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Motility was never discussed when we saw the doctors. Not once. Just a push to use laxatives. It makes me angry.

So I've gotten her on a daily dose of Fibre powder. We will see how this works while I wait for her doctor appointment.

Hi Dragn,

My oldest daughter (now an adult) was also a premie and has had to deal with pooping issues too. I remember being given a binder with information at the hospital that briefly mentioned the milestone delays and common health issues premies developed (I remember eye problems were a big one ).

At about 6 months old once she started more solid foods, mine started to have a BM every 2-3 days. When she was a toddler/preschooler & it got into the 4th day several times, her pediatrician prescribed suppositories to use to relax things as needed. Around 5th grade, she was diagnosed with a learning disability related to being a premie (NVLD) and put on daily liquid medication to help with some of the issues (also had trouble with pills - tongue & swallowing - until HS age). The medication also made her BMs more of an issue. Her pediatrician had her take Miralax daily mixed with fruit juice, for years. We didn't see any side effects of doing this longterm with her. The swallowing issues with pills might have been a holdover from when she didn't have that suck-swallow reflex as a newborn - it took a while for it to manifest - I hated the IVs in her and then the feeding tube in her nose that was taped to her face.

Mine took up sports when in school and all the movement seemed to help BMs too. We also found, at least for me and my 2 daughters, that just water wasn't enough for hydration while doing sports. Water was the major drink, but they needed to have a small bottle of sports hydration drink to sip along with the water. Gatorade or Powerade. It's something to do with balancing the salts that they sweat out (and they sweat a lot). And their water intake was generally lower than what they estimated it to be, so that's common. When I went for my colonoscopy exam, the prep "cleanout" included taking several doses of Miralax in 64oz of yellow Gatorade and drinking it over a hour or two. H has used this to deal with his constipation issues too. It might be something to ask her dr about.

You might also keep in mind food allergies. We also figured out mine developed an allergy to blue food dye (colorful birthday cakes!) which triggered BM issues too. Later as an adult, she had digestive tract discomfort and her dr put her on the bland diet for a few weeks, and then you add certain foods on a schedule to find out which ones you are sensitive to. She determined she had a sensitivity (not allergy) to gluten. Too much and yuck.

Since you mentioned nutrient absorption issues, I wanted to mention what I was told by a woman I worked with who was in her 40s at the time. She said she always struggled with her weight being too low. She found a specialist that had her record her intake in a food diary and collect her "output" over a week or two. She mentioned that the dr told her that everyone is different in their absorption rate and that there are many aspects to this issue - hence the samples so they could start to figure out her individual problems and what to try to deal with them. One thing I remember is that she mentioned that some nutrients were better absorbed earlier in the day and some later in the day. Some supplements might have all the amount you need of a certain nutrient, but if you take it all at once, a good portion of it comes out. So she was put on some supplements several times a day to see if a certain nutrient would absorb better that way.

I hope you and your DD get some answers and direction of how to deal with these issues soon. Once she turns 18, it's a whole new ballgame to deal with their medical issues as a parent of a young adult with the confidentiality laws.

My dd isnt considered a premie. She was delivered at 38 weeks but was only 3lbs 7 Oz. They took her placenta for resting and said it wasn't functioning properly. We were given terms like:

Small for gestational age.

Intrauterine growth restriction.

Failure to thrive.

She was in the NICU for 3 weeks, on IV and feeding tube, never was able to breast feed, took forever to bottle feed, had severe reflux, had to sleep pretty much sitting up. She was never on the growth chart.

I swear the first 2 years was just Hell. Doctors actually accused me of NOT FEEDING HER. I was threatened with having her taken away and put back on a feeding tube. At that point I put on the bitch boots and demanded a referral to the children hospital. At first it was just the pediatric feeding clinic and being told to calorie boost. Problem was dd didn't eat what she wanted to. I had her home nurse come with us to confirm that dd would throw food away and only took her bottle but would chuck it if we put something other than her special formula/milk.

Finally got in with the genetics team and endocrinologist. Again no one could figure out why she wasnt growing. They have tested for everything.

For 3 years dd did growth horomone therapy through endocrine and genetics finally found out she and two of her sibling have the genetic marker for Alagille syndrome but not the liver issues so they cannot officially diagnose her.

