MRI Results in already!

Discussion in 'General Parenting' started by susiestar, Oct 16, 2009.

  1. susiestar

    susiestar Roll With It

    I got a call a half hour ago (9:30 am) that Jessie's MRI results are already in. The pediatrician. Dr. W, called me to say that the pediatrician neuro had already read the MRI.

    There is "nothing wrong" with her brain. They conclude it is anxiety.

    Dr. W was very adamant that it is NOT "all in her head" or something she made up. It is real.

    Then she said that there is an abnormality in the pituitary gland. The neuro didn't think it was a big deal but he and Dr. W want her to see a pediatric endocrinologist right away.

    They said we COULD call the university pediatrician endocrinologist clinic but it would take "months and months and then we would see a rotation of students and interns and it just would take longer than they wanted it to.

    I was told specifically what to say to get the pediatrician endocrin to get in ASAP.

    I have several questions here. First I DID call to verify the MRI had been read. Since the Dr tried to tell me the results before the MRI was done I wanted to make sure we were not being given the wrong info. It was read this morning.

    Usually they send a letter if things are normal. So why the rush and the coaching to get us into the pediatrician neuro? Why didn't the doctor make the appointment the way they usually do?

    Makes me go hmmmmm.

    If this IS anxiety based, how do we treat it?

    From looking into the keppra she takes for epilepsy I see a lot of patients with anxiety problems that they think are keppra based.

    Could the keppra be contributing? Or the switch to generic keppra be part of the problem?

    Neuro thought keppra was a strange and illogical choice for treating her epilepsy. He said he would want to change it after blood work andthe MRI if all was okay with them.

    I called and left a message for neuro asking him to let us know how to switch and what medication to choose for the epilepsy.

    He is out until Monday so we will see what he says.

    The endocrin doctor is out until Monday so I will schedule that then.


    The story continues.

    Meanwhile, the lorazepam helps a little bit.
  2. klmno

    klmno Active Member

    Well, at least this is not horrible news. It sounds like the test on the gland could be a major key in answering your other questions. As someone who has intermittent tremors and have for years, as do/did others in my family, I would be very interested in that test.
  3. rejectedmom

    rejectedmom New Member

    Well It sounds like they might be ont something. When was the last time her pitutary hormones were checked? -RM
  4. klmno

    klmno Active Member

    PS How do they check those glands?
  5. Star*

    Star* call 911

    Well then......say the magic words......get in......get it checked and go from there. UGH...In any event you have 1 down 1 to go huh?

    Wonder......could she take Topamax for the seizures and have it work for her headaches?
  6. Hound dog

    Hound dog Nana's are Beautiful

    A problem with the pituitary gland can/does cause all sorts of wouldn't believe. For such a little gland it has a huge role to play.

    I think they're on to something. I think they know they may be on to something. And with the pituitary......well, you just don't play around. You have to know asap/stat. Hence the coaching to get you in quicker ect.

    Fingers crossed they've finally found the right path!!!

  7. tiredmommy

    tiredmommy Site Moderator

    Susie- I hope they are able to figure out what's been going on with easy child. I know this isn't about your difficult child but I'm going to move it to General anyway because I think it may be helpful to some of the members that frequent that forum. :winks: Please look for responses there.
  8. gcvmom

    gcvmom Here we go again!

    Well, just because her brain looks normal structurally doesn't mean there isn't a neurochemical component to this -- and the fact that the pituitary does look "off" for whatever reason is definitely worth pursuing.

    I hope you can get in with the pediatrician endo ASAP.
  9. susiestar

    susiestar Roll With It

    Star - Topomax was the first medication she tried for the seizures. It gave her horrible headaches and made her break out in a nasty rash.

    Topomax and Keppra are NOT proven to be effective on Absence seizures. There is one study about one or the other of them but it was not conclusive. This is NOT my research, it is what the new neuro said. He does seem to know his research though. (He knew which one the study had been done on, I am the one who forgot.)

