How common is Tachycardia with Mito? And why?

March 31, 2005

Tamara,

Lexi has had tachy episods since birth. Always, like you mention, accompanied with paleness and in her case, dusky episodes where her sats drop to the low 80's. I haven't ever had an exact "why"...then again, it's mito. Why does ANY of this happen?!?!?! I now know to look for some triggers: is she too hot, cold, excited, tired, in pain for another reason (cat scratched her last week and triggered one), hasn't gone to the bathroom, etc. Not that it stops the events, just kinda helps me make sense of it in my own brain, ya know?

I have the running joke with Lexi that she will graduate from high school still on her monitor. She does NOT think this is funny. Our doc wants us 6 months seizure free before giving it up. yeah, right. In my dreams.

Hope this helps.

ruth

mom to Mitch (baking his 10th bday cake as we speak) and Lexi (just turned 7), both mito affected and my treasures

March 31, 2005

Hello! First of all I have been praying sooo hard you all of you

who are having such a hard time right now. I hate to even list

things right now, because our stuff seems sooo minimal to compared

to what alot of you are going through. Yet of course our issues are

big to us.

I'm really worried about Joey. He is having alot of pale episodes,

his heart races, headaches and Monday he acted very confused during

all of this. I called our heart doctor, he put him on a 30 event

monitor. This is only day 3, and Joey is ready to take it off.

This is going to be a long 30 days. This type of monitor is one

where we have to push the botton when he has a event. Then is

record 30 before and 1 minute after.

Is Tachycardia common with Mito? We already know Joey has a heart

arrythmia and the last echo in January showed one of his ventracle

are too large(yet still working correctly). If it does come back

Tachycardia, does this mean his heart is getting weaker. ~~Man that

was even hard to say~~

And help would be great!!!!

God Bless everyone here~~~

Tamara(Mommy of Joey, unspecific Mito)

March 31, 2005

I have no experience with this, sorry. Just wanted to reassure you that you should feel comfortable asking anything here. I hope he does better with the monitor, and the testing turns out o.k. Even though Grace has never had heart issues, I still panic everytime she goes for her yearly Echo. Best wishes.

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March 31, 2005

Tamara,

Both Kira and have delt and do deal with the Tacticardic issues. has been put on Atenol to help control this and it seems to work very well for him. He would go into severe episodes and collapse, not to scare you but rather to prepare you. He has had to be shocked into rhythm 3 times which is a bit frightening at the time, but has worked well each time. Kira has difficulty with it when she seems to be under any type of stress, be it school or teenage whatsit stress as I refer to it. At first I thought they were panic attacks for her, but it is good ol fashion tacticardia. So my experience so far has been 2 of my 3 have the tacticardic issues. It has been a bit frustrating at times especially when we got a hold of a cardiologist who didn't get it, we didn't keep him too long. Actually the cardiologist we saw in Cleveland for Kira's heart surgery was the one who delt with it the best, but she is no longer there unfortunately. We now use one that is out of Children's Hospital Los Angeles that DR Boles has recommended to us. He is the one who told us that the tacticardic events are due to the dysautonomia that the Mito causes which doesn't give the heart the proper impulses it needs to maintain a regular heartrate. Therefore for the atenol works as a blocker to the mis signals and allows the heart to beat with a true rhythmic impulse if that makes since.

Hugs

O

March 31, 2005

Asenath has had tachycardia since she was very young. Dr. Whiteman has

always been concerned about it but nothing further has come of it. All her

ultrasounds and testing on her heart has been fine thankfully. We also

definitely notice increases in heart rates in both girls when they are ill

or stressed. They both will rise WAY high up to 200 bpm or higher. At the

same time their respirations are much faster, they are pale, have fevers

some of those times, and are very weak. We always get concerned and try to

keep them as hydrated as possible at those times.

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)