Hypotonia/Seizure Link

by Elizabeth Adams
(California)

My daughter has been diagnosed with Intractable Partial Epilepsy. This is our only diagnosis despite the fact that we have had chronic hypotonia since she had her 3 hour long status epilepticus. She was born full term via C-Section and received a 10/10 Apgar score. The only thing that was off at birth was Genu-Recurvatum (she got stuck with her feet by her face and her knees were bent backwards - more common in breech babies)


We did mild therapy every time she was breast-fed for 2 weeks and she was pronounced "cured" at that point. We started experiencing what we first thought was "colic" shortly after we went home which progressed to obvious seizures which took until her 3 hour seizure (at 3 months) to diagnose. Now she is almost two, her seizures are fairly well controlled but we still have hypotonia with no "diagnosis". We have done every genetic & enzyme test the geneticist could think of with no answers.

Anyone have similar experience with this? We are working with various therapists but I'm starting to also see signs of SPD or autism-like responses (ie, fighting to not have her hands touched inside or made to touch anything else, not looking straight at something - especially faces, enjoying but not fully involved in her environment). HELP!

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Dec 23, 2014
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another resource
by: Anonymous

Another resource to check out: www.masgutovamethod.com

This is a reflex integration therapy that is still fairly new to the USA and helpful.

Nov 05, 2014
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cannabis
by: Anonymous

Have you tried medical cannabis?

Feb 18, 2013
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Hypotoonia and other neurological symptoms
by: Anonymous

I've been reading all of your comments and wanted to share an alternative that i've discovered. I've gone the route of a Chiropractic Neurologist. Not your typical chiropractor and be sure that it is someone that studied the Carrick method. It is a way of repatterning the brain. Obviouusly everyones situation is different, so not a guarantee, but have seen incredible things happen. Google Dr. Ted Carrick or Carrick Functional Neurology. Good Luck!

Jun 05, 2012
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HYPOTONIA
by: Anonymous

My son is now 18 months old. He was diagnosed with hypotonia from birth and has support from physiotherapy, speech and language for his feeding and language skills, portage early years service, occupational therapy and lastly the orthotist for his boots to be specially made. All of this support is provided so he doesnt fall too far behind with his development. we have not yet found a cause for his hypotonia, desperately seeking.I find he sleeps a lot and struggles with his balance and mobility. He struggles to chew food and chokes. He hasnt really spoken yet saying car once. I find that although there is information out there it is repeated and fairly extreme in its examples. so for anybody struggling to understand what happened to your relatively healthy baby at 6 months old your not alone.

Aug 18, 2011
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hope this helps someone
by: Anonymous

I have a similar story, and the diagnosis is Cortical Dysplasia.

Aug 18, 2011
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Hope this helps
by: Anonymous

I hope this information can help someone. I have a friend whos daughter started having seizures at 3 months of age. Shortly after showed signs of hypotonia. Like many of you, experienced lots and lots of testing with absolutely no answer. Until maybe a few months ago, now 2 years old, she was diagnosed with Cortical Dysplasia. Hope this sheds some light on someone.

Mar 31, 2011
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Kari
by: Anonymous

Hello everyone So we went to Boston Children's hospital and found out that my child now 17 months has a Perioxosomal Disease, we don't know which one he has as of yet but we have also been through many different mitochondrial testing as well as alot of blood cultures but right now we still don't have any answers and are still waiting. Wish us luck. And good luck to all of you and your issues. :)

Mar 31, 2011
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Updates
by: Elizabeth

We are still experiencing small complex partial/absence seizures and clonis (not a seizure but caused by imbalanced or immature nervous system). However, we are currently exploring mitochondrial disorders as this is the direction her current stats point, despite the many mitochondrial tests that came up clean. Sometimes they are diagnosed by presentation in the absence of another diagnosable condition....Her mitochondrial type presentation is hypotonia, epilepsy, sensitivity and consequent "bad day" response to excessive heat, cold, lack of sleep, not frequent enough food/fluids, small virus, disrupted schedule, even an hour in the car... this will increase her seizure activity, clonis and wipe her our for days.

She is tube fed every 2 hours and without that she has no energy to even open her eyes. Still non-verbal, does not crawl, sit, or even consistently hold her head up. She is 4 1/2 yrs old. Mitochondrial disorders are treated with combinations of vitamin supplements and adapted diet & schedules. Frequent meals are a must and attempts to keep them from exhausting themselves very important. Anyway, wish us luck as we look for the next level of doctors to work with us, our current ones see the clues but don't have the experience.

Mar 21, 2011
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Nubaine
by: Kari

I did not have nubaine at all during my labor.

Mar 21, 2011
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Nubaine
by: UtahDad

Our beautiful little girl is fighting the same battle. Just curious if anyone else was given Nubaine during delivery while the baby was still in utero?

Jan 31, 2011
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We are having similar issues
by: Kari

My son is now 14 months old he has hyptonia, he can't hold his head, sit, speak he has also had seizures starting when he was 4 months old he had a seizure every month at the end of the month, it was a weird trend but unexplainable he is now on Kepra and he has been seizure free for 2 months now. My son has seen neurology, genetics, cardiology, ENT, pulmonologist, He has had every test you can imagine from MRI, C-Scan, spinal tap, genetics workup, and a muscle biopsy, all have came back normal. It has been very stressful My son also had a sleep study and found he has central apnea and obstructive apnea he is now on a bipap machine anytime he sleeps. I went to a Neuromuscular doctor this past week who is now testing him for rare diseases but those results will not come back for 2-6 weeks and there is no guarantee that it will give me a diagnosis either. I have been through all different emotions while these doctors just seem like oh well lets try this, or lets look at this, or we don't know if his hypotonia will every improve. It is very difficult thing to go through and I wish someone could give me some kind of answer but in the meantime I just love him and thank God for everyday I have him.




