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Arnold Palmer Hospital
@ArnoldPalmerMod

Posts: 310
Joined: May 22, 2014

Thank you for joining our Motility Disorders Group @momm and @jssouth! We [...]

Posted by @ArnoldPalmerMod, Nov 5, 2014

Thank you for joining our Motility Disorders Group @momm and @jssouth! We would love to get to know you better by telling us a little bit about why you are interested in this particular group and how you hope to connect with other patients and families within the group in the comment box below. We look forward to connecting with you further!

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MOMM
@momm

Posts: 8
Joined: Oct 23, 2014
Posted by @momm, Nov 5, 2014

Hi Carly
Thank you for asking me about why I joined the group. I joined the group because of my daughter increasingly lack of health. We have been to many hospitals and medical seminars only to hear that my daughter\’s body intimidates doctors because they have not been able to diagnose her. After reading all about Arnold Palmer Children\’s Hospital and all the awards you folks have received, my first thought was APCH must live outside the box and truly enjoys solving medical mysteries.

I am in the process of gathering my daughter\’s medical records and am hoping to eventually have her tested by your specialists. In a nut shell, my daughter has not had peristalsis since birth in her colon. It has been described as \”floppy, redundant, mega, and hard to maneuver\”. After living in the hospital more than not they put in a Cecostomy that allows me to take care of her at home. She has significant malabsorption which causes FTT. She did not want a second stoma so she drinks Neocate and splash instead of eating and drinking regular food. By taking 7 grams of USP grade sodium chloride Q8 she has stopped having hyponatremic seizures.
I have watched since puberty set in her body shutting down in most areas. She turned 17 today and I would love to find answers to give her less pain, more fun, and a way to get her thriving.

Sincerely
MOMM
(I use a pen name on public forums)


Arnold Palmer Hospital
@ArnoldPalmerMod

Posts: 310
Joined: May 22, 2014
Posted by @ArnoldPalmerMod, Nov 6, 2014

Hi @momm – Thank you for sharing your story with the rest of the group. I am sure that there are others that can relate to not being able to find the correct diagnosis for their child. I hope that our specialists at Arnold Palmer Hospital can provide you with some of the answers you have been looking for and be able to give your daughter a better quality of life. Wish her a very happy (belated) birthday for me – I hope she had a special day yesterday! Thanks for connecting with us!

Liked by MOMM


MOMM
@momm

Posts: 8
Joined: Oct 23, 2014
Posted by @momm, Nov 6, 2014

Hi Carly
My daughter had 9, yes, 9 seizures today. She has not had seizures in over two years. She also passed out twice today and when I was able to revive her she grabbed her abdomen and started crying even before she looked up at me. She is really out of balance and the local doctors do not know how to help her. Does anyone have any ideas? I am saving money to move to Florida but it looks like her tiny body is going to need help before I can get her to you. My insurance will not cover an out of state referral unless the Hospital it is assigned to agrees to pay for the referral. I have tried many times to get referrals so I may not be able too.

My gut tells me that the doctors are overlooking something again simply because of their lack of knowledge, like when she was having electrolyte imbalances and seizing all the time. I asked for an electrolyte specialist to look at her case and from that point on she stopped seizing. He said it was as simple as playing dot-to-dot with her chart. it was as simple as drinking salt juice 3 times a day to get her seizures to stop. Now, she is seizing again and her sodium blood labs are normal.

These are good doctors they simply do not understand why her body doesn\’t work. If I am to save her brain and get her back in balance she needs more experienced physicians. Today was a really hard day. Can anyone suggestions that I can forward on to the current docs until I can get her to APCH?

MOMM

MOMM


Arnold Palmer Hospital
@ArnoldPalmerMod

Posts: 310
Joined: May 22, 2014
Posted by @ArnoldPalmerMod, Nov 7, 2014

Hi @momm– We are sorry to hear about the difficulties and challenges that you and your daughter are having with keeping her seizures under control. It seems as if your daughter needs to see an epilepsy specialist and given you currently live out of state, it is difficult for us to provide the assistance you need. We also cannot offer specific medical advice to you through this site.

Below is our contact information for our epilepsy center where neurosurgeons, neurologists, specialized dietitians, and other specialized support staff collaborate to offer care for our patients.

Phone: 321.841.1414
Website: http://www.orlandohealth.com/arnoldpalmerhospital/ourmedicalspecialties/centerforepilepsy.aspx?pid=6969


MOMM
@momm

Posts: 8
Joined: Oct 23, 2014
Posted by @momm, Nov 17, 2014

Hi Carly
My daughter went in for the breath test today to check for bacterial overgrowth. Her baseline was 2. The GI nurse said then test had to be 12 or higher to have a positive test. The doctor very reluctantly scheduled the 2 hour test. My daughter’s numbers were 24, 56, 59, 60 for the breath tests. The nurse was surprised and prescribed XIFAXAN 550MG tablets, 1 tablet twice a day for 14 days. Then said she would be cured by Christmas.
When the test came back so high I asked if they would now send a referral you folks to have her evaluated. They flat refused because they do not want to spend money. Isn’t that illegal if they do not know how to help her, and do not have a motility center or nutrition staff that can diagnose why she cannot eat sold food or poop?

How much would it cost if I brought my daughter to APCH for a GI motility and nutritional eval.?

She has a Cecostomy that requires a the use of pump for peristalsis. Hyponatremic seizures unless she has 7 grams of USP grade Sodium Chloride every 8 hours, many food and medication allergies, and ,malabsorption. She could eat food until she was 15 years of age, then her body stopped being able to absorb food about a year ago. Inpatient nutritionist put her Neocate JR.
She really wants to be able to eat solid food again but the GI doctors here have labeled her “Undiagnosable and intimidating” so they simply won’t help anymore and I do not know why. They said they is not cure for pain.

How can I help my daughter is they will not allow a referral?
Thank you for your time
Mom on a Mission
AKA MOMM


Arnold Palmer Hospital
@ArnoldPalmerMod

Posts: 310
Joined: May 22, 2014
Posted by @ArnoldPalmerMod, Nov 18, 2014

Hi @momm – I think it would be best to contact the Center for Digestive Health and Nutrition directly, as they can best assist you with the questions you may have and can schedule your daughter for a consultation. Their number is 321.841.3338. The direct number for The Motility Center at Arnold Palmer Hospital is 321.841.9891. We have gastroenterologists who specialize in motility disorders and we are the only pediatric motility clinic in the Southeastern U.S. and I am confident that our team will provide excellent care to you and your daughter. You can also visit our website for more information in the meantime, at http://www.orlandohealth.com/arnoldpalmerhospital/themotilitycenter/themotilitycenter.aspx?pid=7103

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