So many doctors so little time
Well Julian survived his big day of doctor appointments and his scope. I'll try to start from the beginning but let me just say as of today, we're not really any better (or worse) off. I think a lot depends on the biopsy results which should take about a week to come in.
GI...
We had to be there at 7:30 but the test wasn't until 8:30 so it was hard entertaining a baby that long especially one who is tired and who wasn't allowed to eat anything past 6:30 am all the while preventing him from stuffing every germ ridden toy into his mouth. Apparently the 2 toys I brought for him were not nearly as appealing. Time was dragging and naturally the doctor is stuck in traffic. The window of a calm baby was rapidly closing. Finally at 9 we went back to the room. The doc said it wouldn't hurt him because it's all superficial to which I responded "I don't see how something going in his butt wouldn't be uncomfortable." She said once the scope was over they would bring me back in and we'd discuss. HOLD UP. I'm not in the room with him while this goes on? She said I could be she leaves it up to the parents and usually they never want to see it. My theory, if Julian has to go through it then so do I. The least I could do was be in the room. When I asked how they keep him still she said one nurse holds his arms and the other holds his legs. HOLD UP. I can't hold him? Wouldn't it be more comforting if I held him? Again she said the parents usually don't want to but if I was up for it I'm more than welcome. I did.
They had him on his side and I was making him smile and then, this is where my heart jumps out of my chest and drops onto the floor, his smile turns into a confused and sad raging scream. I felt so bad I wanted to scoop him up and run while apologizing saying "I'm sorry this isn't necessary!!" But no turning back. When he started crying they kept saying "We haven't done anything yet Julian." So I think he was scared more than anything. Then they started and he kept crying but I was leaning over laying my head on his talking into his ear, trying to eat his hand to make him smile all the while making myself look and feel happy to help him know it's OK. He actually calmed down and stopped crying. I don't know if it was because they finally got "in" or if he realized it wasn't that bad or if I helped. I like to think I was beneficial in some way. After that very long 5 minutes it was over.
Once it was all over he was fine, I fed him immediately, he only had 2 big poops after, not much gas, but he was very tired. He fell asleep on me while I talked with the doctor, that never happens.
She told me it did look like MILD allergic colitis but the biopsies will confirm. She still thinks I can probably keep breastfeeding. If the biopsies come back as "moderate" she may suggest Nutramigen, if they come back "severe" then she'll probably recommend going right to Neocate. But she isn't expecting to see anything that bad. Most of my questions weren't relevant until we had the results back. I asked what the extent of the internal damage looked like and she said mild. I asked what were the reprocutions if I were to keep breastfeeding him if she didn't think I should. I asked about him possibly getting medication for the reflux, which seems to be slowly creeping back, and she said she wanted to wait for the biopsies. If he ends up going on formula then she doesn't want to put him on formula and meds. If he doesn't need formula then we need to see just how bad if it warrants medication. I kind of feel that either the carrots and/or squash are causing the reflux so I'm doing tests to see. At least with the reflux it seems to be much easier to diagnose than what is causing bad poop. The reflux seems to come quickly and go away quickly once the offending foods are removed. So anyway she couldn't really give me a plan of action until we have results. I asked a lot more questions but nothing that is really beneficial to posting.
The GI's feelings are still pretty much the same, that the dairy/soy upset the bowel causing him to be sensitive to all foods. I PERSONALLY feel that the dairy/soy upset the bowel AS WELL AS oversupply causing him to be sensitive to everything. I'm not sure if you remember a while back oversupply was one of my theories for his problems. I was treating it by doing what is called block feeding in 4 hour blocks. When I didn't see an improvement I threw that theory out the window. I just revisited it this past weekend. But this time I'm doing 8 hour blocks AND ever since then his poops have been the perfect shade of yellow! Not the freaky green. There is still blood but I'm hoping by treating the oversupply things will be able to start healing a little better. The only problem is that none of his doctors have heard of the oversupply thing (which causes a foremilk/hindmilk imbalance in breastfed babies, symptoms include green watery stools as well as blood in the stool. Sound familiar?) So I'll just stick to doing my own detective work since I'm the only one who seems to be getting us somewhere. Even with oversupply it would take at least 3 weeks for the gut to heal so I'm hoping we will see less and less blood. The GI didn't know what I was talking about but seemed to think if it's helping, great.
Allergist...
After the scope we came home and took a little nap before heading out to see the allergist. Julian seemed to be doing fine and in good spirits so I thought he could handle it, especially since there wasn't going to be any real testing to do.