Dd has incurving of the baby fingers, a high pallette, almond shaped eyes, triangle shaped face, lower set ears, severe myopia and wasnt able to speak so while we taught her ASL she attended speech therapy.

So shes been taking the psyllium powder daily and had a crap that was so much smaller. She said she still doesn't get the feeling to go, she just keeps sitting and trying.

This last week shes been getting dizzy and again not eating so I am calling doc today too get her seen asap.

I am shocked. I got an appointment for her for Wednesday next week.

So I need to ask about motility tests and to test for feeling.

Anything else I should being up to the doctor?

TIA

Well dd and I went to see the family doctor last night.

Again I just feel so defeated. Despite bringing up all the things people mentioned here and wanting a referral to a gastroenterologist, the doc chose to have her try Restorlax and do bloodwork since dd is also having dizzy spells.

She's not eating much lately either.

He's testing for diabetes and ordered an ecg.

Dd isnt happy with me. She hates bloodwork.

I have to call the lab and make her an appointment.

I think, not sure, that restoralax and miralax are the same thing or similar.

If DD is not eating and having dizziness then bloodwork seems to make sense.

You're trying to help her and it sounds like the Dr listened to you.

DD is a teen. They get upset a lot.

(((Dragn)))

DD refused his suggestion of an x ray and was very hesitant to even let him take her blood pressure. Sure she's been through alot over thr years with doctors but I didn't realize just how much of an effect it had on her.

She told me before we even got there that she would have to do bloodwork.

I was hoping to see the specialist again just to get an idea if she has an actually condition causing this (like Hirschsprung's disease) since this has been going on since birth.

I called the lab. They accept walk in appointments but close early so I'll just have to pull her from school.

She's almost always dizzy when she gets home from school and her legs keep giving out. I've caught her a couple of times. She's not eating but craves salt. Still drinking plenty of water. I just can't get her to eat and I keep making all her favorites.

I understand. You want a diagnosis not just treatment of her symptom with the constipation. That makes sense and seems more than reasonable considering how long this has been going on.

Was the x-ray to see if she was backed up?

I understand. You want a diagnosis not just treatment of her symptom with the constipation. That makes sense and seems more than reasonable considering how long this has been going on.

Yes. This is for my sake not hers really. Our genetics team told me that right at the start that a diagnosis didnt mean a cure. I get that. It's just after years of being g tokd I wad just a bad mother I have so much trauma from that, I need a diagnosis as a fuck you to all those doctors who treated me like shit!

Was the x-ray to see if she was backed up?

Yes. I dont think she is backed up right now. Since having the crap that plugged up the toilet she's been going little bits with the psyllium Fibre laxative. And now eith not eating I can't imagine much is in there.

"I need a diagnosis as a fuck you to all those doctors who treated me like shit!"

I get that. So frustrating.

I cried when I got the results of my colonoscopy because I was told nothing was wrong with me and I needed to learn to deal with discomfort, basically stop being a baby. I was so relieved and angry that there was indeed something very wrong.

It was bad enough happening to me but I'm sure would be so much worse when dealing with your child. You have been a strong advocate for your children!!!

I dont feel that I've been strong. With everything that has happened, one thing after another I feel like I'm just holding on by my fingertips.

Lately I've switched back and forth between wanting to just give up on everything and becoming a royal bitch hell bent on people listening or else lol

Dd is texting me from school. She isn't feeling well,is dizzy. Her teacher won't let her get a drink. So I told her she's to keep her water bottle on her at all times and I'll deal with the school if they have an issue with that. Also told her she's not going to school tomorrow.

I have been reading your posts for many years and remember what you have told us you have gone through with your kid's medical issues. You are absolutely strong and an amazing advocate for them. I wish I could sit and have a cup of tea with you and let you know how amazing you are. Raising four healthy children without the added extra stuff you have been through is challenging. Give yourself some grace.

Can you call the school and ask them to allow DD to drink and let them know she is having issues?

It's hard enough to deal with child illness issues as a new parent and then be slammed with that which shall not be named here.

I hope that I have done right by dd but even she has said she wished we had started growth horomone therapy sooner.

Her teacher emailed me about a missing assignment so that gave me an opportunity to bring up other things.

I'm keeping her from school tomorrow and we wil go do the lab tests.

She didn't eat much at dinner again. I'm going to have to get her a meal replacement shake.