Scopes went well. Some redness was seen in stomach and colon and one "spot" in stomach. There was also an anal fissure which explains her pain/burning. She's bleeding quite a bit from her bottom so keeping an eye on that. They will discuss her slides at a conference tomorrow and we should hear something next week.
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GI Check-Up
- Thread starter DanceMom
- Start date
Depends on number of biopsy sites.
DS had some but we talked to the GI just in case the amount was more than they expected .
DS had some but we talked to the GI just in case the amount was more than they expected .
We didn't know she was bleeding until the GI was already with another case. The nurse saw it and told us to call if it didn't stop. He wasn't sure what was considered normal though. She had blood in the bed and every time she passes stool it looks like bloody clumps. When she wipes thick blood continues to come out. It even leaks out when she isn't passing gas or having a BM. She screams out in pain though and it breaks my heart. Could all this be from the fissure?
crohnsinct
Well-known member
O.K. THAT sounds troubling to me and I would certainly call. Best case it is nothing and you just made them pick up a phone. Quick before they go on service!
Dance mom,
How is she doing? Fissures can be so painful. I would call tomorrow and ask about that prescription for something to help. You shouldn't have to wait on that.
How is she doing? Fissures can be so painful. I would call tomorrow and ask about that prescription for something to help. You shouldn't have to wait on that.
DustyKat
Super Moderator
^^^^ Ditto to what Kim said. They have identified a fissure so should have instigated treatment there and then. Awfully painful things, bless her. :ghug:
If there is inflammation present then Flagyl may be used to help reduce any infection/inflammation present plus creams. If it is a fissure alone then usually creams are used without antibiotics. Often a good combination is a Lidnocaine gel to help relieve pain and something like Rectogesic which is a nitrate based cream that relaxes the muscles and improves blood flow to the area. They are used in an alternating pattern.
I hope your lass is soon feeling better mum. :heart:
Dusty. xxx
If there is inflammation present then Flagyl may be used to help reduce any infection/inflammation present plus creams. If it is a fissure alone then usually creams are used without antibiotics. Often a good combination is a Lidnocaine gel to help relieve pain and something like Rectogesic which is a nitrate based cream that relaxes the muscles and improves blood flow to the area. They are used in an alternating pattern.
I hope your lass is soon feeling better mum. :heart:
Dusty. xxx
A's bleeding has really slowed (it isn't leaking out anymore) but her stools are still very bloody (mostly all red). She's in tremendous pain from that stupid fissure. My guess is that she had a very small one that was causing her discomfort, but the procedure tore it even more so now she's in excruciating pain. I emailed the GI but I know he has the conference today. The nurse did check my message (love that feature of the online account!) so hopefully she'll track him down and give some recommendations for the weekend.
The GI did mention that he felt A's case was not textbook and is even questioning her diagnosis. These biopsies are very important and I hope we don't end up back at square one! This gives me so much anxiety.....
The GI did mention that he felt A's case was not textbook and is even questioning her diagnosis. These biopsies are very important and I hope we don't end up back at square one! This gives me so much anxiety.....
Long story short....biopsies came back normal and GI is unsure of how to proceed. A is only the second atypical IBD case he's ever had. He does still think she has CD but he is confused as to why the biopsies don't agree.
So....we are being referred to ophthalmologist, rheumatologist, and another GI in Atlanta for a second opinion. Our GI is just looking for more "proof" and a little assistance.
So....we are being referred to ophthalmologist, rheumatologist, and another GI in Atlanta for a second opinion. Our GI is just looking for more "proof" and a little assistance.
DustyKat
Super Moderator
:ghug:
So the biopsies were completely normal or were there changes but no evidence of Crohn's?
Good to hear that the your Gi is not content to let sleeping dogs lie and is referring you on. Sending you loads of luck that your answers are just around the corner.
Dusty. xxx
So the biopsies were completely normal or were there changes but no evidence of Crohn's?
Good to hear that the your Gi is not content to let sleeping dogs lie and is referring you on. Sending you loads of luck that your answers are just around the corner.
Dusty. xxx
First dose of Cortifoam done. ....I need a drink after that! She's choosing not to speak to me right now. Poor thing. I did get to see the fissure though and I can see why she's in so much pain. I'd imagined it to resemble a papercut but it was much wider than that. Ouch!
Out of curiosity. .... anyone else ever have normal biopsies after diagnosis?
