Visiting the GI Dr.
Well, we saw the gastroenterologist.
Baby E was feeling really badly this morning--and this even after having no banana since yesterday morning. Last night was pretty rough. When she woke up this morning she was so very tired, and she screamed and screamed. She's been fussing and tired so much this week. She refused to eat more than a bite or two of breakfast, and cried in the car until she finally fell asleep again.
When we got to the doctor's office, we had to wait quite a while. Baby E just sat on the floor the whole time, not moving, just staring. When the nurse took us back to the room and got her weight and temperature, Baby E just sat or laid in whatever position we put her. The same when the doctor examined her. She barely responded to him.
##################
The nurse and the doctor both kept commenting about what a good baby she was. I wanted to cry. I tried to explain that this kind of behavior is not normal for her; that she's normally very active and social. Everyone keeps telling me she looks fine. But she's so not fine.
Her weight was down to just over 21 lbs. She weighed 20 lbs. from the time she was 6 months to a year, but had been about 23 lbs. at her last checkup a month or so ago. So she really has lost weight.
This week I've been feeling like I want to stand on a rooftop and scream, "Somebody please listen to me! Something is wrong with my baby. Please make her better. Please, please . . . can't somebody help my baby?"
That's pretty much what I said to the GI doctor, actually. Except for the "please listen to me" part. I wanted to say that, though. I did tear up a couple of times when I was talking to him. I feel like I just can't get anyone to really understand how sick she is.
He made me feel a bit like a hypochondriac crazy overbearing mother, but he does think Baby E could definitely have celiac disease. He said that a lot of her symptoms could certainly point that way, and that about 1 in 100 or 150 people have celiac disease even if they're symptom-free. So he wants to do the endoscopy and blood test.
Or it could be just (just!) the allergies. Either way an endoscopy would give us useful information, he said. We're just going to do the blood draw for the blood test at the same time as the endoscopy, since they'll be putting her under sedation and opening up an IV site anyway.
He also said he'll be putting her on a dextrose IV for the procedure. Dextrose as in corn-derived sugar. I tried to ask him about possible alternatives, telling him I was concerned because Baby E is extremely sensitive to corn. He totally brushed me off. Actually got irritated with me.
"There's no protein in it, so nobody could possibly be allergic to this," he said, "There is nothing in it that anyone could possibly be allergic to, ever. It's just not possible."
This PubMed article and the experiences of a number of people on a corn allergy forum I frequent disagree. It has happened that corn-allergic people have had severe, even anaphylactic, reactions to dextrose IVs.
Maybe it's not a "true" IgE-mediated allergy, but people can and do have unpleasant reactions to derivatives of things even if they contain no detectable protein. Given Baby E's level of sensitivity, it's certainly reasonable to be concerned that it would make her very sick even if it wasn't a truly serious reaction.
I tried to explain that Baby E definitely reacts to even very small traces of corn derivatives in things certified to have no protein--even things that don't actually contain corn but were just grown on corn, like xanthan gum. His response?
"I'm not going to argue with you about it; we are going to do the procedure and this is what we're going to give her."
You know, even if that was necessary it wouldn't have hurt him to at least ACT like he understood my concerns.
I don't care if you do think I'm a crazy overprotective mother; I am going to advocate for my child.
I'm going to find out if there is a corn- and soy-free alternative and have either my pediatrician or my allergist call and ask him about using that instead. Maybe if it's coming from someone other than me he'll take it a little more seriously.
If they absolutely do have to use a corn-derived product in the IV, I'm going to try to make sure they have an epi-pen available just in case she did have a bad reaction.
Meanwhile, we have to keep giving her gluten until after the biopsy and blood draw. She was feeling much better this afternoon, until I gave her a snack of yeast-free spelt bread (spelt does contain gluten) and grapes. Now she's flailing around crying again.
Baby E was feeling really badly this morning--and this even after having no banana since yesterday morning. Last night was pretty rough. When she woke up this morning she was so very tired, and she screamed and screamed. She's been fussing and tired so much this week. She refused to eat more than a bite or two of breakfast, and cried in the car until she finally fell asleep again.
When we got to the doctor's office, we had to wait quite a while. Baby E just sat on the floor the whole time, not moving, just staring. When the nurse took us back to the room and got her weight and temperature, Baby E just sat or laid in whatever position we put her. The same when the doctor examined her. She barely responded to him.
##################
The nurse and the doctor both kept commenting about what a good baby she was. I wanted to cry. I tried to explain that this kind of behavior is not normal for her; that she's normally very active and social. Everyone keeps telling me she looks fine. But she's so not fine.
Her weight was down to just over 21 lbs. She weighed 20 lbs. from the time she was 6 months to a year, but had been about 23 lbs. at her last checkup a month or so ago. So she really has lost weight.
This week I've been feeling like I want to stand on a rooftop and scream, "Somebody please listen to me! Something is wrong with my baby. Please make her better. Please, please . . . can't somebody help my baby?"
