RE: Question about disautonomia

[Guest guest]

Max,

I find your e-mail extremely interesting. My daughter is completely dependant on a BI-PAP when ill. Adding oxygen to the BI-PAP seems to help very little. At one stage the hospital nurses had her on 15 litres of oxygen and her sats levels which were very low were not helped at all.

She is thought to have autonomic dysfunction.

You mention a Dr Bach as saying autonomic dysfunction does not require the use of 02.

Could you please give me more information on this.

The hospital was mystified as to why the high oxygen was not helping her at all.

Thank-you,

.

Re: Question about disautonomia

>We finally got oxygen when he went on hospice b/c it is pretty standard>for >them and he used it every night and it seemed to help a bit.Deb and all,What I am learning is that in SOME cases, oxygen is misused when in fact, the person needs ventilation. Oxygen can lead to a faulty sense of oxygenation via oximetry. Without the 02, the oximeter is far more accurate and reliable. The problem with oxygen is that it decreases respiratory drive.I'm not trying to start a debate among those who use oxygen....my son used oxygen for 11 years in addition to ventilation. But what has been happening to him over the last year is an increase in diaphragmatic spasms, awake state apneas (whereas he used to only have sleep state apneas only), and a dramatize increase in desaturations. We still have 02 in the house and we still use as needed. But autonomic dysfunction does not require the use of 02 (according to Dr. Bach). Lung disease may require oxygen. My son has reactive airways and I suspect that is why sometimes we still have to use the 02. But he is more appropriately managed via ventilation and feels better with his sats slightly lower than they used to show via oxygen. He is vented closer to round the clock than we like, but he doesn't care as long as he feels better...and he will tell you so too. He is vented with volume ventilation because pressure ventilation gives him horrible and quick headaches as well as a ton of gas.I hope this info is helpful to someone who may be needing a change in care for themselves or their child.maxPlease contact mito-owner with any problems or questions.

[Guest guest]

Darla,

I thought one of the classic symptoms of mito was that the symptoms fluctuate so much? Why do these medical people tell us one thing and write it in their medical journals and then when they see us or our kids say that's not so and no one else ever does the same thing? They even write in detail why it happens! This has been so true in our family too. Sometimes we wonder if we have anything wrong and other times we are desperate to find help before it is too late.

Question about disautonomia

Asenath seems to fluxuate in her severity with the disautonomia issues. She will have a real bad month where her heart rate and breathing patterns are terrible and apnea monitors set off tons and then she will have 1-2 weeks where she actually does pretty well and no monitors go off. Has anyone else had this with there kids? Her temperature does the same fluxuations too. The sleep doctor at Mayo claimed that if there was any sleep problems with Asenath that they would happen every night the same. I totally disagreed with him obviously because I live with my daughter and see how drastic her changes can be from day to day or week to week. Lack of sleep and illness increase the severity for her. She has even had weeks where her breathing has been very labored during the day with little exertions and then times where she had no problems with the issues. Her therapists have been wonder! ing about how she fluxuates with these issues as well. Love to hear your experiences with this issue!

Darla: mommy to AsenathPlease contact mito-owner with any problems or questions.

[Guest guest]

Darla

I remember when was closer to the beginning of his illness...maybe for the first year (he was only sick 18 months that we knew of), he would have a good week and then a bad week. During the good weeks I would convince myself that i was going crazy and nothing was wrong with him. During the bad weeks I would go crazy with research and trying to get the drs to listen and so forth. So there's that thing...

about the sleep study...you can do what they call an overnight oxemetry which is a sat monitor that prints a reading every six seconds I think...you can do it for several nights in a row and also can request it again when she is effected with another illness (or heading for a crisis). It might give them a better idea of what you are seeing. Our sleep study only showed some hypopnea but then when we did the oxemetry, his number were more telling and Dr Korson said it showed he had central apnea/hypopnea which was caused by the dysautonomia. Unfortunately the Pulmonologist here wouldn't order oxygen b/c he didn't understand the dysautonomia even though Dr Korson tried to convince/teach him. We finally got oxygen when he went on hospice b/c it is pretty standard for them and he used it every night and it seemed to help a bit.

deb

[Guest guest]

Darla,

can be fine for quite a while and only have mild issues

(temp and pulse) issues. But when she is ill (viral or bacterial) her

dysautonomia is off the charts. It is times like these when she has

ended up on o2 and Iv fluids.When she was in the hospital for a staph

infection her blood pressure bottom out and we had to give bolus of

Iv fluid and put her on o2, though she is not on o2 at home. Her temp

also goes very low (93.8) when she is ill after the intitial spike

because of the infecton. their seems to be problems other times too,

but only mild like when she is exhausted. I think with mito there can

be these changes. I don't think that if it one way one day that it

necessarily will be the same the next...nothing is.

