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OT- Daughter Update

chewyspaghetti

Veteran

I had written in other threads about my 10 yr old dd's on-going GI problems. We had an apt with her specialist today, and I wanted to post an update here. The doctor is concerned about her weight loss, and is ordering bloodwork for Celiac's and other things, and an Endoscopy/biopsy (scope down the throat). She will be under conscious sedation for that, (meaning that she won't remember anything), and the nutritionist is also going to meet with us at that time to discuss her diet. This won't be until mid July, and she will have to go back on gluten, dairy and soy for a week or two before all the testing is done. We're just hopng that some of this testing will point us in one direction or another.

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24 replies

Latest reply was from chewyspaghetti

anne

Veteran

Khris,

I hope they can work out what the problem is sooner rather than later, and that it won't be too traumatic for your daughter to go through the procedures. I'll be thinking and praying for her and you

rute

Veteran

CS,

Hope everything is solved very soon! I will pray for her.

Louise

Veteran

Fingers crossed you finally get some answers x

HannahC

I am keeping my fingers crossed for you and your daughter. Hope you will finally get answers and will be able to construct a reasonable diet for her. Neither celiac, nor lactose intolerance, nor food allergies are that bad per se; not having a diagnosis is what makes it hard.

April

Veteran

Khris, wishing you well on this frustrating journey. I'm a school psychologist (which, contrary to what the name implies, has very little to do with mental health; my main job is making sure students with disabilities are having their needs meet in school) and I work with many students coping with all kinds of physical, learning, and emotional challenges.

I don't know if your daughter attends school -- so many families teach at home when there are intense food-related sensitivities -- but if she does and I can help you navigate the system in any way (or just listen) I will be glad to have you contact me off list. Hang in there.

chewyspaghetti

Veteran

Thanks everyone- I appreciate it.
April- thanks so much. We actually do homeschool (since the oldest hit kindergarten age), and I am really glad at this point that we do. It's just one less thing to have to deal with. I didn't know that you were a school psychologist.
I showed the lab slips to a nurse friend of mine, and she explained what some of the tests were checking for. She thought that the doctor was running a good panel of tests- ahd she's pretty picky, so hopefully we will find some good information out. They are just not really sure what it is at this point, so checking for colitis, IBS, Celiac, Crohn's, etc.

Anonymous

Oh as a Mom I know how worried you must be. Please keep us posted on how this unfolds as we all care deeply, I'm sure, about your precious daughter.

Angie

(website)

Fashion Stylist

Khris, my thoughts and best wishes are with you and your daughter. I hope you get to the bottom of this too. My best friend has had GI issues for 16 years and is still going to every specialist and naturopath under the sun. She has been tested for EVERYTHING (colitis, IBS, Celiac, Crohn's etc). I actually took her to her endoscopy.

Long and short of the matter is, they recently found out that she is also hypoglycemic which was very GI related and for the first time ever she has been able to get somewhere with her tummy issues. Anyway, I just wanted to relay the story in case it helps. Hang in there and keep us posted.

Michelle

(website)

Veteran

Oh Khris, how worrisome! Best of luck to you and your daughter. Keep us posted if you feel comfortable doing so.
April, just a fun sidenote, my mom had the same job as you until her retirement last year. What a great field! I wanted to follow in her footsteps for years, but was defeated by lack of interest in early-year university psych courses. :p Patient I am not!

chewyspaghetti

Veteran

Angie- that's very interesting.
Thank you all, and I will keep you posted.

Maya

Veteran

Oh Khris, I'm sorry to hear about this unpleasant journey. I had to go through a similar ordeal as a teen (not for tummy issues, but for all kinds of seemingly unrelated issues) and I could tell it was at least as difficult for my parents as it was for me (turned out to be thyroid disease). I'm sure you'll feel a great sense of relief when you figure out what the diagnosis is. Waiting and being tested is the hardest part. Finding out what is wrong and how to treat it is easy in comparison. Wish you and your DD all the best.

Vani

Veteran

Khris, I hope everything is sorted out soon with DD. I know how worrisome not knowing can be. My brother has had all kinds of health problems growing up and at 14, still does. But what makes the difference is now we know what was causing those issues and are aware of how to control with medication etc. When he was a kid, they even thought he was displaying symptoms of rheumatoid arthritis. He would run up a fever every few weeks, have intense seizures etc. Though his medical problems are more to do with his nervous system than the tummy. I hope she can soon start eating and doing most things that a little princess wants to and should be able to enjoy

chewyspaghetti

Veteran

Thanks so much for sharing your stories and experiences, ladies. The waiting is always the hardest part, but we're only having to wait because her doctor had a vacation planned. The timing actually works out really well for us- she will be done with her annual dance recital and able to enjoy 4th of July before changing her diet back. The period of time that she will probably not be feeling well is her break from dance, and we have nothing planned during that time. We can just hang out at home and keep life low key. She's already got a growing list of what foods she wants to eat- bagels, pancakes, pizza, mac N Cheese, so we're focusing on the positive.
I'm really not worried about the testing itself. DD is so stoic- she is a brick for anything medical. The dentist always comments about it- she is absolutely silent and motionless anytime she has to be poked/prodded, etc. As soon as I told her that she would be asleep for the test, she was fine with it. (My son would be another story!) I think it's because that she spent her first three weeks fighting for her life, and had so much done to her (heart/lung bypass)- that she is like that.
I appreciate all the support

shiny

Veteran

Chewy, thoughts and prayers coming your way... I'm happy to hear they are running all these tests and getting to the bottom of things. Keep us posted! You do have to wonder if her hospitalizations somehow introduced some foreign stomach flora, huh? I have always thought eventually they will discover IBS - and all these food allergies/intolerances that have become so widespread in kids - is caused by some sort of stomach bacteria we just don't recognize yet.

Niva, your brother's symptoms sound familiar to me! For a long time, they thought it was arthritis but the xrays consistently show that's not the case. And I have run fevers on and off and blood tests hint at an immune reaction so there may be an unknown virus my body is battling. A year ago they finally dx'ed me with fibromylgia. IBS is often a component of that; I'm not sure I qualify for IBS - my stomach issues are much more upper GI than lower. The doctor has explained that much of it is from my brain. It took me awhile to come to grips with that idea, but I do agree... except what about the virus? He says "just coincidence" but I don't know.

Angie, I'm intrigued by your friends' hypoglycemic connection.

chewyspaghetti

Veteran

Thanks shiny!
I recently saw an article about how the plastic that babies in the NICU can affect them negatively, and specifically kids who have heart/lung bypass like she did. It was the ingredient that allows the plastic to be felxible that causes the issues (can't remember what it's called right now), but without it, and those plastic tubes- those kids would usually not survive- so what are you gonna do? Yeah, a hospital setting is a great place to get sick.

Alecia

Veteran

Just wanting to send my postive energy your way, too. Hang in there.

susan

Chewy-I guess I somehow missed your other threads about your daughter's tummy problems. You have my sympathy for all your concerns because our son who is 23 was just diagnosed with IBS and I know how frustrating it has been for us. I'm curious how others with IBS have learned to cope. What works and doesn't? He was told to try a probiotic which seems to be helping, but we were all pretty bummed that there doesn't seem to be a definitive answer. Any advice out there?

chewyspaghetti

Veteran

Susan- currently she is on a gluten free, soy free, dairy free, extremely low fat and meat free (except fish) diet. She is feeling pretty good most of the time, but she is losing weight because that doesn't leave anything with much calories or protien that she can eat. But, we also don't know that it is IBS.

susan

Well, good luck to you and your sweet little one as you try to figure this out. Bless her heart-she doesn't have many choices left.

Kathleen

I will be thinking of you and your family at this time. She will be alright. It is a good thing that you are working these issues out now.

Hope all is well.

taylor

Veteran

Chewy,
I have been reading and keeping up. Just want to say there is nothing more upsetting than a sick child, or loved one. My thoughts are with you for a speedy resolution to this . I know the stress and helplessness a sick child can bring to parents, hang in there:)

Kyle

Veteran

When your child is sick or in pain, as a mother, you would rather bear the brunt of it yourself. Positive thoughts and prayers for a quick diagnosis and return to good health.

shana

Veteran

Khris, my thoughts and prayers are with you. I hope the doctors can come up with some answers soon. Having a sick child is so stressful - hang in there!

chewyspaghetti

Veteran

Thanks guys!