Prayers and good thoughts for my daughter

[Soror]

I posted briefly how she's been having stomach pain.

It is constant 24/7 pain. At this point she can't remember not being in pain but it is sometimes not as bad, it is always at least a 4. She went to the dr. here who couldn't figure it out. She has an appt with the ped. gi dr. January 10th(the soonest we could get her in). We finally took her to the Children's hospital Sunday about 5 days in a row with episodes of her curled in a ball crying the pain was so bad. They did every test they could do there and said nothing is life threatening and they have no answers. The dr.'s agreed with us that Celiac still seems most likely(based on timing and history long story short), although the initial test showed 1 point under negative, the tests are not infallible and yield false negatives, besides the fact that although she now eats gluten it is not a ton. I can't get her to eat much period these days. If I take her off now I have no hope of getting her a def. answer although it is exceedingly hard not to try it considering it all. They gave us some meds to help with pain, none have worked so far. And to top it off her TSH came back over range and T4 at the bottom of the range, I have a follow-up here to test for antibodies to rule out Hashimoto's (I have Hashi's which is why the tested but they didn't test antibodies which determine Hashi's UGH). 

She was crying last night, why can't I be normal, it is crushing my soul to just hold her through the pain. She is 10 and has been so strong but she's just done with it after so many hrs in the hospital and needles and tests without answers and nothing helping. 

And I think this goes without saying we need kindness and prayers, if for some reason you have criticism keep it to yourself. We are doing the best we can here.

[RootAnn]

Praying for her & you

[ktgrok]

Oh the poor thing! 

I'd be calling daily to ask about cancellations at the pediatric GI office. Seriously, call daily. People do cancel. 

And you probably know this, but celiac can go hand in hand with hashimotos. 

[alisoncooks]

Poor thing, how miserable. 😞

Yes to calling in for cancellations - great idea. 

[J-rap]

Oh, I'm so sorry.  It could be the flukiest thing.  I remember having intense stomach pains/cramping for several days (I don't know how long it's been going on with your dd) and, was hospitalized it was so bad.  It was like my stomach had gone into non-stop spasms.  It turned out I had developed a reaction to apple juice!  I had been drinking a glass or two every day for the past week.  (Also, this is something I figured out myself;  the doctors couldn't find anything.)

One of my dd's had severe stomach pains when she was about your dd's age (but hers weren't 24 hours/day;  they would come and go throughout the day for maybe a month, stop altogether for a month or so, and then start up again).  They eventually morphed into migraine headaches! 

I hope they figure it out soon with your dd.

[TheReader]

Oh, (((Soror))), I am so sorry. Prayers for your daughter, and for you, and for the doctors as they seek to find the answers. 

 

[sbgrace]

Praying for your daughter to get relief and movement toward answers. I'm sorry the children's hospital didn't narrow things at all. 

[wintermom]

So sorry she is going through all this. My ds 17 had several years of stomach pain. After ruling out all the stomach and digestive system related possibilities, he ended up doing really well with anxiety/stress treatment. The stomach and brain are very closely linked. 

We just saw a pediatric concussion specialist yesterday, and it was the most informative appointment I've ever sat through. Part of our brain called the amygdala can become stimulated non-stop, which causes a constant state of stress on the body. This constant stress can cycle downward into feeling pain (in stomach, heart), anxiety, exhaustion, lack of sleep, muscle tension, hyper-sensitivity to noise and light, etc.

I don't want to interfere with any diagnosis you are looking at now, I just want to mention this in case you can't find out any other answers, and possibly this may help. We're using a multi-method approach of pain relief (not otc), muscle relaxant, counselling, physiotherapy and massage, diet (non-restrictive), water, blue-light filter, reduced computer time (especially games) and exercise.

All the best. It's a road that can be very frustrating. Big hugs to the whole family.

[Soror]

 

5 minutes ago, wintermom said:

So sorry she is going through all this. My ds 17 had several years of stomach pain. After ruling out all the stomach and digestive system related possibilities, he ended up doing really well with anxiety/stress treatment. The stomach and brain are very closely linked. 

We just saw a pediatric concussion specialist yesterday, and it was the most informative appointment I've ever sat through. Part of our brain called the amygdala can become stimulated non-stop, which causes a constant state of stress on the body. This constant stress can cycle downward into feeling pain (in stomach, heart), anxiety, exhaustion, lack of sleep, muscle tension, hyper-sensitivity to noise and light, etc.

