Increasingly worried about DD

[sunnylady303]

DD has been having a little darkish blood in her stools off and on for two weeks or so. She is in increasing (but intermittent) abdominal pain. Her appetite is off. It's like it comes in waves - completely normal for hours then in pain and feeling awful.

 

Her doctor had us get a stool sample which showed no bacteria or parasites so they are trying to get her in to a peds GI doc. It's slow going though. Earlier today I found her on the bathroom floor curled up crying from pain with diarrhea with just a little dark brown blood in the toilet. I snuggled her and called the doctor. By the time they got back to me DD seems fine - totally cheerful and active. But they said to take her to the ER or we could wait a bit to see if they can get the GI doc.

 

What are they going to do at the ER if I show up with this chipper kid who is feeling fine? These in pain waves just seem to come two or three times a day but they are definitely getting worse.

 

I am worried and don't know what to do.

[NorthwestMom]

I'm not sure, but hugs to you both!

 

I think maybe I would take her in as soon as she is curled up in pain and see if you can jumpstart the referral process.

 

:grouphug::grouphug:

[Dana]

:grouphug:

 

No advice... other than getting in to the peds GI as soon as you can. Maybe your doc can give more advice and a quicker appointment?

 

:grouphug:

[Dobela]

I would ask for them to begin with an abdominal x-ray if they don't just based on your description of the blood and pain. My son was having similar episodes when he was younger and was so constipated that they could see the backed-up stool clearly on the initial x-ray

[Alice]

Sometimes being in the ER is a way to get to see a specialist faster. They might consult in the ER or sometimes the ER will admit for further testing (can be a way to expedite testing). Or sometimes the ER will consult and a specialist will say they will see in the office in a day or so, which might be faster than calling to get an appointment on your own or through your pediatrician. It’s more true if the hospital is one where the GI doctor sees patients.

 

Hope she gets in somewhere quickly and you get some answers.

[Tiramisu]

Sometimes being in the ER is a way to get to see a specialist faster. They might consult in the ER or sometimes the ER will admit for further testing (can be a way to expedite testing). Or sometimes the ER will consult and a specialist will say they will see in the office in a day or so, which might be faster than calling to get an appointment on your own or through your pediatrician. It’s more true if the hospital is one where the GI doctor sees patients.

 

Hope she gets in somewhere quickly and you get some answers.

 

:iagree: If you go to the ER, sometimes they will consult with a specialist and the specialist will see you the next day when otherwise you'd have to wait weeks or months.

 

Are you anywhere near a children's hospital? If you are, I would go right in to their ER today.

 

I hope you get some answers soon. :grouphug:

[Susan in TN]

Crohn's? If she is diagnosed with an intestinal issue like IBS or Crohn's disease, please pick up a copy of "Breaking the Vicious Cycle" by Elaine Gottschall.

[elfgivas]

Crohn's? If she is diagnosed with an intestinal issue like IBS or Crohn's disease, please pick up a copy of "Breaking the Vicious Cycle" by Elaine Gottschall.

 

or ulcerative colitis..... this sounds like how mine first presented. they determined that by doing a sigmoidoscopy, for which you will need to see a GI.

 

in the meantime, i would go with trying to do some dietary things intentionally. for example, having oatmeal each morning for breakfast, even instant oatmeal, can make the world of difference. many people find nuts and corn to be just about impossible to eat and not hurt. (texture). however, peanut butter and popcorn seem fine for most folks. during a flare-up, when there is bleeding and pain, i go to only cooked fruits and vegetables, no fruit juice, no soda. pasta helps. and not snacking matters, as each time i eat, i hurt. and walking helps.

 

it may make no difference, but if it does, then it will help make the waiting to see someone time a bit easier. :grouphug:

ann

[Mommyof4ks]

I too would go to the ER. If she has another episode before going in try to get it on video. I know that sounds awful, but it can give the docs a clue how bad the pain gets when she is dealing with this.

[Alenee]

Not sure what I'd do either...

 

In the meantime though, I'd suggest dropping your dd's milk intake if she drinks it. At 2yo, dd was having the same issues you mentioned, including back pain. An x-ray showed her backed-up stool. I didn't get any answers from the doc...she just yelled at me for potty training (which I wasn't even doing!!!). I ended up cutting dd's milk intake down though and everything evened out.

