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Urgent !!!!inborn mitochondrial related disorder

our daughter is in critical condition. She is 8 months old
She has been in the ICU dependant on a respatory ventilator, she has been there since 10 days now. They also have feeding tube on her.
She was found in the crib almost unconscious.
The doctor's have diagnosed her with a rare disorder.
A mitochondrial disorder has been detected, an exact gene identifying the cause has not been identified. Her ability to produce energy has been greatly affected. They say her brain has incured alot of damage. She is mostly always sleeping, has stiff muscle tone.
Based on this information, please tell us what we can do. What we can give her to treat her. And is there medication that can help her brain funtionality.
Desperately waiting for a reply.
  godbless on 2006-04-18
This is just a forum. Assume posts are not from medical professionals.
docs diagnosis icu?

what was occurring with child just prior to this occurance?please explain

ned to know total healthhistory of child after birth--meds used and such;illnesses...etc

also need know health state of mother during pregnancy..illnesss;meds used/using...etc
also during labour/birthing?method of birh?drugs used?what complications?

ned both biological parents health history ..and family tree illnesss;alcoholics;drug users;...etc

strat with this
John Stanton last decade
Thankyou for your reply. Well firstly it was a pediatric neurologist who diagnosed her, with some consulting with radioligists. There was no other neurologists whose consulting involved.

Second question's answer. The baby was a normal active baby, healthy development, with the exception that she had not starting sitting up on her own, she did not transfer toys from one hand to another so readily.
She rolled over on the floor, but would get stuck after a while, and scream alot.
She was late for one whole set of shots, i beleive the 4 month shots. She had her 6 month shots. During the night before the ambulance came, she was a little cranky around 4-6pm. 6:30pm was the last time i nursed her.....
She slept until i found her at 11:30pm limp not breathing much, almost blue in the face.
I had been checking on her, she was breathing then. She would make a sound, by the time i would go in she would be asleep.

Durring birth, it was an all natural birth, no meds used.
I was 10 cms dilated ready to deliver, when i arrived at the hospital, the doc had not arrived so i had to somehow wait for 15 minutes to deliver. It was tough !!!!! But overall great experience.
She was a little on the small side, 6 lbs and 6 oz, my other children were 8.5 and 7.5 lbs.
During my pregnancy, i used no drugs.
My husband and i are healthy people. My mother in law has many allergies. My fathyer in law dies of a heart attack.
From my side my father is a heart patient. He has high bp, is diabetic.
One thing to note is that my husbands niece ( sister's daughter) passed away recently two month's after she was born. She was born premature, but was doing really well. Until one day she Stopped nursing was turning cold. She died at the hospital the same night.
So it most definately could be related. The doctors in her case were not able to find a cause????
We have no history of acoholics, drug users etc...
Thankyou for all your help in advance.
godbless last decade
only 4 month and 6 month vaccination ?corect?
what exact vaccinations given?

what age exact--the night --the ambulance come?

what occur just prior to mother?emotion trauma ;fight;quarrel;anyhthing can think of ?

child was not tretaed for any ilnesses at all before the episode occurred?please explain

mother was not treated for anything at all from birth tobefore episode occured?please explai

what exact meds being used at this time for child?
please describe all symptom charactristics of child currently occuring?

how readily accessable are homoeopahic remedies to you?
John Stanton last decade
Sorry for the late reply, I was at the hospital all day. In answer to your questions I can give you details of vacinations later on, I feel they were correct.
The baby was 7.5 months when the ambulance came.
For the third question I think you mean is what my mental status was before this occured, or during??? Well I will answer both.
Before the baby went into this state I was fine, there was no argument, no quarrels. If you can explain to me how that may be connected I can think some more. I was under a lot of stress since I was volunteering in a high stress job. I had been like this for a few months. More tence nowadays since there were deadlines to meet etc..
But the night of, I was ok.
During the incident I obviously was in shock, I panicked for 2 secs and then called 911. I started asking God to help us...
I had not had any health problems of any kind. I had stopped taking my multivitamins though. I also have thallesemia minor. Which is usually not a problem. Only sometimes my energy would get real low,
When I'm hungry I get really irratable. Nothing major.
I was also breast feeding the baby every 2-3 hours.
The initial medications they used were to treat possible menangitis. They also gave her sodium drips. Phenabarb and three other meds. adavan I think, for pain/posible seizure activities.
The seizures were questionable. It did not show up in the eeg test.
She was also given urine medication to help get more urine excretion. Since her body was quite swollen.

