<p>We have heard from the drug company, which has reviewed all of our tax info etc. The company, Saizen, has determined that we are eligible for one year of growth hormone and we are to pay 10% of the total cost. We can reapply for the same next year. We are grateful and astonished. The insurance company is completely out of the loop–growth hormone is excluded from coverage, no if ands or buts. </p>
<p>We don’t know what the total cost for a year is yet, as it depends on dosage, but even if it is $40,000/year the little guy can grow and the big kid can stay at her LAC!</p>
<p>Thanks to all of you who offered advice, encouragement and your own experiences!</p>
<p>Congrats! This must take a load off your shoulders. $4,000 isn’t anything to sneeze at, but it is better than not being able to afford the medicine at all. And it is deductible…</p>
<p>If you or your spouse can take advantage of Flexible Spending Accounts, you can pay for it (or a good portion of it) with pre-tax money. That helps with your taxes immediately</p>
<p>definitely take sueinphilly’s advice if you have the flex spending accounts. We used them to pay for our kids’ braces, effectively reducing our real cost by our marginal tax rate. That’s a substantial savings.</p>
<p>Wonderful news Wellspring!! I admit, I completely missed your original thread since we were out of town. But, I find this an extremely interesting topic. I’ve had my concerns about my son who is 14 (will be 15 in December) and has just finally reached 5’ in height. He has been very slow to meet other physical milestones including losing baby teeth and onset of puberty as well. Because my in-laws are such small people, the docs have just assumed his small stature is genetic. (I am 5’7", my husband is 5’8"…but my in-laws are 4’11 and 5’5". On my side of the family, the men are commonly over 6’4" and women over 5’7".)</p>
<p>I now have my worries that we have missed a window of opportunity for hormone treatment and that I should have been pressing for more testing. I hope you don’t mind my asking, but was it doctors who insisted on testing or did you have to be proactive along these lines?</p>
<p>Idmom06–We too have a small family and s was always small. But his pediatrician was never concerned because he grew according to his own curve. That is to say, he was always at the 10% level on the growth chart. But he started to fall off the chart at about age 12. His doc had his bone age measured and it came out to be age 10, so she said there was no need for concern. However, she left the practice and we moved s to another doc, who said things like, We’ll keep an eye on this. It was the allergist who only sees s once a year and who noted little or no growth who said, insist on getting this kid tested. We are fortunate to live in a city with a very good children’s hospital and the endocrine doc there started us on the testing path. I don’t know when or if we would have gotten there without a push. I understand that boys have a longer growth period than girls (to 17 or so) so I would encourage you to insist, as we did, on testing.</p>
<p>Our S has been on growth hormone for the past few years…our sitution much like Wellspring’s. He got a late start because he was “on his own curve.” Thankfully, our Endocrinologist kept a close check and got him started AND Kaiser pays for it…(which is amazing!!!)</p>
<p>Some warnings: Growth Hormone therapy is not simple. For kids getting close to puberty, they may need to take injections to slow or delay puberty so that the GH can have a longer period to work. GH can cause a drop in Thyroid hormone, so add taking oral thyroid meds to the regimine. Oh, and GH can result in osteoporosis, so be careful. S had a femur fx that might not have occurred had he not been on GH…so now add Fosomax to the regimine.</p>
<p>By the way, Wellspring…When you are calculating costs, dont forget that your S will need medical check ups every 2 - 3 months, mulitple lab tests prior to each visit, periodic bone-age xrays and needles. The cost and co-pays can add up if your insurance co. won’t pay for the related expenses either. Again, I say hooray for Kaiser.</p>
<p>Great news, Wellspring. Good for you in persisting. I have your S gets all the benefit possible with the least hassle possible. I have always wondered about whether we should have pursued this avenue with our boys, but they have always stayed on the growth chart, albeit the far end. Our pediatrician has always reminded me to look in the mirror and have my H do it, too. It certainly seems to be the genetics in our case.</p>
<p>My son was also growth-delayed–under 5’ tall and less than 80 lbs at age 15. I finally pushed the pediatrician for more than just periodic height and weight checks, so he referred us to an endocronologist. Diagnosis was Crohn’s disease, an inflammatory bowel disease. DS’s body was not absorbing what he ate due to the inflammation, so essentially he was malnourished. </p>
<p>Today at almost 22, he is 5’7" and ~125 lbs–still no giant, but happy and healthy.</p>
<p>That’s interesting cincy gal…you bring an important angle into play…weight.</p>
<p>My son is just at 5’, but actually looks like he will be muscular and stocky like my husband. Until last year, he had always been in the lowest 10th percentile in weight and height and proportionate. (He too wore the same pant size for more than two years at atime during elementary and middle school.)</p>
<p>But now he is still short, but is no longer thin…has a very broad back and shoulders, and thick limbs. He now wears mens’ small shirts and boys’ 12-14 jeans (AF/Hollister sizes). Shorts are fine, but I have to have the jeans shortened a LOT. He is still baby-faced and the girls’ all think he is ‘too cute’. And he also had to have 12!! baby teeth pulled this summer.</p>
<p>I wonder if this indicates it truly is just a genetic thing. All the men on my husband’s side of the family were short, but very athletic (big muscles). So question: When there is a hormone issue, is there an inability to gain weight as well as an inability to gain height, as with Crohn’s?</p>
<p>Btw…he truly is okay with being short…he likes to embarrass waitresses when they offer him the children’s menu. But he gets passed over for certain field percussion instruments because of height (bass, toms) which I think is unfortunate.</p>