Out of curiosity. .... anyone else ever have normal biopsies after diagnosis?
DS did on his last scope for the most part only mild chronic duodenitis .
Nothing else - but he is on humira so,.......
We follow up with GI soon
Nothing else - but he is on humira so,.......
We follow up with GI soon
DustyKat
Super Moderator
If there were acute changes only when diagnosed, meaning inflammation had not been present for a sufficient amount of time for chronic changes like scarring to take place, then Prednisone certainly has the ability to produce healing that will eliminate previous evidence.
*Hugs* to you and your lass mum, I so hope the enemas work and feel for you both for having to go through it. :ghug:
Dusty. xxx
*Hugs* to you and your lass mum, I so hope the enemas work and feel for you both for having to go through it. :ghug:
Dusty. xxx
Just wanted to update quickly and say how much I LOVE our GI! First of all, he spent about 30 minutes on the phone with me Friday afternoon, and then sent a nice follow-up email on Sunday to further explain things and check on my girl.
Ophthalmology already contacted me today and set her appointment for the 22nd (same day we go for the GI follow-up). Should hear from Rheumatology too as he wants us to see them this week. Also have to have labs and a chest x-ray done before that appointment.
Anyway, A is feeling pretty crummy with awful diarrhea but I can't be sure it isn't a mild stomach bug. I haven't been feeling too great either. Hoping to get some solid answers in the upcoming weeks. Hanging in there!
Ophthalmology already contacted me today and set her appointment for the 22nd (same day we go for the GI follow-up). Should hear from Rheumatology too as he wants us to see them this week. Also have to have labs and a chest x-ray done before that appointment.
Anyway, A is feeling pretty crummy with awful diarrhea but I can't be sure it isn't a mild stomach bug. I haven't been feeling too great either. Hoping to get some solid answers in the upcoming weeks. Hanging in there!
Poor thing, I do hope she starts to feel better soon. 
Just on the biopsies, it seems that biopsy results are considered to be fairly conclusive and this really confuses me??? From what I understand, inflammation caused by crohns is patchy and may also be microscopic (so invisible to the eye), so I would think that there is a fairly good chance that a biopsy sample could very easily miss a patch of inflammation and result in a 'no inflammation' report. In my mind, biopsies with a positive indication of crohns is a useful report but a report saying 'no inflammation' isn't worth very much (ie high potential for a false negative)??? Am I correct here?
DanceMom - If my thinking is correct, did your GI mention a possibility of the biopsy missing areas of inflammation?
Just on the biopsies, it seems that biopsy results are considered to be fairly conclusive and this really confuses me??? From what I understand, inflammation caused by crohns is patchy and may also be microscopic (so invisible to the eye), so I would think that there is a fairly good chance that a biopsy sample could very easily miss a patch of inflammation and result in a 'no inflammation' report. In my mind, biopsies with a positive indication of crohns is a useful report but a report saying 'no inflammation' isn't worth very much (ie high potential for a false negative)??? Am I correct here?
DanceMom - If my thinking is correct, did your GI mention a possibility of the biopsy missing areas of inflammation?
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He didn't really say he "missed it" but perhaps he did. Strange thing is his initial report noted focal erythema in both the stomach and colon but I suppose the biopsies didn't match. I'll get the full report on Tuesday. He did say that GI manifestations sometimes lag behind skin and blood manifestations so it is possible that the chronic changes in her GI system haven't occurred yet. That's wonderful news but it makes a diagnosis and treatment much more complicated.
We see the Rheumo Friday, and the Ophthalmologist and GI on Tuesday. Still trying to schedule the second opinion in Atlanta. All of this scheduling and planning gives me a headache! lol
We see the Rheumo Friday, and the Ophthalmologist and GI on Tuesday. Still trying to schedule the second opinion in Atlanta. All of this scheduling and planning gives me a headache! lol
She's not feeling so great but she managed to go to school and dance. Her teacher allowed her to stay in from PE so she could be near a bathroom (love her teacher!). She hates the Cortifoam but she's much more cooperative with it now. She says it burns but I wonder if it is just an uncomfortable feeling that she doesn't like. Not sure. She did say she'd prefer a "Cortimist". lol
Having some insurance issues.....
Our insurance claims that the doctor we want to see regarding the second opinion is not in our network of providers. Therefore, they won't cover A's medical costs if we choose to see him. When I called the doctor's office they claimed to have verified our benefits and stated that her care would be covered by insurance.
Has anyone else had a similar experience with insurance coverage? This second opinion is really important but there is no way we can pay for it on our own.
Our insurance claims that the doctor we want to see regarding the second opinion is not in our network of providers. Therefore, they won't cover A's medical costs if we choose to see him. When I called the doctor's office they claimed to have verified our benefits and stated that her care would be covered by insurance.
Has anyone else had a similar experience with insurance coverage? This second opinion is really important but there is no way we can pay for it on our own.
Be careful! I would trust what your insurance says. We have had this happen once luckily in the end our pediatrician wrote a letter stating we needed to see this specific doctor and they finally covered it but it was not fun getting to that point.
crohnsinct
Well-known member
Yes^^ as a health benefits administrator in a previous life...go with what insurance company says. Docs offices make mistakes all the time. There should be an online listing of all the docs in your plan and it should be easy to look up. Are you going out of state? They could be in your company's network but not in your particular geographical network, in which case, you just need your GI to call and get the approval to cover in network. That one should be easy because there is already a negotiated rate. If they really are totally out of network, have your GI call and ask for an appeal. You would be surprised at how many appeals are granted. Many times the docs just take care of them without us knowing...usually meds and procedures though. Lastly, once you tell your doc this, he/she may say, "oh o.k. well then use this person they are just as good" so maybe have the listed printed out for them to look at. If there really aren't any they want to use on the list then they should help you with the appeal. Good Luck!
You might also be able to call the new place and ask if they can lower their fee any. You'd be surprised how much is negotiable. Just tell them your really, really need their opinion, but your insurance isn't cooperating, can they help you out? It's worth asking. Or maybe even just have them do a records review?
We saw the Rheumatologist today. He did a pretty thorough examination, took her history, and ordered a ton of blood tests and a urine test. I've never even heard of most of these tests so it will be interesting to see if they find anything. We'll have them done Tuesday but we don't see him again for another 6 weeks.
She has one EN spot on her arm that he examined and agreed that it is panniculitis of some sort but couldn't be sure it was EN. He is going to have her slides reviewed by a pathologist at our hospital (the dermatologist we see is not at the Children's Hospital) to be sure it is EN. If this pathologist disagrees he'd like another biopsy done. I'm not sure if I want to go that route. A has been so compliant with everything we've asked her to do but she is so self-conscious about her biopsy scar that I hate to do that to her again. I feel like she's becoming a pin cushion!
Apparently our GI asked him if he thought A could have an immune deficiency of some sort but he doesn't think so. He didn't give much of an opinion today but I didn't really expect him to.
Meanwhile....the diarrhea continues...5-8 times a day now. She's eating about 1/3 of what she usually does and she's extremely irritable and easily fatigued. I can always tell how she feels based on what her tumbling is like. Tonight it was terrible and she asked to leave gym early (which she's NEVER done before!).
More appointments Tuesday....
She has one EN spot on her arm that he examined and agreed that it is panniculitis of some sort but couldn't be sure it was EN. He is going to have her slides reviewed by a pathologist at our hospital (the dermatologist we see is not at the Children's Hospital) to be sure it is EN. If this pathologist disagrees he'd like another biopsy done. I'm not sure if I want to go that route. A has been so compliant with everything we've asked her to do but she is so self-conscious about her biopsy scar that I hate to do that to her again. I feel like she's becoming a pin cushion!
Apparently our GI asked him if he thought A could have an immune deficiency of some sort but he doesn't think so. He didn't give much of an opinion today but I didn't really expect him to.
Meanwhile....the diarrhea continues...5-8 times a day now. She's eating about 1/3 of what she usually does and she's extremely irritable and easily fatigued. I can always tell how she feels based on what her tumbling is like. Tonight it was terrible and she asked to leave gym early (which she's NEVER done before!).
More appointments Tuesday....
Just have to say.....our Take Steps team had a booth at our downtown market today and the support from the community was amazing! So many donations, kind words, and support! A's teacher came (love that lady to pieces! ) and made A feel like the most important person on the planet. So many people told her how strong she was and that they'd pray for her. An exhausting but uplifting day!!
A had her labs and ophthalmology appointment today so now we get a 2 week break before heading to Atlanta! She is such a trooper when it comes to labs. She doesn't even flinch! She was quite excited that she broke the record for the most tubes filled by a kid in one sitting! 12 tubes total (thanks to GI and Rheumo)! They asked for some interesting things....
Then we headed to her eye appointment. She is a little farsighted but there was no inflammation present. She told us to come back in a year, or sooner if we had problems.
Then we headed to her eye appointment. She is a little farsighted but there was no inflammation present. She told us to come back in a year, or sooner if we had problems.
Glad she was such a trooper with the blood. Looking forward to hearing what you find out in Atlanta. Who are you seeing there?
We have been referred to Dr. Kugathasan in Atlanta. Apparently our GI has been consulting him regarding A's care and he wants us to make the trip so she can have an official second opinion. As far as I know it will just be an hour long consultation, no other tests involved.
For those of you who have gone for a second opinion - can you please share your experience and what your appointment was like? I'm not quite sure what to expect.
For those of you who have gone for a second opinion - can you please share your experience and what your appointment was like? I'm not quite sure what to expect.
WE have had two for ds.
Both appts were about 1/2 hour long.
SOme had us meet other staff while we were there ( such as pain management ).
Generally they had reviewed everything in his file/ notes tests etc...
The nurse talked to us many times before the visit and any extra tests the 2nd opinion doc wanted were done prior to the visit to save time.
They then gave us their take on things as well as med recommendations.
Both of our 2nd opinions agreed on previous dx
One changed meds
Other left it the same and gave other extra med options.
Good Luck
Both appts were about 1/2 hour long.
SOme had us meet other staff while we were there ( such as pain management ).
Generally they had reviewed everything in his file/ notes tests etc...
The nurse talked to us many times before the visit and any extra tests the 2nd opinion doc wanted were done prior to the visit to save time.
They then gave us their take on things as well as med recommendations.
Both of our 2nd opinions agreed on previous dx
One changed meds
Other left it the same and gave other extra med options.
Good Luck
School nurse just called. A is crying that her stomach hurts and says she can't make it through the day. She never wants to miss school so I know she feels awful. I feel very helpless as we wait for the next few appointments!
She's starting to have stomachaches again, she's having explosive diarrhea 4-6 times a day, she has a very poor appetite and is starting to lose weight, she has a huge EN knot on her arm.....
She's starting to have stomachaches again, she's having explosive diarrhea 4-6 times a day, she has a very poor appetite and is starting to lose weight, she has a huge EN knot on her arm.....
Some of A's labs are starting to come back. GGT was good and so was CBC. Her WBC was on the low side of normal but I think that is due to the Flagyl. I'm confused about her Hepatic Function Panel though so maybe someone can provide some insight. A last had an HFP on 10/02. At that time her Globulin was 1.8 (2.0-3.8), AST was 28 (12-32), and her ALT was 73 (8-24). Her most recent HFP was on 10/22. Now her Globulin is 1.7, AST is 41, and her ALT is 38. So the ALT is decreasing, which is great, but the AST is increasing and is now abnormal. Not sure what to think about that. She hasn't taken 6-mp in a month so I expected those numbers to continue to decrease.
GI also ordered Pneumococcal AB, 23 serotypes. Anyone know what this is for? Nothing was flagged so assuming all is good there.
Still waiting on tons more results.....
A still has a low-grade fever...99.4 last I checked. She's also starting to look puny again. Never thought I'd miss those steroid cheeks but I'm starting to!
GI also ordered Pneumococcal AB, 23 serotypes. Anyone know what this is for? Nothing was flagged so assuming all is good there.
Still waiting on tons more results.....
A still has a low-grade fever...99.4 last I checked. She's also starting to look puny again. Never thought I'd miss those steroid cheeks but I'm starting to!
CarolinAlaska
Holding It Together
Are you sure the pneumococcal was a lab test? There is a pneumococcal vaccine with 23 serotypes...
I think the AST/ALT can be elevated by general illness/flare of IBD, doesn't seem remarkably high. Low globulin has to do with general nutrition - low protein possibly due to all the diarrhea?
CarolinAlaska
Holding It Together
Wierd. I've not heard of testing for that.
GI just called and said he definitely isn't sure of A's Crohn's diagnosis because her biopsies do not point directly to Crohn's. I feel like we are sliding backward again! He wants her to have some new testing and mentioned a WBC scan. Anyone ever had this before? Not sure what else we are in for....
A just finished a 14 day course of Flagyl and is also on Pentasa. I'm not sure if she has inflammation at this time but something must be causing the diarrhea. Her complement c3 was low, so according to what I've read if she does have IBD it isn't active at this time.