At the allergists office a lady calls us back but I noticed she isn't dressed like a nurse or a physician's assistant...she's dressed more like a doctor. And she seemed a little uneasy. Then I heard it. "I'm so and so and I'm a medical student and I'll be with you first, blah blah, if that's OK?" Do you know how much I hate getting the students? I DESPISE getting the students. I should have said, I waited 3 months for this appointment to see THIS doctor, heck if I'm gonna deal with a student. But I didn't say that and for some reason said it was fine. I figured she would just do the first few minutes like the unimportant stuff but she spent more time alone with us than I would have liked. She went out and I could hear her telling the doctor our story and then she comes back in because she forgot to ask me something. I almost told her just to get the doctor in there but again I didn't. Fortunately he came in after that.
He told me he'd normally do a skin test but the last allergist already did and even though he didn't test him for a whole lot, the chances of him showing positive to other things after testing negative to dairy/soy and other major foods were like 1%, especially at his age so no testing was done. He'll retest him in a year though although with his non-IgE allergies they will probably never show on a test. He told me they really try to work with the mother's preference to breastfeed so he is all for me to continue IF we do a few things (ha! the other allergist kept trying to tell me I had to go to formula!) He did say he may change his mind after seeing the scope biopsy results but he doesn't feel it will be necessary to go to formula.
So these "few things" I was expecting him to say do a formula trial to let the gut heal and to add a bunch of food back to my diet like all meat and vegetables. But he never suggested a formula trial and he only wants me to add a couple of things back every 3 or 4 days. He said I should know if it's causing problems by then. I'm really excited, and skeptical, of adding new food. But then he told me to start with chicken. Yee haw. I hate chicken and is it really any more of a variety then turkey?? But he also said to add corn back. I was really surprised about the corn. He said it's frequently blamed but rarely the cause. I know a lot of people that would disagree with him. But he said with corn I will have a lot more variety because there are pure corn cereals and he even said I could then have Fritos. Not my snack food of choice but I'LL TAKE IT. I asked about oat and he said that would be next. But I will probably never be able to have dairy/soy, nuts and egg while I'm breastfeeding him unless I am breastfeeding until he's 3 years old. So to me that means never enjoying a meal out while breastfeeing. But it will be worth it.
He said there is a very good chance he'll outgrow this by 1 year (no longer 6 months) but a really, really good chance he'll outgrow it by 2. Ugh, I hadn't even thought it would be that long. His feelings, along with the GI, are that since he's growing, blood isn't that much and doesn't get worse, same old stuff, we can keep doing this and he'll most likely outgrow it. I asked him if I keep exposing him to something he's allergic to if it could cause this to become a life long allergy and he said there is a very small risk, usually more of a risk with IgE allergies, but if he felt it was a risk to worry about he wouldn't suggest I keep breastfeeding. I said I was not OK with the blood but now that his poop is pretty normal looking aside from that I feel more at ease about it. It's when he had chronic green slime diareah with blood I was not happy about it. I still don't think it's good but doesn't freak me out AS much. And it might just freak me out a lot less than the stress of putting him on formula.
He also said I can add back any yellow vegetables (another yipee, I could only think of squash and corn??) and the basic fruits, apples, bananas, peaches. I'm cool with that. No citrus yet. He wasn't surprised the potatoes caused him problems. I thought that was one of the safer things but guess it's a little more common than I thought. I think sweet potatoes are supposed to be the safest. I know I said I pulled sweet potatoes but really I was eating Yams because the produce guy told me they were the same thing and in our grocery store they are in bins that say "Sweet Potatoes and Yams" all mixed together. So I had no clue there was a difference, I now know sweet potatoes are white on the inside. Anyway...I never knew if it was the potatoes or Yams causing the problem so I pulled them both. I MAY try SWEET potatoes again sometime but not anytime soon. I'll probably try to give them directly to Julian as a solid so they aren't lingering in my system and then in his.
He thinks it's safe to start Julian on solids at 6 months which is good. There is no way I can hold him off longer I can tell. He told me it's fine that I don't start with Rice cereal since I didn't want to as it's pretty nutritionally void (aside from the iron). I could start with any of the fruits or vegetables, but I'll be making my own. The Dr. wanted to check his blood count for iron levels because there is the chance of anemia. He doesn't want to wait until he's 1 to check to find out he's severely anemic then wonder how long he's been severely anemic. The doc did say he'll probably want him on an iron supplement so it's not crucial I give him iron fortified cereal and actually recommended the brand, Kirkman, that is the safe multi I take which took me forever to find.
Other than that I don't feel there was too much noteworthy, again a lot depends on the biopsy results so I'm glad I had them done. Almost everything he said goes against my research and what people from my support group recommend. I usually really concider what they say since they've actually experienced this stuff first hand. But since I'm getting mentally exhausted I'm going to just listen to what this doctor tells me...for now.
Now although I'm going to put some trust into this doctor I did make the executive decision to do a few more food trials that I probably shouldn't. I'll wait until I make it through the food trials he recommended but I am feeling too deprived (read: miserable) to keep this going. So ever so slowly, one at a time, I'm going to try the following not necessarily in this order: Hot Tamales, Sprite, store bought Rice Milk (making it is a pain plus it'll be calcuim fortified) various spices and oils and maybe even decaf coffee and this dairy/soy free chocolate you can order online. Those will be my guilty pleasures. I kind of feel with the oversupply treatment helping that maybe I have a lot more food options than I thought. And who knows the blood may just go away with block feeding!!
After all that we had to go to the lab for his blood test. Julian had fallen asleep on me again while talking to the doctor. He even remained asleep when I laid him on the exam table to put my sling back on and put him in the sling. So while I was waiting for the lab I decided to ask the girl if she could just do the heal prick while he was alseep in the sling since his feet where hanging out. But then he woke up but I decided it would still probably be better for him if he could stay in the sling. So when I got in there I asked and she told me she needed to draw the blood from his arm. What?! NOOOOOO. Not a needle in my poor baby's arm! I felt so bad putting him through all this in one day. I couldn't tell if it was better to just get it all over with or what. So I did since I was there. He sat on my lap while she searched for his vein. He was watching her so intently and I could feel his breathing getting faster and faster like he does when he gets nervous. She put the needle in and he squirmed a little and I could see her searching for the vein beneath his chub. I'm thinking please find that vein quick! His face contorted and turned into that look where he's about to let out a huge scream but then she found the vein and I kept cheering him on and he never screamed. Then it was over and I did the "Yaaaay, Julian!" and clapped his hands which usually makes him smile. He gave a little smirk. Let me tell ya, this kid has the patience of a Saint.
We might have a better plan after we get the results so I'll keep you updated.
GI...
We had to be there at 7:30 but the test wasn't until 8:30 so it was hard entertaining a baby that long especially one who is tired and who wasn't allowed to eat anything past 6:30 am all the while preventing him from stuffing every germ ridden toy into his mouth. Apparently the 2 toys I brought for him were not nearly as appealing. Time was dragging and naturally the doctor is stuck in traffic. The window of a calm baby was rapidly closing. Finally at 9 we went back to the room. The doc said it wouldn't hurt him because it's all superficial to which I responded "I don't see how something going in his butt wouldn't be uncomfortable." She said once the scope was over they would bring me back in and we'd discuss. HOLD UP. I'm not in the room with him while this goes on? She said I could be she leaves it up to the parents and usually they never want to see it. My theory, if Julian has to go through it then so do I. The least I could do was be in the room. When I asked how they keep him still she said one nurse holds his arms and the other holds his legs. HOLD UP. I can't hold him? Wouldn't it be more comforting if I held him? Again she said the parents usually don't want to but if I was up for it I'm more than welcome. I did.
They had him on his side and I was making him smile and then, this is where my heart jumps out of my chest and drops onto the floor, his smile turns into a confused and sad raging scream. I felt so bad I wanted to scoop him up and run while apologizing saying "I'm sorry this isn't necessary!!" But no turning back. When he started crying they kept saying "We haven't done anything yet Julian." So I think he was scared more than anything. Then they started and he kept crying but I was leaning over laying my head on his talking into his ear, trying to eat his hand to make him smile all the while making myself look and feel happy to help him know it's OK. He actually calmed down and stopped crying. I don't know if it was because they finally got "in" or if he realized it wasn't that bad or if I helped. I like to think I was beneficial in some way. After that very long 5 minutes it was over.
Once it was all over he was fine, I fed him immediately, he only had 2 big poops after, not much gas, but he was very tired. He fell asleep on me while I talked with the doctor, that never happens.
