and sometimes I have to get in the shower and have a good cry but usually we are determined to not let any of it change our lives and it is always nice to find support so thank you all for responding
I hit send too soon...
Whagt else does the MRI report say? Has she had other tests like blood work to rule out mimics or an LP? Is she being seen by you neurologist?
Ask us liots of questions. We're a friendly bubch :-)
Kyle
Whagt else does the MRI report say? Has she had other tests like blood work to rule out mimics or an LP? Is she being seen by you neurologist?
Ask us liots of questions. We're a friendly bubch :-)
Kyle
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