Re: long arms (from Laimi)

[Guest guest]

Hi Laimi,

So good to hear from you! I think of you guys often. I'm glad that Dr. B is

still following your precious, , albeit from afar :-)

I'm so happy to hear that is riding a tricycle, reading, and doing the

sorts of things that kids his age should be doing.

And OMG, I can't believe he turned FIVE already!! Boy, time flies!

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> Hi everyone!

> It has been a long time since I wrote. was not able to walk for 13 ½

months after he was in traction and his surgery in December 2008. He was going

to have an exploratory surgery in October 2009 to check the fusion but he got

Influenza and an ear infection, was coughing for two months, etc. We did the

surgery in January 2010 and the fusion was strong. We lost the growth of two

more vertebrae, though †" a total of 6. He is now walking again with no

assistance and could ride a tricycle by himself for the first time in his life.

> The other good news is that he is already reading Kinder -1st grade books.

Pretty good considering that he just turned 5 a few days ago, we speak Spanish

at home, and he has been learning the meaning of the words as he reads them in

English. 2009 was a very sad year for us, seeing him in bed, missing everything

other children his age were able to do, but 2010 has started very well.

> The cage (a second thoracotomy) was not needed after all, thanks to Dr. Betz

who spoke Dr. Shufflebarger into waiting to see if the posterior fusion would

hold enough by itself, and it did. There have been many ups and downs, but

things seem stable (and I fear as I write this because I live thinking that

things may change at any time).

> I do have one concern at this point. I guess I always look for something…

> I have been noticing his arms look a little bit too long. I measured the arm

span and it is 1½††" 2†longer than his height. I think it is too soon to

believe that his torso is already a lot shorter than it should be because of the

fusion. It has only been 2 ½ years since the removal of the first 4 vertebrae

and only 1 year since the fusion of the other 2. If my calculations are correct,

he must have lost no more than 6 millimeters by now. (5+ centimeters by the time

he is 16 years old).

> He has developed a proximal kyphosis. He went from ~39 to 50 degrees but it is

stable at 50. I don’t think a 50 degree kyphosis brings the arms 2†lower,

could it be the reason? Hopefully the proximal kyphosis will be totally

corrected with an extended fusion when he finishes growing. Anyway, I don’t

think it is the loss of those levels or the proximal kyphosis since his legs

seem to be proportional to his torso. It is only the arms that look longer.

Needles to say that I have checked every syndrome that causes long arms and

there is nothing else in to indicate he has any of those syndromes (Marfan

among them).

> I have been also wondering about the effects of radiation. I read an article

about kids who have received more than 2500 rads in their spines, spinal growth

is stunted, and therefore the extremities look too long; but , even with

the fluoroscopies, and approximately 10 CT scans is not even close to 2500 rads.

> If any of you has been able to find a chart with all the body

proportions/ratios (arm, leg, torso, etc.) of a child by age PLEASE, send me the

link. If you have noticed with your own children that one specific part of

his/her body grows first and the rest catches up later, please let me know as

well. I wonder if it is just normal for some kids to look weird as they grow

but, as always, I am also afraid this may be a sign of something else.

> As a side note, continues to be under the 3rd percentile for height and

weight. Maybe it would be now time to do another bone age exam, but the little

boy deserves a break. Thank you!

> Laimi 

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