[Kathryn]

:iagree: If you go to the ER, sometimes they will consult with a specialist and the specialist will see you the next day when otherwise you'd have to wait weeks or months.

 

Are you anywhere near a children's hospital? If you are, I would go right in to their ER today.

 

I hope you get some answers soon. :grouphug:

 

I too would go to the ER. If she has another episode before going in try to get it on video. I know that sounds awful, but it can give the docs a clue how bad the pain gets when she is dealing with this.

 

:iagree:

[In the Rain]

:grouphug: for you and your dd. I guess I would try the ER if that could get her seen by a specialist sooner.

[LittleIzumi]

It also reminds me of partially obstructed bowel--I forget the technical term. Where there's a blockage but not a complete blockage, so maybe it hurts as the stool squeezes through a very narrow space and then when it's past the blockage it feels better? I hope you can get into the pedi GI ASAP!

[Susan in TN]

DD has been having a little darkish blood in her stools off and on for two weeks or so. She is in increasing (but intermittent) abdominal pain. Her appetite is off. It's like it comes in waves - completely normal for hours then in pain and feeling awful.

 

Her doctor had us get a stool sample which showed no bacteria or parasites so they are trying to get her in to a peds GI doc. It's slow going though. Earlier today I found her on the bathroom floor curled up crying from pain with diarrhea with just a little dark brown blood in the toilet. I snuggled her and called the doctor. By the time they got back to me DD seems fine - totally cheerful and active. But they said to take her to the ER or we could wait a bit to see if they can get the GI doc.

 

What are they going to do at the ER if I show up with this chipper kid who is feeling fine? These in pain waves just seem to come two or three times a day but they are definitely getting worse.

 

I am worried and don't know what to do.

 

Just checking to see if you've been able to find someone to see dd? :grouphug:

[KnitWit]

There is a time for following your "instinct" or "gut" as a mother. When that time comes, you need to get your daughter seen. That means not worrying about winning the *nicest parent of a patient* award with medical professionals.

 

There is truth to the old adage "the squeaky wheel gets the oil".

 

:grouphug::grouphug:

[foster_sk]

Yikes. I would take her to the ER! Praying all is well.

[sunnylady303]

It's all a long story that I will update later but we are at the ER right now waiting to be seen. Shouldn't be long. Her pain is worse.

[elfgivas]

thinking about both of you now. hope there are quick and easy answers.... and solutions!

 

ann

[Momof3littles]

It's all a long story that I will update later but we are at the ER right now waiting to be seen. Shouldn't be long. Her pain is worse.

Thinking of you and hoping you have some answers. I think you were very wise to take her in to be seen. :grouphug:

[KnitWit]

It's all a long story that I will update later but we are at the ER right now waiting to be seen. Shouldn't be long. Her pain is worse.

 

Praying you get some answers! :grouphug::grouphug:

[Tiramisu]

Praying that your dd gets the care she needs and you both get some relief. Hang in there!

 

I'll be waiting for an update. :grouphug:

[sunnylady303]

Pray some more please. The attending doc is one we've had trouble with before with DD's chronic lung issues which is a long story. Pray she doesn't let that prejudice her and does what needs to be done. And calls my doctor who will set her right. I am suddenly very nervous. :confused:

[jewellsmommy]

Pray some more please. The attending doc is one we've had trouble with before with DD's chronic lung issues which is a long story. Pray she doesn't let that prejudice her and does what needs to be done. And calls my doctor who will set her right. I am suddenly very nervous. :confused:

 

 

Prayers just said. Please keep us informed. :grouphug:

[KnitWit]

Be firm. If she blows you off, ask her if she's willing to sign a statement saying she will be responsible for all the medical bills if she is wrong.

 

(I can get snarky when my kids are ignored)

 

I think some doctors deal with too many *drama moms* and sometimes misjudge people.

[bbmom]

:grouphug: I hope you don't have problems with the doctor and they figure out what is wrong with your dd and it is a simple fix.

[momto2Cs]

:grouphug: and lots of healing thoughts. Keep us updated when you can!

[Catwoman]

Praying for your dd!

 

Can't you request a different doctor? If this one isn't helpful, I would insist that a new specialist be called in immediately.

 

I wish you would have gotten a doctor you trusted. It would help you feel much more confident and calm.