I don't want to interfere with any diagnosis you are looking at now, I just want to mention this in case you can't find out any other answers, and possibly this may help. We're using a multi-method approach of pain relief (not otc), muscle relaxant, counselling, physiotherapy and massage, diet (non-restrictive), water, blue-light filter, reduced computer time (especially games) and exercise.

All the best. It's a road that can be very frustrating. Big hugs to the whole family.

Stress has been considered but we've not had anything going on in this timeline. She used to love exercise but doesn't even have the energy for TKD, which she loves besides the fact that lots of things cause her pain. When she goes now she has to scale back what she does. We're waiting to see what ped GI says, and won't just be taking this is some unexplained pain for an answer without exploring all options.

13 minutes ago, J-rap said:

Oh, I'm so sorry.  It could be the flukiest thing.  I remember having intense stomach pains/cramping for several days (I don't know how long it's been going on with your dd) and, was hospitalized it was so bad.  It was like my stomach had gone into non-stop spasms.  It turned out I had developed a reaction to apple juice!  I had been drinking a glass or two every day for the past week.  (Also, this is something I figured out myself;  the doctors couldn't find anything.)

One of my dd's had severe stomach pains when she was about your dd's age (but hers weren't 24 hours/day;  they would come and go throughout the day for maybe a month, stop altogether for a month or so, and then start up again).  They eventually morphed into migraine headaches! 

I hope they figure it out soon with your dd.

It has been a couple of months now. At first I didn't realize it was all the time and then the clinic had changes so it took a bit to get in It just keeps getting worse. They did mention the possibility that it could be migraines although with it being constant so long it doesn't seem likely. The only thing that has been added to the diet that I can think of is gluten.

17 minutes ago, Ktgrok said:

Oh the poor thing! 

I'd be calling daily to ask about cancellations at the pediatric GI office. Seriously, call daily. People do cancel. 

And you probably know this, but celiac can go hand in hand with hashimotos. 

I meant to call yesterday but we're so sleep deprived from the Children's hospital then we had appts. the last 2 days for other kids. I'm calling today.  And yep, I do know they go hand in hand 😞 I so don't want this for her.

[ScoutTN]

Oh Soror, I am so sorry that she is suffering so much pain! Praying now for relief and an accurate diagnosis. 

Can acupuncture or other alternative type doc help with pain relief in the short term?

[mmasc]

I am so sorry for your daughter. Prayer just lifted up for her for answers and relief. 

[wintermom]

6 minutes ago, soror said:

 

Stress has been considered but we've not had anything going on in this timeline. She used to love exercise but doesn't even have the energy for TKD, which she loves besides the fact that lots of things cause her pain. When she goes now she has to scale back what she does. We're waiting to see what ped GI says, and won't just be taking this is some unexplained pain for an answer without exploring all options.

Yes, we couldn't pinpoint a "thing" that would cause stress, either, but it was the thought pattern that exhausted ds. Physical fatigue is normal because the body is constantly tired from being in a state of readiness for something dangerous. The muscles and brain never get a chance to relax.

Hope you find answers for your dd (and possibly your own sleep and health issues). This information from the concussion dr was bang on for myself. It finally made sense all the symptoms I was experiencing, but unable to find a physical reason.

Edited December 18, 2019 by wintermom

[Lecka]

Your poor daughter, I am so sorry.  I hope that she can feel better soon and you can find out an answer.  

[Kassia]

I'm so sorry about your daughter.  Seeing your child in pain and not being able to help is the worst.  I hope they figure this out soon and she feels better.  Sending lots of positive thoughts and good wishes.

 

[mumto2]

Hugs and prayers........

[ktgrok]

can you ask the pediatric GI clinic what tests they will want run, and have your regular pediatrician order those so you have results by the time you go in? I know our GI doc wanted a few things that regular pediatrician didn't know to ask for, some specific stool tests (calprotectin or something) and a few others. 