Dawn

[Guest guest]

>We finally got oxygen when he went on hospice b/c it is pretty standard

>for

>them and he used it every night and it seemed to help a bit.

Deb and all,

What I am learning is that in SOME cases, oxygen is misused when in fact, the

person needs ventilation. Oxygen can lead to a faulty sense of oxygenation

via oximetry. Without the 02, the oximeter is far more accurate and reliable.

The problem with oxygen is that it decreases respiratory drive.

I'm not trying to start a debate among those who use oxygen....my son used

oxygen for 11 years in addition to ventilation. But what has been happening to

him over the last year is an increase in diaphragmatic spasms, awake state

apneas (whereas he used to only have sleep state apneas only), and a dramatize

increase in desaturations.

We still have 02 in the house and we still use as needed. But autonomic

dysfunction does not require the use of 02 (according to Dr. Bach). Lung

disease may require oxygen. My son has reactive airways and I suspect that is

why

sometimes we still have to use the 02. But he is more appropriately managed

via ventilation and feels better with his sats slightly lower than they used to

show via oxygen. He is vented closer to round the clock than we like, but he

doesn't care as long as he feels better...and he will tell you so too. He is

vented with volume ventilation because pressure ventilation gives him horrible

and quick headaches as well as a ton of gas.

I hope this info is helpful to someone who may be needing a change in care

for themselves or their child.

max

[Guest guest]

My girls display extreme variability in their signs/symptoms. It is

not unusual for either to go one or two weeks without an apnea or

heart rate related alarm. Then we seem to get hit with many for a

period of time. It took several nights of sequential sleep studies

to capture the events we had been dealing with at home for the docs

to determine what was happening and how to treat. We have to do the

same thing with home oximetry (when using that method to justify use

of oxygen for the insurance industry). We see similar patterns with

almost all of their signs/symptoms, ie temperature control,

dysmotility, headaches, atypical movements. It just seems to be the

nature of the beast. A single, isolated night in a sleep lab means

nothing in this disease. If it was a good night, it just happened to

be a good night. The same study conducted a night or two later could

paint a totally different picture.

[Guest guest]

Darla,

I don't know the "why" but I do know does the same thing.The last month or so she has needed oxygen nearly every night,sometimes even during the day when she sleeps.She temp,which had always been around 95,has suddenly started staying around 99.She can be sitting in the chair,doing nothing,and her face will get blood red,I take her temp and it's up to 102. Her heart rate may be 120 or it may be 49.No rhyme or reason.

has mito encephalopathy,every thing affects everything,if that makes sense.

, Mom to

Original Message-------

From: Mito

Date: Tuesday, October 14, 2003 01:49:09 PM

To: Mito

Subject: RE: Question about disautonomia

Darla,

I thought one of the classic symptoms of mito was that the symptoms fluctuate so much? Why do these medical people tell us one thing and write it in their medical journals and then when they see us or our kids say that's not so and no one else ever does the same thing? They even write in detail why it happens! This has been so true in our family too. Sometimes we wonder if we have anything wrong and other times we are desperate to find help before it is too late.

Question about disautonomia

Asenath seems to fluxuate in her severity with the disautonomia issues. She will have a real bad month where her heart rate and breathing patterns are terrible and apnea monitors set off tons and then she will have 1-2 weeks where she actually does pretty well and no monitors go off. Has anyone else had this with there kids? Her temperature does the same fluxuations too. The sleep doctor at Mayo claimed that if there was any sleep problems with Asenath that they would happen every night the same. I totally disagreed with him obviously because I live with my daughter and see how drastic her changes can be from day to day or week to week. Lack of sleep and illness increase the severity for her. She has even had weeks where her breathing has been very labored during the day with little exertions and then times where she had no problems with the issues. Her therapists have been wonder! ing about how she fluxuates with these issues as well. Love to hear your experiences with this issue!

Darla: mommy to AsenathPlease contact mito-owner with any problems or questions.