 

:grouphug::grouphug::grouphug:

[sunnylady303]

So my last two hours:

Abdominal x ray. DD is hungry and in some pain but she can't eat or drink.

 

Some nurse walks in and announces chipperly. "Time for your IV!!" (DD is terrified of IV's because she is a tough stick and has had so many bad experiences). Nice. And at a children's hospital.

 

DD falls apart. I get her calmed down and we make a plan involving a squeezy ball and me holding her. Nurse comes in starts to look for veins. I tell her she's a hard stick and she brushes me off. I tell her they usually need the IV team and she tells me the IV team is off today because of a death in the family.

 

Fine. Grr. They try twice and DD is being so brave but the tears are just silently falling. Can't get it. The nurse says, "Actually I think the IV team is here somewhere I am going to call them."

 

:mad::mad::cursing::cursing::banghead::banghead::banghead:

 

A nurse comes in a little while later and digs around twice more in her veins. Gets some blood but not as much as they need. Poor DD just tries so hard to keep it together. Don't get an IV still. Finally nurse gives up and says they'll just do finger pricks to get the rest of the blood. DD melts down totally as soon as they say that because she has been pricked and pricked.

 

I talk her down and she calms some. But she is hungry, tired, hurting and so am I (though hurting in a different way). I still know nothing and have had nothing to eat all day. Just wanted to share.

Edited August 1, 2012 by sunnylady303

[extendedforecast]

:grouphug: it is awful sitting beside your baby while she endures pain from a medical procedure. I'll be praying for her.

[Tiramisu]

I'm sorry this is so hard for both of you. :crying:

[elfgivas]

:grouphug: we lit a candle for your dd. we'll think wonderful, positive, hopeful thoughts for both of you each time we walk by it.

 

:grouphug:

ann

[KnitWit]

I'm so sorry. You need to write that up and share it with the hospital later. That was uncalled for.

 

Do you have any close friends or family who might bring you a bite to eat and drink and sit with dd to give you a second to slip out of her room and scarf down some food? You could do it quickly and then she wouldn't be alone.

 

:grouphug::grouphug:

[sunnylady303]

Do you have any close friends or family who might bring you a bite to eat and drink and sit with dd to give you a second to slip out of her room and scarf down some food? You could do it quickly and then she wouldn't be alone.

 

 

Thanks. No - we live about an hour outside the big city. I have friends who are here in town but are working. We ought to either be admitted or sent home in the next few hours. Also DH gets off work in 2 hours. I just have to hang on.

[NorthwestMom]

I hope you get the answers you need. I would be LIVID about the white lie regarding the IV team. I would consider filing a complaint about that.

 

Can you call your doctor yourself and ask them to communicate with the attending? I'm not sure that can work, but then at least you've done something to facilitate a good outcome, you know?

 

:grouphug:

[momto2Cs]

I hope you get the answers you need. I would be LIVID about the white lie regarding the IV team. I would consider filing a complaint about that.

 

Can you call your doctor yourself and ask them to communicate with the attending? I'm not sure that can work, but then at least you've done something to facilitate a good outcome, you know?

 

:grouphug:

 

:iagree:

[juelle]

Praying for you. And that you get some answers for your dd. What a brave girl. Do you have any Rescue Remedy with you? Use it if you have. Do document all the faux pas in the ER. Even if you don't do anything with it, you'll feel better knowing that you really endured junk. Praying for someone who takes responsibility for helping you. :grouphug::grouphug::grouphug:

 

FWIW: I've had pain like that for 16 years and I am helped (not cured) by a gluten-, dairy-, and soy-free diet. I have no diagnosis beyond irritable bowel. But your dd's blood is a real issue to pursue.

[justLisa]

I don't know what I would do, but that makes me want to prick those nurses about a billion times until they cry. :glare:

 

Your poor DD. I hope you find some competence soon :(

 

Stories like this make me want to be nurse. Partly so I can be one of the good ones for kids, and partly so I can poison all of the horrible ones. I have had my time with the horrible ones.

[Catwoman]

I hope you get the answers you need. I would be LIVID about the white lie regarding the IV team. I would consider filing a complaint about that.

 

Can you call your doctor yourself and ask them to communicate with the attending? I'm not sure that can work, but then at least you've done something to facilitate a good outcome, you know?

