Baby girl, dilated miocardyopathy from Argentina, need help

[Corrij (therapeut)]

Hi Aleta,

Do you know when Lara gets her surgery?
How is she doing, and how are you feeling?

Corrij

[Aleta]

Hi Corrij

We still don't know the date, because the team has a lot of surgurys, but cardiologist said we should calculate in the December 7 week.

Lara is doing fine but has a cold and is breathing faster, and a while ago had °38 fever.
I gave her ibuprofen and looks much better.

I'm very scared about what could happen to her heart in the waiting for surgery, that is what worries me today, but most of the time is about how she handle surgery and recovery. Doc said that she'll be sedated with oxigen for days until her heart recover function, and I have to pray for no other trouble.

We are all very scared and anxious, and this fever is worsening our worries.

I don't know if they will want to give her supplemenrs in the clinic. I guess carnitine and q10 will be no trouble because was docs prescribed, but ribose and magnesium I don't know.

This is so hard.

I hope you are doing well.

Aleta.

[Corrij (therapeut)]

Hello Aleta,

I think that magnesium is the important one before and after surgery.

Magnesium appears to be important in arrhythmia prophylaxis after heart surgery in adults and may contribute to improved cardiac contractile indexes after CPB. However, the role of magnesium in arrhythmia prevention and optimal magnesium dosage protocols in pediatric patients undergoing heart surgery remained unclear. Therefore we examined the efficacy of magnesium administration in postoperative arrhythmia prophylaxis in pediatric patients undergoing surgery for congenital heart defects. The unique results of the current study revealed that maintenance of magnesium levels within the normal reference range in the immediate postoperative period of heart surgery decreased junctional ectopic tachycardia. Thus this study represents the first prospective, randomized trial that demonstrates that magnesium supplementation is safe in pediatric patients undergoing heart surgery and may reduce the incidence of junctional ectopic tachycardia.

The incidence of hypomagnesemia during heart surgery and after surgery has been well characterized in the adult population. Significant deficiencies of magnesium have been demonstrated in up to 100% of adults after heart surgery requiring CPB, with a duration ranging from 4 to 14 days after surgery. Alterations in magnesium in pediatric patients during and after heart surgery have not been as well characterized. Plasma depletion and total body magnesium depletion also occur in pediatric patients after heart surgery and may be more pronounced than in adults because the volume of prime for CPB is large compared with blood volume, and preoperative magnesium levels may be below normal, especially in critically ill neonates.] A recent study examining magnesium flux in pediatric patients undergoing open heart surgery demonstrated that depletion of total body magnesium occurs during and after surgery despite the inclusion of magnesium in cardioplegic solutions. Depletion of ionized magnesium was also reported in a study limited to the surgical procedure in pediatric patients undergoing repair of congenital heart lesions, with changes in magnesium levels dependent on both patient weight and the inclusion of magnesium in cardioplegia. The current study builds on prior studies by further characterizing the dynamics of magnesium flux after CPB and after surgery in pediatric patients undergoing heart surgery who did not receive supplemental magnesium in cardioplegia or priming solutions for CPB.

The mechanism for hypomagnesemia in pediatric patients undergoing heart surgery is not completely understood but is probably multifactorial. Increased perioperative urinary magnesium losses can occur after administration of loop or thiazide diuretics, and hemoglobinuria from red cell destruction during CPB can potentiate urinary excretion of magnesium The administration of digoxin or calcium gluconate or the development of a metabolic alkalosis also can cause excessive renal loss of magnesium. Moreover, lipolysis with increases in free fatty acids occurs during myocardial ischemia or with elevated catecholamine levels and is associated with significant decreases in serum magnesium levels caused by chelation of magnesium ions that can persist for several days. Finally, hemodilution during CPB with magnesium-depleted solutions can contribute to the reduction in serum magnesium levels. The role of hemodilution as a causative factor in hypomagnesemia may be particularly significant in the current study because the volume of magnesium-free prime for CPB was large relative to circulating blood volume.