[Soror]

2 minutes ago, Æthelthryth the Texan said:

Fwiw OP,  mine ended up most likely being allergy related as well, but not food. We tried every diet known to man and couldn’t find it, but the best GI I found said it could be something minuscule and present only in something like toothpaste or a pill coating etc. and that we may never figure it out. But at least he wasn’t telling me it was something it wasn’t. I had always tracked it as worsening with my seasonal allergies but the original GIs back in the 90’s told me they were completely unrelated. 🙄 I am now loaded up on antihistamines quite frequently and it’s fixed things. Anyway, I hope you get answers because often I think it’s going without answers that is the worst of it. Once you know it’s easier to tackle. 

Yes, they said well, it could be just unexplained pain, which is not going to fly.

 

5 minutes ago, Ktgrok said:

can you ask the pediatric GI clinic what tests they will want run, and have your regular pediatrician order those so you have results by the time you go in? I know our GI doc wanted a few things that regular pediatrician didn't know to ask for, some specific stool tests (calprotectin or something) and a few others. 

At Children's they said they ran everything there that they could and it would put her ahead when it comes to her appointment. I called and got her name on the cancellation list.

[ktgrok]

And a full autoimmune panel. 

[lauraw4321]

I’d do some mindfulness breathing meditation with her. Not because I think it’s all in her head, but because it’s been shown to be effective in pain relief. It should also help lower her stress hormones which I’m sure are really high. Prayers for her. 

[MercyA]

Oh, the poor babe. My DD is 11 so I can imagine what you must be going through as a momma. I will pray! Please keep us updated.

[catz]

I do think stress and anxiety and depression can spiral with chronic pain and inability to do normal things.  I had stomach issues years ago and at the end of the day I had IBS and some food sensitivities.  But working on mental health helped piece things out.   So I wouldn’t hesitate to pursue both sides of that.  My own daughter had a round of stomach issues and anxiety at that age.   

If you haven’t tried journaling food, activity, and pain that can help.  I will say I can’t do much processed sugar especially corn syrup and I really need to balance fat, protein, carbs.   

Edited December 18, 2019 by FuzzyCatz

[Familia]

May your dear daughter be well soon!

[jen3kids]

My dd has dealt with undiagnosed, or misdiagnosed, stomach pain for years - I think we have started year #5 or#6 😞 

One thing that has helped (but has not healed her)  is to follow the AutoImmune Protocol - eliminate all dairy, grains, sugars.  Try it for awhile and see if it helps.  If it does, follow the reintroduction phases.   We made the mistake of following the elimination phase for too long, but dd has now reintroduced a lot of foods and it has made her life better, but not her GI issues (but the reintroductions haven't made it worse either, which is a win in our book)

Was this preceded by a stomach bug or antibiotics?  Her gut bacteria may be out of whack.  

And yes, to the mindfulness activities - I wish my dd would use them more, but she refuses.   But, she did ask (finally) to see a psychologist to deal with the emotional aspect of all of this.  It has been helpful, but difficult for her.   The emotional toll of a chronic illness is heavy.

I also recommend a colonoscopy and an endoscopy - just to have a visual of things.   Possibly even the little camera pill so the dr can get a look at the GI areas neither scope can reach.

I know the feeling of hopelessness you are having; I have cried myself to sleep many nights, wanting to help her get better.

Hugs to you and your daughter - I hope you figure it out and she can get relief.  

 

Edited December 18, 2019 by jen3kids

[cintinative]

1 hour ago, Ktgrok said:

Oh the poor thing! 

I'd be calling daily to ask about cancellations at the pediatric GI office. Seriously, call daily. People do cancel. 

And you probably know this, but celiac can go hand in hand with hashimotos. 

 

This. Let them know she is in daily pain and struggling to sleep also.  

ETA: Do you have a pediatrician that is aware of this? Sometimes if the pediatrician calls they can get things moved along.  

My son has Celiac so I am very sympathetic to what you are describing. I'm so sorry. Hang in there.

Edited December 18, 2019 by cintinative

[cintinative]

12 minutes ago, jen3kids said:

 

One thing that has helped (but has not healed her)  is to follow the AutoImmune Protocol - eliminate all dairy, grains, sugars.  Try it for awhile and see if it helps.  If it does, follow the reintroduction phases.  

 

 

If it is Celiac, she doesn't want to go off grains before getting an endoscopy.  However, going off dairy is not a bad plan because (even if it is Celiac) dairy sensitivity can make things worse. 

