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5year old with Pituitary Cyst :(

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Old 03-14-2012, 07:44 PM   #1
Join Date: Mar 2012
Location: Killeen, TX Bell County
Posts: 1
momof2cuties HB User
Unhappy 5year old with Pituitary Cyst :(

I am a mom of a wonderful little boy. He is 5 years old. A week from Monday we had an MRI. I was called with-in hours and notified my son had a cyst on his pituitary gland. The cyst is called a Pars Intermdia Cyst involving the pituitary gland. I do not know the size. We have an appointment to meet with endocrinology, Neurosurgery, and Opthamology. His PCP did lab work up to determine if his harmones were being effected. All blood work was normal. His symptoms include excessive thirst, loss of urine, headaches and he does not sleep well. I took him in thinking worst case scenario he had diabetes. I never expected this. Does anyone know if the cyst can be causing all of these symptoms but not effect his blood work up? If given the option should we do surgery or just monitor? I am terrified. I look stuff up on the internet every free chance I get. I have not met with any specialist. Can anyone give advice?

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Old 03-22-2012, 03:15 AM   #2
Join Date: Mar 2012
Location: Tallahassee
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pitmom HB User
Re: 5year old with Pituitary Cyst :(

I know its difficult to not worry but wait until you have a specialist explain everything to you. My 17 year old daughter was diagnosed with a pituitary adenoma but now the doctors think it is a cyst. After 6 months of MRI, bloodwork, and consultations with an endocrinologist as well as a nurosurgeon (both pediatric and at research centers) we are taking a wait and see approach. It sounds scary but hang in there.

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Old 05-04-2012, 05:49 PM   #3
Join Date: May 2012
Location: UK
Posts: 3
Koubie HB User
Re: 5year old with Pituitary Cyst :(

Hang in there. It does sound bad, but I had mine removed. I have to take tablets for the rest of my life, but I'm alive, and I can live life to the full.

The bad headaches and such sound like me! You are lucky to have found out what it is. If the option for operation is available I would suggest removal, but I know that for a 5 year old, that's not the nicest thought.

The excessive thirst sounds like diabetes insipidus. I had it for a short while - it can be treated and doesn't have to be permanent. If he has excessive thirst and is drinking a lot, be careful to monitor his salt levels as the liquid flushes it out of the body. Supplements might be needed.

Last edited by Koubie; 05-04-2012 at 05:51 PM.

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Old 06-05-2012, 07:39 PM   #4
Join Date: Apr 2012
Location: ny
Posts: 8
giveasmile HB User
Re: 5year old with Pituitary Cyst :(

Originally Posted by momof2cuties View Post
Does anyone know if the cyst can be causing all of these symptoms but not effect his blood work up? If given the option should we do surgery or just monitor? I am terrified. I look stuff up on the internet every free chance I get. I have not met with any specialist. Can anyone give advice?
The back of the pituitary gland makes a hormone which controls urine output. The cyst could certainly be the reason he is having to urinate all day and night. It is not a hormone that is tested often, if at all.

I had a pituitary tumor and the same thing happened. They gave me a medicine (ddavp) that worked perfectly and had no side effects. My headaches stopped when the dehydration stopped.

If you opt to leave the cyst alone, still form a relationship with a pediatric endocrinologist. They will test more extensively than a PCP and know how often to monitor his hormones and MRI.

The pituitary controls growth/stature, sexual development, metabolism/bones, reproduction, urine output, and adrenal function.

Ask about a child-safe drug or dose of ddavp to see if it fixes the urination/dehydration and his headaches/thirst go away. His sleep may also improve if he isn't thirsty or feeling like he has to go to bathroom all the time. Some people only need it temporarily.

My tumor had to come out. The newer surgeries are pretty easy on the patient but they carry the same risk of pituitary damage. Though it is rare, I lost all my pituitary function. While most people do NOT lose pituitary function, you should know about it, ask about it, and understand what it really means.

It's not a big deal for an adult who is already grown, already sexually developed, can afford the drugs, doesn't mind doctors, pharmacists, blood draws and insurance crap, and remembers to take/refill the the pills, patch and shot at the right time. Or for someone who knows to increase their adrenal meds in the case of fever or injury and would never risk adrenal crisis. It would be a big deal for a growing child, sexually developing adolescent and typically forgetful/indifferent young person who feels invicible and can't be bothered with medication.

Again, losing function is rare and should never intefere with an urgent or necessary surgery, but know about it and ask about it and consider conservative steps if surgery is just an option and non-urgent.

Continue to research and seek out specialists and ask as many people as many questions as you need to and you and your son will be fine. The terror is temporary.

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