bitter sweet chills

I have researched Infantile Spasms until I thought my eyes might explode.  And in all my reading and drowing in text...I have never read this.  I am certain I must have stumbled on it before.  But for some reason it did not catch my eye.  Maybe I wasn't in a place to appreciate it at the time.   

An extraordinarily desperate letter from William James West (who is credited with discovering Infantile Spasms).  A letter which I believe every family dealing with Infantile Spams would benefit from reading.


to read in full click here.

"Sir: I beg, through your valuable and extensively circulating Journal, to call the attention of the medical profession to a very rare and singular species of convulsion peculiar to young children. As the only case I have witnessed is in my own child, I shall be very grateful to any member of the profession who can give me any information on the subject, either privately or through your excellent Publication.
The child is now near a year old; was a remarkably fine, healthy child when born, and continued to thrive till he was four mounths old. It was at this time that I first observed slight bobbings of the head forward, which I then regarded as a trick, but were, in fact, the first indications of disease; for these bobbings increased in frequency, and at length became so frequent and powerful, as to cause a complete heaving of the head forward towards his knees, and then immediately relaxing into the upright position, something similar to the attacks of emprosthotonos: these bowings and relaxings would be repeated alternately at intervals of a few seconds, and repeated from ten to twenty or more times at each attack, which attack would not continue more than two or three minutes; he sometimes has two, three, or more attacks in the day; they come on whether sitting or lying; just before they come on he is all alive and in motion, making a strange noise, and then all of a sudden down goes his head and upwards his knees; he then appears frightened and screams out: at one time he lost flesh, looked pale and exhausted, but latterly he has regained his good looks, and, independent of this affection is a fine grown child, but he neither posseses the intellectual vivacity or the power of moving his limbs, of a child of his age; he never cries at the time of the attacks, or smiles or takes any notice, but looks placid and pitiful, yet his hearing, and vision are good; he has no power of holding himself upright or using his limbs, and his head falls without support.

Although I have had an extensive practice among women and children, and a large circle of medical friends, I have never heard or witnessed a similar complaint before. The view I took of it was that, most probably, it depended on some irritation of the nervous system from teething; and, as the child was strong and vigorous, I commenced an active treatment of leeches and cold applications to the head, repeated calomel purgatives, and the usual antiphlogistic treament; the gums were lanced, and the child frequently put into warm baths. Notwithstanding a steady perseverance in this plan for three or four weeks, he got worse, the attacks being more numerous, to the amount of fifty or sixty in the course of a day. I then had recourse to sedatives, syrup of poppies, conium, and opium, without any relief: at seven months old he cut four teeth nearly altogether without any abatement of the symptoms, and, up to this period, he was supported solely at the breast; but now, at the eighth month, I had him weaned, as he had lost flesh and appeared worse; I then only gave him alteratives, and occasionally castor-oil. Finding no benefit from all that had been done, I took the child to London, and had a consultation with Sir Charles Clarke and Dr. Locock, both of whom recognised the complaint; the former, in all his extensive pratice, had only seen four cases, and, from the peculiar bowing of the head, called it the "salaam convulsion"; the latter gentleman had only seen two cases; one was the child of a widow lady, it came on while she was in Italy, and, in her anxiety, she consulted the most eminent professional gentlemen of Naples, Rome, Florence, Genoa, and Paris, one of whom alone seemed to recognise the complaint. In another case, mercury, corrosive sublimate, opium, zinc, and the preparations of iron, were tried without the slightest advantage; and, about six months from the commencement of the symtoms, a new one was added; there began a loss of motion, in the whole of the right side, and the child could scarcely use either arm, hand, or leg. Sir Astley Cooper saw the child in this state; he had never seen or heard of such a case, and gave it as his opinion, that "it either arose from disease of the brain and the child will not recover, or it proceeds merely from teething, and, when the child cuts all its teeth, may probably get well"; some time after, this child was suddenly seized with acute fever; the head became hot, and there were two remaining teeth pressing on the gums; the child was treated accordingly; leeches to the head, purged, and lowered; the gums were freely lanced; in a few days the teeth came through, and the child recovered, and from that time the convulsive movements never returned. Sir C. Clarke knows the result of only two of his cases: one perfectly recovered; the other became paralytic and idiotic; lived several years in that state, and died at the age of 17 years. I have heard of two other cases, which lived one to the age of 17, the other 19 years, idiotic, and then died. I wrote to Drs. Evanson and Maunsell, of Dublin; the former gentleman being in Italy, the latter very kindly replied, he had seen convulsive motions in one finger, arm, or leg, but had never witnessed it to the extent of my poor child. As there has been no opportunity of a post-mortem examination the pathology of this singular disease is totally unknown.

Although this may be a very rare and singular affection, and only noticed by two of our most eminent physicians, I am, from all I have learnt, convinced that it is a disease (sui generis) which, from its infrequency, has escaped the attention of the profession. I therefore hope you will give it the fullest publicity, as this paper might rather be extended than curtailed. I am, Sir, one of your subscribers from the commencement, your faithful and obedient servant,

xW.J. West"


blogzilly said...

I may come across as a complete lunatic, but to me? The lancing of the gums and application of leeches is, in my opinion, that day and ages fuddling about in much the same way we fuddle about with ketogenics and steroids that work maybe sometimes if we happen to be lucky.

Has science advanced?

Yeah of course.

But has it advanced all that much?

That's a really good question when it comes to understanding all this brain SHIT.

You can only feel the pain in those words on the level that we do if you've lived it.

happy's mommy said...

If you're a lunatic...so am I. Had the very same convo with my mother yesterday afternoon.

I think that could be why this letter tugged at my heart so much. I felt as if I could have written it almost verbatim...today.


lisa said...

I had read a portion of that letter before but never the whole thing. I've often thought how very lucky I am to live in the times that I do. This stuff can make you feel helpless enough as it is, and not to know what you're truly dealing with and how best to help? Awful.

Anonymous said...

medicine may have changed a bit...but the helplessness conveyed in the letter resonates and will always resonate with the parents of IS children....