Brain scan revealed possible tumor

Discussion in 'General Parenting' started by butterflydreams, Apr 4, 2008.

  1. I am feeling so overwhelmed right now. My difficult child had a brain SPECT done on Monday. On Tuesday the doctor ordered a Daytrana patch for him as well as ordered a CT Scan with-Contrast for next Thursday.

    When I went to go visit him last night I had a chance to talk to one of the nurses about him and ask about what is happening. She went and got his chart for me. Preliminary review of the SPECT shows patterns indicative of Bi-Polar, which behavioral wise is what we were looking at anyway. But further review of the Scan showed a profusion of blood to the left temporal lobe. There is what appears to be a mass there in amongst this profusion of blood. The nurse said it could be either a cyst or quite possibly a tumor - we won't know for sure until the CT Scan next week.

    difficult child knows about the Bi-polar but doesn't know the other. He of course doesn't understand why he is still inpatient - he doesn't get that he needs the help. He is scared about going to longterm - which is the plan.

    Of course, whatever this mass is will take a priority over anything else. But the psychiatrist with work in conjunction with a neurologist with it all.

    My mom and stepdad were already coming in next week to spend 10 days with us and I am so glad! They will get here Wednesday afternoon and his scan is on Thursday morning. I am so glad that my mom will be here. I do have my dad and my stepmom that live here in town, but I could really use a hug from my mom right now.

    I just don't know what to expect. It was so hard to not show anything different when I got home last night to my daughter. I don't want her to know and worry any sooner than she needs to know, but it was real difficult to come in and hold it together.

    Now we wait. The nurse said the psychiatrist should have the results on Friday.

  2. Shari

    Shari IsItFridayYet?

    Oh, hugs.

    Waiting is the hardest part. Try to focus on the here and now.

    Many hugs.
  3. AmyH

    AmyH New Member

    Sending up prayers for you and your son! Hang in there I know it is hard!
  4. Jena

    Jena New Member


    i am so sorry this must be so hard for you. I am glad that your family is coming. try if you can at all to take deep breaths and hope for the best.

    my thoughts will be with you. pls. let us know the results.

    hugs to you

  5. Nancy

    Nancy Well-Known Member Staff Member

    The waiting is so difficult. Hopefully it turns out to be a cyst or something similar. Keeping my fingers crossed and sending hopeful thoughts.

  6. change

    change New Member

    hugs & prayers...

    I'm sorry. I'm so glad your mom is on her way. I know just how you feel about that need and I am so grateful for my mother too.

    Try to do get at least an hour alone for JUST yourself and relieve some will help.
  7. dreamer

    dreamer New Member

    I am very glad you have supportive family. That is GREAT!
    I am confused, did you just find out about the mass from the nurse when she got the chart for you ? why didn't the doctor call, and discuss it with you when he knew? I am not positive, but I am wondering if this "mass" could be causeing ALL the symptoms? as in instead of bipolar? I am also confused. I am not sure daytrana is a good match for bipolar, and why start the daytrana if there is a mass to investigate?
    Is your son inpatient only becuz of the testing, or is he in for psychiatric behaviors? Can't they do these tests outpatient? (you may have said and I may have missed it, I am still trynig to catch up on things after being out of town)

    How are you going to explain to your daughter about your folks coming in? She is going to pick up on unspoken fears etc? (and that could increase her fears and anxiety??, I am not sure, I am just asking)

    I do wish more docs would order more things like spect scans and CTs for the difficult children.
  8. gcvmom

    gcvmom Here we go again!

    Hope it's not a tumor... it could also be a cavernoma, which is an abnormal cluster of capillaries that can leak blood slowly or hemorrhage abruptly (although an MRI and not a CT is the ideal diagnostic tool). My husband had one in his rt. temporal lobe removed in February and is doing very well now.

    Let me know if you need more info and I can give you links to some very good sites.

    Sending hugs and prayers of support your way -- it's good they're running more tests to figure out exactly what the mass is.
  9. smallworld

    smallworld Moderator

    Christy, I'm glad you will have your mom with you to support you in this challenging time. We are also with you in spirit. Sending many positive thoughts and gentle hugs your way.