The current sypmtoms are that she is clenching her fists. Most of her body is stiff, she has some movements but they think that they are mostly involuntary movements (with the exception of few). She is not opening her eyes. when they test her eyes with light, they are sluggish in movement, dilated, not very reactive.
She trys to reomve the respirator with her fists sometimes. She shows cycles of sleep and awakeness. She is rarely sedated, yet she still keeps her eyes closed. Her heart rate goes to the 170-180's if we talk too much around her. Or if she is agitated. They have put a PICC line in today. They will remove all other peripheral IVs, and keep only the PICC line.

The neurologist believes that she has suffered severe brain damage throughout her brain and her chances of recovery (being able to function normally) are none.

Based on some postings on this group, we've started giving her a bit of Arnica 1M by putting it in her mouth (for brain recovery). (We've dissolved the little tablets in a bottle of spring water as mentioned by one of the posters).

They have lowered her ventilator level in the hope that she might at least pick up breathing on her own. She breathes partially on her own when is awake. Otherwise when she is asleep, she doesn't breathe much on her own.
I can give you any kind of information you need. Please let me know.
Thankyou again.
godbless last decade
stop arnica.

read all carefully and answer all--dont skim read--prin out and taketo hospital with you..be thorugh as possible..

need to know exact meds putting into child a this time..

child use to clenching fists before this ?during sleep in past?or is this first time ever sen clenching fists? is thumb inside or outside rest of fingers? how much tension on grip (gently try to open and take note)?any discoloration in hands/fingers?

whta EXACT involuntary movements observed?note which side of body also?
what is body posture at this time?wil child readjust unconsciouly when moved to another positioN?

any perspiration anywhere on body?explain

phenabarb a problem --if ekg show no reason for use---get doctor look careful again and get her off if no valid reason use..

explain the swelling mentioned---as before compared to now...

again how available are homoeopathic remeides to you?
John Stanton last decade
explain what you mean by "if she is agitated"?? how do you know agitated?

what exact part of body is not stiff?what exact part that is stiff?explain

child make any noises?ANY AT ALL?if so what seem trigger?

what is response of child when only mother speaks softly to her?explain


start treatment--give single dose opium 1M now.!!!.

get her off every med that is not vital also!!! i leave this to your discretion..

if no access to opium 1m --then wont be able to get for a while---then either i send from my stock or from pharmacy near me send to you express--mail..need email me if cant get--we cant dotle in this case----
John Stanton last decade

no wory about chage for remedy..i take care of---ned get opium 1m into child immediately...at least initiate vitalness back --and then from there---we access..
John Stanton last decade
Thank you very much for the reply. I'll take the print out with me to the hospital in the morning.

We have a few places in the city that claim to have homeopathic medicines (like Whole Foods). I'll call them in the morning.

If they do not carry it, I'll send my address to you for express mail. I promise to send the payment asap.
godbless last decade
i dont care about the money..

also mother most like need pulsatila --for trauma abrupt stoppage of breastfeeding---as lond as has not gone on medication of any sort due to trauma...
let me know mother's state of health at this time---
John Stanton last decade
if no opium 1m---then 200c...even 30c if allthey have
John Stanton last decade
I have not been able to find any strength of opium in local stores. I have sent you my contact info for via your personal email.
godbless last decade
i didnt recieve an email..
John Stanton last decade
no email from you yet?

no informtion concerning past questions?

and no opium in potency availbale in your city?

well second choice--hmmm

maybe cuprum--hyos;nux-m; acon...sulph--i'm thinking....
John Stanton last decade
I have sent another email with my contact. I'm going to list all the medicines first:

1) Co Eznyme Q10 (B Vitamin Enzyme)
2) L Carnitine - Amino Acid
3) Thiamine - B Vitamin
4) Riboflavin - B Vitamin
5) Pepcid
6) Fer In Sol (Iron Supplement)
7) Spiraonalactone - diuretic
8) Lasix - dieuretic
9) Phenobarbitol - we have asked the doctor to remove this medicine and they have agreed.
10) Potassium Chloride
11) Sodium Chloride

Here current conditions are as follows:

1) She's moving her legs in a sort of bicycle movement. Neurologist think that's a reflexive movement. At times she moves one leg at a time, which seems more purposeful movement.
2) She's holding her hands clenched close to her chest. She didn't do it before. The thumb is inside the fingers.
3) They have just removed the ventilator and she's now able to breathe on her own (Thank God. Its a big relief).
4) After removing the ventilator, we heard her faint cry (or attempt to cry) for first time in last two weeks. She hadn't made any sound in last two weeks.
5) For the first time today, we saw her trying to look with her eyes towards me when I spoke to her. However, doctors commented that she probably can't see because her eyes don't respond to light.
6) She does seem to respond to touch and is comforted by holding her when in pain.
7) Her facial expressions show signs of pain or discomfort at times (for example when her diaper is dirty).
8) She's being tube fed a formula as well as breast milk.
9) They are not sure at this point if she can be mouth fed but will evaluate soon.
10) They did another MRI yesterday and believe wide spread permanent brain injury as a result of the metabolic disease (suspected to be related to mitochondria). However, the diagnosis is not confirmed yet and they are doing genetic tests to confirm it.