Her puzzle is in a million pieces and nothing seems to fit together.....very frustrated....
Her puzzle is in a million pieces and nothing seems to fit together.....very frustrated....
Okay....I have to share this because I know many of you will appreciate!
A was recently on Flagyl and I always snickered at how she mispronounced it as "Fragile". What made it even more funny was that the Rheumatologist pronounced it the same way, lol. So....this gave me an idea for A's adjective costume she has to wear to school tomorrow. All third graders have to choose an adjective, design a costume that portrays that adjective, and have an adjective parade through the school. Well A is going as "FRAGILE"! She will be bubble-wrapped (yes! I've always wanted to do this to her!) and have a sign that says "Fragile! This end up!"
A was recently on Flagyl and I always snickered at how she mispronounced it as "Fragile". What made it even more funny was that the Rheumatologist pronounced it the same way, lol. So....this gave me an idea for A's adjective costume she has to wear to school tomorrow. All third graders have to choose an adjective, design a costume that portrays that adjective, and have an adjective parade through the school. Well A is going as "FRAGILE"! She will be bubble-wrapped (yes! I've always wanted to do this to her!) and have a sign that says "Fragile! This end up!"
About the tetanus if her titers were low then she probably needs a booster. Not sure why he checked but it is good he did. When she is feeling better it probably would be good to get her a booster. I am curious as to why he is now second guessing the Crohn's diagnosis. Not sure about the WBC scan though. When do you go for the second opinion?
I don't think he has ever been 100% confident she has Crohn's. She certainly isn't a textbook case. Her biopsies show either non-specific inflammation or are completely normal, and CRP and Fecal Calp are always normal as well. I swear, her inflammation plays hide-and-seek! She has constant diarrhea (which is now completely liquid), bloody stools, erythema nodosum, and a fissure that is starting to reappear for some reason. Just not 100% sure that reason is Crohn's. I know they are looking into some other autoimmune disorders as well.
We leave for the second opinion in Atlanta next Tuesday and will be seen on Wednesday and Thursday. I'm ready to just get this over with.
We leave for the second opinion in Atlanta next Tuesday and will be seen on Wednesday and Thursday. I'm ready to just get this over with.
Dance mom,
I am really eager to hear about your second opinion as it looks like we may be heading that way ourselves. What made you guys pick Atlanta for that second opinion vs CHOPs, Cincinnati! or Boston. I am looking at these trying to figure things out. Where in Atlanta are you going?
I am really eager to hear about your second opinion as it looks like we may be heading that way ourselves. What made you guys pick Atlanta for that second opinion vs CHOPs, Cincinnati! or Boston. I am looking at these trying to figure things out. Where in Atlanta are you going?
Our GI set up the second opinion for us. We are going to see Dr. Kugathasan at Children's Physician Group/Egleston. Our GI has sent another "non-textbook" patient there and Dr.K was able to confirm his diagnosis and determine the best treatment plan for him. The drive won't be too bad and they accept our insurance so it just seemed to make sense for us.
Why are you looking for a second opinion?
Why are you looking for a second opinion?
I am unsure about this gastroparesis diagnosis. She also has had continued pain in spite of the Crohn's being in remission. I just wonder if there is something we are missing.
Dr. K just called. Looks like we will definitely be having the white cell scan and another pill cam. He said he believes her Crohn's is in the small bowel so another set of scopes would be pointless. Hopefully she can hang onto this pill cam for longer than 3 hours and 15 minutes! lol
Trick-or-treating tonight was a disaster. Her wrist has been bothering her and I ended up carrying her candy bag. Her bottom started burning/itching and she just wanted to go take a shower. She somehow got terrible heartburn and we kept having to stop until the pain would ease up. And the whole time she was worried she'd need to use the bathroom and wouldn't make it to one in time. Whatever disease she has SUCKS!
Aw, so sorry, DanceMom. The last three Halloween's have been disasters for us. The one year he did feel good and go trick or treating we really did it up for him to make it special so he wouldn't be so bitter towards the holiday. Maybe consider that for next year. Now all he talks about is the good year and has either blocked out or doesn't remember the bad ones.