    I agree with Dreamer about Daytrana -- stimulants can make bipolar behaviors (and hallucinations) worse. Can the psychiatrist wait until you know for sure what's going on?
  10. tryinghard

    tryinghard New Member

    I will keep you and your difficult child in my thoughts. Sending you hugs. Please keep us updated...we care
  11. Thank you everyone. Let me try to answer some questions. First of all, the Daytrana was ordered because of signs of ADHD before the final review of the test. I don't know if it will be continued or not.

    I had been waiting to hear from the doctor. Before I spoke with the nurse last night, all I had known was the CT Scan had been ordered, I didn't know why, I suspected though that he had seen something that required looking at the brain structure. I believe that the doctor hadn't said anything because he didn't want to worry me. The nurse was going to leave a note for him to let him know that she did tell me.

    We won't know what is causing the mass until we do the scan, but the doctor is suspecting possibly either a cyst or a tumor.

    A tumor in that area could be causing the extreme behaviors as well as the hallucinations he has been having that are getting worse. Bi-polar (and ADHD) does run in my family. Looking back on behaviors from when difficult child was younger that diagnosis doesn't surprise me.

    As far as my mom coming to town, this was already planned for months. My mom and step-dad come every year for like 10 days in the spring. This trip was planned so that they would be here for my daughters 16th b-day on the 13th. So I won't have to explain to her why her grandparents are here. The biggest thing is me maintaining my composure around her. I have a tough time keeping things from her, she always knows when something is bothering me. Last night I put it on that the visit didn't go well, which it didn't because difficult child went from being very scared because he is "seeing" different figures now and he said they are as real looking as you or I and he is also claiming that they have scratched him. Anyway, he went from being scared to crying the majority of the time I was with him. So last night when I got home from the psychiatric hospital, I just told my daughter that it was a hard visit.

    gcvmom - go ahead and please send me links for this. I asked about hemorrhaging, the nurse said the doctors notes do not indicate anything about it, just increased blood flow to the area.

    I really appreciate everyones good thoughts and I will be sure to keep everyone posted.

  12. tammyjh

    tammyjh New Member

    Sending many many (((((hugs))))) and prayers to you and your son. The waiting is hard. I"m glad your family is coming in and that they will be there for you. Hang in there.
  13. gcvmom

    gcvmom Here we go again!

    Sent you a PM.
  14. Marguerite

    Marguerite Active Member

    Increased blood flow to the area indicate that something is drawing on supply. However, even if it's a tumour, that doesn't mean it's malignant. It could simply be a benign growth of cells, possibly capillaries, which can be dealt with easily. And if it's something that has been causing the changes in him, dealing with it could produce an improvement in difficult child.

    Hugs, fingers crossed and I'm glad your mother is going to be there.

  15. Thank you. I am thankful that the psychiatrist had ordered the brain SPECT because otherwise this might have gone unchecked, because there isn't any symptoms to indicate even the idea of a tumor (like seizures). I will keep everyone posted.

  16. amazeofgrace

    amazeofgrace New Member

    sending prayers and hugs support your way
  17. dreamer

    dreamer New Member

    um, ok, so this has been on my mind thru my dinner.....
    I made a comment something about how I wished all the difficult children could get CTs and or spect scaans, whatever? you said something about no obvious signs of brain tumor?