Sep 09, 2010
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carly
by: tricia

i have a 11 month old daughter (carly) who was born hypotonic and about 3 months later began having seizures, has been tested for almost everything and no answer we cannot stop the seizures and her hypotonia is not getting any better. she still cant hold her head up or eat or do anything at all but i have to come realize the doctors arent God and he is the only one who knows and all i can do is just love her for who she is, and enjoy every moment i can with her, she is so beautiful.. if you were to look at her you would not know anything was wrong.

Mar 06, 2010
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In the same boat
by: michelle

My son is 18 months old was born full term was the perfect baby born ever till he was 4 weeks ago he started having seizures problem that put him on 1 medicine till he was 6 months old then he got introduced to another medicine now he is 18 months old and on 5 medicine and he is 6 months behind due to keep having seizures. As a mother I have hardly no answer and I dont know why. When I ask a question they answer he half stepping. I know that there is a thing called mapping the brain that they can go threw and it helps to stop the seizure activity. Surgery is an option for my son have they ever mention it to you. My hearts and prayers are with you I know what you are going threw

Jan 23, 2010
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My son john
by: mandy hall

My son john is now 18mths old, and I have been dealing with what sounds like exactly what you are. He has sad one 3 1/2 hr seizure and another 5 hour seizure 2 mths after the first. But we are also dealing with the hypotonia and alot of testing between genetic and neuro drs. They keep telling me he is a neurological puzzle and it makes me so upset to see him go thru all of this testing but, i want some answers!!!! my email is msmithgst@yahoo.com if you have any info that could help me or any questions. His mri's and ct scans weere all normal to.

Jan 12, 2010
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Updates
by: Elizabeth

We are now gaining some control of the seizures with Zonegran, Traxene, and Phenobarbital. However, we are currently working on lowering the Phenobarbital as one of the main side effects is drowsiness, somnolence, and hypotonia (our main problem). The Zonegren has been filling in the seizure control blanks as we lower and she is already starting to perk up some. My advice to others with a hypotonic epileptic is to doublecheck which medication side effects you are dealing with. Sometimes (this is only if you haven't already tried everything and are still having seizure control problems) you can change to another medication that doesn't have quite the same side effects with some improvement. I say some because she is still extremely hypotonic, can't sit, crawl, talk, eat, etc. but she is definitely more alert and has a little more tone to work with in therapy.

We are down to one test - muscle biopsy for a muscle mitochondrial disorder. Her recent MRI showed a perfect brain (or whatever they call it), no damage, no grey areas, none missing etc. My daughter the question mark. My biggest frustration is when specialists shrug their shoulders and give up, we had an OT who said she couldn't do anything with her after only 3 sessions, she said it was because it would cost us to much with no real benefits. Our insurance actually paid for it though and we are currently doing water therapy with her with some results, always very small and hard to measure but what kind of life is it if you just lay around all day. We tried to work with our local school for further therapy options but they are really not able to deal properly with her level of disability (she can't even sit up straight in her adaptive equipment for very long). I'm a homeschooler so I am working around her strengths and giving her spurts of learning, therapy, and rest/play time. We are working with an OMT for pre-speech (the school only had a speech) and feeding strength (quality of life is important) and the water therapy. Also doing OT and PT with her myself but I am still looking for more therapists to work with.

I'm sure others have had the same problems with some of the "pros" the school wouldn't even give us OT or adaptive speech assessment even when it was recommended by the speech therapist and adaptive education consultant unless we had a teacher work with her in our home (she's only 3) and they felt that she needed the further assessments. Even then the OT only works on school skills, sitting in a chair, working with your arm - no independent sitting, crawling, walking... Anyway, long story, main point - you are the parent, you know your child, work for what is best for them no matter how many walls you hit.

Dec 10, 2009
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ALICIA
by: Anonymous

I have an 18 month daughter who has severe hypotonia and seizures. She was born at 41 weeks by emergency C-Section with her first APGARS at 2 and her second 7. We were release the 3rd day, being told not to worry she would pick up on things soon.

Alicia is not 18 months and cannot hold her head, support her own body weight, or even eat. She has a G-tube. She wiggles around, but thats as much as she can do, often wiggling around too much for her will result in seizures. She has been tested for various genetic tests. Doctor were certain she had a mitochondrial disease, but a later MRI proved different. Doctors now say they are testing for only very rare genetic diseases, but say they are stumped.

All I can do is hope for the best, even tho it does not look good for her, I would at least love to know what it is, then maybe I can put my mind at rest. I'm sorry for what you are going through.

May 05, 2009
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aden
by: Anonymous

My son has hyptonia and seizures. He is three now and the doctors have no idea why he is the way he is. Every test they have done has come back normal. I am so frustrated and confused. I want an answer. I don't feel like my sons doctors are meeting his needs. The seizures are not in control of.

In a way, I don't care because I am scared the medicine might just make him worse. I have seen those cases before. Sometimes I wonder "why me"? I am a good mother. So why? And then you look at those druggies or unfit mothers who are pregnant and have their babies come out perfectly fine. God is so unfair.

Jul 03, 2008
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IDIC 15
by: Anonymous

My daughter has seizures (infantile spasms) and has had since 6 months. She is also hyptonic and has autistic spectrum tendencies. Our neurologist did a test for angelmans syndrome but came back with a diagnosis of IDIC 15 a duplication of chromosome 15. I am sure that your geneticist has done this test but if not it may be a place to start. There is a great support group out there at www.idic15.org

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