DustyKat
Super Moderator
Oh my goodness DanceMom, I am so very sorry to hear of all that A is going through and then a sad Halloween to top it off. Poor love. :ghug:
Hoping, wishing and praying that the second opinion gives you rock solid answers and an action plan that gives A long and lasting relief. :goodluck:
Thinking of you both. :heart:
Dusty. xxx
Hoping, wishing and praying that the second opinion gives you rock solid answers and an action plan that gives A long and lasting relief. :goodluck:
Thinking of you both. :heart:
Dusty. xxx
- Location
- Pennsylvania
Hi DanceMom,
How is your sweet girl doing? Hope her temp is down and she's doing better than last week!
How is your sweet girl doing? Hope her temp is down and she's doing better than last week!
It was definitely a rough weekend. A stayed in bed most of the day Saturday. I finally coaxed her out around 8 to sit on the couch and watch a family movie. Today she got up and did some things because she thought she was feeling a little better. Then her stomach started hurting again and back to the bed she went. Her temp is down to 99.2 so I'm hoping she is well enough to go to school tomorrow.
Our local Rheumatology nurse just called and said A needs a booster for tetanus and pneumovax. Apparently her labs indicated that her levels were low. Guess we'll make an appointment with the Pedi and add the flu shot in there as well. She's not going to be very pleased with this news.
A's joint pains are getting worse and I think it is due to the EN. Yesterday she had trouble running her laps at PE (and she loves to run) and this morning 3 new EN spots appeared on that knee. She's also down to 49 lbs despite having a pretty good appetite. She was 53 lbs one month ago at the time of her scopes. And every day is a battle with headaches, stomach aches, and a sore throat. I'm just venting. Her next GI appointment isn't until the 4th of December and I can only imagine how she'll feel by then.
She's only on Pentasa right now (6-mp caused liver toxicity). Our GI is waiting to hear back from the IBD team in Atlanta before making any medication changes. Apparently her diagnosis is still up in the air. Nothing like being told that your child needs to get more sick so things are more clear cut....
So sorry to hear-
I have btdt before on kiddo not sick enough.
ugh
hope the times goes by quickly.
I would still update the GI on her status at least once a week ( or more) so they can pull her in if need be while they are making decisions.
I have done this with Ds when things were all over the map.
I have btdt before on kiddo not sick enough.
ugh
hope the times goes by quickly.
I would still update the GI on her status at least once a week ( or more) so they can pull her in if need be while they are making decisions.
I have done this with Ds when things were all over the map.
btdt too.
I always fear when I heard "not sick enough", my goodness how sick do you want her.
Now we're in the worlds of "which one does she have now".:ybatty:
Is it just EGID's and not IBD, is it IBD now and no longer EGID's
or is Grace a new breed of bowel diseases altogether.
Hugs, you better be sticking around.
If they haven't kicked me off you should be safe.:lol:
I always fear when I heard "not sick enough", my goodness how sick do you want her.
Now we're in the worlds of "which one does she have now".:ybatty:
Is it just EGID's and not IBD, is it IBD now and no longer EGID's
or is Grace a new breed of bowel diseases altogether.
Hugs, you better be sticking around.
If they haven't kicked me off you should be safe.:lol:
A got her vaccines today (pneumovax, td, influenza). That was about 3 hours ago and her temp is already 99.5. Hope it doesn't get any higher. She says her arms feel like they're swollen but I'm assuming they're just uncomfortable? The arm that she got the td and pneumovax in is hot to the touch but isn't noticably swollen or anything. Hoping she wakes up in the morning and feels much better.
Well, her arm did end up swelling and is still very painful for her. I guess that is fairly typical. She's still running a 99.5 temp even with Tylenol. I'm beginning to wonder if the temp is from the vaccines or part of these periodic fevers she's been getting the last few weeks. Those never respond to Tylenol either.
Her dance teacher told me today that A doesn't look well and she can tell she's lost weight. Made me sad to know that others can notice. She's lost about 6 lbs. in the last 6 weeks. That's a lot to lose on a 47 in frame!
Meanwhile we're still waiting to hear back on our second opinion.....
Her dance teacher told me today that A doesn't look well and she can tell she's lost weight. Made me sad to know that others can notice. She's lost about 6 lbs. in the last 6 weeks. That's a lot to lose on a 47 in frame!
Meanwhile we're still waiting to hear back on our second opinion.....
I am so with you. Apparently my child isn't sick enough either and also has nonspecific inflammation. I think that's why I am so reluctant to scope her again. What if it is the same?! Hang in there .... I'm so sorry she has been miserable lately!