 

[happi duck]

Many (hugs)

[Pen]

Prayers and hugs.

 

[jen3kids]

27 minutes ago, cintinative said:

 

If it is Celiac, she doesn't want to go off grains before getting an endoscopy.  However, going off dairy is not a bad plan because (even if it is Celiac) dairy sensitivity can make things worse. 

 

 

That is true, but you also don't want the dd to be in agony for another 2-3 weeks.  Personally, I would take the relief over a definite diagnosis and then do a reintroduction to see if the symptoms returned.  

Honestly, there is no right answer - the OP should do whatever she thinks is best for her dd.  She'll look back and have a million 'what ifs' regardless of her decision.

[Caraway]

Have you done an elimination diet with her?

I had severe stomach pain as a teen.  The doctors decided it was all in my head and there was nothing that they could do. 
 

In college I figured out, on my own, that I was Celiac.  No more stomach pains. 
 

The whole thing still makes me mad. 

[Pen]

There are problems very much like celiac, but a little different. Where the tests for celiac look okay, but the person is reacting to another aspect of the grain. Agglutin in rather than gluten for example

[Jean in Newcastle]

If celiac makes the most sense then they should skip redoing the ttg tests and go straight for an endoscopy. It really isn’t a bad test - they are put under for under a half hour and an endoscopy is the gold standard for diagnosis of celiac disease. 

[Soror]

16 minutes ago, Jean in Newcastle said:

If celiac makes the most sense then they should skip redoing the ttg tests and go straight for an endoscopy. It really isn’t a bad test - they are put under for under a half hour and an endoscopy is the gold standard for diagnosis of celiac disease. 

We're hoping the GI will go ahead and do the endoscopy, we will be requesting/begging for it. Seems that nothing should be left on the table until we get some answers.

28 minutes ago, jen3kids said:

 

That is true, but you also don't want the dd to be in agony for another 2-3 weeks.  Personally, I would take the relief over a definite diagnosis and then do a reintroduction to see if the symptoms returned.  

Honestly, there is no right answer - the OP should do whatever she thinks is best for her dd.  She'll look back and have a million 'what ifs' regardless of her decision.

No right answers or good answers. I'm so sorry about your daughter, I can't imagine years of it, to suffer or as a parent 😞

1 hour ago, cintinative said:

 

This. Let them know she is in daily pain and struggling to sleep also.  

ETA: Do you have a pediatrician that is aware of this? Sometimes if the pediatrician calls they can get things moved along.  

My son has Celiac so I am very sympathetic to what you are describing. I'm so sorry. Hang in there.

We see a FP dr, I will talk to her to see but I don't know that it will help, I was told we were actually lucky to get in as soon as we did. 

1 hour ago, FuzzyCatz said:

I do think stress and anxiety and depression can spiral with chronic pain and inability to do normal things.  I had stomach issues years ago and at the end of the day I had IBS and some food sensitivities.  But working on mental health helped piece things out.   So I wouldn’t hesitate to pursue both sides of that.  My own daughter had a round of stomach issues and anxiety at that age.   

If you haven’t tried journaling food, activity, and pain that can help.  I will say I can’t do much processed sugar especially corn syrup and I really need to balance fat, protein, carbs.   

We have started journaling ahead of the appointment but haven't added in activity. So far just food and BM but I just told her we need her to track her pain level on there too. WE are looking first for physical causes but will be looking at the emotional side too if that does not yield answers.

1 hour ago, Ktgrok said:

And a full autoimmune panel. 

Yes, I'd  like to make sure we don't miss anything.

_____________________

The preference is to keep the diet as is as we'd love an actual diagnosis for her if she really has Celiac and needs to be GF for life. We're hoping for an actual diagnosis from GI, Celiac or something else. If he doesn't have any answers we plan to trial GF and see if that has an effect. I'd rather not restrict her diet anymore than we have to, that is so hard I know. I did AIP as I have Hashi's, it didn't help me.

Edited December 18, 2019 by soror

[ktgrok]

Did the hospital do stool tests as well?

[ktgrok]

You could also ask the Ped's GI if there is anyway to get her an endoscopy faster - specifically if being admitted to the hospital would speed things up, or if there is a certain hospital they work with etc. In case things get worse and you head to the ER again. You may need to ask the nurse rather than the scheduler who answers - just bluntly ask if you should push for admission if she's in daily pain to the point she's in tears. 

