Update on Emilee

[jenilynn3441]

Seen another doctor a couple days ago. Her vomiting is from her gastroparesis. So we are trying to get it under control. He said to try her on the Reglan 3xs a day for 8 weeks to see if that helps with processing of food. If not he explained to her she needed to try her best to eat small very small meals a day at least 3. I explained to him, Emmi can eat one meal & not get hungry for a day i have seen as long as a day and a half before she could eat again.. And that was a small meal. So after 8 weeks if no better he would have to do a feeding tube.
From the start Emilee has had so many emotions from being diagnosed. From anger to being bullied at school bc of all the weight loss & sudden running to the restroom episodes. And just not discussing anything with anyone.
Since going to the doctor the other day she has talked more about it and tried to talk to her teachers about it so they understand what is going on. Even the teachers were pointing out the frequent restroom trips & all the weight loss. Then we have the kids & yes adults that tell her she looks great since she has lost weight to keep up the good work. And this really upsets me bc i am explaining to her the way she is losing weight isn't good. It isn't ok & it certainly isn't good for her body. And an adult commented well as long as she keeps up the losing there isn't a problem. And continued to tell Emmi to do what she has been doing to lose it. UGH!! At that point i told her not to speak to my child again. Maybe harsh but Emmi needs not to be encouraged & to understand losing this way isn't a good way.
So meds changed again. Trying to get the vomiting 100% under control or to the extent that she is keeping food down. And while typing this she takes many pills a day. So with the stomach not emptying right all her pills are just sitting in her stomach right??? Any suggestions?? I called the doctor & told them my concern i am now awaiting for them to call back.:ybatty:

 

[ChampsMom]

Wow... so sorry for everything you and your daugther are going through..

I don't have any experience with gatroparesis - are there specific foods she does better with than others or is it anything eats comes back up? As a temporary fix can she get any of her meds in liquid form or via injections?

Wow... It's amazing how ignorant people can be when it comes to someone being sick... I had a neighbor coming running over to tell me one day that she had also been diagnosed with Crohn's, but she wasn't as lucky as my son because she hadn't lost any weight. :yfaint: Really?!

:ghug: Hope you find a fix soon!!

 

[Dexky]

There's another member (Niks) whose daughter has been having similar problems for at least 6 months that I know about. Hopefully, she'll see this and be able to add some insight. I know she's having a time getting her girl any kind of treatment that helps!

 

[Farmwife]

Oh that just boils my water when I hear people say that about weight.
Especial to your young beautiful girl.
My Grace has always been a bit chunky and I remember a nurse (yes a nurse of all people)
tell me that my then 3 yr old could stand to lose a pound or two.
:ymad::ymad:
I wanted to grab her colon and twisted and say, HOW WOULD YOU LIKE TO LOSE WEIGHT.....FELLING THIS WAY!!! :ymad::ymad:
Sorry, touched a nerve there.:smile:

My Grace also has problems along the same lines.
Even on full EEN she still has problems with delayed emptying.
I hope things get figured out soon. HUGS

 

[jenilynn3441]

Anything and everything that she eats usually comes up. For breakfast this a.m. she ate half of a muffin. That was all she ate all day. :/
I did get the call from the nurse and she said if the dr thought it was a problem with her taking pill form meds he would have said something. I just don't know.. Feeling very overwhelmed

 

[ChampsMom]

I can appreciate the nurse believes if the doctor thought... but can she confirm she has talked to the doctor or can you speak with the GI and get that confirmation directly to help ease your mind?

Some drugs do start absorbing immediately - maybe try searching to see absorption rate of her meds?

(((hugs))) to you both!

 

[Niks]

Hi Jenilynn

So sorry to hear your daughter is going through this. We have been told that my daughter has poor stomach emptying and bowel dysmotility.

She also vomits every day, since October, she has had a couple of brief respites one on Prednisolone in October/November and at the other after a 2 week hospital stay and getting her completely cleared out. Extremely backed up as bowels not moving!

She has been put on Metoclopramide (Reglan) since March time. It hasn't seemed to make much difference to her, but hopefully it will start to have some effect. Does she vomit straight away after swallowing them? What other meds does she take?

I really hope she gets some respite from her symptoms, it is extremely hard to watch your daughter go through this every day.

Apart from tube feeding have they suggested anything else? We are struggling too with no answers or solutions!! (((hugs)))

 

[jenilynn3441]

Niks the tube is the only thing he said if the Reglan doesn't work. Emmi has no real problem with being backed up in her bowels, she usually keeps diarrhea. I did take her to her NEW family dr yesterday to get some blood work set up to make sure she isn't diabetic & check vitamin, anemia, liver, kidney & etc. Her G.I. doc wants to assure she isn't diabetic.
Emmi usually vomits anywhere from 5 to 20 minutes in the mornings after meds & small meal. Mornings are a fact that she is going to get sick has been every morning since October. And she in fact lost 9 lbs since last month. Checked yesterday at the dr. office. Every scale is so different i go by the ones at the doc she sees here at the clinic that is the one we have used for a while now..
Her meds as of now are:
Asacol HD 800 mg 2 @ 3x day
Hyoscyamine Sulfate 0.125 mg 1 @ 4 x day (resent change in script)
Metoclopramide HCL 5mg 1 @ 3x a day
Ranitidine 300 mg 1 tab @ 2x a day(waiting on new script this doesn't touch her heartburn)
Sertraline 100mg 1 in the a.m.
Montelukast Sodium 10 mg @ bed
Pediasure w/Fiber 1 can 3xday

 

[CarolinAlaska]

Hi Jenilynn,

When will you get bloodwork back? I can see now why you say she is taking pills all day! Sheesh! Has she been on any of these since before October? Is she keeping the Pediasure down? I'm just flabbergasted at how so many kids here get drug along before they find the problem and right solution. How can a child have dysmotility and diarrhea? I'd never want to be a GI! It must be a terrible puzzling specialty.