Magnesium has a major influence on myocardial tissues. It plays an essential role in the maintenance of resting membrane potential and attenuates electrophysiologic effects of hyperkalemia. Magnesium deficiency can impair cardiac conduction, increase the risk for arrhythmias, predispose to coronary artery spasm, and contribute to neurologic irritability. Magnesium also has been shown to reduce platelet aggregation, inhibit catecholamine release associated with stressful events such as tracheal intubation, and reduce systemic and coronary vascular resistance. There is also evidence that inclusion of magnesium ions in cardioplegic solutions and maintenance of normal magnesium levels during and after heart surgery in adults can improve ventricular recovery and postoperative cardiac indexes This improved ventricular recovery after hypothermic cardioplegic arrest may be related to the calcium antagonist properties of magnesium, including inhibition of voltage-dependent calcium channels and increased mitochondrial and sarcoplasmic reticulum calcium uptake, which attenuates calcium overload after reperfusion. Appropriate magnesium supplementation in heart surgery in adults has been well documented and can be administered by an intravenous bolus dose after CPB or a continuous infusion into the postoperative period However, prior studies have not defined optimal magnesium supplementation after CPB and heart surgery in the pediatric population. Therefore we examined the postoperative magnesium requirement to better understand appropriate magnesium supplementation in pediatric patients undergoing heart surgery. The initial 30 mg/kg dose of magnesium administered to patients after CPB resulted in resolution of low magnesium levels to the normal reference range that persisted for the 24-hour period of observation. Additional magnesium supplementation was not required at any of the electrolyte measurement points in the ICU. This dose of magnesium (30 mg/kg) administered intravenously over a period of 10 minutes after CPB does not appear to result in toxic sequelae, and there were similar pacing requirements between patients who received magnesium or saline.

Magnesium has been used successfully in the treatment of and/or prophylaxis for a variety of arrhythmias. The use of magnesium in arrhythmia management recently has been extended into the heart surgery arena. Magnesium administration was shown to be efficacious in decreasing the frequency of postoperative ventricular dysrhythmias and atrial fibrillation in adult patients undergoing heart surgery requiring CPB. In the current study, examining pediatric patients undergoing heart surgery, magnesium administration with normalization of serum magnesium levels appeared to reduce the incidence of junctional ectopic tachycardia in the immediate postoperative period. Postoperative junctional ectopic tachycardia in pediatric patients is difficult to diagnose and manage. The criteria for diagnosis of junctional ectopic tachycardia in the current report included a rapid tachycardia with unchanged QRS configuration associated with atrioventricular dissociation; the sinus P waves wander through the electrocardiogram at a rate slower than the junctional rate. Junctional ectopic tachycardia also was not affected by overdose pacing or DC cardioversion. Only 2 prior reports have examined magnesium flux and arrhythmias in pediatric patients undergoing repair of congenital cardiac lesions. Although neither study found an association between magnesium levels and arrhythmias, the incidence of hypomagnesemia was low, and the arrhythmias were documented by continuous monitoring and not Holter recorder. Moreover, in one of the studies the incidence of arrhythmia was documented during surgery, a time when mechanical irritation and electrical interference is prevalent. Thus this is the first study to document a significant protective effect by magnesium against the development of arrhythmias in pediatric patients after heart surgery.

The mechanism by which magnesium exerts its antiarrhythmic effect is not completely understood but may be attributed to several electrophysiologic properties. Magnesium has been shown to reduce the spontaneous sinus node rate and abnormal ventricular pacemaker activity from catecholamine stimulation and reduce atrial and ventricular conduction, which should prove efficacious on arrhythmias whose mechanism includes increased automaticity or reentry circuits. At the cellular level, magnesium is a cofactor for sodium-potassium ATPase, which is responsible for potassium flux across the myocyte membrane and maintenance of resting membrane potential. Thus an increase in magnesium increases negative membrane resting potential, which reduces myocardial excitability. Magnesium infusion also increases the absolute refractory period and decreases the relative refractory period and thereby decreases the vulnerable period. Finally, magnesium appears to interfere with the slow inward calcium current in cardiac myocytes and atrioventricular node and thereby reduce the tendency for transient depolarization or calcium-induced injury caused by calcium overload, especially with reperfusion of ischemic myocardium. While remaining speculative, several of these electrophysiologic properties of magnesium may play a role in resolution or prevention of junctional ectopic tachycardia observed in the current study. Causative factors involved in the development of junctional ectopic tachycardia are not completely understood but appear to involve enhanced automaticity in the bundle of His. Catecholamines, hypotension, and vagolysis appear to worsen the tachycardia, whereas increased vagal tone and cardiac output, decreased adrenergic tone, and normalization of metabolic parameters appear to improve the arrhythmia. Thus the stabilization of membrane potential and reduction in catecholamine-induced pacemaker activity by magnesium may contribute to a reduction in automaticity and development of junctional ectopic tachycardia. The magnesium-induced increase in the functional and effective refractory periods of the atrioventricular node also may assist in prophylaxis against junctional tachycardias that have a pathogenesis of automaticity.[49] Finally, patients treated with magnesium after heart surgery appear to have increased cardiac index, which should contribute to a reduction in adrenergic tone. Thus magnesium may be a useful modality in the prevention of junctional ectopic tachycardia in pediatric patients after heart surgery and may be helpful in treating the arrhythmia in conjunction with other more conventional methods.