She told me it did look like MILD allergic colitis but the biopsies will confirm. She still thinks I can probably keep breastfeeding. If the biopsies come back as "moderate" she may suggest Nutramigen, if they come back "severe" then she'll probably recommend going right to Neocate. But she isn't expecting to see anything that bad. Most of my questions weren't relevant until we had the results back. I asked what the extent of the internal damage looked like and she said mild. I asked what were the reprocutions if I were to keep breastfeeding him if she didn't think I should. I asked about him possibly getting medication for the reflux, which seems to be slowly creeping back, and she said she wanted to wait for the biopsies. If he ends up going on formula then she doesn't want to put him on formula and meds. If he doesn't need formula then we need to see just how bad if it warrants medication. I kind of feel that either the carrots and/or squash are causing the reflux so I'm doing tests to see. At least with the reflux it seems to be much easier to diagnose than what is causing bad poop. The reflux seems to come quickly and go away quickly once the offending foods are removed. So anyway she couldn't really give me a plan of action until we have results. I asked a lot more questions but nothing that is really beneficial to posting.
The GI's feelings are still pretty much the same, that the dairy/soy upset the bowel causing him to be sensitive to all foods. I PERSONALLY feel that the dairy/soy upset the bowel AS WELL AS oversupply causing him to be sensitive to everything. I'm not sure if you remember a while back oversupply was one of my theories for his problems. I was treating it by doing what is called block feeding in 4 hour blocks. When I didn't see an improvement I threw that theory out the window. I just revisited it this past weekend. But this time I'm doing 8 hour blocks AND ever since then his poops have been the perfect shade of yellow! Not the freaky green. There is still blood but I'm hoping by treating the oversupply things will be able to start healing a little better. The only problem is that none of his doctors have heard of the oversupply thing (which causes a foremilk/hindmilk imbalance in breastfed babies, symptoms include green watery stools as well as blood in the stool. Sound familiar?) So I'll just stick to doing my own detective work since I'm the only one who seems to be getting us somewhere. Even with oversupply it would take at least 3 weeks for the gut to heal so I'm hoping we will see less and less blood. The GI didn't know what I was talking about but seemed to think if it's helping, great.
Allergist...
After the scope we came home and took a little nap before heading out to see the allergist. Julian seemed to be doing fine and in good spirits so I thought he could handle it, especially since there wasn't going to be any real testing to do.
At the allergists office a lady calls us back but I noticed she isn't dressed like a nurse or a physician's assistant...she's dressed more like a doctor. And she seemed a little uneasy. Then I heard it. "I'm so and so and I'm a medical student and I'll be with you first, blah blah, if that's OK?" Do you know how much I hate getting the students? I DESPISE getting the students. I should have said, I waited 3 months for this appointment to see THIS doctor, heck if I'm gonna deal with a student. But I didn't say that and for some reason said it was fine. I figured she would just do the first few minutes like the unimportant stuff but she spent more time alone with us than I would have liked. She went out and I could hear her telling the doctor our story and then she comes back in because she forgot to ask me something. I almost told her just to get the doctor in there but again I didn't. Fortunately he came in after that.
He told me he'd normally do a skin test but the last allergist already did and even though he didn't test him for a whole lot, the chances of him showing positive to other things after testing negative to dairy/soy and other major foods were like 1%, especially at his age so no testing was done. He'll retest him in a year though although with his non-IgE allergies they will probably never show on a test. He told me they really try to work with the mother's preference to breastfeed so he is all for me to continue IF we do a few things (ha! the other allergist kept trying to tell me I had to go to formula!) He did say he may change his mind after seeing the scope biopsy results but he doesn't feel it will be necessary to go to formula.
So these "few things" I was expecting him to say do a formula trial to let the gut heal and to add a bunch of food back to my diet like all meat and vegetables. But he never suggested a formula trial and he only wants me to add a couple of things back every 3 or 4 days. He said I should know if it's causing problems by then. I'm really excited, and skeptical, of adding new food. But then he told me to start with chicken. Yee haw. I hate chicken and is it really any more of a variety then turkey?? But he also said to add corn back. I was really surprised about the corn. He said it's frequently blamed but rarely the cause. I know a lot of people that would disagree with him. But he said with corn I will have a lot more variety because there are pure corn cereals and he even said I could then have Fritos. Not my snack food of choice but I'LL TAKE IT. I asked about oat and he said that would be next. But I will probably never be able to have dairy/soy, nuts and egg while I'm breastfeeding him unless I am breastfeeding until he's 3 years old. So to me that means never enjoying a meal out while breastfeeing. But it will be worth it.
