Hey all! Looking for diagnosis of some kind of neurological disease, 6 yrs old sister

[Deegii]

Hey all! My 6 years old little sister has a neurological disease. We are from Mongolia and the doctors seem don't know exactly what kind of disease is this. They call it generally neurological disease. My sister barely speaks 1-3 word sentence and has physically so weak body. Sometimes she has convulsions which occurs right after when she is physically so tired doing activities like running, and other exercise. Also her left or right limbs don't move alternatively during a few hour or a day and occurs 3-5 times per week. Once a traditional medicine doctor said her spine was curved a little bit. In rare case her whole body loses control.

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I have some excel sheets which has 3-5 months record marked exactly when she loses control.

My questions are:
1. Can you help me find out relative topics to my sister's case?
2. If you had a case like this can you give me some advice?
3. Is there online services to have a contact with neurological doctor? (I sent emails to some hospitals but didn't get any helpful response).

[Earth Mother 2 Angels]

((((((Deegii)))))) ~

Welcome to BrainTalk!

We are not professionals here, so the best we can offer is advice based on our experiences and knowledge gained from research.

Your sister is adorable. Bless you for seeking information to help her.

Has your sister had any tests to determine what is causing her symptoms, including MRI, CT scan, EEG, sleep studies, blood work, especially for Vitamin B6 deficiency? Has she been evaluated by a Physical Therapist, a Speech Therapist, and a developmental specialist? Have any genetic tests been done?

Did your sister's mom have any problems during her pregnancy? Any problems at birth?

I am guessing that it may be difficult to get those tests in Mongolia, but that is where the search for an answer begins.

Based upon your description of your sister's behaviors and the videos you provided, I strongly suspect that she may have epilepsy.

Her staring and unresponsiveness could be an Absence seizure.

The weakness in her legs could be a symptom of an Atonic seizure.

Convulsions are known as Tonic Clonic seizures.

This is an excellent site for information about epilepsy, including treatment options:

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Please read the descriptions of the various types of epilepsy to see whether any of them apply to your sister. Then explore the entire site for a better understanding of epilepsy.

Treatment for seizures is typically giving an anti-epileptic drug (AED) or a combination. This requires an identification of seizure type, and dosage is dependent upon moving from a small dose to a larger dose to reach efficacy in controlling seizures. AEDs, like all medications, have a variety of adverse side effects. But, when they work, they can be effective in increasing quality of life.

If you are looking for U.S. medical institutions for help, I recommend that you write to the following:

Mayo Clinic

Johns Hopkins

Cleveland Clinic

The Ohio State University Wexner Medical Center

Keck Medicine of USC (University of Southern California)

Go to the website for each of these places, and find the Chief of Neurology for the institution, and email that person, as well as send a mail through the post office.

Unfortunately, these institutions can't help everyone in the World. They may not respond, because they receive too many requests like yours. Unless you are able to bring your sister to them, they can't be of much assistance to you.

Another thought is contacting Doctors Without Borders and other charitable organizations. You are in a remote location, so you may need help from a remote source.

Unfortunately, our Epilepsy and Child Neurology Forums here have very little participation. However, you can post in our Epilepsy forum to see whether it generates a response.

Only registered and activated users can see links., Click Here To Register...

Many neurological disorders are difficult to diagnose. Like my sons, no explanation can be found, so the disorders become idiopathic, the term used for undiagnosed conditions.

I hope that something I've shared will be helpful to you. Please return to let us know how your sister and family are.

Love & Light,

❤️❤️❤️❤️

Rose

*Virtual Hugs Are Germ-Free!


THANKS!

[Deegii]

((((((Deegii)))))) ~

Welcome to BrainTalk!

We are not professionals here, so the best we can offer is advice based on our experiences and knowledge gained from research.

Your sister is adorable. Bless you for seeking information to help her.

Has your sister had any tests to determine what is causing her symptoms, including MRI, CT scan, EEG, sleep studies, blood work, especially for Vitamin B6 deficiency? Has she been evaluated by a Physical Therapist, a Speech Therapist, and a developmental specialist? Have any genetic tests been done?

Did your sister's mom have any problems during her pregnancy? Any problems at birth?

I am guessing that it may be difficult to get those tests in Mongolia, but that is where the search for an answer begins.

Based upon your description of your sister's behaviors and the videos you provided, I strongly suspect that she may have epilepsy.

Her staring and unresponsiveness could be an Absence seizure.

The weakness in her legs could be a symptom of an Atonic seizure.

Convulsions are known as Tonic Clonic seizures.

This is an excellent site for information about epilepsy, including treatment options:

Only registered and activated users can see links., Click Here To Register...

Please read the descriptions of the various types of epilepsy to see whether any of them apply to your sister. Then explore the entire site for a better understanding of epilepsy.

Treatment for seizures is typically giving an anti-epileptic drug (AED) or a combination. This requires an identification of seizure type, and dosage is dependent upon moving from a small dose to a larger dose to reach efficacy in controlling seizures. AEDs, like all medications, have a variety of adverse side effects. But, when they work, they can be effective in increasing quality of life.

