UPDATED: Neurology Appt Update - Not great news — The Bump
December 2013 Moms

UPDATED: Neurology Appt Update - Not great news

zonastar23zonastar23 member
Sixth Anniversary 250 Answers 500 Love Its 500 Comments
edited May 2014 in December 2013 Moms
UPDATE: The pediatrician did refer out to audiology after checking to make sure there was no fluid. They said it could be nothing, but we need to have it checked out. I'm praying that it's nothing. We also got the dates set for the EEG and MRI. Our upcoming appointments are 6/4 (Gastroenterology), 6/16-18 (Admitted to the hospital for EEG and MRI), 6/23 Audiology, 6/26 Pediatrician. We are also still waiting on the results of the genetics tests before our next appointment with them is scheduled, and we'll hear from the neurologist I guess after we go in for the EEG/MRI.

I thought things were hard before, but apparently I had no idea what I was talking about. I'm starting to get really -really- worried, because it is sounding like there could be something seriously wrong with his brain. Before, we knew about the 4 oral midline defects he had (ankyloglossia, maxillary tie, micrognathia, and high arched palate), slow weight gain, seizure issues (post-episode neuro exam showed weaker reflexes on left side), a persistant rooting reflex, and some issues with his legs. Aside from the seizures, none of it really had a HUGE impact on anything, because I wasn't sure how much was a real "problem" and how much was just how Noah was. Tuesday's appointment made me realize a lot.

We went through the family history and discussion of what exactly is going on with him. Then the neurologist ran through the exam. Hyperreflexia (reflexes too fast), Hypertonia (abnormally high muscle tone), Frontal Bossing (unusually prominent forehead), Cortical Thumbing (predominantly in the right hand, basically his thumb pretty much stays curled in against his palm), Fisting (hands typically stay in fists), Tight heel cords (his Achilles Tendon can't stretch far), Anomalies of Skull and Facial Bones.... holy crap. I damn near had a breakdown in the office. How did I not pick up on all of this before?! When I thought about it, I realized that his hands are nearly always balled about. I can't even clap his hands together for him, like I could with Izzy. He grabs for something, it's with his fingers, his thumb is always "closed".

Paired up with the seizures, we are looking at a TON of questions. The neurologist is working on getting a pre-authorization for him to be monitored in the hospital epilepsy unit to try to catch a seizure on 24-48 hour video EEG and to get a sedated MRI. We were referred to Early Intervention for the neuromuscular stuff, and he will likely need PT and OT at least.

Now, for the kicker. While thinking about the thumb thing, I realized something else. I already called the pediatrician and we are bringing him in in the morning, but we are likely looking at a referral to audiology. I don't think he can hear. He will coo and smile when you talk to him if he can see you, but not if youre not in front of him, you get nothing. We honked a bicycle horn a few feet behind him, and not even a flinch. No startle. No head turning. Nothing.

I don't even know what to say. I can't think.

Isabelle born via emergency c-section after her heart stopped 04.29.10
asthma, astigmatism, amblyopia, allergies, tongue and maxillary ties

Noah born via RCS 12.09.13
14q11.2 duplication, receptive language and adaptive behavior delays
multiple health concerns under evaluation
follow him here: www.facebook.com/lovefornoah

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Re: UPDATED: Neurology Appt Update - Not great news

  • I am so sorry you are going through all of this. You and your family are in my prayers.
  • I am sorry you are getting hit with all of this at once. It sounds like you have good doctors who are helping Noah to get all of what he needs. Sending you, Noah and your family lots of good thoughts and prayers to get this all figured out quickly. And make sure to take care of yourself too.
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  • Oh, gosh. I'm so sorry! You are in my prayers.

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  • Wow, that is a lot to deal with.  I can tell how much you love him though, and through everything that is what is most important for him to see.

