My Son was diagnosied (provisional diagnosis) of Viral Myocarditis when he was 2 weeks old and he was in ICU for 2 weeks (in Dec 2005) . When his condition became stabe he was discharged and was on medication - Carnitine, Lasix & Digoxin.
When he was 1 year old, echo revealed improved EF of 45-50% and Doctor stopped Lasix.
After an year (when my son was 2 years) when his condition was stable (same EF of 45-50%), digoxin was stopped and he was advised to take only Envas(Enalapril).
During last month (Sep09 - when he was about to complete 4 years), he had problems of Wheezing and was given Ashtalin (puff) and wheezing improved over a period of 7-10 days.During this time, budecorte was also given for about a month (one puff daily for a month)
But suddenly he increased weight (from 14.5 to 15.5 / 16 Kgs) & had leg pains at night ; During regular checkup with Paediatrician, they mentioned that he would've put on weight & leg pain might be due to "growing pain". When problem worsened, we consulted few more paediatricians and one of them suspected heart problem and talked to my Paediatric cardiologist and started lasix & digoxin (lot of fluid in the body)
When we consulted our paediatric cardiologist after a day, echo revealed 20% EF but child was actvie (due to 2 days of lasix & digoxin). Doctor started triple therapy (lasix, digoxin, enalapril) and also gave aspirin.
We went for review after 10 days and Doctor mentioned that child has improved a lot (liver size was normal) and advised to continue the same medicine and advised him rest & no school till his next review
What will be the prognosis for my son
I have few more questions and i will post one more query (due to limitation of words in one query)
Without being able to fully evaluate your son, I cannot say for sure what his prognosis will be—there are too many variables to be able to say. However, I can say that viral myocarditis can damage the heart significantly to the point that the heart muscle does not recover completely. For our other readers, myocarditis is a condition in which the heart muscle demonstrates inflammation and damage to the cells. The most common reason for this in children is due to a viral infection. Myocarditis can sometimes be immediately lethal, it can cause some damage, it can cause little damage but be slowly progressive, or it can cause a mild problem from which the heart recovers. It sounds as if your son may have either had progressive damage or had the damage masked by his medications. This damage has left him with a dilated cardiomyopathy, in which the left ventricle is dilated and unable to pump adequately to meet his body’s needs.
In some patients who have decreased pump function of the heart, the medications may be all that they need to be able to function normally. However, the damage to the heart is done, so this means that, at a minimum, he will need to be on these medications for life. Sometimes, though, this is not sufficient to prevent worsening of the heart function. Or, as he grows, the heart function that he has may not be enough to meet the needs of his body. Either of these problems may lead to his requiring a heart transplant to allow him to not only be able to function on a daily basis, but also just to survive. At minimum, he will need lifelong follow-up with a cardiologist.
The provisional diagnosis of Viral Myocarditis is not confirmed
I met a new Pediatric cardiologist yesterday and she mentioned that it is very rare for a person to get viral myocarditis when baby is 2 weeks and since EF improved to 45-50% (at 1 year) and remained at same level (3 1/2 years age) and has gone back to 20% (at 4 years) , it is most unlikely viral myocarditis and most likely a congenital problem )non compaction of LV - LV dysfuncction)
If it is not viral myocarditis, what might be the problem/issue or what is this problem known as. Is this cardio myopathy / LV dysfunction / non compaction of LV
Is prognosis diff for congenital non compaction of LV (LV dysfunction) and are there drugs to improve this. Currently he is on Lasix, Digoxin, Enalapril & Aspirin. My pediatric cardiologist suggested one more drug - Carvedilol but has not started since his BP is on borderline due to exiting drugs that he takes. My son is active and doctor mentioned that she was surprised to see no problem (clinically) inspite of low EF and said that my son is doing well and would've got coped up with low EF.
Also EF is shown some difference. It was at 20% during early Oct and yesterday the range was 20-29% level and does it mean that the recent addition of medication has improved EF (the heart muscles) and whether medicine will help him to improve to above 50% levels.
Whether pacemaker is a solution in alternative to heart transplantion
What is the success rate of heart transplantion in US, UK & India and approx how many cases are done on yearly basis in US, UK and India.
I checked in internet and got many details for prognosis (from Willy Interscience, Science Direct)
They have mentioned "Levosimendan in viral myocarditis: not only an inodilator but also a
cardioprotector".In other case, they have mentioned about "immune-modulatory therapies" for cardio myopathy
I do not know what an RF is, so I cannot comment on this. If, indeed, this is left ventricular non-compaction and the ejection fraction is 20-29%, the prognosis is not good. This is a genetic disease of the heart muscle that is probably related to hypertrophic cardiomyopathy. Medications may help for some time, but it is unclear how long. It will not go away, however, and will likely worsen over time. I can not get into transplantation rates and survival from the US, UK, and India in this venue. This is something about which you need to speak with your cardiologist, and is also likely available on the Internet. A pacemaker is not likely to be a good intervention for this, as the intrinsic function of the heart is diminished, and his natural pacemaker (the sinus node) is probably working just fine. It is good that he is active, which means that he likely doesn't have a lot in the way of symptoms and has at least some reserve from a cardiac standpoint. He may not have as much reserve as we would like, though, if he were to get an infection that raises his need for increased cardiac output. Therefore, it would probably be a good thing to discuss with your cardiologist the timing for listing for cardiac transplantation IF this is something that you would like to pursue AND this is something for which you understand the short- and long-term implications.
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