If you are looking for U.S. medical institutions for help, I recommend that you write to the following:

Mayo Clinic

Johns Hopkins

Cleveland Clinic

The Ohio State University Wexner Medical Center

Keck Medicine of USC (University of Southern California)

Go to the website for each of these places, and find the Chief of Neurology for the institution, and email that person, as well as send a mail through the post office.

Unfortunately, these institutions can't help everyone in the World. They may not respond, because they receive too many requests like yours. Unless you are able to bring your sister to them, they can't be of much assistance to you.

Another thought is contacting Doctors Without Borders and other charitable organizations. You are in a remote location, so you may need help from a remote source.

Unfortunately, our Epilepsy and Child Neurology Forums here have very little participation. However, you can post in our Epilepsy forum to see whether it generates a response.

Only registered and activated users can see links., Click Here To Register...

Many neurological disorders are difficult to diagnose. Like my sons, no explanation can be found, so the disorders become idiopathic, the term used for undiagnosed conditions.

I hope that something I've shared will be helpful to you. Please return to let us know how your sister and family are.

Love & Light,

❤️❤️❤️❤️

Rose

*Virtual Hugs Are Germ-Free!


THANKS!

Only registered and activated users can see links., Click Here To Register... I really appreciate your very detailed advice.

My mom also has some kind of neurological problems too. (Also don't know name of the disease .. oh crap)
But there was no problem during the birth. After the birth though, My sister diagnosed that she had a problem(In Mongolia called SHARLALT). I don't know exactly what it was.

My mom has some sort of life long neurological problem. At her middle thirties sometimes it occurs that her eye sights are just gone blank for a few seconds but nothing more she was just fine after the occurrence. After the birth it got worse and that she falls right after her eye sights gone blank. The doctors said her brain vessels got narrowed thus it results this fall off. After she fallen, she don't know what's going on around for 3-10 minutes. My sister was a always crying baby, too much care needed. And mom was working during the nights. She didn't get enough sleep for 2 to 3 years. And now, she forgets everything. Can you provide some sort of information to my mother's case, please?


I will try every possibilities I promise <3.

A warm virtual hug to you.

[Deegii]

By 'Oh crap' I mean oh jeez. Sorry if it was rude. Just too much netflix :')

[Earth Mother 2 Angels]

((((((Deegii)))))) ~

You certainly were not rude, so there is no need to apologize.

This is what I found about Sharlalt:

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Evidently, your sister had jaundice. This is yellowing of the skin as a symptom of a high bilirubin level in the liver:

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My son, Michael, was born with bilirubin as a result of a blood incompatibility between his and my blood types. He was placed under a lamp, with his eyes covered, where he received ultraviolet light to bring his level to normal. It took a week for his liver to recover.

Are there any other relatives in your mother's family, who have similar neurological symptoms? Your mother's symptoms also sound like seizures to me, and this could be a hereditary condition. Some hereditary conditions can skip generations, or it can affect one offspring and not another.

I'm not a neurologist, so there is only so much I can offer to help you. I have 50 years of experience with my sons' neurological issues, as well as sharing the experiences of thousands of Moms of children with multiple neurological conditions.

It would help me a little bit to know more about your sister's symptoms, what tests she's had and those results, and what the neurologist, who has examined her, says is the cause of her symptoms.

Is it possible for you to take your sister to another neurologist for a second opinion? I don't know how your health care system works. But, I would recommend seeing as many specialists as possible, including Physical and Speech Therapists. She also needs a complete developmental workup to determine her cognitive abilities.

It is unsafe for your mother and your sister to continue having these episodes. Every fall could cause potential brain injury, or a broken bone, etc. Every time they have these episodes, it is an assault on the brain, which can cause further damage. So, it needs to be diagnosed and treated by a competent neurologist.

Sending healing prayers and positive energy to you, your mom, your sister and your family. May you find the help you need.

Love & Light,

❤️❤️❤️❤️

Rose

*Virtual Hugs Are Germ-Free!


THANKS!

[Donna Thomson]

Hi Deegii and thank you for sharing the beautiful videos of your sister - she is adorable!
I agree with Rose and as the Mom of a 33 year old young man with cerebral palsy and epilepsy, I would guess (I'm not a doctor!) that the video of your sister lying down is showing an absence seizure. My son has those and they look exactly like what happens with your sister. I agree with Rose too that you will need a CT or MRI to diagnose the root cause of the neurological symptoms but I would ask about Ataxic cerebral palsy - Only registered and activated users can see links., Click Here To Register.... I wish you all the luck in the world to find a diagnosis and a treatment plan. Because your Mom has symptoms too, it is certainly worth asking about whether you can all have some genetic testing. On another note, I visited Ulan Bator in 1979 and I thought Mongolia was one of the most beautiful places I had ever seen! I wasn't too keen on the Kumis though LOL! Donna

[agate]

Welcome, Deegi!

I can't add anything helpful to what has already been said but I do recommend browsing around here at BrainTalk.