Tumor growth in young children

My husband has VHL and has had 4 Brain operations to remove them. We are awaiting test results on our two children. Because of it DNA testing it takes way longer then your standard blood test, so were looking at not knowing for a few months still.My question is this, My oldest son who is 10 has been having headaches here and there, not all the time, but he does get them. When he gets these headaches its almost like watching his dad again. That is how he was until we found the tumors, and then went down the long road of finding out what he had. i would say on average my son gets a headache a month. Is it normal for a child to be getting massive headaches. He is also very high strung and emotional, always crying and freakin out. kind of like panic attacks. Part of me wonders if its just from everything going on. Not only has my husband had 4 brain surgerys but now my brother in law has to have spinal surgery.
Am i just being paroinid about my son and making his symptoms something, when they are nothing.
My doctor does not want to give him a mri right now because we havent got the test results back yet. But I did tell him that if he is postiive for VHL that I want an mri done right away.
Has anyone seen or heard of tumors growing in small children around the age of 10?
Thank you kindly

By docswife
Posted October 22, 2009 at 9:39 am
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I can not believe that doctor does not want to give your son an MRI until test resuts come in. I have had four children unfortunatly my oldest died at 13 from a bike accident so we will never know about him. My oldest daughter have had MRIs already because of sympyoms of excessive headaches and also CT for her stomach problems even before she had her DNA test and of course she is fine except for her panceas she does have VHL. My youngest daughter has also had MRIs but has not been tested yet but will soon so far she has been fine except for an accident she had at 3 where she was run over and ended up having seizures a cracked skull and a bruised brain. My youngest has been fine so far.I would insist it does not mean he has brain tumors but better safe than sorry. I hope all goes well for your son you have to be his advocate and demand it my pediatricians have read about it and follow the protocol given.

By BriannaB
Posted October 22, 2009 at 10:24 am
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Thank you so very much for your reply. We are heading to see my husbands neurolgist on the 29th. I am going to tell him about my son's symptoms and maybe he can override my family doctor. We live in Canada and in the smaller city we live in not to many doctors are familliar with this disease. But the doctors at the univeristiy in edmonton have a much better understanding. Im hoping we have better luck there.

By docswife
Posted October 22, 2009 at 12:41 pm
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I know it is hard in Canada I have heard of many Canadians coming to the states for treatment because of the heath care issues. Maybe you can look into NIH and see what they can do for you. I have been going ther for tests and surgeries for many years also they will give you a list of tests you need to do for this disease. MRI are not the only test Ct scans for kidneys. Good luck.

By kimbre
Posted October 22, 2009 at 5:29 pm
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hi there,
my husband is from edmonton! we are here in washington state and we have 3 children. we have had them all tested, but my sister, who also has VHL like me, did not have her kids tested. so, she follows the standard screenings for children. her doctor understands that and keeps up with it. so many VHL related tumors don't even have symptoms so it is smart to do the screenings yearly. we do eye screenings yearly, and have had abdominal ultrasounds done as well. when they reach age 8 or 9, i plan to have more screenings done- brain/spine MRI's and CT scans of their chest, abdomen and pelvis. i would not have known i even had VHL if they hadn't accidentally seen my kidney tumors on an ultrasound for a pregnancy! i had a good sized tumor (cancerous) that i had no symptoms for! definately push for tests. i am glad you are checking in Edmonton. i hope it goes well!

By MaryP
Posted October 23, 2009 at 10:34 am
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In answer to your original question, retinal angiomas were detected when my daughter was 13. A follow-up MRI also showed a brain tumor, which was removed at that time. With regard to your son's symptoms, it has been our experience with these tumors that they are slow growing. We did not realize my daughter was having symptoms until she had her tumor out and "felt so much better." Her symptoms caused her to be more sedate and tired. Obviously, you won't know for sure about your son's symptoms until he has an MRI. I am hoping that when you look at that lab sheet with your son's DNA test, there is a big NEGATIVE next to VHL. At that time, know I am celebrating with you.

By BriannaB
Posted October 23, 2009 at 11:27 am
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Thank you so much for your support everyone. i know with this disease so many people suffer. Right now im going through what I call my "tough time" Both of my kids are still waiting on results, sadly my neices got their results yesterday, and my oldest neice is positve for VHL. We are hanging in there and just trying to stay postive and proactive. We are however grateful that my other neice and nephew do not have the VHL gene. We have realized we need to celebrate the victories when we get them. Things are about to get very tough in our family here soon (as i know they do with all vhl families) My brother in law needs spinal surgery and we are going to talk to the neurosurgeon about the tumor in my husbands brain, hopefully it hasnot grown and he will not need surgery any time soon. I will keep posting progress reports, I have a better sense of peace having this site to come to. Knowing that my family and I are not the only ones going through this storm.

By joyceg98
Posted October 23, 2009 at 2:20 pm
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Brain tumors are not the only possible cause of an intense headache, especially if the headaches are periodic and not constant. It could be anything from hormones on up. I would hope the doctor is doing some probing and testing, not just waiting for the DNA results.

Has your son been checked for a pheo? At his age, pheos are more likely than brain tumors, thiough both are certainly possible. Meanwhile, it's a much less expensive test, so you could go forward now with a pheo test.

When there are symptoms present, the symptoms should rule. No one should wait for DNA results before pursuing symptoms! The DNA test raises (or lowers) the odds of a brain tumor, but that's just interesting information. Meanwhile there are tests they can do, for example, to determine whether the intra-cranial pressure is high (which would be true if there is a brain tumor).

Having a first-degree relative with VHL makes him 50% likely to have VHL, which is 50 times as high as anyone other patient. That alone, in combination with the symptoms, should be sufficient reason to do an MRI.

Also, if he tests negative for VHL he still has the same level of risk as anyone else in the general population of having a brain tumor. So unless the doctor finds some other reason to discount the possibility, that possibility still exists, whether or not the DNA test is positive.

Best wishes,
Joyce

By BriannaB
Posted October 23, 2009 at 3:20 pm
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Thank you Joyce, you are very knowledgeable and its great to have someone like you on here. I am going to push for an MRI and look into the pheo test as well. Luckly we live in Canada so testing costs are not an issue. We will be seeing my husbands Neurosurgeon on Thursday and I will be asking him to have my son scanned.

Welcome to Inspire!

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