     

  • KateVAKateVA member
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    Oh Zona, I am so so sorry. You are in the scariest part of this because you have all these questions and none of the answers. BUT you have been a pro-active, dedicated mother who is doing an amazing job. You will get the answers. xoxo
    zonastar23[Deleted User]dollypardontyedyeme12
  • I'm so so sorry. You clearly love him and he's getting all the help you can find him right now. He's a lucky boy to have you. FX that this can be cured through some PT/OT. T&Ps go out to you and your family while you all figure this out.
  • I'm so sorry. I feel so bad for Noah, I hope you get some answers and they can catch a seizure so you can find out why they are happening. Your family is in my thoughts and prayers.

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  • Oh goodness, I'm so sorry your family is going through all that! I really hope you guys get some answers soon & that the little guy is okay.
  • KateVA said:

    Oh Zona, I am so so sorry. You are in the scariest part of this because you have all these questions and none of the answers. BUT you have been a pro-active, dedicated mother who is doing an amazing job. You will get the answers. xoxo

    I don't have much to add to this other than I hope you don't have to wait long to get answers.

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  • n8swifen8swife member
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    I'm sorry that you are all going through this. I will pray for Noah and your family. Hope you get some answers soon
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  • serendserend member
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    I'm so sorry. Agreed with all the PP's comments. Noah is lucky to have such a loving mom who is obviously fighting and advocating hard for him. Keeping you both in my thoughts.
  • Thanks everyone. I think I am kind of in shock. I feel like crap for not picking up on some of this stuff earlier. I will go to the ends of the Earth if I have to for this boy but I am terrified of the possibilities with all of these issues. I just want him to be okay...
    Isabelle born via emergency c-section after her heart stopped 04.29.10
    asthma, astigmatism, amblyopia, allergies, tongue and maxillary ties

    Noah born via RCS 12.09.13
    14q11.2 duplication, receptive language and adaptive behavior delays
    multiple health concerns under evaluation
    follow him here: www.facebook.com/lovefornoah

    [Deleted User]chemily8
  • I'm so sorry you are going through all of this. Your family has been and will continue to be in my thoughts

     DD born Oct 2011 - DS#1 born Jan 2014 - DS#2 born Apr 2015 - DS#3 born Sept 2016 - LO#5 due Feb 7, 2018

  • I'm so sorry you and little man are going through this. I'll be praying for you as you seek answers and treatment.
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  • jy725jy725 member
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    I'm so sorry. I'm thinking of you and Noah.
  • SO sorry you're dealing with this, but I'm glad you're finally getting answers. You are doing all the right things and advocating for your child. It sounds like you're going to do your best for him, no matter what. That's really all you can do. Best of luck to you and your little guy!
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  • I'm so sorry about all of this. Don't beat yourself up too bad at all (easier said than done I know)! Did he have a hearing test when he was born? I only know we did because I could hear her throwing a fit outside the room. One of the few things I actually remember that they did....

    Maybe the hearing thing is the basis for some of the other issues? I hope you can get some answers soon!

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  • I'm so sorry to hear about all of this. I can only imagine how heartbreaking this is for you. You have done an amazing job so far of taking care of him and getting him the medical care he needs. I hope the testing and diagnosis phase passes quickly so you can get answers. I'm keeping you and your family in my prayers.

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  • swirl25swirl25 member
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    I'm so sorry. Agree with everyone else that you shouldn't beat yourself up...your love and persistence will get him through and the answers you need. Prayers for Noah and your family.
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  • I'm so sorry, Zona.  I hope they are able to test & diagnose quickly so you can move on to an action plan asap.  You're doing a great job taking care of him and getting him the medical attention & intervention he needs.
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    zonastar23
  • That's a lot to take in. I'm so sorry this is going on. All I can say is ((hugs))


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  • Keeping you guys in my thoughts. You definitely shouldn't feel bad though. You're a great mom & Noah is certainly loved by you. :x
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  • Thinking of you guys. Noah's lucky to have you!


  • I am so sorry you and Noah are going through all of this. You are in my thoughts and prayers. I hope you get answers soon.
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  • I'm so sorry you guys are going through all this, I can't imagine. You're in my thoughts and prayers.


  • I hope you get some answers and you can get the right kind of help for him. It sounds like you're on the right track.

    You already know this but Noah is an amazing little boy. He is perfect exactly the way he is. And he has a loving family who will do anything for him and that will get him far.