He said there is a very good chance he'll outgrow this by 1 year (no longer 6 months) but a really, really good chance he'll outgrow it by 2. Ugh, I hadn't even thought it would be that long. His feelings, along with the GI, are that since he's growing, blood isn't that much and doesn't get worse, same old stuff, we can keep doing this and he'll most likely outgrow it. I asked him if I keep exposing him to something he's allergic to if it could cause this to become a life long allergy and he said there is a very small risk, usually more of a risk with IgE allergies, but if he felt it was a risk to worry about he wouldn't suggest I keep breastfeeding. I said I was not OK with the blood but now that his poop is pretty normal looking aside from that I feel more at ease about it. It's when he had chronic green slime diareah with blood I was not happy about it. I still don't think it's good but doesn't freak me out AS much. And it might just freak me out a lot less than the stress of putting him on formula.
He also said I can add back any yellow vegetables (another yipee, I could only think of squash and corn??) and the basic fruits, apples, bananas, peaches. I'm cool with that. No citrus yet. He wasn't surprised the potatoes caused him problems. I thought that was one of the safer things but guess it's a little more common than I thought. I think sweet potatoes are supposed to be the safest. I know I said I pulled sweet potatoes but really I was eating Yams because the produce guy told me they were the same thing and in our grocery store they are in bins that say "Sweet Potatoes and Yams" all mixed together. So I had no clue there was a difference, I now know sweet potatoes are white on the inside. Anyway...I never knew if it was the potatoes or Yams causing the problem so I pulled them both. I MAY try SWEET potatoes again sometime but not anytime soon. I'll probably try to give them directly to Julian as a solid so they aren't lingering in my system and then in his.
He thinks it's safe to start Julian on solids at 6 months which is good. There is no way I can hold him off longer I can tell. He told me it's fine that I don't start with Rice cereal since I didn't want to as it's pretty nutritionally void (aside from the iron). I could start with any of the fruits or vegetables, but I'll be making my own. The Dr. wanted to check his blood count for iron levels because there is the chance of anemia. He doesn't want to wait until he's 1 to check to find out he's severely anemic then wonder how long he's been severely anemic. The doc did say he'll probably want him on an iron supplement so it's not crucial I give him iron fortified cereal and actually recommended the brand, Kirkman, that is the safe multi I take which took me forever to find.
Other than that I don't feel there was too much noteworthy, again a lot depends on the biopsy results so I'm glad I had them done. Almost everything he said goes against my research and what people from my support group recommend. I usually really concider what they say since they've actually experienced this stuff first hand. But since I'm getting mentally exhausted I'm going to just listen to what this doctor tells me...for now.
Now although I'm going to put some trust into this doctor I did make the executive decision to do a few more food trials that I probably shouldn't. I'll wait until I make it through the food trials he recommended but I am feeling too deprived (read: miserable) to keep this going. So ever so slowly, one at a time, I'm going to try the following not necessarily in this order: Hot Tamales, Sprite, store bought Rice Milk (making it is a pain plus it'll be calcuim fortified) various spices and oils and maybe even decaf coffee and this dairy/soy free chocolate you can order online. Those will be my guilty pleasures. I kind of feel with the oversupply treatment helping that maybe I have a lot more food options than I thought. And who knows the blood may just go away with block feeding!!
After all that we had to go to the lab for his blood test. Julian had fallen asleep on me again while talking to the doctor. He even remained asleep when I laid him on the exam table to put my sling back on and put him in the sling. So while I was waiting for the lab I decided to ask the girl if she could just do the heal prick while he was alseep in the sling since his feet where hanging out. But then he woke up but I decided it would still probably be better for him if he could stay in the sling. So when I got in there I asked and she told me she needed to draw the blood from his arm. What?! NOOOOOO. Not a needle in my poor baby's arm! I felt so bad putting him through all this in one day. I couldn't tell if it was better to just get it all over with or what. So I did since I was there. He sat on my lap while she searched for his vein. He was watching her so intently and I could feel his breathing getting faster and faster like he does when he gets nervous. She put the needle in and he squirmed a little and I could see her searching for the vein beneath his chub. I'm thinking please find that vein quick! His face contorted and turned into that look where he's about to let out a huge scream but then she found the vein and I kept cheering him on and he never screamed. Then it was over and I did the "Yaaaay, Julian!" and clapped his hands which usually makes him smile. He gave a little smirk. Let me tell ya, this kid has the patience of a Saint.
We might have a better plan after we get the results so I'll keep you updated.
posted by Julian at 11:23 PM
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