Guest mom24knights Posted June 6, 2012 Share Posted June 6, 2012 Hi Everyone, Forgive the length of this post but I'm hoping that explaining our story, some of you (maybe even SWB) might have some insight, advice and/or recommendations for me. I have 5 children and have used the WTM method with my children for many years. My youngest daughter is now 12 months old and has just been diagnosed with a rare brain disorder called hemimegalencephaly. One side of her brain is larger than the other and malformed. This condition is causing her to have epileptic seizures which are typically intractrable (not controlled with medication). If we don't stop the seizures, doctors predict that she will be severely disabled. They have recommended a radical surgical procedure called a hemispherectomy in which the damaged left side will be removed, preventing the seizures from spreading to the healthy side of her brain and allowing the right side to eventually take over many of the functions and responsibilities of the left side of the brain. After the surgery, she will be paralyzed on the right side of her body (as though she'd suffered a stroke) and will need speech therapy, occupational therapy, physical therapy and possible behavior therapy for a long time in order to establish new neural pathways and recover the use of her right side. Everything I have read indicates that we need to stimulate, stimulate, stimulate her little brain and challenge, challenge, challenge her physical and cognitive growth. I'm hoping to get some recommendations for things like speech therapy DVDs (and other learning videos), toys that stimulate gross and fine motor coordination, music CDs and other teaching tools for special needs children. If you would like to follow her story, I have started a blog for her: http://www.joscelynsjourney.wordpress.com Thank you so much! Quote Link to comment Share on other sites More sharing options...
KirstenH Posted June 6, 2012 Share Posted June 6, 2012 Quote Link to comment Share on other sites More sharing options...
PentecostalMom Posted June 6, 2012 Share Posted June 6, 2012 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
BatmansWife Posted June 6, 2012 Share Posted June 6, 2012 :grouphug::grouphug: What a beautiful baby girl you have!! I pray the surgery, one month from today, will go well!! Quote Link to comment Share on other sites More sharing options...
itsheresomewhere Posted June 6, 2012 Share Posted June 6, 2012 Brainy Baby are great DVDs. Also, baby einstein is also used for brain rehab in tiny patients. The rehab place should give you different ideas too. Also, large picture cards to hold up to her are good. For toys- bead mazes, those put the shapes in the correct holes stuff. Quote Link to comment Share on other sites More sharing options...
speedmom4 Posted June 6, 2012 Share Posted June 6, 2012 My son also has intractable epilepsy. Fortunately he is doing really well right now. He is on two medications and has a Vagus Nerve Stimulator. My son was involved in a seizure study to determine if he was a candidate for a hemispherectomy a few years ago. Thankfully his EEG looked pretty good at the time. It is still an option for our son in the event his seizures get worse. I do know two people IRL who have had a hemispherectomy. One has never had another seizure and had the surgery approximately 15 years ago. He did really really well and is extremely physically active and has friends, etc. The other one was not as successful. They suspect he is having seizures again but he did not have a complete hemispherectomy only a partial. I don't remember what the name of that surgery is but it takes out the part of the brain that they believe the seizures are originating from. I know that this is such a hard decision!! I am on a support list for families with children with hemiplegic cerebral palsy and there are many families there who have had children have a hemispherectomy. The list is called HemiKids.org. Please keep us posted!:grouphug: God Bless, Elise in NC Quote Link to comment Share on other sites More sharing options...
*Michelle* Posted June 6, 2012 Share Posted June 6, 2012 :grouphug: I think it would be most helpful to wait until your little one is in therapy and see which resources are proving most beneficial. Those are the ones that I would get first so you could continue the same activities at home. It would be easy to throw up a huge list of toys and DVDs, but until you know what her strengths and weaknesses are, you may wind up wasting a lot of time and money. Quote Link to comment Share on other sites More sharing options...
