In the haze that follows a new diagnosis of an infant, there are several things that you can start doing right away.
- Make an appointment with a pediatric endocrinologist. Your pediatrician can give you the name of a good one. The appointment should be made ASAP as it may take 2-4 months to get an appointment. Note that sometimes the geneticist can also take responsibility for prescribing growth hormone.
- Make an appointment for a sleep study. Most pediatric endocrinologists will require a sleep study before the prescribe HGH. It may take 1-2 months to get an appointment for a sleep study. The pediatric endocrinologist or your pediatrician can give you a referral for a sleep study.
- Consider calling PWSAUSA and determining the closest PWS expert to your area. We went ahead and booked an appointment with our closest expert for a second opinion. This is probably not necessary but we have already found it to be useful.
- Read up on HGH from the information supplied by PWSAUSA.
- GH Q&A from PWSAUSA
- Phamacia brochure (pdf)
- Endocrinologist Special Supplement on PWS (pdf) from July 2000. This is reproduced with permission and can be useful for getting insurance to cover PWS.
My personal views on GH
The thing I cling to above all is the belief that early stimulation can lead to cognitive development. I believe that GH allows for movement which allows for exploration of the environment which allows for the neurological stimulation which allows for cognitive development and normal intelligence. Read the posts of the moms of kids who went on GH early. Their kids are of normal intelligence and sometimes even smart. There is no proof that it is the growth hormone that allows for this, but I believe that it is a huge component.
What to Expect
Every child responds differently to starting GH. We thought that we could imagine improvements after a week. After two weeks we saw improvements. The most striking thing we noticed, however, was that Kian no longer floated on top of the water in the tub. Instead, after one month his little body was below the water with only the tips of his knees breaking through the surface. Now after 2 1/2 months on GH, his body sinks so that it touches the bottom of the tub. I attribute this change in flotation to the change in body composition toward decreased fat and increased lean muscle.
Here is another mother's story: Georgie just started it on November 19th - He was 4 1/2 months old. After reading all the posts about what to expect, I really had no clue what would happen. 2 days after starting it, he rolled off of the couch! Although I was scared to death (he was fine after a checkout at the ER) I was totally surprised that he had moved at all! He had kicked and moved his arms but had never even begun to roll. That day he didn't actually roll over but had rolled to his side and his momentum carried him off the couch. Regardless it was phenomenal progress in a couple of days!
As of today, he has been on GH for 4 weeks. While he is still sleepier than a "normal" child, he is much more alert and awake for much longer. He is so much more vocal than before and actually cries when the bottle is taken out of his mouth and he's not finished with it. He smiles more and is just so much more like an average baby. When my daughter was an infant and she cried, I felt anxious and stressed. Now when Georgie cries I smile to myself and actually laugh because I can't believe he's making noise!
He's still small - 24 in long and 11 lb 8 oz at 5 months, but he's growing. His head control has improved incredibly and his legs are getting much stronger. I know that the GH affects our kids differently, but so far it has been like a miracle for Georgie.
With regards to GH, please don't rule out the contributions that GH can make to the development of the central nervous system, specifically cognition. I know that there are no studies yet to show that GH increases IQ in our kids, but I know that my son's developmental pediatrician believes that this will be shown to be true.
I think if you spend some time researching you will see that, while not proven with PWS, there is reason to believe that GH could improve cognition in kids with PWS. For example, GH declines with age and this decline is theorized to be related to the decline in cognition associated with aging. See the first abstract below. Also, you see below an abstract on 18q deletion syndrome where those kids had an average nonverbal IQ increase of 17 points with GH. I am sure that there are better abstracts out there to make my point, but I don't have time right now to research it. Just please throw this cognitive component into the mix while you are considering.
My little boy is now 19 months and has been on GH since he was 3 months old. To the extent that such things can be measured at 19 months, his intelligence appears to be comfortably average. Of course I am his mother and I am convinced he is brilliant! :)
Eur J Pharmacol. 2004 Apr 19;490(1-3):87-95. Related Articles, Links Click here to read Insulin-like growth factor-I, cognition and brain aging.
van Dam PS, Aleman A. Department of Internal medicine, Onze Lieve Vrouwe Gasthuis, PO Box 95500, 1090 HM Amsterdam, The Netherlands. firstname.lastname@example.org
Aging is associated with a decline in the activity of the growth hormone (GH)/insulin-like growth factor-I (IGF-I) axis. As aging also coincides with a decline in specific cognitive functions and as some of these dysfunctions are also observed in subjects with GH deficiency, it has been hypothesised that a causal relationship exists between the reduction in circulating GH and/or IGF-I and the observed cognitive deficits in the elderly. The present review summarises the available data concerning the possible relation between GH, IGF-I and cognitive performance, and regarding possible underlying pathophysiological mechanisms.