That's pretty much what I said to the GI doctor, actually. Except for the "please listen to me" part. I wanted to say that, though. I did tear up a couple of times when I was talking to him. I feel like I just can't get anyone to really understand how sick she is.
He made me feel a bit like a hypochondriac crazy overbearing mother, but he does think Baby E could definitely have celiac disease. He said that a lot of her symptoms could certainly point that way, and that about 1 in 100 or 150 people have celiac disease even if they're symptom-free. So he wants to do the endoscopy and blood test.
Or it could be just (just!) the allergies. Either way an endoscopy would give us useful information, he said. We're just going to do the blood draw for the blood test at the same time as the endoscopy, since they'll be putting her under sedation and opening up an IV site anyway.
He also said he'll be putting her on a dextrose IV for the procedure. Dextrose as in corn-derived sugar. I tried to ask him about possible alternatives, telling him I was concerned because Baby E is extremely sensitive to corn. He totally brushed me off. Actually got irritated with me.
"There's no protein in it, so nobody could possibly be allergic to this," he said, "There is nothing in it that anyone could possibly be allergic to, ever. It's just not possible."
This PubMed article and the experiences of a number of people on a corn allergy forum I frequent disagree. It has happened that corn-allergic people have had severe, even anaphylactic, reactions to dextrose IVs.
Maybe it's not a "true" IgE-mediated allergy, but people can and do have unpleasant reactions to derivatives of things even if they contain no detectable protein. Given Baby E's level of sensitivity, it's certainly reasonable to be concerned that it would make her very sick even if it wasn't a truly serious reaction.
I tried to explain that Baby E definitely reacts to even very small traces of corn derivatives in things certified to have no protein--even things that don't actually contain corn but were just grown on corn, like xanthan gum. His response?
"I'm not going to argue with you about it; we are going to do the procedure and this is what we're going to give her."
You know, even if that was necessary it wouldn't have hurt him to at least ACT like he understood my concerns.
I don't care if you do think I'm a crazy overprotective mother; I am going to advocate for my child.
I'm going to find out if there is a corn- and soy-free alternative and have either my pediatrician or my allergist call and ask him about using that instead. Maybe if it's coming from someone other than me he'll take it a little more seriously.
If they absolutely do have to use a corn-derived product in the IV, I'm going to try to make sure they have an epi-pen available just in case she did have a bad reaction.
Meanwhile, we have to keep giving her gluten until after the biopsy and blood draw. She was feeling much better this afternoon, until I gave her a snack of yeast-free spelt bread (spelt does contain gluten) and grapes. Now she's flailing around crying again.
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Posted by purple_kangaroo at 3:16 PM[Permanent link]
5 Comments:
You GO GIRL!!!
Something silly but: eating does make a hungry person even more hungry... did Baby E eat more when she reacted after the snack? It sounds like she is getting lethargic (?sp) b/c of low blood sugar or something. I hope you can get this resolved soon.
Godspeed,
Colleen
I'm popping in from Phantom to offer you my sympathies and understanding. Good for you for being an advocate for your child.
My daughter Tessa is only 23 pounds at two years and nine months...I'm convinced something is preventing her from gaining weight well, but so far all tests haven't proved anything (even a test for celiac). But I've had my share of run-ins with peds--it can be hugely frustrating.
I've been reading nearly everyday, just not knowing what to say... But lifting you all in prayer. I am so sorry your poor baby is going through this, and I'm sorry you are going through this.
If that doctor won't listen FIND SOMEONE who does. Wave flags at these people until they get that an allergic reaction could be possible. I'm so angry for you after reading about how this doctor treated you. What the heck is WRONG with doctors that they can't treat their patients with respect?! Especially the littlest ones.
Anyway... My prayers will continue. Keep pounding out the doctors until you get some answers...
Never think that you are being over-the-top or a hypochondriac: you know your daughter.
And as far as that GI Ped goes: HUMPH! Just because he has "never seen it happen" doesn't mean that it has never or will never. What a load of BS. I'm slightly jaded due to run-ins with our own pediatrician, who, when asked about the pros and cons of vaccinations replied with a simple "You can't believe everything you read on the Internet" and "We vaccinated our own children and therefore, it's safe". Uhhhhhmmmm, yeah. She must think I don't know how to read (or possess any critical thinking skills).
I say: you know your daughter and you've done enough research to be aware of various risks associated with her allergens. An allopathic doctor should AT LEAST listen to your concerns and treat them with validity instead of brushing you off like an annoying fly.
I'm ticked.
Colleen, no. She angrily slapped away any food I tried to offer her. At this point it's unlikely she's getting much nutritional benefit from anything she's eating, anyway.
Aliki, thanks so much for posting. I hope they figure out what's going on with your daughter soon. Did they do an endoscopy/biopsy, or just the blood test for celiac?
being made, thanks. I appreciate your prayers a lot.
A. Borealis, now that I know the package insert says that IV fluid is contraindicated for corn-allergic patients, I am definitely going to find a different GI specialist. That guy could be risking his career for the sake of his ego. And, more importantly, people's lives. Ugh.
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