    It was SO HARD to get her to the right dose of Keppra that I would really like to try a different medication. We spent a YEAR getting her up to a therapeutic level. The old neuro made me think there were not any other options for this type of seizure. His nurse flat out told me that if Keppra didn't work then nothing would work so we had to stick with it no matter what.

    I really think that the pharmacy reps have their hooks in the old neuro or at least his staff. There were always 3 or 4 of them in the office at every visit and usually one was setting up lunch or trying to take lunch orders.

    Anyway, I am in a holding pattern with the docs until Monday.
  10. smallworld

    smallworld Moderator

    Susie, since the pituitary gland is seen on a brain MRI and there was an abnormality, that's why you got a call today following the neuro's reading of it. It's a little disingenuous to say her MRI was "normal."

    I'm having a hard time understanding why a questionably "normal" brain MRI points to anxiety as the culprit for Jessie's muscle shakes. Was this the absolute last test to rule out any other physical cause?

    As far was you know, what are the most effective anticonvulsants to treat absence seizures?

    FWIW, our neuro is adament about sticking with brand anticonvulsants, even if (in our case) they're being used off-label as mood stabilizers. He has seen far too many patients experience break-through seizures when they switch from brand to generic.

    I hope you get into an endocrinologist ASAP.
    Last edited: Oct 16, 2009
  11. Josie

    Josie Active Member

    Maybe they are onto something with the pituitary gland.

    I don't believe it is anxiety. I think the docs just say that when they can't find the reason. My daughter's tummy aches were thought to be anxiety but went away when she gave up gluten and milk. My shortness of breath was said to be anxiety but went away when I got on antibiotics.
  12. rlsnights

    rlsnights New Member

  13. susiestar

    susiestar Roll With It

    Thank you all.

    I, too, thought it was not quite honest to say the MRI was normal but showed a pituitary abnormality. Esp since the pituitary is so small and so powerful.

    This was NOT the last test to get to a cause. Our pediatrician has wanted Jess to be diagnosis'd with anxiety for years. When she saw Jessie after being thrown from a horse in 5th grade she tried to say the pain in her tailbone was anxiety and not from landing on it.

    There used to be only one pediatric practice in town because this one either hired the other docs in or ran them out of town by refusing to answer calls for any of their patients at any time, though the other docs covered theirs. We now have a practice that has enough docs to cover for each other and we will be switching soon.

    The neuro did 7 sets of blood tests, an exam and the MRI. That is ALL the testing that has been done. This was NOT the last test to rule out physical problems. Neuro even spoke about it being caused by any of a wide variety of things from many specialties. HE mentioned fibromyalgia as a cause - which runs in families and my mom and I both have and we think my mom's dad had. He said if it is autoimmune then it could take years of testing and persistence to find a cause. HIS WORDS.

    then the very next I hear from him he is gruff and acts like I am a bother and a nuisance. Not going to work.

    The medications that are usually used for Absence seizures are lamictal, zarontin and depakene. If they insist on brand names we won't be able to afford them. The switch can be a problem but we don't really have a financial choice. Luckily these are in generic so we can start with them.

    The endocrin doctor was not in today - the office is closed on Fridays, so we will see what he says on Monday.

    Your support and ideas and interest is invaluable to Jessie and I. Thank you all so much!
  14. susiestar

    susiestar Roll With It

    Well, tonight was not fun. Jess tried to hide it from her dad because he worked at a pep rally at the university and it was loud and not real fun. He works all day tomorrow at the football game and she wanted him to rest up.

    He walked past her and touched her arm. Just a gentle pat.

    The muscles all just became hard as a rock. She held it together and came in to me.

    Everywhere on her arms, back, legs that anyone touched her became hard, like iron bars under her skin. What was really creepy was feeling them suddenly go SO tight and hard at a feather light touch of her skin.

    She was due to take another dose of her muscle relaxer so I gave her that. I couldn't even HUG her. Through all the illness, all the everything, I could always at least give her a hug.