Hang in there! I know they'll find something that works eventually!

 

[Niks]

Apparently diabetes is high risk with dysmotility and gastroparesis! Jaime had very low blood sugars when she was last admitted for 2 weeks, but fine since.

It is horrible when they are vomiting constantly!! I think if meds vomited after only 5 minutes, that could be a problem! They should get absorbed pretty quickly, but would definitely check with doctors.

Does her blood work come back normal??

Really hope new meds work for her. Xx. :ghug:

 

[jenilynn3441]

Her family doctor wants her to fast for 12 hours so starting this evening. Then i will take her to have blood work in the a.m.
She has only been on the Asacol HD 800 mg 2 @ 3x day
Hyoscyamine Sulfate 0.125 mg 1 @ 4 x day
Metoclopramide HCL 5mg 1 @ 3x a day
Ranitidine 300 mg 1 tab @ 2x a day
Since early March. The Ranitidine was an increased dosage she was taking 150mg 2xday before we found any of this out. Due to acid reflux is what her old peds doc said.
The pediasure she does keep it down but if it is first thing in the a.m. and drinks it she can't keep it down. Not sure why she vomits in the mornings.
Niks she told the doc last week she gets dizzy alot. I think it is from low blood sugar. I am not sure how low sugars do anyone. My bf is diabetic and his gets high and he gets dizzy & all. So idk..
Yes Carol she takes meds all day long. It's crazy..

 

[Dexky]

She has only been on the Asacol HD 800 mg 2 @ 3x day

She takes 4800 mg/day Asacol?? That's a bunch!!

 

[jenilynn3441]

She takes 4800 mg/day Asacol?? That's a bunch!!

yes she has been on that since the first part of April.

 

[Maree.]

One thing to try with the dizzyness, also if headaches is an issue is some sort of oral rehydration mix (this was a suggestion I got from Catherine originally - from her GI I think), if that helps it's a sign that it might be a dehydration issue.

Liam seems to have a constant battle with dehydration despite drinks loads of fluids. I keep a pediatric rehydration fluid on hand for times when he uses lots of enery or shows signs of dizzyness and I've also taken to giving him mineral waters, as the drinking water here is desalinated and my understanding is that some people have difficulty absorbing water that's been too stripped of minerals.

 

[Niks]

How's your girl Jen? Hope all is ok xx

 

[jenilynn3441]

Thanks Niks!! Emilee is 16 today Hard to believe my baby is growing up so fast. She is doing about the same. She is eating less so she isn't vomiting, but only once a day still staying full. Also is continuing to have diarrhea. This coming Friday she will be having Endoscope with Botox injection. On Memorial day she fractured her ankle so she isn't really in a good mood because so far not able to go walking & swimming.

 

[Catherine]

:bdayparty::bdayparty::bdayparty:

 

[Niks]

Aw :birthday2: Happy Birthday Emilee!!

Good luck with procedures. Hope her ankle mends soon xx

 

[Farmwife]

Happy birthday!

 

[upsetmom]

Happy Birthday Emilee!!!...:bdayparty:

 

[lblair]

Hi

So sorry that Emliee is feeling this way and no one should have to go through that at school.

This sounds likes something that I just got done with mine was from dehydration and Imuran I went toxic I was taking 200mg a day and was on it for only a month. This is a new Dx for me along with the Gluten allergic they both are new for me. So I'm learning with everyone else. At times its overwhelming and stress makes me have flare up. I see the Dr tomorrow I hope that he has a new game plan.

I was feeling so good for 3 weeks!!!!!! Happy Birthday Emilee!!!!!

 

[ChampsMom]

Happy Birthday Emilee!!

 

[Jmrogers4]

Happy Birthday Emilee!

 

[DustyKat]

EEEEEEK! Happy belated 16th birthday to your girl!

I hope her day was a fab one, bless her. :heart:

Dusty. xxx

 

[Dexky]

Are they only doing endo? What's the botox for??

 

[jenilynn3441]

He was doing the endo & botox injection into her pyloric muscle going from her stomach to her small bowel. But of course our insurance denied it. So first thing when i wake up in the morning i will be getting to the bottom of things.
Does anyone else or their child have problems with being bloated sometimes after meals? With gastroparesis? And also paleness... Emilee is so pale no color at all to her anymore. And btw all the meds for the diarrhea she is on is not working at all!!!! Between vomiting & diarrhea idk which is worse. :/

 

[DustyKat]

Oh no, poor Emilee...:ghug:

:eek2: I hope you are able to sort things out with the insurance company. Good luck!

When did she last have bloods drawn and do you have the results?

My immediate thoughts on paleness would have to be what is her haemoglobin doing and what are her Iron Studies?

For my daughter her paleness was due to iron deficiency but for my son his Hb and iron studies were normal when he was literally as white as a sheet. He was very unwell at the time though and had complications from his CD so I think it was just another way he presented at being so sick.

Thinking of you, :heart:
Dusty. xxx

 

[Dexky]

It's not as bad as it once was, but my son used to have that bloated look all the time. His was due in part to other issues but still it would be worse after eating.

 

[jenilynn3441]

Her last labs was about 3 weeks ago everything was perfect. No low iron or anything like that. I am just puzzled what would cause it.. She is bloated about all day this is a new thing just wasn't sure if it was from gp or cd..

 

[EthanClark]

My 4 yr old son and I both have Crohn's disease. I get bloated almost everyday to the point that I look 5 months pregnant and when my son is flaring he turns very pale as well, even if he is not anemic at the time. I do believe alot of children with CD get very pale as well. Good Luck :ghug: