Snowbird with a weakened heart...
Snowbird with a weakened heart... I am the daughter of a medical doctor and your son's experience sounds quite like mine - almost exactly - I am 42 now and I too had a VERY high ASO Titer - several high levels until I was 21 yrs of age. In my view, a tonsillectomy offers a portal of entry for the Strep 'A' into the body to do further and a more severe assault on a child who has a Strep 'A' infection of the throat - I think doctors should hold back from removing the tonsils unless the child has too much difficulty breathing and is in too severe pain (which in my case I was by the way). I revolted against taking the penicillin at one point and stopped completely - it is so difficult for anyone having this to persistently keep taking the medication - let alone a child... I was 11 approx. when it hit me and now after breathing problems, unexplained abdominal pain, hard nodules under my skin (one at the base of my neck which I clearly feel and is affecting my breathing now), nodules under my arms, rashes near my ankles, fever, swelling of the legs and back I have every reason to believe I am suffering an adult recurrence of this condition. Albeit, I have had a flu (influenza) and pneumonia vaccine every fall (which improved my winters immensely from catching colds) I now have a had time finding a doctor who will bother to dig further into this. [My father is too far away to help me and is getting old]. I also am starting to think from the cases I have seem that the could be some strange link between Rheumatic Fever and cancer of the lymphatic system. I wonder if these nodules that are starting now are not the precursors of serious things to come... One thing I can state is my heart does beat at a tachycardia rate and oft causes me pain. I have a mitral valve prolapse which I am told must have been there at birth but I feel tired - constantly tired - I am a single mother and raised my children to adulthood - suffered a strange inflamation of the wall of the uterus for which medical science offers NO explanation - so severe where my progressively worsening hemorrhages that I ended up in an ambulance and faced NO other choice following such atrociously severe pain that once having done a desperate regimen of medication trials and failures had then no choice but to BEG - I really mean BEG a doctor to put me out of my misery and do a hysterectomy. The third child I had always dreamer of vanished into thin air with my hopes of someday finding a partner who would love me again. I cannot stress more to you than to encourage your child to take the antibiotics but be weary of bowel problems that they can cause as they do affect the intestines. Weigh your options and seek a second and third opinion if you have to! My father was a most wonderful doctor but my refusal to take the antibiotics out of revolt of having to take those damn pills (8-10 large ones a day) was running my willpower to understand and get better at its lowest point. I oft flushed the medication down the toilet and yearned to go outside for a breath a fresh air! If you child cannot strand being in the house for a long period - bundle him/her up and sit them in a chair outside when they start to get better - I find that allowing the human body 'sensors' to do their work is oft a good thing... I begged my dad to let me start swimming again and it was only when one of my brother (now a world-renowned scientist) pushed me in the water at the end of the dock at our cottage then (running shoes and all - trust me that was one of the happiest days of my life and it gave me the will to get better and fight! I gained better spirits and I cannot stress the importance of that in caring for such a child) - I promote giving children some of their childhood back - not to confine them - stale indoor air CAN also have bad repercussion too remember! I remained in the house making puzzles for hours - unable to go play outside... - I envied all children and mostly my siblings for that and that caused me to be quite depressed - depression by no means is any good for anyone in trying to get better - I withheld this from my father for years and believe it was a strong factor in the entire picture... - I believe that doctors ought to practice a more holistic approach in treating their young patients (and be on the lookout for adult recurrences too!) - the mind is a powerful tool in causing the human body to produce all kinds of natural biochemical substances in the body for which medicine I a certain still had a lot to uptap... - any scientist will tell you that by the simple act of smiling your body releases a substance which contributes in lowering pain... - as small as it is its contribution cannot be overlooked. So a happy child is a child on the way to recovery (without making the child a spoiled brat! - DO NOT become slaves to this child - raise him/her normally but with a good and reasonable measure of caution I find would be best.) The most acute phases do need a LOT of rest but DO NOT confine your child to a stale room - the little trip to the washroom (where some doctors say to place a potty near the bed is more in tune to the times of archaic medicine actually - passé and not very good) will not 'harm' your child... the little trip would help muscles and circulation a little as long as it is not TOO frequent... Besides, when is a potty with its aroma in a room pleasant or healthy when germs can fester in the ambient air? You tell me which is worse health risk... - Humidity seems to have some 'related' factor with some Rheumatic Fever onsets as well as the presence of Strep 'A' (I had a bedroom in the basement) and a child is better off on an upper level floor - few doctors ever consider that or even think of asking when they should! Note also that pain in the joints can also occur in the spinal cord (as it did me as a youngster) and being in a cooler more humid place does not help - even if it is in the best of 'finished' basements... - Aspirin will help (watch the stomach and intestine and ask your doctor of course - get the coated kind and keep having the child take some - even a little a day into adulthood) - I find that taking aspirin helps - I can feel a difference oft now... - my heart beats less erratically and things are overall better than simply taking inderal or propanolol (medications - hope I got the spelling on that last one right) - these help the symptoms when adult - but caution! - my cardiologist once found that inderal does something to the human brain and should NOT be taken over a prolonged period - so go back for check-up regularly when you are on medications associated with heart-related conditions even if it is Rheumatic Fever - you never know what can crop up and if your doctor bother to read the recent medical journals perhaps some day he may protect you instead of having potential harm due to medication persist or linger not too far away... My brother who pushed me in the water is now doing research on the human heart - strokes, etc. included... - he has made two major scientific discoveries in field totally different than the one he is concentrating his efforts on now. He built the world's most powerful MRI machine and has been responsible in finding a new theory on evaluating the age of the universe (physics you see...) - but his MRI research is leading him in examining the human heart and perhaps some day who knows it may save countless lives... - I hope that the little I can give you as far as insight here has been of some help - and - I think that children with Rheumatic Fever should be encouraged - very much so - while EXPLAINING to them the IMPORTANCE to TAKE THEIR MEDICATION AND LISTEN TO THEIR DOCTOR (and parents who care and love them) so that they put the odds on their side - BUT NOT MAKE THEM INTO INVALIDS PLEASE! - for I find far worse the emotional depression and pains of the emotional 'heart' too great for a child to bare on his/her shoulders in silence and too destructive and FAR FAR too risky that he/she could ABANDON their treatment altogether - you CANNOT be around your child ALL the time and you must be the first care giver enabled to instill in them this sense of self-responsibility in their care and also self-worth enough to give them the INCENTIVE to care for themselves - the courage to be patient and continue their treatment and the vision to look forward to a future that can be as bright as anyone in their own way - surely many will never become Olympic champions as they tire more rapidly than 'normal' children - but DO NOT BABY THEM & DO NOT TURN THEM INTO INVALIDS PLEASE PLEASE! - I cannot stress this enough - I should tell you that when I became better I once asked my father if I could go to the skating races during a winter carnival - he expected that I meant as 'spectator' - I meant as a participant - I came back with four fourth place ribbons - not bad for a child who beat 150 or so other kids and had never done a race before - coming home jubilant my father was terribly upset at me - there clearly had been a lack of communication in what my intent for the skating races was - but in one fell swoop I lost all love of physical exercise for years to come [I had been grounded from swimming and ballet for nearly 2-3 years - it was terrible! - and this was I felt a time when I felt very good physically and was in a good period... - the harm that was done I cannot go back on and I know the intentions and knowledge of my father was the best that there could be... - but the emotional harm of being prevented from doing ANY physical activity and continuously feeling like I was imprisoned inside the house was unbearable - let alone forgetting to congratulate and recognize my accomplishment despite it all was a tremendous emotional setback - I gave up on myself - I simply did and getting that back in a child could be more difficult than the best-intentioned doctors or psychologists. A child must be left to be a child once in a while - not go as far as I did evidently in a case like this medicine perhaps knows best on a case per case basis - but if your child ever does something 'forbidden' physically PLEASE DO NOT SCOLD him/her! The deed would be done and it would be too late - sitting down with the child and explaining things would be far more effective and nurture a relationship in parenting and care giving that could be priceless and prove invaluable in their treatment. Reward the child for doing things such as taking their medication properly and regularly under your supervision to ensure they DO take it! Do things to change the monotony of the days of 'staying quietly at rest' be more interesting... yet nor fatiguing - long hours of reading or TV watching can be tiring so be cautious - rest, sleep - taking a nap is good (nap with them if you must once in a while... - tell them a story... - talk to them - show them little crafts, etc., etc. - find out if having a pet would be