[Guest guest]

It is nice to hear from someone who has experience with these issues and feels the same as I do. Asenath can really do some weird stuff with her breathing at times and then appear quite well at other times. I know we have discussed her bad times on the phone. Since she has been on the Prednisolone these past few weeks she has been doing quite well. Occassionally her sats drop down to the mid 80's and I hear the loud exhales or uneven breath patterns, but her apnea has not been very bad at all. I am wondering if the steroid has anything to do with it at all. I think I am having wishful thinking that maybe if the steroid is working to open her arteries, that maybe it could possibly haelp in this area as well. Who knows? I would love it to be true. Darla: mommy to Asenath Question about disautonomia Asenath seems to fluxuate in her severity with the disautonomia issues. She will have a real bad month where her heart rate and breathing patterns are terrible and apnea monitors set off tons and then she will have 1-2 weeks where she actually does pretty well and no monitors go off. Has anyone else had this with there kids? Her temperature does the same fluxuations too. The sleep doctor at Mayo claimed that if there was any sleep problems with Asenath that they would happen every night the same. I totally disagreed with him obviously because I live with my daughter and see how drastic her changes can be from day to day or week to week. Lack of sleep and illness increase the severity for her. She has even had weeks where her breathing has been very labored during the day with little exertions and then times where she had no problems with the issues. Her therapists have been wonder! ing about how she fluxuates with these issues as well. Love to hear your experiences with this issue! Darla: mommy to AsenathPlease contact mito-owner with any problems or questions.

[Guest guest]

>

>You mention a Dr Bach as saying autonomic dysfunction does not require

>the use of 02.

That isn't what I said, but he would likely have some things to say in regard

to your child's use of 02. There are times that 02 is necessary and Dr. Bach

is the first to admit that, but at times, it is used in situations when in

fact, ventilatory support is needed and 02 instead of ventilation makes the

situation worse.

My child has three components going on: 1) autonomic instability 2) reactive

airways, and 3) hypoventilation due to neuromuscular weakness. We have 02 in

the house and take it everywhere. 02 has saved my son's life on many an

occasion. Just a couple of weeks ago his sats dropped suddenly to 66% and he

was

blue...I used 02 in conjunction with ventilation, but had he been on his vent,

he would have never gotten to 66% to begin with.

Primarily, 02 is used on my son only for reactive airway or lung disease

related (some docs say he has broncopulmonary displasia). Since using increased

ventilation, he has had only one diaphragmatic spasm. I can't tell you what

that means to us...those spasms were getting scary.

>

>Could you please give me more information on this.

I'll email you off list.

Max

>

>The hospital was mystified as to why the high oxygen was not helping her

>at all.

>

>

[Guest guest]

Max,

I have a question, what do you mean when you say "ventilation"?

's last chest x-ray shows the base of her lungs are collapsing.Just this past week we started precussion treatments.When she breathes she seems to also use her stomach muscles, looks very odd. The best way I can describe it is like the ripple affect you see when you sail a rock over the top of water.

Over the last month or so she seems to be needing the O2 on a much more regular basic.I usually start at 1 litter and go up if needed.Yesterday the home health nurse suggested we keep it at 2 litters anytime she is on O2,I feel this is unnecessary if 1 is enough.She also wanted to know how I felt about the possibilty of Ashey having to be on a ventilator.

also has signs of disautonomia,irregular heart rate,temp,etc.

Thanks,

, Mom to

PS

I am finally recieving e-mail again. YEAH

-- Re: Question about disautonomia

>>You mention a Dr Bach as saying autonomic dysfunction does not require>the use of 02.That isn't what I said, but he would likely have some things to say in regard to your child's use of 02. There are times that 02 is necessary and Dr. Bach is the first to admit that, but at times, it is used in situations when in fact, ventilatory support is needed and 02 instead of ventilation makes the situation worse. My child has three components going on: 1) autonomic instability 2) reactive airways, and 3) hypoventilation due to neuromuscular weakness. We have 02 in the house and take it everywhere. 02 has saved my son's life on many an occasion. Just a couple of weeks ago his sats dropped suddenly to 66% and he was blue...I used 02 in conjunction with ventilation, but had he been on his vent, he would have never gotten to 66% to begin with.Primarily, 02 is used on my son only for reactive airway or lung disease related (some docs say he has broncopulmonary displasia). Since using increased ventilation, he has had only one diaphragmatic spasm. I can't tell you what that means to us...those spasms were getting scary. >>Could you please give me more information on this.I'll email you off list.Max>>The hospital was mystified as to why the high oxygen was not helping her>at all.>>