The Early Christmas Gift.

I learned on Friday that my son’s  brain MRI has NO tumors!  I prayed.  I begged.  I bartered.  I worried and I fretted about the procedure and the impending results.  Then, on Friday, I got to read the words, “No intracranial masses”.  I can only compare it to feeling like I could finally breathe!  And, yes.  I cried some very happy tears.

The whole thing, as you probably know, arose from the abnormal EEG that my son had back in late September.  It was then that we learned he was having silent seizures in Stage 2 of his sleep.  Whenever there is an abnormal EEG, it is standard procedure to do a brain MRI to rule out any physical thing that might be going on to cause the abnormal EEG.

Our neurologist let me know that, nearly always, the MRI comes back normal.  But, I’m a mom.  I worry.  And with all the times my son has told me his eyes hurt, I worried more.  [His eyesight has been tested and is actually quite good.]

 The results did show an asymmetry of the hippocampus.  Now, I knew that word “hippocampus” vaguely, back in the day, when I had to study these things in school, but I definitely needed a refresher course on what it is and what it does.  The hippocampus apparently, plays important roles in the consolidation of information from short-term memory to long term memory and in spatial navigation – (navigation meaning preventing us from getting lost).  We all have two hippocampi, one in each side of the brain.  The word originates from something Greek that translates to seahorse, because it is said that the hippocampus is shaped like a seahorse.

I learned that the hippocampus is one of the first regions in Alzheimer’s disease, to suffer damage. I only found this of interest because one of the drugs that is being used to treat my son’s language (and for which he has shown improvement) is a drug which is primarily prescribed for Alzheimer’s patients… it is Namenda.  Damage to the hippocampus can also result from oxygen starvation, encephalitis or from mid-temporal lobe seizures.   His EEG showed mid-temporal lobe sleep-activated seizures.

For my son, his “left hippocampal formation is more rounded in configuration with slightly indistinct gray-white differentiation”, according to the report.  I was told this just means that one side is more round and more “blobby” than the other.

The EEG said the sleep-activated seizures might be indicative of some “focal or structural or irritative pathology for the left temporal region” which meant that the brain MRI might have shown some physical reason why the seizures were happening.  The brain MRI says to correlate it with the EEG.  Seems to be finger pointing to me..

When I went to the appointment for follow up, our neurologist was in surgery so we met with his nurse-practitioner.  She told me that this correlation is useful if he is having physical seizures because it becomes the area of focus in the event surgical intervention is considered.  Obviously, we are not having “physical seizures” in the sense she is speaking of and I would not consider brain surgery for him.  Still, as far as correlation, it is interesting.

She brought in another doctor who told me the changes to my son’s brain on the MRI are so subtle, that most physicians reading the results would probably have not noted any abnormality at all.  Which doesn’t really tell me anything.  I think it was meant to lessen my worry.

I still have questions.  The biggest question I have is where do we go from here?  Does the MRI tell him anything that will change our course of treatment?  Apparently not, at this point.  Right now we are still on the same meds and monitoring this still really new course of treatment.  The other question I have is which came first, the seizures or the differences in the hippocampi?  Do they have any way to know?

My son has been given meds for the seizures and for the language.  There has been some clear break-throughs in language.  He is using new words, probably a few times a week and giving me longer, more complex sentences with more sophisticated concepts.  He has also had a spike in yelling and off and on melty-behavior.  One of the meds can cause irritability.  I lowered that dose by half a milliliter on my own over the weekend and it seemed to correlate with a decrease in the screaming and melty behavior…

I don’t know what the future holds.  I do know what the past held.  What I see now is good. I’m not looking it in the mouth – I’m just grateful the only Christmas gift I wanted – I got.  And it came early.

Thank you all so much for your support on Facebook and Twitter!  It has meant the world to me!

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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16 Responses to The Early Christmas Gift.

  1. Kelly Hafer says:

    Hey Karen – again, thank God that there were no masses. Ted, too, has asymmetric hypocampi. He also has more myelination than is typically expected in a kid his age. To paraphrase badly, our neuro said that the brain is like a tree with branches and growth. It trims itself and doesn’t develop too, too much because to do so would make things confusing for the neurons to find which dendrite and axiis to get the message across. Kids with autism have brains that don’t prune themselves. They have too much of the branches and foliage and so thoughts get lost, go to the wrong tree, blah blah blah. It made sense when he said it.

    Other than that, though, this neuro for us sucked. Won’t do an ambulatory EEG on Ted. Says I need to chart and time his “bad spells” to within 90% accuracy first, and THEN he’ll admit Ted for 5 to 7 days (DAYS!!) to monitor him with an EEG. Time to go doctor hunting again! 🙂

    I am so happy for you and for your family. I hope the meds you have now provide amazing new progress and insight into Tootles. ((hugs))

    • solodialogue says:

      I’ve heard that about the pruning of the branches before.

      I’m so, so sorry that he will not give you the ambulatory EEG! I do not understand that at all. I’m with you on doctor shopping but it’s a shame that it has to be done.

      Thank you too for all your amazing support and advice through the whole thing. Your warning about the quick way anesthesia takes hold saved me from heart failure! I hold you close to my heart. xoxo

  2. Flannery says:

    All in all, I would say that is good news! No other issues found, and a medication that is helping him to make progress. That really is a great Xmas gift.

    It’s a catch-22 with the medication and mood. We have that problem with the meds my son takes as well, and it’s definitely a challenge. But when the benefit outweighs it, you just have to deal with it, I guess.

    So glad that ugly testing is over.

  3. Wow. Join the hippocampus club! Actually, I have no idea if there is a club… but we should seriously start one.

    We just received our letter with full work-up from last week’s neurology appointment in the mail today. Here’s what it said: “the head and body of each hippocampus are moderately reduced in size and quite dysmorphic in appearance but normal in signal intensity characteristics.”

    When I looked at LM’s scans, her hippocampus is actually twisted upward so they look less flat and more rounded. The neuro told us that it makes her more likely to have seizures and that we need to keep an eye on her.

    Anyhow, as I already told you on FB, I am SO HAPPY to hear that everything is where it should be in T’s brain. An early Merry Christmas indeed!

    • solodialogue says:

      Interesting results from LM’s MRI as well. I wish science was more advanced in its comprehension of the brain. Thank you for all your kind words and support. You have been a rock and an incredible fountain of knowledge and strength. I am deeply appreciative always. ❤

  4. So happy to hear this! Merry Christmas to you! 🙂

  5. Lana Rush says:

    YAY! What great news! I’m going to venture to say this might be the best present you get this Christmas….

  6. mamafog says:

    So happy for you and your family.

  7. Oh no, I missed all of this. I’m so glad, though, that I just got to read the happy ending. And with him developing his language every day, who knows what other gifts he’ll be delivering by Christmas Day. So, so glad it turned out okay, albeit with more pieces to the puzzle.

  8. That is just awesome news – no tumor – yay! It is very interesting to me that your son is on Namenda. We have not yet explored any of the Alzheimers drugs for Jacob and I’m curious. Also reading your story I have realized that we should have a rule out EEG for Jake. He’s 9 and I haven’t done it yet. OK, my January job for sure.

  9. eof737 says:

    Congratulations on the good news…. I bet you sighed in relief… It;s been a while. Kudos! 🙂

  10. Stephen says:

    I just stumbled onto your blog (doing a search for Christmas gifts, of all things) … and had to read through this… what a huge relief it must be to have those results… Merry Christmas to you and your little guy! 🙂

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