    OK what I had on my mind was---brain tumors can have such a wide variety of symptoms, ranging from vague to neon signs. "ADD, ADHD, bipolar" could all possibly be "signs"
    My mother, my best friend, my husband- my girls girl scout leader- my friend in HS--all had brain tumors. ALL manifested in entirely different ways, many were very subtle. Some affected behavior changes, some affected activity level, some affected cognitive functioning.....they all manifested SO differently.
    Seizures, too, can manifest in so many many different ways. Someone here has vast knowledge of seizures. (not me) I am hoping they post, cuz I try but I cannot keep the info straight. My son has seizures, his are NOT obvious and even many docs can not tell he is seizing. My son cannot tell....I cannot tell, but they tell me he IS seizing, sometimes several HUNDRED times a day. He does NOT shake, fall, trmeble......he does not stare or stutter......sometimes he sleepwalks, or sleep talks, or sleep plays or sleep bathes. Sometimes he misss bits and peices of information that noone realizes he has missed until he tries to recall what has been said or gone on while he was seizing. His goofy little brain just sometimes goes and does its own thing while he is going on doing whatever it is he is doing.
    The reason I said I wished more docs would do more scans etc on difficult children is becuz I have personally seen SO MANY MANY times there HAS been something not right in a persons brain, but before a scan was done, EVERYONE assumed it was something else.
    My siblings swore my mom was being a spoiled brat diva but turns out she had a brain tumor causeing her to behave how she was. I thought my husband was simply being an abusive horrid abnoxious lazy jerk.....we thought my friend had gone psychotic. In my son for years I was told my son was not doing things becuz I was a crummy parent, it took till he was 8 years old with me begging someone to investigate further to see WHY even when behavior mod docs worked in our home 5 days a week, he was not reaching his milestones, and that could NOT be ONLY that I was a crummy parent, they FINALLY did an MRI and found incredible brain structure abnormalities. All the parenting classes in the world were NOT gonna improve my sons life by themself.
    The signs and symptoms of ADD, ADHD, bipolar? SO many many many other biological phsyical non mentally ill things CAN create such symptoms----from kidney problems, to diabetes to brain lesions or cysts or tumors, seizures, heavy metal posioning, metabolic disorders, endocrine disorders, thyroid problems. food sensitivities. I am a big fan of investigating the body to seek causes for behavoirs. and doing so BEFORE calling a child ADD, ADHD, bipolar, ODD etc. Sleep apnea is another issue I feel docs do not rule out often enough.

    My thoughts and prayers are with you, and your son, and your family. I am hoping that finding this and finding it now rather than later is a good thing.....becuz now the docs can hopefully come up with an appropriate plan. I am sorry it is something so scary, but am glad they did find it. (does that make sense?)
  18. Thank you so much Dreamer!! Yes what you have said makes TOTAL sense. I am learning so much regarding difficult child's and everything else. A lot just from this everyone here. You are so right in that behaviors and such can be caused from things wrong with the brain like tumors and other abnormalities. I so know what you are talking about being told its your parenting skills. I was getting that all the time from my own parents. Just on Monday when I took difficult child for his SPECT my dad apologized to my son for being hard on him because he now knows that he couldn't control his behavior - he wasn't just being a naughty child. But I always got the "you are not hard enough on him" "you let him get away with too much" nobody ever seemed to understand that no matter what I did, it didn't make a difference.

    I am so thankful that my sons psychiatrist does the brain SPECT on his patients. From what I understand, he has been doing them for several years. He went to special training so he can read them. He is from what the nurses told me, the only one in our area who does. They told me that he generally requests the test if medication that he feels is it's appropriate. Like when medication doesn't seem to be working that should be.

    Someone at work today told me that God is looking out for difficult child, because if the test hadn't been approved (which we weren't sure it would be) who knows when we would have found the mass.

    As far as seizures and stuff. I had no idea. I didn't realize that there were seizures where you didn't see the flailing around and such. I have never known anyone who had any kind of brain tumor. All I know is I NEVER even considered that difficult child's behavior could be related to anything like that.

    I am glad that at least now we can get to the bottom of all of this. I know we have a road ahead of us and it is incredibly scary, but I have faith and I know that difficult child is in good hands. If there is a tumor, I know that there is a great children's hospital in the same hospital where the CT Scan is being performed.

    I will keep everyone posted.

  19. Steely

    Steely Active Member

    You know, with all of this new technology, I think we will be finding more and more that our kiddos have brain abnormalities. I am gonna bet that the "mass" they see, is a benign brain birth defect. At least I am hoping so.

    If you do not mind, could you tell me exactly what a SPECT of the brain is? I only know about PET and MRIs.

    Sending much strength your way.
  20. BestICan

    BestICan This community rocks.

    Just want to give a little bit of hope to you. My sister had some one-sided weakness and tingling in her face, and they found a brain stem lesion. We all of course assumed the worst when we heard - it was the absolute WORST day of my life.

    That was about 15 years ago and my sister is alive, perfectly fine, doing great. The darn thing resolved on its own over the course of 6 months. Just slowly disappeared. Nobody was able to explain what it was, what caused it, etc. And her symptoms disappeared too.

    I wish you lots of courage and peace while you wait to find out what's going on. Hoping difficult child has the same happy outcome that my sister had.