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  #1  
June 17th, 2011, 02:02 PM
Ever's Avatar Mega Super Mommy
Join Date: Oct 2008
Location: Ontario, Canada
Posts: 4,236
Hi everyone,

I posted in the "seizures" topic and now I think it's time I joined you officially.

We just found out in January this year that my daughter has Isodecentric 15q, which is a small "marker" chromosome made up of DNA from chromosome 15. This is why she had infantile spasms before, and she is globally delayed, has low tone and doesn't talk. She might never be able to talk, which is one of our major challenges right now. It seems like whenever she is upset it's a guessing game to figure out what she needs or wants. She will be 2 tomorrow, she is not walking yet but is getting there!

She also has a lot of charm, spunk and all my love! She's the light of my life. And for someone who's not even 3 feet tall and doesn't walk she's awfully good at getting into mischief!

I'm looking forward to getting to know you all.
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  #2  
June 19th, 2011, 05:08 PM
greenchild's Avatar Platinum Supermommy
Join Date: Jul 2006
Location: MN
Posts: 15,839
welcome!! I have no idea what you've all tried with your daughter but I wanted to weigh in

I wonder if she would benefit from the nightshade free diet & musculoskeletal therapy? Kaiden has down syndrome and it generally comes with some of the same things - global delays, low muscle tone, speech delays. He also had benign myoclonic seizures (also called Infantile Spasms) from 7 mo to 16 mo, and at 16 mo he was still very much like a 7 mo old. It was caused by nightshade foods - in his case it's a buildup of acetyl choline causing the muscle jerks - the glycoalkaloids in nightshade foods are acetylcholinesterase inhibitors. The really amazing thing was, although we were told the seizures would NOT cause cognitive delays, that all his delays were from down syndrome, he totally "woke up" once on the nightshade free diet and the seizures stopped. He has made so much incredible progress in the last year - and we just started the musculoskeletal therapy - it teaches the brain how to form new connections rather than relying on the old, damaged connections. Neat stuff - there are many similar therapies out there, the one his therapists are doing is called the masgutova method.

Hope that helps!!
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  #3  
June 19th, 2011, 10:09 PM
C&K'sMama's Avatar Platinum Supermommy
Join Date: Sep 2008
Posts: 6,150
Quote:
Originally Posted by Ever View Post
Hi everyone,

I posted in the "seizures" topic and now I think it's time I joined you officially.

We just found out in January this year that my daughter has Isodecentric 15q, which is a small "marker" chromosome made up of DNA from chromosome 15. This is why she had infantile spasms before, and she is globally delayed, has low tone and doesn't talk. She might never be able to talk, which is one of our major challenges right now. It seems like whenever she is upset it's a guessing game to figure out what she needs or wants. She will be 2 tomorrow, she is not walking yet but is getting there!

She also has a lot of charm, spunk and all my love! She's the light of my life. And for someone who's not even 3 feet tall and doesn't walk she's awfully good at getting into mischief!

I'm looking forward to getting to know you all.
Hi! I'm Alycia (25) mom to Kate and Carrie. Carrie is my special needs one but doesn't have an "official" diagnosis. The current theory is slow brain waves... anyway we feel you on the communication. We have a PECS system, a dynavox, we're working on sign and she's starting to verbalize and between all of these most days it's her crying and me guessing.

They said my daughter would never walk or talk. (Tier 5 neurology unit, some of the best neurologists in the country told me that she would never walk or talk in Nov 2010)

My Carrie can walk almost 60 feet and turn corners without falling and can verbalize 5 words. It's not just a case of "you never know" but doctors give you worst case scenario based on a syndrome, not a child. Off my soap box now. (she was older than 3 when she took her first step and when she said her first word)

I'm sorry about your frustrations, but I think this board has a great group of ladies and many of us can relate.
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Last edited by C&K'sMama; June 19th, 2011 at 10:15 PM.
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  #4  
June 20th, 2011, 07:55 AM
Ever's Avatar Mega Super Mommy
Join Date: Oct 2008
Location: Ontario, Canada
Posts: 4,236
Quote:
Originally Posted by greenchild View Post
welcome!! I have no idea what you've all tried with your daughter but I wanted to weigh in

I wonder if she would benefit from the nightshade free diet & musculoskeletal therapy? Kaiden has down syndrome and it generally comes with some of the same things - global delays, low muscle tone, speech delays. He also had benign myoclonic seizures (also called Infantile Spasms) from 7 mo to 16 mo, and at 16 mo he was still very much like a 7 mo old. It was caused by nightshade foods - in his case it's a buildup of acetyl choline causing the muscle jerks - the glycoalkaloids in nightshade foods are acetylcholinesterase inhibitors. The really amazing thing was, although we were told the seizures would NOT cause cognitive delays, that all his delays were from down syndrome, he totally "woke up" once on the nightshade free diet and the seizures stopped. He has made so much incredible progress in the last year - and we just started the musculoskeletal therapy - it teaches the brain how to form new connections rather than relying on the old, damaged connections. Neat stuff - there are many similar therapies out there, the one his therapists are doing is called the masgutova method.

Hope that helps!!
Thanks Greenchild! What is musculoskeletal therapy? Kailyn's getting OT and PT right now, plus early intervention, but no one's mentioned that one to me before! Were Kaiden's spasms muscular only or did he have an abnormal EEG? Kailyn had West Syndrome, I think.....she had an abnormal EEG (Hypsarrhythmia which is the classic brain wave formation for IS), the spasms, and delays. I think you need to have at least two of those to be diagnosed with West.