 

:grouphug:

 

:iagree: :iagree: :iagree:

 

And I'll keep praying for your dd.

 

I'm also wondering what possible good could it do to send her home if they haven't figured out what's wrong.

[KayT]

:grouphug::grouphug::grouphug:

 

So sorry. Praying for both of you.

[Little Nyssa]

:grouphug:

[TranquilMind]

or ulcerative colitis..... this sounds like how mine first presented. they determined that by doing a sigmoidoscopy, for which you will need to see a GI.

 

in the meantime, i would go with trying to do some dietary things intentionally. for example, having oatmeal each morning for breakfast, even instant oatmeal, can make the world of difference. many people find nuts and corn to be just about impossible to eat and not hurt. (texture). however, peanut butter and popcorn seem fine for most folks. during a flare-up, when there is bleeding and pain, i go to only cooked fruits and vegetables, no fruit juice, no soda. pasta helps. and not snacking matters, as each time i eat, i hurt. and walking helps.

 

it may make no difference, but if it does, then it will help make the waiting to see someone time a bit easier. :grouphug:

ann

Or Gluten intolerance/celiac? The two or three times a day could coincide with digestion.

[KnitWit]

If I lived nearby and your dd felt comfortable with me doing so, I would have brought you food and sat with her ten minutes for you to eat and pee. :grouphug:

 

Hoping you got some answers and praying that wherever you are tonight, you both get some rest. :grouphug:

[In the Rain]

These updates have been dreadful. I hope the last few hours have gone much better for you. :grouphug: I'm so sorry you've encountered such a lack of compassion and competence in a children's hospital. :confused:

[elfgivas]

:grouphug::grouphug: came by to see how you were both doing. sure hope things got better!!!

 

ann

[Kathryn]

Praying for you both. I hope things get better for DD very soon.

[mommymonster]

If the nurse is flip again, ask for the charge nurse. Tell her/him factually the situation. Ask him/her to help fix the issue. If the charge nurse doesn't get the job done, ask for a patient advocate. If the patient advocate doesn't help, ask them to refer you to someone else for assistance (floor steward is sometimes the next one up the food chain). Don't be afraid to advocate for your child! I know it is hard and you're hurting, but get good care and then deal with emotions...

 

Pm me if you need help navigating the "system.":grouphug:

[sunnylady303]

We are home. Things got rougher after and I was not able to update. But here's the latest.

 

DD has a bowel impaction that has caused minor tears in her colon. They gave us four options for treatment ranging from immediate surgery to medication seven times a day for the next two days to see if they can move it. All the options have risks - they laid it out for me...surgery risks are understood and the risk of treating with medication is that it could get worse and cause worse tears in her bowel or herniation (:confused: no idea what that is and the doc was in a hurry). She left it up to me. I chose medication and have been tossing and turning all night wondering if that was the best choice. They gave her something for pain so she feels better (aside from the eight!!! bruises where they tried to get an IV started).

 

 

We start the meds this morning. We see the GI doc tomorrow for another xray and ultrasound to see how the impaction is moving. And she sees her again next week to discuss whether there are any underlying issues or not. It seems maybe there aren't which is such a blessing. I was afraid we would be dealing with a whole 'nother big issue which we already have with her lungs.

 

So mostly I feel blessed. I was grateful for your support and suggestions. I did speak to the charge nurse who was sympathetic and wrote up the one nurse who lied about the IV team being gone. We are doing much better and praying for poop.

 

Now I have to go take a drainage tube out of a goat. :lol::lol:

[Catwoman]

Thank you for posting the update! I have never prayed for poop before, but I'll do it for your dd!

 

I'm relieved to hear that it sounds like there's nothing more serious going on, and I hope the medicine will work for her -- and quickly.

 

Has the doctor suggested a specific diet for her, or told you to be sure she drinks a certain amount of water each day? I hope so, because you need to know how to avoid this awful problem in the future.

 

:grouphug::grouphug::grouphug::grouphug:

 

I'm glad the lying nurse was written up!

[Tiramisu]

I'm so thankful that you finally got an answer. I will pray that things get moving, moving, moving!!!

 

I hope you like the GI doc and that she's someone you can really work with.

 

:grouphug:

[KnitWit]

Praying!!!