Hey everyone! I originally typed this out into an email to my mother, so please excuse the typos and understand it was written for an audience of 1 at the time. *grins* ..this is the follow up for Julia's Pediactric Endocrinology appointment and Joey's Pediactric Neurology appointment, both at Addenbrooks hospital in Cambridge.~K
hi! i have been gone all morning. julia had her endrocrinologist appt today in cambridge. it went really well. a good friend came with us to stay with the children in the waiting room. another friend had mentioned to me that if i was concerned about Julia overhearing "concerns" about her growth and not wanting to worry Julia or anything, then to ask someone to come with us and when they were done with the examination to have Julia go into the waiting room while the doctor spoke with us. i was ALL for that!
When we got there they measured her standing height, as well as her height when sitting, from her rump to the top of her head. they also took her weight. asked us some basic questions, birth weight, full term, any delivery complications etc (4 lbs, 11 oz, yes full term, no complications normal birth) they also took my height, my birth weight, and joe's height as well. then we waited more in the waiting room (which was awesome. i totally wish i could transform my house into their waiting room! it was so kid friendly and had tons of activities for them to do. they didn't want to leave 2 hours later!!)
Finally the "Proffessor" called us back, took a look as Julia, went over the notes his nurse had taken, asked some of the same questions. we talked a lot about family history as well. he made an offhand comment about how nice it would be if we had information from the parents childhood, notes records..etc. i told him we had looked for them but couldn't find them, but i did show him the photograph you sent of me at 5 and Israel at 2 1/2 and how we were so close to the same size. he chuckled at it and said it was very helpful and thanked me for it. (SO glad you thought to send it!)
i thought it was very interesting how they did both her standing and sitting height to get a comparision on her total body proportion. we learned that her leg length is completely normal and that she "falls short" on her upper torso...the length from her head to her bottom is considerbly smaller on the chart. so he studied her spine, made sure there was no curvage to rule out short height by scoliosis. asked about her bowels to rule out diseases such as celiac disease (which is when you have trouble absorbing nutrients because your body lacks a certain chemical to break down certain things...basically gluten. it is fixed with a change in diet. but her bowels are fine so that is ruled out) asked about the tests they did for chromosomes and that had been ruled out as well as a thyriod levels or a growth hormone difienciency. so..all those things ruled out he wanted to order a xray of her back just to make sure her vertebre are growing as it should as that seems to be the area that is smaller than normal. he also wanted to repeat the bonescan on her hand for a bone age as their machines are a bit more hightech for such tests than the base's.
both joe and i felt a real peace with this doctor. he was very relaxed, yet doesn't want to just "Assume" that genetics is the answer. he said he is leaning towards that way and just wants to confirm it for us through a process of elimation on non-invasive tests. he doesn't believe we need to put Julia through the ringer,which SO relieved me. neither joe nor i wanted to do a whole swarm of tests on our little girl just to say, yep she's small like mom, like grandma, like her great aunts and second cousins and great grandmother..go figure! but at the same time there are little easy tests we CAN do to make sure we dont miss anything either. i feel so much more comfortiable with this guy than i did with the initial gal onbase. i dunno..maybe it is because she seems to have this sense of urgency, whereas he doesn't. he wants to be thorough, but only as much as what is truly needed...if there isn't a NEED, then let's not push it. (my sentiments EXACTLY!)
i did NOT realize though that the Brits do not push growth hormones for cosmetic reasons, whereas in the states they do! in the UK they only prescribe them when there is a TRUE natural deficiency from the Pituitary Gland and you are just giving the body what it is naturally lacking. joe and i completley agree with this. we want Julia's body to work as God would have intended in the Garden of Eden before Sin and sickness came and took it away...we DO NOT want to alter her system if it is working correctly, in order to try to cosmetically maintain her peers height when her peers parents are 5 1/2 and 6 foot tall and Julia's parents are 5 foot and 5 foot 9 inchs tall! (btw, they also asked what your height and what dad's height is, as well as Joe's parents height too...i loved that. i loved that they are considering all factors from both sides of the families)...It was just alarming to me that The States would deem cosmetic reasons as valid enough to push hormones on a child! i cant remember the exact words he said, but something about "growth hormones becoming more readily used for cosmetic reasons in the USA, but they don't do that in the UK" my mouth dropped and i asked him to repeat himself since i was not aware of that, as though "short stature" is some dreaded disease needing a cure!!? then i laughed and said, "i'm rather insulted. i like being short!" this makes more sense though....why the doctor on base was so adamant about "seeing if Julia qualifies"...."qualifies"?? who uses a word like "qualifies" with growth hormones? "qualifies" like as for a car loan? *groans*
so... anyway, julia got "pictures" taken of her back and her hand today. 6 months from now we will return for check on her height both standing and sitting again to compare. he said at this age kids typically grow 5-6 centimeters per year. so in January if Julia grows around 2-3 centimeters then she is just normal healthy Julia and we needn't worry. If she hasn't grown any we will repeat the xrays to compare and possibly talk about doing a growth hormone test.