I spoke to our Neuro, Geneticists, and the dietician at our kids' hospital where she was treated and all of them said that there's no metabolic issues so she can eat anything and everything. She stopped having spasms after being treated with steroids so I don't know if any dietary changes would do anything for her as she's not seizing now?? Our Geneticist did say that IF she ever does have seizures again (God forbid!) she would be a good candidate for Keto. Her "awakening" happened once we got her off all her meds. Now she's active and very alert to everything.
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  #5  
June 20th, 2011, 08:04 AM
Ever's Avatar Mega Super Mommy
Join Date: Oct 2008
Location: Ontario, Canada
Posts: 4,236
Quote:
Originally Posted by C&K'sMama View Post
Hi! I'm Alycia (25) mom to Kate and Carrie. Carrie is my special needs one but doesn't have an "official" diagnosis. The current theory is slow brain waves... anyway we feel you on the communication. We have a PECS system, a dynavox, we're working on sign and she's starting to verbalize and between all of these most days it's her crying and me guessing.

They said my daughter would never walk or talk. (Tier 5 neurology unit, some of the best neurologists in the country told me that she would never walk or talk in Nov 2010)

My Carrie can walk almost 60 feet and turn corners without falling and can verbalize 5 words. It's not just a case of "you never know" but doctors give you worst case scenario based on a syndrome, not a child. Off my soap box now. (she was older than 3 when she took her first step and when she said her first word)

I'm sorry about your frustrations, but I think this board has a great group of ladies and many of us can relate.
Hi Alycia,

That's wonderful Carrie is walking and saying words! You're right, doctors do give the worst case scenario and it all really depends on the individual child. It really makes me upset that doctors feel they should tell you that your child will never do anything. Never say never! Ours didn't say that Kailyn would not do certain things, but they told us certain things would be more challenging. They told us she would walk for sure since she is progressing well that way, but speech may or may not come. I've gone through the Hanen program already which has helped with some communication but not a whole lot. The next step is supposed to start in the fall where we get assessed again to see what else we should do.
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  #6  
June 20th, 2011, 09:29 AM
greenchild's Avatar Platinum Supermommy
Join Date: Jul 2006
Location: MN
Posts: 15,839
Quote:
Originally Posted by Ever View Post
Thanks Greenchild! What is musculoskeletal therapy? Kailyn's getting OT and PT right now, plus early intervention, but no one's mentioned that one to me before! Were Kaiden's spasms muscular only or did he have an abnormal EEG? Kailyn had West Syndrome, I think.....she had an abnormal EEG (Hypsarrhythmia which is the classic brain wave formation for IS), the spasms, and delays. I think you need to have at least two of those to be diagnosed with West.

I spoke to our Neuro, Geneticists, and the dietician at our kids' hospital where she was treated and all of them said that there's no metabolic issues so she can eat anything and everything. She stopped having spasms after being treated with steroids so I don't know if any dietary changes would do anything for her as she's not seizing now?? Our Geneticist did say that IF she ever does have seizures again (God forbid!) she would be a good candidate for Keto. Her "awakening" happened once we got her off all her meds. Now she's active and very alert to everything.
His EEG showed something abnormal, I don't remember specifically what it was - they told us it was most likely benign myoclonic seizures but to watch for any regression in case it was actually west syndrome. He didn't regress, but didn't make much of any progress either and all I got told was "of course he's going to be delayed, he has DS". They also were adamant it had nothing to do with diet although I insisted to the neuro that certain foods caused seizure spikes. In his official report to the pedi, he wrote "I doubt an underlying metabolic abnormality". It's too bad neurologists don't talk to nutritionists . . . THEY know that nightshades can cause muscle jerks/spasms. It's noted in a study done on potatoes regarding IBS.

I wouldn't worry about it if she's thriving now but if she ever does start having the spasms again, then I'd definitely look into it.

The musculoskeletal therapy looks at teaching the brain how to form new pathways, and once the brain learns how to do that, new activity follows, leading to better motor, speech, & coginitive skills. It has to do with reflexes, positioning . . . it's really interesting! It's not just for DS, but for anyone at all and especially those with brain injuries, CP, etc.

Here's a link to the one his therapists are doing: Svetlana Masgutova Educational Institute they are also doing myofascial release, and I've personally been doing some work on him based on ideas about energy flow thru the body from reflexology, acupuncture/acupressure, chakras, and taoism. Fascinating stuff from many different cultures!

This is also one that I'd love to get a book on: Naturally Better Kids | Resources for parents to help their children be at their best, naturally, it's right along the same lines.

There's also the Alexander technique: What is the Alexander Technique? and I know there are a few more techniques/methods based on this one, but I can't remember the name of them.

We're also looking at doing dolphin therapy, either via CD or actual visit when he turns 3 for additional speech therapy. I figure the CD isn't too expensive, and can't hurt. Dolphin Therapy

Can you tell I'm leaving no stone unturned
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  #7  
June 22nd, 2011, 06:14 PM
Ever's Avatar Mega Super Mommy
Join Date: Oct 2008
Location: Ontario, Canada
Posts: 4,236
I honestly think ALL doctors should be required to study nutrition! Its the key to overall health and most western doctors just want to push more meds to cover up something that could be helped by working on a diet.

Thanks so much for the info, I've got some reading to do and then I'm going to talk to our therapists.
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