10) Haven't seen any perspiration

11) The face seems swollen a bit as well as her feet. The swelling in her feet has gone down a bit in the last two weeks but face is more swollen than before.

12) Her neck, shoulder are stiffer than her legs. Her legs/feet were stiff earlier but have loosened a bit now after they took out the IV's.

13) She's got one PICC line connected to her right arm and one peripheral line connected to her right leg.

14) Before this incident, she only had ear infection once and a cold once. I didn't take any medications during her birth or my pregnancy.

Please let me know if I didn't answer any questions.

I'll check on the alternate medicines suggested in the local stores.
godbless last decade
ok recieved email--remdy is on way..

looking like cuprum --but first give opium in potency i sent..single dose...
John Stanton last decade
post office tell me wont be there til 12: noon 4-21-06-


give single dose Hyoscyamus niger 1 M..--mix 2 pellets in 10 tablespoons water and give teaspoon dose (or whatever she will able take wihout discomfort her)..

when she comes around may need have aconite 200c on hand ...---when comes around and when sensibility revives--she wil most like behave extreme --no matter what do not let them medicate her--to calm--give the aconite---this will be healing process that must not be interrupted...if interrupted take chance of furher damage...
John Stanton last decade
Thank you so much for sending the medication.
She is off the ventilator. However she had some seizures so they started the seizures med's again. They will evaluate again on Monday to see if her seizure med's can be removed.
Her swallowing reflexes are not functional yet. A few drops are probably safe but teaspoon levels are not.
W've given her one doze of Opium.
I will order the other meds online. The only medicines that I could find locally were cuprum metallicum 30c, Aconitum Napellus 200ck, and Arnica Montana 1M _ all in tablets

Thank you again for your help. We really appreciate your assistance at this difficult juncture in our life.
godbless last decade
John Stanton last decade

We've received the following medicines from the online pharmacy, in addition to Op that you sent:
Hyoscyamus Niger 1M
Aconitum Napellus 200C
Cuprum Metallicum 1M

All are in liquid dilutions.
Let us know if we need to repeat Op dosage or give any of the other med's above and in what dosage.

Also, if any other meds might be needed in the future, please let me know so that we can order them.
Her current condition is as follows:

1. She is showing more emotions (mostly crying).
2. Her muscles are not as stiff as before and she seem to make some slight purposeful movements with her hand and foot. She occasionally tries to move her head to follow a sound. The movements are generally sluggish and slow.
3. She is soothed by touch or talking to her in sweet voice.
4. She failed gag/swallow tests and thus she's got a G-tube now for feeding. The nose tube has been removed (since it was her 4th week with it and she seemed to be discomforted by it quite a bit).
5. She showed some signs of seizures again so seizure med's continue.
6. We are hoping that we might be able to take her home in the next week or so.
7. She does open her hands more often now than before.
8. She grunts quite a bit when awake with each breath. This has lessened a bit after removing the nose tube.
9. The tests for mitchondria has been inconclusive so far.
godbless last decade
eyes open?haa she open them aat all?

hands still clenching as before?

what exact changes once seizure medicine startd?
crying occur after?
John Stanton last decade
Yes she does open her eyes now when she's awake. Not sureif she's actually able to see anythig but does seem to move them slowly.
Her hands are clenched most of the time but she does open them sometime. We haven't noticed any specific changes after seizure meds except that she's not showing seizure like activities (raising her arms up in the air, for example). I believe the dosage for seizure meds are low at this point.
godbless last decade
Also she cries when uncomfortable. (diaper changing or in one position for a long time).
godbless last decade
what exact symptomlgy and accompanying symptoms--in deail of seizures--use the last as an example---BEFORE ANTI_seizure given
John Stanton last decade
Since she has been on the anti-seizures continously for several days now, we haven't seen some of the symptoms seen before. The symptoms she was showing earlier were raising her arms, eyes wide open. Also she would show cycles of moving her mouth (as if eating) followed by yawns.
godbless last decade
info is getting vaguer--mybe no time to write in deatil..that is ok--i understand worry of child....i am starnger to you--know child less--and i havetime check info--so be detailed and very exacting in details...from color of skin to stools passed -crying with eyes open...positoning of body...help me help you...if no need i again say i understand...
John Stanton last decade

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