with this test they insert a small heplock like catheter thingy and draw out a bit of blood. then they will give her something which should make her own growth hormone in her body react. after abit of time they will take another sample of blood to see measure the growth hormone levels and compare to the first sample. it seemed like a similar test to the glucose screening they do in pregnancy, take your blood, make you drink something to make your own body react by secreting insulin..etc, take another sample of bkood to compare your sugar levels...except instead of measuring your glucose/insulin levels, they are measuring growth hormone production. IF this test showed julia's body is lacking in the growth hormone levels, they would do a subsequent MRI to take a screening of her Pituitary Gland, is it small in size? is it developed normal? is there anything i n her brain that is possibly keeping it from developing..etc? this would just be to confirm and access what has caused her body to not produce the needed hormone. IF she truly lacks growth hormone, it is a "simple" injection..once again, similar to insulin injections for the diabetic....BUT he doesn't think growth hormone is really something to be concerned about with her. he said typically in such cases there are other factors that contribute to a hormone defiencency and Julia doesn't exhibit any of those. She is anormal, healthy, active child. (really he only went into details about these test beucase joe and i kept questioning about "next steps"...we were very open with him that we do not want to be more invasive than what is necessary and we are NOT interested in doing growth hormones just to make a short person tall if there was no true defienciency. cosmetic reasons are not good enough for us. he completley agreed, i LOVED that this doctor is on the same page with us.) i truly feel at peace with him and that God has truly answered our prayers with this doctor. i know, whatever turns out in time, truth will come of it. that we aren't pressing for something that isn't truly there in hopes of some cure of the dreaded "disease" of short stature (God forbid! *rolls eyes*) and i truly feel at a peace that if we find "something" it will be because it needs true treatment, and if nothing is found abnormal in these beginning tests then we won't be pressing on with more invasive things that are not needed because obviously nothing is "wrong!"
anyway, i'll stop before i have to pull out my soapbox lol. so all in all it went very well. both joe and i feel a peace about seeing this Professor Hughes. He reminds me a bit of my old OB in the states..With enough experience to know when to not worry about things, he can sift through what is normal and what is really a red flag, and also have enough knowledge to not be arrogant or naive either. there is a balance between these which is so important. i dont want a doctor freaking out believing everything is an emergency of somesort or everything needs medication of some sort, but i also don't want a doctor too arrogant to look for things or research or check things out when it is needed either.
so that's the scoop on Julia. her next appt for a recheck on height and possibly another round of xrays is January 8th, 2008.
as for Joey's appointment with his Pediatric Neurologist last thursday, it went fine. he was deemed "completely healthy, active, infant boy". the nuero was fantastic. went over him with a fine toothed comb and listened well to us as we recounted his shaking spells..etc. She kind of said the same thing the ER doc and his pediatrician said, not quite sure what it was, but wasn't siezure related and he shows no red flags or signs for other neurological conditions. it was more reassuring coming from a specialist trained to easily pick out concerning symptoms in children and knowing that she found none in joey.
he is doing fantastic by the way. scooting and pulls up to crawling stance on knees and hands, rocks back and forth but doesn't know how to move his knees and balance his weight yet, so no crawling yet. and he got his second tooth this last Sunday at 7 months, 1 week old. he is following closely behind megan...she got her first tooth at 7 1/2 months if i remember right.
so anyway, that is our update! thanks for all your prayers on the doctors. i believe they have truly been answered. :)
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July 16, 2007 - Good news!