Anyone have anything similar to this? Or know of anyone? As a result of this micro- tumor, my daughter is experiencing precocious puberty. Doctors wanted to put her on Lupron (11.25 mg) monthly shots to shrink the tumor and control hormones - she is only 50 pounds and very petite. I am working on getting a second opinion due to the type of tumor she has as I prefer not to subject her to such a high dose of Lupron if possible.
Any feedback would be greatly appreciated. Finding people that have /had similar experiences are incredibly hard to find.
I would find a really good pediatric endo - precocious puberty is a symptom and he needs not to treat the symptom only but find the source. It does not sound like he has run any genetic tests or found the hormonal reason being pituitary or adrenal for the reason - and then it can be treated for the cause and not just overload her with meds or hormones which may have other side effects.
Have they determined for sure it is LH and FSH secreting? That is a pretty rare tumor - so you can contact NIH and get treatment there. They take on children with odd cases. The magic foundation can be very helpful too as you and your daughter can be put in touch with others with the same disorder. Other types of pituitary and other syndromes can cause precocious puberty so I would really get some good sets of testing.
I've been to 2 pediatric endocrinologists. The first one discounted everything to say "kids these days are starting puberty sooner" and "lets just wait and see". My daughters had 2 MRI's (the first (march 2011) didn't do the dye and they found nothing" and the second on (Sept 2011) with dye and found an FSH and LH secreting tumor on her pituitary micro adenoma (4x4x3). Her hormonal test results concluded this, as did her ultrasound that found her right ovary 2x the size of her left one, with evidence of a thin uterine lining.
The 2nd pediatric endocrinologist I was working with wanted to put her on 11.25 mg (monthly) shots of Lupron Depot PED in hopes to control the hormones being secreted by the tumor (size: 4x4x3) and attempt to shrink the tumor. I am not comfortable "masking" any symptom let alone with subjecting my daughter to Lupron – especially 11.25 mg for her barely 50 lb body weight. The endocrinologist has never had any child on 11.25 mg before but thought she wanted to treat the tumor aggressively. I thought to myself - "are you kidding?? you want to use my daughter as a test trial? NOT".
So - I researched and found a place in Charlottesville, VA that has a pituitary adenoma clinic for kids at the UVA Medical Center. For which - I am seeking a second opinion from a Dr. John Jane, jr.
Now, another anomaly has popped up with my daughter for the past 2 weeks. She's been running a low grade temp of 99.4 to 101 (with an average of 99.6) for over two weeks now - with no other symptoms. I've taken her to 2 different pediatricians and they say everything looks normal. WBC - normal. No strep, no sore throat, no ear aches, no tummy aches, etc. - but just overall extreme tiredness. For a normally active 8 year old girl - it's tough to see her so tired most of the time. The endo doctor said that her temp or fatigue has nothing to do with her pituitary tumor. So, I'm at a crossroads. The endo doctor said that if the tumor was cancerous - it would not secrete hormones - is that correct?
In addition to the pituitary tumor, low grade temp and fatigue, my daughter started experiencing a condition known in the medical field as Micropsia, in which her eyes perceive things to look smaller than they actually are at times. I discovered this term online when I realized that other parents have kids that complain of the exact same thing. The rate of occurrence is often (almost daily lately) and usually only lasts 10 seconds at a time. My daughters eyes can also be extremely sensitive to light (sun or indoor lighting) to the point that she puts on sun glasses and her ears get very sensitive to sound. When I ask her if her head hurts, she says no and her optometrist says she perfect vision.
A lot of info to absorb - but if anyone has any suggestions, I welcome them. Thanks for listening...
Run from any endo doc that says fatigue is not caused by a pituitary tumor - go to any board and you will see that is pretty much the #1 symptom... headaches as well. Has she had visual fields? Have they tested ALL her pituitary hormones or are they just going on the size of her ovary? Some other hormones can impact LH and FSH that is why I ask. A lot of us are sensitive to light - I love to sit in the dark.
I would contact NIH and get an opinion (will PM you how to reach a doc) and see if you can get in ASAP.
thanks so much for your feedback - it is greatly appreciated!
Not sure about the visual fields aspect but she's been telling me that her eyes do funny things sometimes where everything looks really far away and its been happening more and more frequently, which naturally has me concerned. We've taken her to the eye doctors and they say everything looks fine and her vision is actually perfect. They also said that having perfect vision at her age is out of the norm and that most young kids have a tad bit of nearsightedness; hence that she may have eye issues later in life. She was about 6 when we were told this but we do have her eyes checked annually - and same result - perfect vision.
She has had extensive hormone blood work drawn - once in Feb (by the pediatrician), then in March (by an endo doc) and again in July (by another endo doc). Her FSH and LH were out of range (high) and her ACTH was out of range (low). Being that this last blood work was done in July - and I quite concerned due to her rapid change in mood, visual eye disturbances, advanced puberty symptoms, her extreme fatigue and now a low grade temp for well over 2 weeks. I am suspicious about the size of her tumor at this point.
I thought that hormones could affect body temperature - but the last endo (from a renowned facility) said that her low grade temp and fatigue has nothing to do with her pituitary tumor. I don't have a PHD in endocrinology but common sense tells me that it does.
I did hear back from the folks at UVA yesterday and now I am waiting for the doctor to review her labs and MRI and circle back to me. I've been quite aggressive when it comes to being heard by the folks at UVA and will continue until I get some answers.
I will simultaneously check the NIH route - just to hear what they have to say and greatly appreciate you sharing the info. I will also check the magic foundation again. When I first found the web site - it appeared to be precocious puberty related and I couldn't find any info on our scenario but will check again and submit an inquiry to them.
I assume you are present when the labs are drawn? Was the ACTH in a chilled lavender tube, and was in put in the bin, or taken away to be spun immediately? It could be low due to lab handling (aka error) rather than really being low. If it was really low - than your daughter's docs are nuts to let your daughter walk around with a potentially life threatening disease and no information.
Many of us with pituitary issues have weak eye muscles - so I used to pass eye exams but I should not have. Vision may have been ok but at night I saw double as my eyes did not hold up.
Mood changes and all are standard sadly for pituitary too. There are some other informational sites in the health pages. Magic has a lot of information and other disorders cover PP- it may not be obvious at first blush. They are super nice.
I am always present when the lab are drawn and you could be right... could be a lab handling error. I didn't pay much attention to the tubes (although I will next time) because I am usually holding my daughters head and trying hard to distract her.
What you've been through sounds absolutely awful - I am so so sorry!!
OK - so the Pediatric Pituitary Neurosurgeon from UVA called me. He reviewed my daughter labs and MRI from the last endo doc I'm been working with. Based on what's he's read - he said that while the logistics of the endocrine system is not his specialty - but surgery is - he thought we should wait to get another MRI and use drugs to temporarily stop the hormones.
He said that in my daughters MRI report - the radiologist report says "There is a mild asymmetric enlargement of the left portions of the Sella. A focal region of hypoenhancemt is identified within the left portions of the pituitary gland measuring 4x4x3mm, suspicious for a mirco-adenoma."
So based on this - he's really not sure if it is a pituitary adenoma because the radiologist said it was "suspicious" for a micro adenoma. So now, I'm like - huh???!!
I respect and appreciate the UVA doctors opinion and am very grateful for his time; but now I'm thinking "what the hect?!". So now I'm thinking that I need to go back to the endocrinologist and ask them to elaborate. They told me specifically that my daughter has a pituitary adenoma that's secreting FSH and LH. Based on her labs, her ultra sound, and her poor little body showing advanced signs of puberty, and her inability to focus at times, let alone her extreme, almost bi-polar temperament (it can get really bad lately and then eventually it passes). I'm quite convinced that the diagnosis is correct.
So now, being the proactive parents we are - we are having her blood drawn again on Monday by her pediatrician, for hormones as well as a number of potential viruses that could be causing her low-grade temperature. It's been 2 weeks plus with the low-grade temp.
Any recommendations as to next steps? I am thinking - let do another MRI to confirm and go from there or do I subject my petite little girl to Lupron for a few months and wait to get her MRI in December??
I am scared to death about giving my daughter Lupron - or any other drug that can cause her hormones to excessively spike - which would make her every more temperamental (I know she can't help it and it breaks my heart to see her like this), cause her breasts to increase in size, and cause her to spot (bleed). I am loosing my mind here on what to do and she needs help.
Once you go one meds, testing will get skewed. So I would make sure that you have a really good endo on you side.
Was it a surgeon that reviewed the films - or a radiologist? If a surgeon - I would take more to heart, a radiologist, less. I cannot tell you stuff they have missed. Was your daughter's scan done at a pituitary center - was the MRI 1.5 T or 3T (it will be on the film or report) and did they do the scan in a dynamic fashion - that is did they give her an IV and put the contrast in while she was in the machine, or bring her out? The latter is a proper pituitary protocol as they can record the uptake of the contrast and find smaller lesions - even using a weaker magnet (1.5T) they can find tumors if the tech is good and the surgeon or radiologist can read the films well.
I had lupron myself as an older person - and it actually set off symptoms which makes me less prone to think that this is going to be helpful. I was also pushed on depo provera which was another huge mistake. I was also having period issues - being irregular to the point they kept thinking I was at risk for cancer etc so they were trying to force them so they were either super duper long (45 days) or never got them. I would have rathered they got the bottom of the pituitary issue and not subjected my body to the other hormones which just messed me up (and a few others had a similar experience). As for personality, it was awful - I know I was not a pleasant person to be with. But it was so hard to stop myself. I even tried several of the anti-depression and anti-anxiety meds (spiraling!) but the side effects again were too much.
Let me see if I can direct you to some information.
It was a surgeon at UVA that reviewed the films for my second opinion. It was a radiologist and pediatric endocrinologist at a renowned Medical center in Durham, NC that gave us the initial diagnosis. But they wanted to put her on 11.25 mg of monthly lupron in hopes of shrinking the tumor and stopping the hormones. I did a little research and couldn't find any other kids taking this much Lupron at a given time.
My common sense says to not mask an issue with meds - but remove it. So now - after talking with the Neurosurgeon at UVA - I'm at a cross roads.
I know I've bombarded you with a lot of data but because my daughter has had a low-grade temp for about 2 1/2 weeks now - I have another monkey wrench thrown into the equation.
I had a depo shot about 14 years ago - and never again. It took me nearly a year to get that 3 month shot out of my system. That stuff really messed me up so now I am petrified to put my daughter on any thing that messes with one's hormones.
Any ideas on the low grade temp?? We are at a loss... So, tomorrow we are taking her to get some extensive blood work done - but at a non endo facility. I wanted to take her to get her labs done again before doing any meds - but at an endo office - not some regular pediatric office. My husband wants to do both at the same time to avoid having to subject her to more needles - which I am all for - but just concerned about the quality of her lab results...????
I've been following your posts. I have not responded as I've been ill and on bedrest. But because I just can't stay away..., I am on the "do not subject your daughter to Lupron" and I agree that removing the secreting adenoma should be your focus. Thus finding the best pediatric pituitary neurosurgeon that you can will be a good use of your time.
Re low grade fever I've got some babblings..
My regular temp is a few degrees lower than the norm. I've been told that this is because of my thyroid gland.I am hypothryoid because of being panhypopituitary. So maybe there is some connection to the thyroid gland in this mess?
Or....If her white blood cells were off that might indicate an infection of some sort that she is fighting off? OR... If she has headaches then meningitis should be be ruled out.
Re the temp, I also remember something about the cycle that your temperature goes up on the day that you ovulate? So maybe her little bosy think that it is ovulating all of the time. I don't know the physiology of that.
And yes, secreters are usually not cancerous. and 4mm by3mm by4mm is not very large and should be easy to remove by a skilled surgeon. They should not need to shrink this? It depends more on where it rests and if it is hitting the optic nerves and or carotid arteries. Does her MRI report say where it is in relation to those structures?
PS Don't worry if it take me a week to get back to you, like I said I am not supposed to be on the computer right now.
I remember running temps from time to time for quite a while too - I wonder if it is the auto-immune component and the body is fighting something - but who knows what. Like Horsey, my body temp is lower than normal so if my body temp is normal, I am hot.
I hope that the facility that you take her too does FROZEN labs - that is the main issue and why my doc does not do labs on site. I can understand not wanting to subject her to multiple sessions with needles but some of the labs need special handling and most offices could not and would not handle the labs or cannot do them properly. So you are better off at a lab. Not that a lab does them right all the time - my lab just goofed mine up last time AGAIN. So frustrating.
thank you for your response and I am sorry to hear that you've been ill. I just can't imagine being so ill that I could not use my laptop. So, again, thank you very much. Don't sacrifice your health. Take care of yourself.
As I ask you to take care of yourself - I find myself reflecting on myself. I need to take my own advice. :)
I am so overwhelmed right now and find myself struggling to "maintain". My girls are tracked out (going on the 3rd week) and I struggle daily to do my full time job and try to manage my one daughter that is experiencing extreme mood swings. If it weren't for these extreme mood swings - things would be a lot more manageable.
When my daughter first wakes up - she is very emotional and it's evident to me that she needs to eat something. It's almost as if her blood sugars have dropped substantially and she becomes the inconsolable Tasmanian. I struggle with her to eat something other than sugary foods. I give her some OJ to help level out her blood sugar and most of the time that works. But usually after crying, screaming, slamming a door and running to any other part of the house.
Then, about 20 to 30 minutes later - she snaps out of it, becomes very emotional and apologetic about her just recent actions and continues on to be the very loving, considerate, sweet girl she really is... until it happens again later that morning or another part of that day.
I just don't know WHAT is going to happen when she starts back to school next Monday - she is in 3rd grade. How is she going to get through the day??
It almost seems as if she's hypoglycemic at times. But the strange thing is that her appetite is just horrible lately. She just doesn't eat much and hasn't for the past 3 weeks and it seems as though it's getting worse. She does drink water and a lot of it. She's more thirsty at times than hungry.
AHHH! Just let me, mentally, get through this day. thanks for listening...
Try keeping hard boiled eggs around - or plain non-fat yogurt. I eat the eggs for protein and it is pretty easy (I use the easy method to boil, bring to boil, then cover and turn off time for 12 min done!). I put my cereal in plain non fat yogurt that I strained a lot of the liquid off (using a coffee filter) to make it more greek like and add dried fruit, nuts or whatever and a touch of honey. Easy stuff to keep around I hope? I just get the tubs of stuff from the store that are mixed that I like. And my hubs eats it too.
I try to take salt before I go to sleep - my BP drops at night. She may need to eat some protein?
Do take care - being a caregiver bites... very under-rated thing to do and yet we need them. If you have the power, I would journal what she does and if anything in particular sets this off?
I have a chronic csf leak thing. When it flares I have to lie flat to keep the headaches at bay. Can't use a laptop when flat like that.
So did you get the lab tests done? The results might tell you a little more about what is happening.
If you can get your daughter to eat a snack before bedtime that might help with the morning thing. Something that has some protein, fat and carbs in it even nuts would be good because they break down slow. Maybe a granola bar? Some of those are like candy bars! There are even ice cream treats that are lower in sugar that a child would like too. Bowl of cereal? Sounds like it might be tricky as you say she does not eat much, as it is. But I guess if you can make it something that she does like that will help..
Any more news from the NIH?
ok thinking positive. give yourself a hug -caregiver.
I am sending you virtual hug from Hawaii
Meg at NIH has received my package (labs, MRI CD, etc) and now I am waiting for her to circle back to me. If I haven't heard back by Tuesday of next week - I'll certainly follow-up. It just seems that one has to be aggressive when it comes to this stuff or else you'll fall through the cracks...
My daughter had a visual fields test yesterday and everything is fine there and was told her optic nerves looked good.
My daughter had 6 tubes of blood drawn 2 weeks ago to test for multiple things regarding her consistent low-grade temp. The basic blood panel (liver, kidney, Billi-ruben, etc.) was fine BUT they messed up the doctors orders to test for EBV and all of her hormones. The lab lost the order - can you believe that!! What are the chances of THAT happening!!! Very frustrating. Also, as a result of the blood work and where they put the needle to get blood - poor thing developed some blood clotting under her skin and the area of her boney little arm has been quite painful for her.
That's the latest. :-(
She is still very tired, extremely moody, no appetite, and is still running a temp ranging from 99.5 to 100.7. My heart just feels so heavy...
Oh boy... put some ice packs on the hematoma - I have had that happen (had it happen as a kid too - had a huge one!) and talk to the doc about it as well.
If they have the blood but no orders, the doc can send in the orders!
But yeah, they can mess up stuff all the time. I have a hard time even when I hand them the tests - I get mine back saying my tests were *handwritten* (they were not) and so could not be performed! They just come up with any excuse!
I hope they re-do the orders but man, what an ordeal. Some techs are so good and others ugh - and they rotate them so it is so hard to stay with a good one.
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