Edited December 18, 2019 by Ktgrok

[Kareni]

Sending positive thoughts that you will get some answers and that your daughter will be pain free.

Regards,

Kareni

[itsheresomewhere]

Has anyone ever done an ultrasound of her uterus and ovaries? In some people,  cysts and other issues related to it can mimic GI symptoms very well.  

[hornblower]

3 hours ago, J-rap said:

 

One of my dd's had severe stomach pains when she was about your dd's age (but hers weren't 24 hours/day;  they would come and go throughout the day for maybe a month, stop altogether for a month or so, and then start up again).  They eventually morphed into migraine headaches! 

I hope they figure it out soon with your dd.

 

I was going to mention the same thing - abdominal migraines. I know several female friends and myself who were prone to this & yes, it tends to present as headache migraines in adulthood. 

Is there diarrhea or constipation or just pain? 

Poor girl and poor you. It's so very hard when your child is in pain. ((hugs))

[Soror]

9 minutes ago, hornblower said:

 

I was going to mention the same thing - abdominal migraines. I know several female friends and myself who were prone to this & yes, it tends to present as headache migraines in adulthood. 

Is there diarrhea or constipation or just pain? 

Poor girl and poor you. It's so very hard when your child is in pain. ((hugs))

mostly just pain some constipation and diarrhea at times

 

11 minutes ago, itsheresomewhere said:

Has anyone ever done an ultrasound of her uterus and ovaries? In some people,  cysts and other issues related to it can mimic GI symptoms very well.  

50 minutes ago, Ktgrok said:

You could also ask the Ped's GI if there is anyway to get her an endoscopy faster - specifically if being admitted to the hospital would speed things up, or if there is a certain hospital they work with etc. In case things get worse and you head to the ER again. You may need to ask the nurse rather than the scheduler who answers - just bluntly ask if you should push for admission if she's in daily pain to the point she's in tears. 

She had an xray and ultrasound of her abdomen, everything was entirely normal.

I have no clue how you get admitted. Once they ruled out anything life threatening, they said they had no more tests to do there and just need to followup with GI, this is a very highly rated Children's hospital. 

[mominco]

soror,did not read the whole thread as I am headed out but did they rule out Crohns?(((hugs))) praying

[ktgrok]

3 hours ago, itsheresomewhere said:

Has anyone ever done an ultrasound of her uterus and ovaries? In some people,  cysts and other issues related to it can mimic GI symptoms very well.  

I'd check the report and make sure they visualized her ovaries on the ultrasound - pelvis and abdomen are two different areas and they may not have. Endometriosis and ovarian cysts can cause awful pain, although she's young for that. 

[May]

Lifting your sweet daughter in prayer🙏🏻

[itsheresomewhere]

1 hour ago, Ktgrok said:

I'd check the report and make sure they visualized her ovaries on the ultrasound - pelvis and abdomen are two different areas and they may not have. Endometriosis and ovarian cysts can cause awful pain, although she's young for that. 

They are seeing it a lot more in the younger girls now.  

[jjae3578]

I am so sorry for your daughter, and for you as well!  I will also be sending her healing thoughts.

Anecdotal story coming up, feel free to skip!  Reading through this thread jogged a memory from when a cousin of mine was a young teen.  She was suffering similarly from constant abdominal pain.  They finally admitted her to a respected children's hospital for a week, tested for everything they knew to test for, which of course came back fully negative.  Her parents brought her home when the docs recommended a psych consult for psychosomatic pain, since it must all be imaginary and in her head.  They tried some diet changes, and helped her develop other coping strategies, and it did help but it never fully went away.

Years later, her first child was born with cystic fibrosis.  There were no known cases on either side of the parents families, so this came as something of a shock to them.  During one of babies first checkups, the CF specialist asked both parents if they had ever had certain symptoms growing up, and severe abdominal pain was one of them.  Recent research has shown that CF carriers are not as asymptomatic as they once thought (https://www.sciencedaily.com/releases/2019/10/191017135743.htm)  He was certain that her stomach issues growing up were related to that, which is why the more traditional tests came back within normal range.  Vindication for her years after the fact that it wasn't in her head after all, at least.