    I did give her an "air hug" where my arms went around her but didn't touch her. All she was wearing was a very light tshirt (big) and it didn't seem to cause too many problems.

    It passed in about an hour, but the terror it left is still here.

    She was trying to watch the new episode of psychiatric with husband = when he works late at a game or event they watch psychiatric at midnight when it is replayed.

    She had to come snuggle with me because she couldn't quit crying. I just held her and let her cry, told her it was normal and natural to cry with all the pain, confusion, dr hassles, etc...

    I don't know hwo much she can handle before she ends up having a breakdown. Sadly the docs will want to jump and label it all anxiety and ignore the MRI and pituitary problems.

    I AM going to start her on bananas and some other multivitamins. I wonder if some of this is related to the anesthesia. They tld us it would have her very dehydrated. We worked to get her to drink fluids but maybe she needed more. That jsut occurred to me. Please pray I am right!
  15. Wiped Out

    Wiped Out Well-Known Member Staff Member

    I'm glad the results came back quickly. I think seeing and endo is a great idea. I'm sorry she was in so much pain tonight; how scary for her and for you. I'll keep the prayers going, she is so young to be in so much pain. Air hug for Jesse and gentle hugs to you.
  16. smallworld

    smallworld Moderator

    Susie, I think you're right that the difficulty comes with switching from brand to generic anticonvulsants. I think a similar difficulty can come if you switch from one generic to another if your pharmacy doesn't get the same generic in every month. So that's something to watch from (or ask your pharmacy about) when you start with one particulary generic.

    I know nothing about Zarontin because it is not typically used as a mood stabilizer. If you are worried about Jessie's mood while treating her seizures, I will share my impressions about Lamictal and Depakote (Depakene). Depakote works better from above (mania) than below (depression) so it tends to push the mood down over time. Lamictal, as you may know, is a great medication for bipolar depression, and we've been told by our psychiatrists that it helps with anxiety as well. So since Jessie is struggling with anxiety and possible sadness about her condition, you might want to go with Lamictal if you can.

    I'm sorry she continues to struggle. I hope you can get into the endo soon.
  17. susiestar

    susiestar Roll With It

    Thanks! From what I can see zarontin is not rx'd a lot outside of a few types of epilepsy. I think lamictal is a great choice to try for Jess and will be talking to the doctor about it.

    The muscle stuff was scary, but I really think the anesthesia messed with her system and was a big factor. She refused to listen when we told her no more cola/caffeine and the anesth. dries you out a LOT. We had a tough time the day of the MRI getting her to drink much at all, and the next day she also wanted little to drink. I think electrolytes got out of whack and we need to be more careful about that. Once she got some fluids in the muscles felt a lot better.
  18. ML

    ML Guest

    I just want to add my support here. I hope the pediatrician endo comes up with some helpful ideas. Love to Jess, ML
  19. Steely

    Steely Active Member

    I just want to add my support and prayers.

    I know this is a question that the Docs have probably addressed, but has she had her potassium checked? As I mentioned I had severe muscle problems, that everyone wanted to blame on anxiety - but it was due to an undetected Potassium deficiency.

    I am with SW about non-generic medications. I had Matt's psychiatrist write a letter to the ins co stating that non-generic medications could have an adverse reaction so that they would pay for them.

    As for the pituitary issue - I am glad no one is waiting around. This could be the answer you are looking for.

    doctors are so condescending. They think if they tell us "nothing is wrong & everything is normal" that we will accept that and be calm. However, as warrior moms, we know better. Keep fighting. You will get to the bottom of this.
  20. Mattsmom277

    Mattsmom277 Active Member

    I hope you get in to the right doctor without that long delay. I'm sure you are frustrated and ready already for an answer!
    Have you ever googled familial essential tremors? It could be worth looking into. Also, it can be made worse by having anxiety. The tremors begin, anxiety kicks in, tremors increase, etc etc.