O.K. even - fish don't bite and are easy to care and could be a nice little hobby... - get good movies (comedies are great on a sunny afternoon when the child cannot go out). Show your daughter/son how to knit or start them on a collection of some sort - some can be inexpensive...) get a pull cart on wheels installed on the back of your bicycle and have the child sit comfortably in it well bundled up if it is a little 'nippy' (or cool outside) - (remember the wind as well) and bring them along with the family on short bicycle rides - nothing like a whiff of fresh air in those young lungs to bring the spirit up sometimes when the child is better). I have seem children run away from home because of too strict rules and 'confinement' - met quite a few in the hospital once... - sad... - putting a reasonable measure in your actions I find is best - listen to the doctor but do not let him turn you into a tyrant or dictator for your child unknowingly for in a small person's eyes inevitably this is what you would become... - the nature of children at a young age is to always want to move and do things it is difficult to go against that so by EXPLAINING to a child the REASONS WHY he/she MUST rest and be calm for a while - a few months at times - if more effective - let them KNOW that this will NOT last forever and that eventually they should be able to do things like other kids again... - but slowly... and under supervision by a doctor and yourself as a parent. Making sure a child does not come home in soaked boots or running shoes if they walk from school - dressing them warmly and conveniently may help some (although they do not cause things they certainly don't help if they are not adequate). A nice warm bath to lull them to sleep if there are too energetic at night will help them relax... (not too hot of course - some parents do need to be reminded in this world...). Removal of certain foods the child likes is for them a form of 'punishment' so don't go off the deep end and be drastic on that - healthy food but be an informed parent but please don't do overboard! Better have a little treat once in a while and feel like a 'normal' child than to be deprived... - get your bag of popcorn out to settle to watch a movie together on the sofa... - besides it is a fiber for the bowels... - a few goodies once in a while 'help' the medicine of having to 'swallow' all this new life pace so much easier and I do not mean a sugar-laden diet here - regular sweets are allowed once in a while... - what about breakfast in bed with your child once in a while huh - who ever said that could not be done? Well - I shall leave you with this in mind and hope that the little I have given you as insight would help you as a parent - having lived Rheumatic Fever and gone through the emotional side of all that this may entail first hand I assure you that for the child it is not a 'bag of beans' or 'bed of roses' - not an easy thing to go through and you should keep that in mind if you want to help your child - nurture that and you will go miles in helping him/her - trust me! Take care - of - not only your little bird, but of yourself and any siblings the child may have as well (they too can have positive therapeutic effect in contributing to encourage the child affected by Rheumatic Fever to get better - they should be included in the picture and not ‘neglected' as they could find that the attention you ‘dole' on the child who is ill - albeit not well understood at their tender age perhaps - is a form of preferential treatment and rather than creating an environment of healthy sibling relationship you will create what could end up to be an early onset of ‘rivalry' and ‘jealousy' which is not healthy for anyone in the house - everyone gets cheated and hurt that way. Treating a sick child is a ‘family' affair... - especially when the emotional side of the children can have such an impact when one child is FORCED to REST or ‘limited' in their actions to what may seem as ‘confinement' - the repercussions could rub off on the other children in the household all depending on how you handle things. Flying off to bed now... I am in Canada and it is late where I am now... - but this was worth the time and effort if this testimonial can find its way to helping any child affected, the parents and at the same time offer a piece of advice to doctors who oft see nothing else than the bindings of their books and fail to see things on another perspective the impact that their advice could have if they do not give their instructions with a ‘spoonful of sugar' and a ‘well-seasoned heart'... - too many doctors adopt a form of ‘turnstile' attitude in medicine when a dollar earned and the most patients seen in the course of their day makes them lose sight of the oath they took when they became doctors... - they forget some of the ‘old-fashioned' side of medicine that still today can have enormous value and positive effect on their patients... I thank God my father is still of the old school of more humanitarian medical thinking... - I was fortunate even if he was a devoted and dedicated doctor with a busy practice... - he has his shortcomings in not seeing that I was revolting in a form of depressed abandonment of my treatment and in silence I perhaps harmed myself - not mature as a child to know better and yet with the strong-headedness that most ‘normal' children have at that age to want to move around and in imperfectness of such tender age... God Bless...