If you don't get the answers you are expecting from the GI, I would push to find a doctor who will think outside the box a little.  The stomach pain might be the result, not the cause, if you know what I mean?  Again, best wishes for you both.

 

[Soror]

thank you for the thoughts, hugs, prayers, etc.

Our next appt is next Friday (locally), that won't give us big answers but hopefully we can determine if she has Hashi's then. I don't think that explains everything but we need to know or rule it out. 

Fingers crossed we can get in on a cancellation sooner to GI.

One day at a time

[ktgrok]

I'm sure this seems too obvious, but have you tried giving her gas X or some other form of simethcone to help with the pain? Seems the worst pain is gas pain, so something that breaks up the gas bubbles might help?

Also, lactaid if she is drinking/eating any dairy - things like celiac, etc damage the intestine to make them lactose intolerant. In fact digestive enzymes overall may help, as with those kinds of gut diseases all forms of digestive enzymes can be effected. My son's biopsy showed he could not digest fat or protein or fruit starch...the only thing he COULD digest properly was lactose actually, which was funny. 

[Soror]

7 minutes ago, Ktgrok said:

I'm sure this seems too obvious, but have you tried giving her gas X or some other form of simethcone to help with the pain? Seems the worst pain is gas pain, so something that breaks up the gas bubbles might help?

Also, lactaid if she is drinking/eating any dairy - things like celiac, etc damage the intestine to make them lactose intolerant. In fact digestive enzymes overall may help, as with those kinds of gut diseases all forms of digestive enzymes can be effected. My son's biopsy showed he could not digest fat or protein or fruit starch...the only thing he COULD digest properly was lactose actually, which was funny. 

We tried some different things for gas relief and they had a different cocktail at the hospital but nothing has touched it so far. I've thought about cutting out the milk to see if that has an affect. We already had her cut back but she still has some (although not every day) she didn't have any milk products yesterday and was at a 7/10 half the day. I told dh we are just utterly flying blind here and she is so tired of trying things only to have no relief.

Edited December 19, 2019 by soror

[Soror]

And dealing with all of this and PMS, I'm trying not to lose my sh*t.

 She is worried this dr. won't have answers either. So are we.

I'm trying to juggle taking care of her, the house, and not neglect the other children. And the million other things you know we're supposed to do.

I felt like we had it under control but after the fruitless trip to the hospital we are all feeling rather down 😞

 

[TravelingChris]

On 12/18/2019 at 8:01 AM, Arctic Mama said:

My food allergy induced stomach pain was SO BAD.  I have nothing but hugs and sympathy for her, poor thing. Wishing to be normal is totally common too, it absolutely stinks to have dietary intolerances and allergies 😞

I think that is what happened with my husband as an adult with peanuts. 

 

 

[BusyMom5]

I do think calling the GI office to ask for cancellations is a good idea!  At this point Jan 10th seems like such a long time away, even a few days earlier would be great!  

Another thought is to take her to the ER at Childrens in the big city.  We had a medical thing years ago and dealt with the local hospital before being referred to the bigger one a month later.  Once we got into the specialist, he said if we had showed up at his ER, we would have been treated and got answers immediately.   Find out where the GI practices out of and try another ER trip.

[wintermom]

40 minutes ago, soror said:

And dealing with all of this and PMS, I'm trying not to lose my sh*t.

 She is worried this dr. won't have answers either. So are we.

I'm trying to juggle taking care of her, the house, and not neglect the other children. And the million other things you know we're supposed to do.

I felt like we had it under control but after the fruitless trip to the hospital we are all feeling rather down 😞

 

Hang in there. All of the "ruling out" various things is part of the process doctors have to go through. They may have a list of 5 of the most common/obvious things, and they need to rule these out before looking into other things. It all takes time. It's super frustrating, for sure, but it's the reality of medicine. It's very complex. 

No matter what the causes of your dd's pain may be, there are still a lot of helpful things that you and she can do together to manage the stress, pain and frustration. Things like breathing/meditation, gentle physical activity, relaxing music, time in nature, and time with friends and having fun. Do some reflection on what factors seem to cause stress and anxiety in your life and in hers, and try to come up with some ways to reduce and counter-balance the stress with positive things.

All the best!