[Willy]

Thank you sasje for sharing info on this

This operation could not be avoided, since it is an mechanical issue that slows down here recovery

We are working with Lara now for more then a year.

Normally heart failure gets worse over time

Not so for Lara she is improving slowely.

I can imaging that you worry about this operation aleta, I would do too

Look at your doughter for comfort, Lara will also overcome this health issue and will enjoy the future after her operation even more

[Willy]

I agree Corrij on the magnesium

Maybe also carnitine

But Aleta shoild consult the metabolic docter for this also

He has to give green light for this

But I think both supplements have value in this situation

[Aleta]

Thank you Willy ans Corrij!

I've sent an email to cardio with all the info Corrij sent me about magnesium.

We have appointment on monday, still no schedule surgery, I hope not more than 2 weeks more because my head is gonna burn or something.

Thanks for be here with us.

Willy, I hope you are feeling better!

Aleta.

[Willy]

I am feeling better now. I suffered from depressin

Heart rithm problems, blader infection blughhhh

[Aleta]

Life get hard somethimes...

I know you will be Ok, I wish that soon

send you biig hugs!

[Aleta]

Hi Corrij and Willy

Update on Lara,s surgery:

First of all, she probably don't recieve carnitine and ubiquinol in recovery. Our cardiologist told us that we don't have to worry about that because both made deposit on Lara,s body. Magnesium she will get a lot with the other drugs she get.

Yesterday we met the sergeoun, he told us that all the team is very trust about sugery success. They are 90-95% sure. The other 10-5% is life risk so........ I'm super scare panic sad etc. But they think after this surjery Lara,s heart will be much much better.

One bad thing (for me at least) is they are not a transplant team, in the clinic they don't have ventricular devises in case of Lara,s heart doesn,t start after sugery to put her and wait for a new heart. Don,t get me wrong, i pray avery day for Lara can keep her heart and live until she be an elderly woman. But if her life depends on it, is not a choise after surgery. If there,s anything wrong in recovery and they need to put her in ventricular device, they can send her to other clinic.
We don't have much of a choice because we don,t have time for met another teams, and we trus our cardiologist a lot. I'm very scare about Lara's heart strenght for recover.

This is s**t scary.

We,ll do the admition in the cllinic tuesday 8, and 9 at 2pm will be the surgery. He spects to do a plastic repair surgery on the valve, not to change it. But just in case they have the mechanical valves.

Surgery will last 5 hours or so. Then she,ll be at PICU until she recovers, wich can happen in 3 days or 6 months. (I don,t know if PICU would be 6 month or will recovery at home at some point).

A good thing is that our lovely pediatrician will be in surgery,s room, texting us from inside.

So, this is how landscape looks now, I know I have to be positive and thank god that there is something else we can do for our girl heart, is just SO scary!!!

I hope you are doing ok there.

Love,

Aleta.

[Willy]

Until now Lara has prooven to be strong child. She never let us down. And she will also recover from this.

I just spoke to a mother (Martine) with a son of 10 months old that had the same operation as Lara.

Everything went fine

This is not a very complex operation. They do thos a lot of times.

Stopping for a couple of days with the supplements is not a problem.

[Aleta]

I know is no complex surgery...
My fear is that her ventricle don't recove from surgery, external ox, those things.

You've always right, pray for this time too!

[Aleta]

Martine's son recovered fast?

[Willy]

Yes, next week he will be home again

But..... Still suffering from heart failure, pro-BNP reduced from 60.000 to 3700 after operation and heart failure medication like dueretics, ace inhibitors and beta blockkers

He is 10 weeks old

Martine is now thinking about starting the protocol, but did not make a dission yet

[Aleta]

I hope she decide start it. I have no problem in talk to her if you like.

[Willy]

Thank you

But for now I let here decide what she wants to do