Pituitary aplasia is very very rare, even Dr. Google could only give me 2 relevant pages about it. I found out you can google pituitary all you want, and you will find about 20 different disorders related to the pituitary but they never talk about not having one. It's so rare I almost joked to C that we should buy a lottery ticket, but then thought to myself that this luck is so utterly bad luck that we'd probably end up owing the lotto corporation money. "Oh so sorry you found the one losing ticket, please send us a cheque for 1 million dollars."
Here is the most concerning paragraph from the only site with useful information about pituitary aplasia:
Neonatal hypoglycemia associated with poorly functioning anterior pituitary gland may represent a series of separate syndromes with no structural brain anomalies or with defects such as craniofacial defects, absence of septum pellucidum, septo-optic dysplasia, arrhinencephaly, holoprosencephaly, and anencephaly (1). It is well known that anencephalic newborns lack an identifiable pituitary gland and have hypoplasia of the adrenal glands (3,4). Congenital absence of the pituitary gland without a major brain anomaly is a rare disorder. Most infants with this disorder die in early infancy, and the anomaly is diagnosed at autopsy.
I suppose it would be an understatement to say that this is a little bit tough to deal with. And it doesn't help that there are no support groups and practically no one has ever heard of this issue before. I've written out a rather long list of questions for the endocrinologist, I'll try to update as soon as I talk to him.
20 comments:
There are no words. I don't even know you, and I feel like this is happening to someone in my family. I'm so, so sorry that you and he have to go through this, and I hope that the endocrinologist can give you some answers.
Oh sweetie...
I'm trying to hid the tears at my desk at work. I am scared for you. He's a fighter. Have faith in him and confidence in him. He continues to astound us each and every day.
Please update us as soon as you can. I'm worried about you all.
Lots of hugs and love
I can't stop thinking about you, Sky and C. I wish there was something I could do for you.
When do you meet with the endocrinologist?
Ok, when I read that paragraph, what I get out of it is that most infants diagnosed with a lack of a pituitary gland are lacking the gland because they are missing significant brain structure, as in the case of ancephaly. IN some sense, it's like noting that an amputee is also missing their toes.
Babe isn't missing his brain at all, he's eating and looking around and breathing on his own and doing all the things he should. Which is a good thing. Great thing.
The disorders they are talking about are disorders that would have taken a baby very shortly after birth. You are past that point.
Try looking into situations where people lose their pituitary gland as a result of brain cancer. You'll see they survive. Even thrive.
Hang in there. The endocrinologist will be able to tell you more.
Wait to see what the endoc says - he's made it so far already -
Here through L &F
Like, She - I have no words to help but I wanted you to know you are indefinately added to my prayer list.
((hugs))
So so sorry. Will be thinking good thoughts for all of you.
Oh my. Glad to hear you are seeing a specialist -- it's the not knowing that's the scary part. ((((hugs)))
I'm so incredibly sorry to hear this.
Whatever the endocrinologist says, please do get another opinion. I'm also not sure where you are, but there's a top notch endocrinology department at CHOP in Philly.
He's absolutely beautiful, and as someone above said, clearly a fighter. You're all in my thoughts, and I hope you get some answers soon.
I am so very sorry. I hope that since the problem is so rare, your little guy beats all of the odds and teaches the experts something new.
I am so so sorry for your difficult news. Those words convey so little but it's all I have. I said a prayer for you little one!! (here from LFCA)
makingmemom.blogspot.com
Wow, there really are no words that would help. Thinking of you and I hope that the endo is able to answer all your questions.
You, C., and Sky are all in my prayers. Sky's fought this far; who's to say he won't surprise everyone with all that he is capable of?
I don't know what to say. I am shocked and so sad to hear this. He looks as healthy as a bear. I pray that the endocronologist gave you some good news today. YOu are all in my thoughts and prayers.
My god sweetheart..I am so devestated to read this. Thinking of you now EVEN MORE..and waiting to hear what the endo says. He has been really so brave and strong thus far turning into a real little chubby cheeks. So he's a tough little man you have there. xxx
I am so very, very sorry. I am thinking of you and your family praying for you. Hoping you get some answers and some encouraging news soon.
((((HUGS)))))
here via lfca
oh fuck. Sorry, but that's what came out when I read this. I'm so sorry.
Hope you get your questions answered well. ((Hugs))
Here from Lost and Found with my best wishes. Your little boys is so beautiful, what an adorable picture. I've been a nurse a long time and always just try to get out of the way of the parents. Thanks for sharing. Please take good care.
I found a lot more links googling "having no pituitary gland" than the other, just FYI
My little boy also has no pituitary gland and he is ok! He was very poorly at birth but he survived and was only diagnosed at age 3. He is now on hormone replacement and is growing, he is happy, lively, clever, naughty and just like any other 4 year old yet a bit smaller. If he is ok then surely he cant be the only one! Big hugs to you and very best wishes xx
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