I had two pituitary tumors. I can understand. I had Cushing's and a prolactinoma. I am currently panhypopituitary, and that includes growth hormone deficiency. So I take the injections nightly as well.
It is possible that the lesion was there before but was missed - one of mine hid for 12 years. It can fall between the slices, or if the MRI is not dynamic, then it may not show up as well.
Odds are, unless the tumor is large, they may just monitor for this type of tumor as it is causing only a low hormone (whereas mine were causing high hormones). He will also need eye checks.
I can put you in touch with an organization where there are bunches of children with the same issue, and you can even meet some of them in person. Hang in there.
Thank you for sharing your story. I'm trying. I don't know what to expect. I'm so scared of not knowing what to expect. It's hard to wait 6 months to see if the tumor will grow or not, when they know it's there, why not just remove it now before it escalates into something more, then perhaps he will grow without having the daily injections. I read something from the Mayoclinic website where they can do some type of endocscopic surgery if the tumor is small so I printed that out to show the doctor. I have so many questions for the neurosurgeon this Thursday. He has so much going on with ADHD & asthma too & is such a good boy, very sweet, so innocent. I don't know why ths is happening to him. It is people like you who help me out to learn more and it so much appreciated. Please keep my son in your thoughts & prayers & we will do the same for you!
I had the endoscopic surgery. That is pretty typical - but he needs more testing to figure out the type of tumor at this time - it may be the pressure of the tumor that is causing the low GH (that does happen), it could be a cortisol secreting tumor as that can lower growth hormone and stunt growth (not everyone gets heavy but it is unlikely in your case it seems but the ADHD fits that) and there may also be other hormone issues like thyroid etc.
You need a great pediatric endo.
i dont understand it either. i was diagnosed with a probable 2mm tumor or lesion ,and i begged the doctors to remove it while it was small. its not an invasive surgery really..and i can feel good again. i dont have answers on why they refuse to do it, but i think ''in their opinions
' the risk of surgery is greater than the reqard. they think the tumor is to small to cause symptoms which is not true at all. ive had mine since iwas 18 and i am 20.5 now.
i suggest getting a dynamic 3t mri also. i have a neuro appointment tomorrow, and im really gonna try to stand up for myself, and request one of those! it is very tough to stand up to these doctors, but remember its your money that goes into their wallets so they better lsiten to you or you find someone else.
its been over a year since ive had an mri !
The surgery is invasive, and you are not diagnosed with any condition as your blood, urine and saliva test have not pointed to any condition. No surgeon would order surgery under those condition and besides, it is an endo that orders surgery.
Peg's son clearly has a condition that needs to be treated, but her son may not need surgery either.
Not every tumor needs surgery. Many now can be treated with medication. It all depends on the type and size.
you dont know all my blood tests, and yours didnt point towards surgery either, but look how you turned out...fact is there is a tumor in my head..and yes it is invasive but minimally, and there is no reason that it shouldnt be removed while small.
i was diagnosed with just as much as peg's son was.
but this thread is about peg's son.;0
There is a very nice group called the Human Growth Foundation (you can google it). They have a group of parents who have children with Growth Hormone deficiency. I think that you would be able to get some nice support there that is very specific to your son. PM me if you can't find it.
Thanks everyone for all your comments. My son has a great Endo & also a great Ped doc same one since an infant and the Endo had informed me as well as the Ped doc to get the opinion of the neurosurgeon who will review the MRI from 12/09 & the MRI done last Friday. Both the other doc's said it is up to the neurosurgeon to decide if we should wait it out or have it removed. I value all there opinions but with todays medical technology I just simply believe it is shouldn't be there then get it out of there but I don't want to put my son through surgery if we can prevent it but then I don't want it to come down to him having these horrible headaches & vomitting etc, just to end up having surgery anyways. The Endo does have a say in if he feels it is necessary but the neurosurgeon will have the final word tomorrow so we'll see. I know every situation is different, according to size, age etc...lab work does not show any that any tumor would exist is what I was told when the labs came back but he does have an under active thyroid now too. He has been on the GH injections since December with only 25% effectiveness. I just say get that tumor out of my sons head before it does grow into something worse. It's hard to absorb & I appreciate all your advise and will look into all the websites that everyone has suggested. God bless all of you for the time you have taken to help support me. I'm just emotionally a wreck right now & been cleaning the house like crazy, shampooing carpet, everything to keep my mind preoccupied. If you pray...please pray for my son & what outcome may be.
Underactive thyroid (low TSH) is pretty typical of a pituitary tumor. Mine is .0004. It will also stay that way after surgery and hence TSH can never be used in a pituitary patient as a marker - have to use Free T3, Free T4 to determine what the thyroid is doing.
Let us know what the surgeon says. Please also find out the number of pituitary surgeries he has done - it should be over 500. If not, I would seek out another. Make sure it is endoscopic, not microscopic, so the surgeon has a better view, too. Nostril entrance is newer than lip, but sometimes the sinuses are too small for a nostril. Find out his experience in surgery on children as well. Your son may also want to know about packing vs no packing as kids may prefer none as it may seem confining/scary to wake up with that in there nose and not being able to breathe normally. Experience really tells in this surgery. I know a lot of people that have had it.
Thanks for that advise! That is interesting to know. The appt is at 1:30 and I'm just a wreck. I did research on this doctor and he is ranked one of the best in the country and it did mention endoscopic in his bio. I will ask include that question with my notes about how many surgeries he has done in pediatric cases. My son is petite so that does concern me about the sinuses being too small. We'll see what he says..he't the professional & you want to trust their judgment with your kids life, but if or when it comes to them saying lets wait 6 more months to see if it grows, I just can't buy that, it don't belong there so get it out of there before symptoms worsen makes sense to me. But, I don't want to put my son through surgery either. It's just a nightmare. I will let you know what he says. Thanks again for all you feedback!