At first I want to speak out how sorry I am about your son's death.
What a loss !!!
A lot of people say they believe to know how it feels, but sadly we know it fot real.
Secondary, i'm glad to hear from you and being a listning ear, and maybe we can share some of the emotions as well as experience.
I'm Paul (47), married to Thérèse (45), and we have two sons, Danny* who died 5 weeks old in 2002 and Noah (may 2004)
If I make mistakes in my English, it's because I'm from Europe, The Netherlands, often called Holland, although some people only know the capitol Amsterdam.
We live in the most south-east part, near the borders to Belgium (capitol Brussels) and Germany.
That's why my website is in Dutch, although you can translate it for example with Google.
Yes, we lost our son Danny* 5 weeks old because of mistakes and not-responding by the hospital. His problems were the result of PHP/AHO, a bad start from a pre-eclamspia, a non working thyroid, and oxigen deficency in that bad start.
After 16 days at a ventilator, he came of and two days later we were breatfeeding ( my wife ofcours). But that didn't go very well, with Therese, because of stress, and afterwords we know, she has also hormone-resistence because of Albright's.
With more bottle milk, Danny* developed new problems, with spitting and diarea. The hospital (weekend) gave us the idea, they did everything, but he got more sik.
Monday morning we found him, choking in his vomit, and nobody had noticed. The alarm was rong ajusted, and the nurses had just have to look through a window, but they were busy drinking coffee. It was 9.30, they started working at him, but 14.45 afternoon it was over. They pulled everything, and he died in our arms............
With our second son Noah (5 1/2), we searched for 3 years before we had the right diagnose. At 1 1/2 years doctors were at a diagnose Albright's, but the gen-test said no, but with 3 years we found out, the test was not good enough, Noah has Albright's. Because of the negative test and few knowledge nobody looked and treated Noah for his low calcium and high phosfates.
The most important in aho is treatment with vitamine D (alfacalcidol), and alongside extra calcium, to make sure that the blood calcium is high enough and the phospates go down.
Secondary, most children need thyroid hormone, test not only in tsh (thyroid stimulating hormone) but also the thyroid hormone itself, and even that is not everything, because aho is known for bad use of the hormones even if thy are present in the right amount.
I know the name of dr. Germaine Lee, and her research of PHP/AHO. She also on my website at page 16.
Because even the hospital was not able to supply us with good information, I started my own research, for good info, by serious medical website's and research, translated it and wrote my own website about it, to fill the gap of knowledge, present here.
And in a way that normale, not medical, people can use it to.
Furthermore it's also a memory site for Danny* with his story and some foto's.
I just got a newe url/name for my website, with seperat hosting, but it's not yet active.
So, for the moment you can find our site at this adres:
Noah is doing resonable well, but he has a long way to go, his speech is a big problem to.
His development age is under 2 years old, by an age of 5 1/2.
We started potty-training some weeks ago together with his day-center, but that's also a long story. He wears diapers alday (and night).
Hope hearing from you again,
with a big hug for the 3 of you,
Paul and Thérèse
Danny* and Noah