    We are all here for you. Give that sweet little boy some hugs and kisses from me and from all of us!  

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  • lp0lp0 member
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    I am so sorry you are going through this. Sending all my thoughts and prayers for your little guy.
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    "Happiness is like a butterfly; the more you chase it the more it will elude you but if u turn your attention to other things it will come & sit softly on your shoulder."

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  • I'm so sorry about all of this. Don't beat yourself up too bad at all (easier said than done I know)! Did he have a hearing test when he was born? I only know we did because I could hear her throwing a fit outside the room. One of the few things I actually remember that they did.... Maybe the hearing thing is the basis for some of the other issues? I hope you can get some answers soon!
    He did, and passed, but that doesn't meant that there may not be an issue with something progressive. Or that it couldn't be caused by something that happened after the test, like the early jaundice or maybe even the seizures. I don't know.
    Isabelle born via emergency c-section after her heart stopped 04.29.10
    asthma, astigmatism, amblyopia, allergies, tongue and maxillary ties

    Noah born via RCS 12.09.13
    14q11.2 duplication, receptive language and adaptive behavior delays
    multiple health concerns under evaluation
    follow him here: www.facebook.com/lovefornoah

  • VCGolfNYC said:
    I'm so sorry, Zona.  I hope they are able to test & diagnose quickly so you can move on to an action plan asap.  You're doing a great job taking care of him and getting him the medical attention & intervention he needs.
    Thank you. The action plan is what I'm waiting for. Right now, all I can do is wait for the DNA microarray to come back, wait for the EEG and MRI to be scheduled, wait for his upcoming appointments, and keep watching everything he does to report to his doctors. I'm worried to even start fruits and vegetables without knowing what's going on, as stupid as that sounds. I just want to know what's going on.
    Isabelle born via emergency c-section after her heart stopped 04.29.10
    asthma, astigmatism, amblyopia, allergies, tongue and maxillary ties

    Noah born via RCS 12.09.13
    14q11.2 duplication, receptive language and adaptive behavior delays
    multiple health concerns under evaluation
    follow him here: www.facebook.com/lovefornoah



  • I'm so sorry about all of this. Don't beat yourself up too bad at all (easier said than done I know)! Did he have a hearing test when he was born? I only know we did because I could hear her throwing a fit outside the room. One of the few things I actually remember that they did....

    Maybe the hearing thing is the basis for some of the other issues? I hope you can get some answers soon!

    He did, and passed, but that doesn't meant that there may not be an issue with something progressive. Or that it couldn't be caused by something that happened after the test, like the early jaundice or maybe even the seizures. I don't know.


    Ugh, I'm so sorry. I hope they can find some answers for you soon!

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  • I'm so sorry. Big hugs to you. 

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  • I'm so sorry. There's not a lot I can add to what the PPs have said. I am praying for you guys to find out what it is soon and that it's totally mild and easily correctable. ((Hugs))

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  • I'm so sorry, I cannot even imagine what you're going through.  :(  I'll be thinking about you and your LO, and hoping they figure out exactly what is causing the issues and start to get him better!
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  • So much thoughts and prayers coming your way. I couldn't even imagine. You are so strong and brave. Hang in there and love on that little boy!!
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  • So sorry Zona. Thinking of you and sweet Noah

  • I'm so sorry. I hope you can get more answers soon. There is so much medicine can do now and he is young. These are things in your favor. I hope you know you are doing a great job as his mom. Hang in there. We are here for you. Big hugs.




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    zonastar23
  • Oh my gosh sweetie, this is so much. It's just insane. Hang in there and just try to take it as it comes. We are all thinking of you and praying for the best .
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  • I'm so sorry. Thinking of you and Noah. Hoping you get some of your questions answered soon
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  • Oh Zona, I'm so sorry. Prayers that you get answers soon and are able to start therapies immediately. I don't remember where you are, but the Early Interventuon services here are a wonderful resource for thereapt and support from people who have seen a lot of this and can connect you with others. So many hugs to you, mama. You are fighting hard for your sweet boy.

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