Endocrinology Visit

Yesterday was Lily's endocrinology appointment up at Tufts with Dr. Bansal.  She goes every 3 months to check in with her doctor.  He likes to be able to check her height and growth and draw blood labs to check her insulin, glucose, A1c (monitors how good blood sugars have been over the past 3 months as a whole).  He also checked her Celiac levels, Vitamin D, Calcium, Phosphorus, growth hormone and had her get an X-Ray so we would have a better understanding of her bone density (all those labs are for some of the nursing girls who would like to know about the treatment!). He also checked her thyroid levels.  Although she is the total opposite of someone whom you would assume to have hypothyroidism, she does have a past history of it and her numbers are usually borderline for meds.  Someone with hypothyroidism has a slower metabolic  rate (think Oprah, she has it!) and are usually heavier, sweat alot, fatigue, constipation, irritability, etc. Hypothyroidism is when your thyroid just isn't making enough of the hormones it needs for a normal body function (in a nutshell).  It is one of the clear signs of Turner Syndrome and a lot of girls have trouble with their thyroid. They check a hormone in the blood called the TSH (thyroid stimulating hormone) and the  norm is between .5-5.5.  Lily usually runs around 7, but her doctor doesn't want her on meds unless she is around 10.  I love that about him.  I love that he isn't quick to just throw meds at us and ship us out the door.  He really doesn't put her on anything unless she absolutely needs it.


We had the growth hormone chat yesterday as well.  As some of you know, Lily was on growth hormone last year for about 6 months.  She did fabulous on it and grew about an inch and gained 2 pounds.  May not sound like much, but when you are 4 years old, 37 inches, and 27 lbs, it is a ton!  The hormones were doing great.... then we lost health insurance for a 3 month period.  Health insurance will be the death of me.  So many red tapes to get through, approvals needed, referrals for this and that, and so many No's! So when we switched from Children's to Tufts (I am probably the only Children's Mom in the world that doesn't like the care they give at all!) last September, her doctor wanted to get a feel for her growth on her own.  He wanted to monitor her for a few months and then reevaluate what she needed.  When he took her labs when we were last there, her growth hormone levels came back normal, but he is going to start her again on the hormone.  I am really excited for her to start them again.  Lily is such a tiny girl.  When I go into her Pre-K classroom, her "smallness" (if you will) sticks out ten-fold.  She is at least an entire head shorter than everyone in her class. I am really excited to start her on the hormone again and see how she does on it for an extended period of time.  The growth hormone is given as an injection once a day in either her thigh or arm.  It is given subcutaneously, so it doesn't have to go into a blood vessel or a muscle.  Lily hates the shots, but was finally adjusting when we lost the prescription for it.  A lot of people ask me about the side effects of the growth hormone, and they are serious, however, the benefits definitely outweigh the risks for our family.  I think every family has to sit down and make their own decision about it, but to be honest, it was a pretty easy decision for us.  The risks include a slip of the growth plate in the hip which would require treatment, and the severe and sometimes fatal risk of increased intra-cranial pressure that has to be managed IMMEDIATELY.  I have gone into her school and explained to her teachers and school nurse that if Lily ever had any migraine or severe headache symptoms that an ambulance needs to be called immediately and she needs to be taken to BOSTON and not some hospital around here.  Like I said, these side effects are SO rare, but with Lily, we have had some of the rarest occurrences happen, so everyone in her life needs to be aware of warning signs.  The growth hormone therapy costs upwards of $10,000-$15,000 per year.  It is not a drug that many insurance companies want to pay for.  Since Turner's is one of the FDA approved treatments for growth hormone, I am hoping she gets right on it (though last time it took 10 months to get her on it). I am really excited to start the injections again and I hope we can get them going within the next couple of months.


He also wanted an X-Ray of her hand in order to get a picture of her bone density as that is a problem with Turner's girls as well.  I will be interested in seeing those results.  

Love at 1st Sight!

So after our 5 hour long adventure for a 45 minute appointment, we made it home!  I will keep everyone posted on her labs!  Cross your fingers for our growth hormone treatment as well!  Thanks everyone!