Dysphagia…

so, we first started this blog, as a place to journal our journey through Lyme disease, and what ever other health issues arise.  We decided to make it open, to the public, YOU, because we collectively thought it might be a blessing to someone, some bit of research.. here or there, might really help… We thought of how many blogs helped us, find links to good research, and provided helpful insights, of WHAT to watch for, What to do, or better still NOT do with certain conditions.. We often read through other peoples blogs, when feeling down, and found reading another perspective really .. well HELPFUL..

So, THAT is why this is an open blog.. we are NOT doctors.. we are JUST a family.. Our journey may not look like yours.. our choices may not be yours.. but.. THAT is ok 😉

Today.. here in THIS post.. I want to just take notes.. It isn’t a fancy, post.. It really IS a place for me to collect links about a whole new issue to me.. One I have been facing now for a while, but… without it’s name…

Dysphagia… it’s an eating disorder.. though NOT the kind you think of, when I write the words… EATING DISORDER… not at all.. it literally is, a disorder, making eating difficult.. a Swallowing issue.. and Baby struggles with it..  Dysphagia can lead to choking, and even aspiration pnemonia.. which he HAS had more than once… along with countless (that means I stopped counting… ) upper respiratory infections..

Dysphagia is a serious medical issue.. it can face young or old.. We do not yet know what caused this in baby.. we have oooodles of other doctors to see..

I know.. I know.. “ooooodles”.. REALLY, you are probably thinking.. “she is SO the drama queen!”  (giggling)… maybe..

To me having to see….

Pediatric Gastrointestinal Specialits (G.I. guy)
Pediatric E.N.T.
Pediatric Neurologist
Pediatric Pulmonologist

to start.. is ooodles  but in reality. it is FOUR.. ok.. I exaggerate! 🙂

WE also have to set up

Speech Evaluations
Occupational Therapist Evaluations

with E.I. of our County.. ~phew.. feels good to write it all down.. it doesn’t FEEL so hairy scary with it written down…

Now… for the links for me, to share with the rest of my family, and YOU .. what it is.. options for treatment.. what EVER.. this is ME in research mode…. I will jot it all here, and then… go through it all, as time affords me in greater detail… so if YOU want to know more, or are trying to learn more about Dysphagia… like we are.. here are links.. Please feel free to share your own.. or YOUR story 🙂

http://www.nidcd.nih.gov/health/voice/dysph.html
http://www.nlm.nih.gov/medlineplus/swallowingdisorders.html
http://www.webmd.com/digestive-disorders/tc/difficulty-swallowing-dysphagia-overview
http://www.umm.edu/altmed/articles/dysphagia-000053.htm
http://emedicine.medscape.com/article/324096-overview
http://dysphagia.com/
http://www.mayoclinic.com/health/difficulty-swallowing/DS00523
http://www.dysphagiaonline.com/Pages/home.aspx
http://www.springer.com/medicine/otorhinolaryngology/journal/455
http://www.dysphagiaresearch.org/
http://www.cedars-sinai.edu/Patients/Health-Conditions/Dysphagia.aspx
http://www.medicinenet.com/swallowing/article.htm
http://www.dysphagia-diet.com/
http://www.merckmanuals.com/professional/sec02/ch012/ch012b.html
http://www.aafp.org/afp/20000615/3639.html
http://www.childrenshospital.org/az/Site815/mainpageS815P0.html
http://www.unboundmedicine.com/medline/ebm/research/dysphagia
http://www.periodicals.com/html/ihp_e.html?sp0179051X
http://www.beckmanoralmotor.com/pdf/OMGITractBibliography.pdf
http://www.thecochranelibrary.com/userfiles/ccoch/file/Acupuncture_ancient_traditions/CD006076.pdf
http://dysphagia.com/maillist/1998-December/msg00017.html
http://vimeo.com/19529209 – Video from Top Chef!  a Dysphagia challenge 🙂
http://www.neocate.com/blog/dysphagia-gerd-eoe-and-silent-aspiration/
http://www.scribd.com/doc/51596668/Technology-and-Professional-Networking-in-Dysphagia-Therapy

phew~ That seems like enough reading material for the next week or so.. I have a LOT to learn.. in yet another NEW area… a LOT of new people to meet, doctors, therapists.. etc..

Prayer requests!!!!!!!

I would like prayer that this would be organized into our schedule in such a way, as to cause the least amount of disturbance to daily rhythms in our family life.. Home education is a busy, industrious lifestyle.. and I am thankful for “summer” to look into this matter.. Pray that I STAY or rather GET organized with all this.. as it is coming.. And the Lord WILL see us through this.. Many appointments to be made, and it all costs so much money.. on TOP of our Lyme Treatment.. which is paid for completely OUT of our pockets.. and on top of all our dietary needs.. gluten free, casein free, soy free etc etc etc.. 🙂

Pray that we would be wise with the money’s that the Lord is providing, and will be providing..that we would LEARN of ways to do things even more affordably, and stretch every dollar we PRAISE the Lord for Machine Man’s wonderful employment, and what seems will be good insurance..!  God is good to have provided it, when so many struggle with out..

Pray that we would find healthful solutions to really bless Baby !

Pray the kids still have many opportunities to find FUN, and laughter, and silly times this summer.. ALL of them, and that doctors appointments etc, do not cloud out their childhood memories entirely 🙂 They are SUCH Blessings, and I want to make sure to carve out time, for my kids, to BE kids! 🙂

Thank you for your prayers.. it is a BIG deal.. but we have lot’s of those..

and our GOD is much much BIGGER!

also.. I wanted to share some helpers the folks at the hospital who conducted Baby’s Video Swallow Study, gave to me as samples..

IN case you wondered, they gave us some thickeners… that won’t bind with water molecules, but are supposed to be great.. if you know of more…. share in that comment button!

http://www.simplythick.com/E72B593D-F1FF-A87C-DA313E0BC75483FC
and
http://www.thickitretail.com/wheretobuy.html

so we shall see… I also came across THIS from Nestle.. I wonder if anyone out there knows anything about it 🙂

anyways.. thanks for allowing me a researching vent.. 🙂

you are a blessing!!!!!!!!!!! and don’t let ANYONE tell you different!

<>< Five Lymies and a BABY!!!!!!!!!!

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About sweetnika

Home Educator, Loving Wife, Born again Christian, decorating, photogaphing, blogging, reading adventurer, off on an exciting new adventure!
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3 Responses to Dysphagia…

  1. Teri says:

    That’s oodles of doctors!

    I was going to recommend you get a speech evaluation asap. Acorn Pediatric Therapy in Crystal Lake, on Main St. you should call and see if Ami is still there as an OT (she is from India and at one point her intention was to move back.) If she is, ask your coordinator to have her as your OT. She was David’s, even when we were no longer with ECE. She is amazing. The speech therapist I would recommend is an hour and a half away.

    I know it is all overwhelming, but it is calming to have a plan. j

    You are a good mommy.

    • sweetnika says:

      Thank you Teri! I am going through E.I. right now.. but I will keep THAT in my pocket.. I can’t thank you enough for the insight, and the encouraging words.. It feels like a BIG fat cyber hug… wish I could just sit on the couch with you and visit.. cry, laugh, and nibble on gf yummies!
      ((((hugs)))) to a really GREAT mommy.. U!

  2. Scott says:

    Hi,

    Thanks for sharing this informative links, I would like to share one more link on dysphagia that can help dysphagia patients for swallowing problems.

    http://www.dysphagia.org.uk

    Thanks.

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