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Post Info TOPIC: Update on my 5 yr old daughter's situation
alb


Marc Jacobs

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Update on my 5 yr old daughter's situation
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Hi all.  I am still in Baltimore with my daughter and wanted to give a quick update.  She has been poked and prodded extensively for the past 2 and a half weeks and, thankfully, many conditions have been ruled out.  Her neuro-pscyh eval. was normal, meaning she does not have anything on the autism spectrum or any other learning disability.  She was diagnosed, however, with a developmental delay (of about one year) and social anxiety, but does not need meds - only a bit of therapy and positive reinforcement, etc.  So that's the good news.

Other good news is that she is not having any seizures - her EEG and MRI were normal, but some of her blood levels were not, so they are now referring her to a metabolic endocrinologist to test for a metabolic illness or, specifically, mitochondrial disease.  I have done a bit of research on these illnesses and they seem serious, so we are concerned but waiting to see what transpires.  Every day has been a challenge - but we are blessed and hoping and praying for a positive outcome.  If she does have some kind of illness, at least we will know about it and hopefully catch it in its early stages.  Thanks everyone for the advice and support.  I'll keep you all updated. 

Oh and they are also concerned that she might be pre-diabetic as her blood glucose levels were high.  Anyone have any experience with this?  



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greendiamond


Marc Jacobs

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I can't imagine how stressful it is to see her being poked and awaiting the results. I'm happy to hear that many concerns have been ruled out, that must be a relief. A developmental delay and some social anxiety are certainly things she will be able to overcome wth work.

As for the possibility of metabolic illness and pre-diabetes, I'm sorry to hear that. Keep us updated. Will you be able to see the metabolic endocrinologist while you are in Baltimore?

Thank goodness you were able to get into Hopkins and get the testing that she needed! I sounds like they are making a lot of headway.

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-gd
Boots


Gucci

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I'm so glad that you're getting some answers on your daughter's health concerns. I can only imagine how difficult it must be for your family right now. Your daughter is a trooper though, for getting through all the tests and doctor visits!

I will keep her in my thoughts and prayers. Hopefully the more serious issues will be ruled out too and she will only have some minor things to deal with. Please keep us updated on her.

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alb


Marc Jacobs

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Thanks GreenDiamond and Boots. I appreciate your kind words. GD - yes she is going to see a specialist in Baltimore, hopefully they can get us in next week. And yes, Boots, she is a trooper - but she has gotten lots of new toys and ice cream. It's been stressful but we will get through it!

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kenzie


Chanel

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Thank you for updating us! So glad she could get the testing she needed. Sorry to hear about the other illness possibilities and I hope you get answers soon.

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D


Hermes

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Thank you for the update, alb. You're doing everything you can, so hang in there. Sending vibes of strength your way.

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alb


Marc Jacobs

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Thanks, Kenzie and D. Your support means more to me than you know. :)

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D


Hermes

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alb wrote:

Thanks, Kenzie and D. Your support means more to me than you know. :)



 aw, I'm honored.  (((hugs)))



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Miss Mabel


Kenneth Cole

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I wanted to add my good thoughts and wishes as well. I'm glad the docs are checking into it thoroughly, and I'm pulling for a good outcome.

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ayo


Coach

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I am praying for a good report for Lucy, so sorry she has had to go through this. By the way, I moved not to far from Baltimore..please let me know if you need anything and I really mean that.

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Proud momma of two princesses
alb


Marc Jacobs

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Thanks Ms. Mabel, and Ayo - that is so very kind of you. I, too, believe in prayer and appreciate yours for Lucy. She's got a lot of people pulling for her and praying for her - and I take great comfort in that.

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Yana


Dooney & Bourke

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great news! Happy to ready about it!

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YanaK
small fry


Chanel

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Glad to hear you got some answers praying that everything works out

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alb


Marc Jacobs

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Thanks Yana and Small Fry!

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mikacat


Coach

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alb-
i just got back on ST after years and I hate to hear this about Lucy. I hope the tests turn out fine. I can't imagine how stressful this must be, sending hugs and strength your way!

mikacat

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KaffeeKlatsch


Marc Jacobs

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I'm sure you both are tiring of all the testing, and I just wanted to let you know I'm thinking of you and hoping for very positive outcomes.  
It's a blessing in disguise, I think, to have her diagnosed with both the developmental delay and the social anxiety, because now you ought to be able to take that back to the school and really get the ball rolling on addressing her school needs.


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alb


Marc Jacobs

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Mikacat - so happy to you back! I just sent you a pm. Kaffee - thanks for your support. I went back and read my first response to you a few weeks ago when I first mentioned all this -and when I said I had forgotten that your son had special needs it was because I thought "Kaffee Klatch" was an entirely different poster! I forgot that you had changed your user name (albeit that was a long time ago) - and was thinking "I wonder why L didn't respond? Guess we have two special needs moms on ST!" - LOL. So anyway, I just wanted to tell you that - I follow your blog and def. did not forget about your little man and his situation! I've been thinking of you and I sure hope things start looking up for your little guy as well.

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KaffeeKlatsch


Marc Jacobs

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Awww...to funny! I think several people on here have gotten tripped up by my name-change.
Thanks for the well wishes!

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...High expecations are such trouble-makers...

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