Whereneverever Posted June 6, 2012 Share Posted June 6, 2012 :grouphug: I think it would be most helpful to wait until your little one is in therapy and see which resources are proving most beneficial. Those are the ones that I would get first so you could continue the same activities at home. It would be easy to throw up a huge list of toys and DVDs, but until you know what her strengths and weaknesses are, you may wind up wasting a lot of time and money. :iagree: Neurodevelopmental testing can be really helpful, too. Quote Link to comment Share on other sites More sharing options...
Blueridge Posted June 6, 2012 Share Posted June 6, 2012 The Timberdoodle company has a large assortment of things you might find helpful. They also have a special section for autistic and learning challenged children that I will link. Lots of colorful toys, books, and games, for the youngest of kids. May the Lord bless you all through this challenging time. :grouphug: http://www.timberdoodle.com/Homeschooling_children_with_autism_s/27.htm Quote Link to comment Share on other sites More sharing options...
Momof3littles Posted June 6, 2012 Share Posted June 6, 2012 (edited) Talk to her therapists about whether she might be a candidate for "forced use" or constraint-induced movement therapy (CIMT) as she recovers and goes through therapy. This basically taps into neuroplasticity (brain's ability to "rewire" and remodel). I did some research on its use in pediatrics (with cerebral palsy) as a physical therapy student, and at the time it was very cutting-edge. Our research was presented at a national conference. It isn't commonly used but there is some interesting ongoing research with respect to cerebral palsy and stroke and other conditions. It may be something worth looking into, and you may even find someone who would be interested in working with her as a case study for research. I would express a very vocal interest in exploring that option. Many therapists do not have experience with this as it isn't necessarily "conventional" treatment at this point, but if my child was in such a situation, based on my own research experience, it would be something I would want to discuss with the therapists and would probably consider very seriously. Reading up on neuroplasticity in general may be helpful to you as it will obviously be something you are dealing with for quite some time, at a very significant level. Here's one study I pulled up quickly http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2664995/ and another: http://www.ncbi.nlm.nih.gov/pubmed/19489088 eta: I wish you and your family strength, courage, and hope as you move forward. You'll be in my thoughts. Edited June 6, 2012 by Momof3littles Quote Link to comment Share on other sites More sharing options...
besroma Posted June 6, 2012 Share Posted June 6, 2012 She is beautiful! I hope all goes well with her surgery. :grouphug: Quote Link to comment Share on other sites More sharing options...
catz Posted June 6, 2012 Share Posted June 6, 2012 :grouphug: She is precious! I hope the surgery goes well and thank you for sharing your story. :grouphug: Quote Link to comment Share on other sites More sharing options...
Pamela H in Texas Posted June 6, 2012 Share Posted June 6, 2012 You might look at brillkids.com which is a newer version (and very comprehensive and cheaper) version of iahp.org 's program (still available with many videos, books, articles still available). BrillKids also has a very active message board with tons of information :) Anyway, just a consideration. A LOT of people don't like that sort of thing, but I do think there are some real benefits to it for healthy and brain injured children. Quote Link to comment Share on other sites More sharing options...
Guest mom24knights Posted June 6, 2012 Share Posted June 6, 2012 Thank you! Quote Link to comment Share on other sites More sharing options...
momto4kings Posted June 7, 2012 Share Posted June 7, 2012 Look into the NACD, nacd.org. Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted June 7, 2012 Share Posted June 7, 2012 I sent you a pm Quote Link to comment Share on other sites More sharing options...
ThisIsTheDay Posted June 7, 2012 Share Posted June 7, 2012 Praise God for advances in medicine and technology that are providing you with this option. Please continue to keep the board updated when possible. You know you can find much care and prayer support here. Praying for your family.:grouphug: Quote Link to comment Share on other sites More sharing options...
bethben Posted June 7, 2012 Share Posted June 7, 2012 There is a listening program that I forget the name of that professional occupational therapists would know about. They use classical music that has loud and soft tones that really make your ears listen hard. It's supposed to stimulate brain activity. As an adult listening to it, it would drive me crazy and make my brain hurt. The child is supposed to listen to it with headphones to cancel out other noises. I liked it that it helped my son without me having to constantly stimulate him during that time. It's very hands off. Beth Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted June 7, 2012 Share Posted June 7, 2012 What a beautiful little angel! I will be praying for a successful surgery and that you receive abundant graces as your family travels this road. There's a book called The Brain that Changes Itself. It reads like a collections of very inspiring stories of people whose brains have overcome insurmountable challenges. It may give you ideas for therapy as well as hope. :grouphug: :grouphug: :grouphug: And you may want to visit the special needs board. The moms over there are amazing and have great ideas for stimulating brains. Quote Link to comment Share on other sites More sharing options...