Am J Med Genet A. 2005 Aug 15;137(1):9-15. Related Articles, Links Click here to read Growth hormone benefits children with 18q deletions.
Cody JD, Semrud-Clikeman M, Hardies LJ, Lancaster J, Ghidoni PD, Schaub RL, Thompson NM, Wells L, Cornell JE, Love TM, Fox PT, Leach RJ, Kaye CI, Hale DE. Department of Pediatrics, University of Texas Health Science Center, San Antonio, 78229, USA. email@example.com
Most individuals with constitutional deletions of chromosome 18q have developmental delays, dysmyelination of the brain, and growth failure due to growth hormone deficiency. We monitored the effects of growth hormone treatment by evaluating 23 individuals for changes in growth, nonverbal intelligence quotient (nIQ), and quantitative brain MRI changes. Over an average of 37 months, the treated group of 13 children had an average nIQ increase of 17 points, an increase in height standard deviation score of 1.7, and significant change in T1 relaxation times in the caudate and frontal white matter. Cognitive changes of this magnitude are clinically significant and are anticipated to have an effect on the long-term outcomes for the treated individuals.
Maybe GH helps with hunger...
Hauffa BP, Haase K, Range IM, Unger N, Mann K, Petersenn S. The Effect of Growth Hormone on the Response of Total and Acylated Ghrelin to a Standardized Oral Glucose Load, and Insulin Resistance in Children with Prader-Willi Syndrome. J Clin Endocrinol Metab 2006; . Keywords: Endocrinology/Fasting/Follow-Up Studies/Germany/ghrelin/Glucose/Glucose Tolerance Test/Growth/Growth Hormone/Insulin/Insulin Resistance/Prader-Willi/Prader-Willi Syndrome/Syndrome/therapy Abstract: Context: Fasting levels of plasma ghrelins are grossly elevated in children with Prader-Willi syndrome (PWS). The cause of this elevation and the regulation of ghrelins in PWS is largely unknown. The regulatory role of individual nutritional components and of growth hormone (GH) is not well characterised. Objective: We investigated the influence of GH on acylated (aGhr) and total ghrelin (tGhr) concentrations before and after an oral glucose load, and on insulin resistance in PWS children. Design, Patients and Interventions: In a clinical follow-up study, plasma ghrelins were measured during an oral glucose tolerance test, and parameters of insulin resistance were determined in 28 PWS children before and/or 1.18 (0.42 - 9.6) years (median, range) after start of GH therapy (0.035 mg/kg body weight/d). Main Outcome Measures: Fasting and post glucose concentrations of aGhr and tGhr, and HOMA2 insulin resistance were the main outcome measures. Setting: The study was conducted in a single center (University Children's Hospital). Results: High fasting (1060 +/- 292 [SD] pg/ml; n = 12) and post glucose trough (801 +/- 303 pg/ml; n = 10) tGhr concentrations in GH-untreated PWS children were found to be decreased in the GH treated group (fasting 761 +/- 247 pg/ml, n = 24, P = 0.006; post glucose 500 +/- 176 pg/ml, n = 20; P = 0.006). In contrast, aGhr concentrations and insulin resistance were not changed by GH treatment. Both aGhr and tGhr concentrations were decreased by oral carbohydrate administration, independent of the GH treatment status. Conclusions: Our results indicate that in PWS children aGhr and tGhr are differentially regulated by GH Notes: Dept of Pediatric Hematology/Oncology and Endocrinology, University Children's Hospital Dept of Endocrinology, University Medical Center, University of Duisburg-Essen, Germany
Don't buy "HGH supplements"!
Much of the information you see about HGH on the Internet (including, unfortunately, the Google ads that may appear on this website) are not for the FDA-reglulated Human Growth Hormone. Instead, they are largely fraudulent pitches for herbal supplements that they say "release" or "activate" HGH. In fact, these ads and products have nothing to do with HGH, which is a very powerful drug that is controlled by the FDA. Please do not get confused and believe that that these cheap (and, frankly, worthless) herbal supplements are any replacement for physician-prescribed HGH. Nearly every HGH ad will try to create that confusion. These "supplements" are in no way effective for PWS sufferers (or for anyone else).