Tara, anyone nurse, doctor - I'm freaking out!!!!

coasterqueen wrote: I just got a call from Megan's pedi Gastro doc (nurse). They took blood early this week and just got the bloodwork back. She said that Megan's inflamation markers are highly elevated. Her SED rate is 77 and it should be between 0 and 20. Her creative protein levl is 1.3 and should be less than 1.

I asked the nurse what this means and she said "all I can say is she has severe inflamation somewhere and he'll have to scope the esophagus and the bum and take biopsies and see WHY there is inflamation".

That's it. That's all she said. I"M FREAKING OUT HERE. I can't stop crying. I knew she was having the scope but we really thought it would come back with no real results. I need answers NOW.

I've been off work so much with the girls being sick and so it was very hard to get 3 days off work next week and the nurse just told me I now have to take the full week off because she has to be on a clear liquid diet and take Miralax and she'll be pooping for 2 days straight.

DVFlyer replied: Ugh...

Inflammation can be many things... unfortunately. I'm sure if the Dr's knew what was causing it, you would be the first one they told.

Hang in there. Hopefully the scope will give the the information they need.

Kaitlin'smom replied: sorry I know nothing of what they say but I hope you get answers soon. call or text me if you need to talk or vent.

luvmykids replied: I have no clue, but I am soooo sorry! It sounds miserable for her, poor thing, and I'm sure as a mom it's just as bad for you to not have the specifics

amymom replied: Oh Karen, I know how you feel. I was told similar things with Mary Beth. The inflammation was in her esophagus and we found out from the scope and biopsies that the cause was her reflux and the irritation from the lactose intolerance. The truth is that once we were able to control her reflux and get the lactose problem under control.... her sed rate went to normal.

Biopsies are not only done to find cancer but find out other things as well. So try not to have those words scare you so much. (And I know easier said than done. )

If the scope is next week, than you will have answers real soon. You can do it, I know how strong you are, you really can do this. Take care. Lots of prayers and good thoughts continue to go your way.

CantWait replied: Hang in there. I hope you get some answers soon.

amymom replied: Karen, I have been thinking about you all night.

Please try not to worry, these tests will help you get answers. You have known that she has had some problems for awhile and now the blood work shows inflammation. Inflammation can be anything ... like gum disease or inflammation from GERD or more serious and less serious things. So try hard not to worry and wait for the actual results. Answers are helpful, I know that they make adifference in outlook.

cameragirl21 replied: Karen, if you're referring to creatinine protein, that is a reference to kidneys. I remember when my cat was sick, the first indicator of kidney health was her creatinine level.
Please note that the elevation you're describing is nowhere near what is considered serious kidney disease, at least from my limited experience with feline kidney disease.
It's possible that perhaps she has some mild inflammation of the kidneys, like maybe if she's eating something that she's allergic to and her kidneys are struggling a bit to detox her body.
This is just a guess on my part as I don't know anything about inflammation and childhood allergies but if you're referring to a high creatinine level then I do know that is a reference to the kidneys.
Hang in there, I hope you get your answers soon and I hope that Megan is all better soon.

amymom replied: Jennifer, I think and Karen will let us know that she was referring to C Reactive Protein which is another marker for inflammation.

I think it is C-reactive Protein because when MB had her blood tests that is one that came back elevated and it was about 2.5 ... her doctor said it probably was from the inflammation in her bowel. In adults they look at the C Reactive for inflammation and if over 3.0 they worry about heart disease at least my doc does. MB's C-Reactive and SED rate both went down after her GERD was under control, her ulcerations in her stomach and esophagus were repaired And we dealt with her lactose intolerance. Her last blood works came back all in normal range AND she is even gaining weight now.


Karen I know you will have answers soon.

cameragirl21 replied:
oh, lol, sorry, my bad.
Hope you get answers soon, Karen.

amymom replied:
It is only because I have BTDT that I knew. Otherwise I would have had noooooooooooo idea. lol

Nina J replied: She has allergies, yes? Perhaps her SED is elevated because of her allergies. I assume she has been tested for coeliac's disease, etc. But perhaps it is something similar and allergies is causing inflammation in her bowel, or something similar, which has caused the raised SED.

Try not to worry too much. Easier said than done, but she will be fine.

jcc64 replied: Hey Karen--a biopsy simply means sampling something, anything from your body and examining it closely under a microscope to gather data. People commonly associate it with cancer, but biopsies are done for all kinds of reasons. It sounds like Mary Beth is the one to be listening to here--your kids' cases sound very similar. As traumatic as this all is for you and Megan, at the end you'll hopefully have the information you need to get her past all of her issues. Try to stay as calm as you can, I'm sure it's a fixable problem.

A&A'smommy replied: I had a friend his 4 year old daughter had the same problem but she was also running a high fever they NEVER did figure out where the problem was (and btw her SED rate was WAY higher) and now she is fine I'm sure she will be fine!!!

coasterqueen replied: Thank you everyone. I'm sorry I didn't get on over the weekend to respond and I appreciate so much that you all are thinking about us.

To answer the question regarding the last blood test result. It is the C reactive protein.

I probably wouldn't have been so nuts about the results the nurse gave me but her voice sounded serious, you know? My heart pounded out of my chest as she was telling me all this. Why do they have to be so serious? Then when I asked more about it she would only say it's inflammation and won't know until they do more. So not a lot to leave me with, ya know.

Megan did have reflux as a baby and before a year old we took her off the meds. The doc and Dh both thought it was best to do so and she appeared at the time to be ok like that. So I know it could be that. She still has the refluxing sounds, I do know that.

I think a lot of what I feel is guilt. I've always felt in my gut and heart from the time she was itty bitty that there was something not right. As she got a bit older I still felt that way and everyone kept telling me she was acting the way she was to get attention, to get out of this or that, or that it was possibly her sensory issues, which I'm still told these things. Then when I heard the results from the nurse this flood of guilt for not fighting every single person who has told me those things, came back. I've fought but as a mother you sometimes feel you don't fight enough. My baby complains of being in pain and what have I've done? Listened to others and not my heart. Thankfully I finally am.

I feel a lot better today than I did Friday. I know it could be something as simple as her food allergies or acid reflux. I do fear the worst in my head, sometimes, that just takes over control when you don't want it to and I just think it's a mother's instinct to be so paranoid.

Dh is home with her today as I have a big event coming up that I'm trying to get things done so I can be off more when she really needs me this week. Unfortunately Kylie has a 102+ fever so she's home with them today. I hope they are ok for him today.

lisar replied:

Sarah&Mackenzie replied: Poor little Megan!