Jennifer L Posted June 7, 2012 Share Posted June 7, 2012 :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
QuirkyKidAcademy Posted June 7, 2012 Share Posted June 7, 2012 Gentle hugs and many prayers, Mama..... Quote Link to comment Share on other sites More sharing options...
KnitWit Posted June 7, 2012 Share Posted June 7, 2012 No advice but :grouphug::grouphug::grouphug::grouphug: Prayers for your dd and your family! Quote Link to comment Share on other sites More sharing options...
fraidycat Posted June 7, 2012 Share Posted June 7, 2012 :grouphug: Quote Link to comment Share on other sites More sharing options...
momto4kings Posted June 7, 2012 Share Posted June 7, 2012 There is a listening program that I forget the name of that professional occupational therapists would know about. They use classical music that has loud and soft tones that really make your ears listen hard. It's supposed to stimulate brain activity. As an adult listening to it, it would drive me crazy and make my brain hurt. The child is supposed to listen to it with headphones to cancel out other noises. I liked it that it helped my son without me having to constantly stimulate him during that time. It's very hands off. Beth This called the Listening Program. We've used it all of our children. Quote Link to comment Share on other sites More sharing options...
J-rap Posted June 7, 2012 Share Posted June 7, 2012 I wanted to say that my husband had a major left hemisphere stroke a couple years ago, so I've done tons of research on this. EVERYTHING I've read has says that the prognosis for a child in a case like yours is EXCELLENT. Brains are just building their paths at that age, and though you will have to work harder to get the right side to take over the left side's jobs, it should function very well. It's all super encouraging. It's been a little harder and slower with my husband, because he was 50 when he had his stroke. Therapists are slowly rebuilding those language paths (and right arm and leg paths) again, on the right side. It takes a lot of intense, intentional effort, but IT IS HAPPENING, and apparently it happens much more easily with children. The key is repetition. Make sure you have good therapists, especially in the language/cognitive skills department. A good therapist can really make a difference. Blessings to you and your family as you go through this. It WILL be okay! Quote Link to comment Share on other sites More sharing options...
elfgivas Posted June 7, 2012 Share Posted June 7, 2012 :grouphug: what a journey. we'll hold you all in our hearts. out there somewhere is a therapy that i researched in depth a few years ago. can i remember what it is called? apparently not. sigh.... i will look. but it involves someone other than the client moving the client's limbs in the same motion again and again to build muscle memory and neural pathways. it can take up to four hours a day..... for months or years. but the success rate looked good. i do know someone who used it for one (or maybe two?) of her quads, and the results were amazing. but very, very hard work on the part of the parents and therapists. :grouphug: ann Quote Link to comment Share on other sites More sharing options...
Momof3littles Posted June 7, 2012 Share Posted June 7, 2012 :grouphug: what a journey. we'll hold you all in our hearts. out there somewhere is a therapy that i researched in depth a few years ago. can i remember what it is called? apparently not. sigh.... i will look. but it involves someone other than the client moving the client's limbs in the same motion again and again to build muscle memory and neural pathways. it can take up to four hours a day..... for months or years. but the success rate looked good. i do know someone who used it for one (or maybe two?) of her quads, and the results were amazing. but very, very hard work on the part of the parents and therapists. :grouphug: ann NDT? Quote Link to comment Share on other sites More sharing options...
mumto2 Posted June 7, 2012 Share Posted June 7, 2012 Nothing to add but :grouphug: Quote Link to comment Share on other sites More sharing options...
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