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holy testing, batman!

realisticdreamsrealisticdreams member
in Special Needs
Sooo we saw the neurosurgeon and he does not think that P's cord is re-tethered, he also wanted us to see a neurologist (which we already have)..and their's didn't have an opening until late November (she's an MD specialist..insert me freaking out here..)  I've got a kid whose hysterical everyday and it's breaking my heart.  So i called our neuro and they had a cancellation for this morning.  

We have to get 2 new MRIs (brain & cervical), go to a neuromuscular clinic for EMG testing, rheumatology since their is a pain factor and a ton of lab work. 
Really?  Again?  I feel so defeated that we are playing the diagnosis game again, we did it, a lot of it, for both girls for a long long time.  I was glad to be done with it, I feel like she's a guinea pig again.  And she's already showing behavioral issues in conjunction with the few appointments we've had to do in the last few weeks, so this should be SUPER FUN!

Part of me wants to forget I took her today and pretend like everything is okay, except we are far enough into this now for me to know that isn't even a daydreaming options.

BOOO.
DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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Re: holy testing, batman!

  • august06momaugust06mom member
    I'm so sorry things are difficult right now. ((((hugs))) to you.
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  • Assembly_ReqdAssembly_Reqd member
    Hugs..
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  • JoJoGeeJoJoGee member

    I've been thinking about you.  Wish there was something that could be said to make it better.  Hugs.

    I'll just keep hoping that whatever is making P's leg hurt is discovered quickly and resolved easily.

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  • realisticdreamsrealisticdreams member
    The worst part is, my gut feeling is that ALL of this will come back normal, and I will feel AWFUL for putting her through it.  My innermom is telling me they just hurt from post-surgical changes to her spine, although the neurosurgeon disagrees, the neurologist said that was a possibility as well.

    I guess we'll see, all of this junk is being spread out between now and December, go figure!
    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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  • Rachel SonnierRachel Sonnier member
    So sorry. Sending lots of good thoughts and vibes your way. It is SO hard to see your child in pain. 
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  • ToastieSimonsToastieSimons member
    Ugh, so sorry she has to go through even more testing. Praying that everything goes well!
    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
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