Re: pacemaking-Anne

[Guest guest]

I can't believe how suddenly he went down hill. We have had problems

with both girls' heart rates but nothing is ever found wrong during testing

with ultrasound or strip testing. We have never done the holter monitors

and thankfully both girls seem to be erring on the tachycardia rather than

the brachycardia for the last several months. We have had times where

Zipporrah was hospitalized for a viral attack and the monitors and nurses

noted low heart rates down to the 20-30 bpm range for several hours. We

found her rate would get much better only when I would lay with her but once

I got up it would again drop. Asenath has also had time periods, mostly

when ill, where her heart rates would drop real low. Noone seems worried

about their hearts though. They both do wear pulse-ox monitors and Asenath

wears the apnea monitor as well. The vascular problems (Vasculitis) wasn't

the reason Sam passed away I know, but do they think it affected anything to

do with his heart at all? There are only a few of us with kids with the

problem and so when Sam passed it really shocked and saddened me. I am glad

you are able to share some of your advice in this area with us, even during

this hard time.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org (a

photo look into Mito)

Darla: mommy to

Asenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomia, SID, global delays, cyclic vomiting, bladder

issues, some wheelchair use, eye issues, gastric emptying issues...

Zipporrah (17 months) Mito, strokes, neuro-motor planning, SID, GERD,

dysphasia, G-tube fed, speech delays, extreme fatigue, aberrant subclavian

artery, disautonomia, hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (17)migraines, sensory issues, & some evidence of SLE's...

Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4), Marquis (3)

Joey (15 months) with hydrocephalus, dysgenesis of the corpus callosum,

encephalomalacia & leukomalacia, G-tube, GERD, immobile, severe dev. delays,

left hemiplegia (arm)...

(15 months) SID, dev. delays, right hemiparesis issues...

pacemaking, etc. _Joanne

> Joanne:

>

> what was the situation that led to a pacemaker for . This has been

> discussed as a potential intervention for Z - not now but perhaps if

> things get worse. His HR fluctuates between 65 and 130 at rest. With

> activity it does not get any higher and in fact often just stays in the

> 90's - this of course is not perfect that he has no response. There are

> days when he is very exhausted and those days his HR will jump 30 beats

> just from laying down to a standing position - without even walking. I am

> sure this is all just signs of his dysautonomia worsening. That his HR

> can get that high at rest when he is on a beta blocker continuous infusion

> (labetalol) is odd in and of itself.

>

> I was just shocked that can maintain a heart rate of 12, 20, etc

> like you described and not need intervention. if I understand correctly

> her pace maker is not working so does she self correct or what do you do

> to get her heart rate to go back up. The night Sam died his heart rate

> dropped - something he had not done since infancy. I have always set our

> monitor limits very conservatively - 60 for the low HR. So as soon as it

> alarmed - for a rate of 58 - I actually called the paramedics. I have

> never called 911 and a HR of 50 is not bad but when I looked at him I just

> knew something was very wrong. Things went downhill and he had passed

> away 1 hour and 30 min later. It was too fast. I guess that is why the

> HRs you mentioned seem so alarming to me - and yet it sounds like the MDs

> are not sure if it is real? is that what the issue is?

>

> I wonder if a pacemaker would have helped Sam. of course we had no idea

> he would need one - he just never never never had bradycardia. But now i

> think about Z....I don't think there are good indications of needing to be

> paced but his variability is beginning to worry me. He has had 48 hour

> holters done and they show " exaggerated sinus arrhythmia " . I used to

> find comfort in the sinus rhythm but not sure I do now given Sam had sinus

> rhythm right before he progressed into asystole. What is this other

> monitor you talk about....it is worn for 30 days?

>

> We need to have a more thorough way to assess Z's cardiac physiology and

> the annual echoes don't seem to be the way to go. Sam needed 4 cardiac

> drips - his normal cvp was between 15 and 18 (way too high) and yet his

> echo showed a " perfect heart " . Then why could he not even walk without

> developing a gallop and why did he need all those meds in order for his

> heart to compensate? Everyone agreed he had heart failure and it needed to

> be treated but no one seems to be able to say what was wrong....there must

> be a better way to assess hearts than this.

>

> Anne

>