EoE Timeline
*Scroll Down For Updates* For the future when I forget such things and want to know what took what, and how this went, or when we did what. Or if someone ever wants to know and I don't remember off hand ...
Nov 15: 15 month apt at gen pedi. Vomiting discussed and gen pedi says we can't just wait and see anymore, have to find underlying issue. His weight is stagnant. Refers to specialist. Call to make appt as soon as we leave but they are full up till next week (week of Thanksgiving).
Nov 16: Specialist has a cancellation at last minute we're able to get in the next day. Discuss G's symptoms, how he eats, how he throws up, his bm ... entire digestive process. Doc suggest endoscopy to investigate if issue is in esophagus or stomach or bowel. Longest week(ish) of my life has the endoscopy is scheduled for Monday at 8:30A. Doc also suggests not giving him pediasure any more (for weight) but duocal, which is a supplement that we added to his milk before bed.
Nov 21: Endoscopy done (whew) doc preliminary feels its acid reflux caused by eosinophilic esophagitis. Gives scrip for prev.acid and peri.actin. G had no adverse reaction to the procedure. Was groggy after anesthesia but no vomiting, no motor issues no additional tummy issues. Did have a low key day and watched a lot of television, as motor issues are a problem and they should be kept sort of indoors and quiet. Or so I was told. Saw response to the prevacid immediately. Vomiting stopped that day. He hated the periactin. He took it readily the first few times but then after that he spit it out. Was a major battle to get him to take it (think pinning him to the floor and holding open his mouth and hoping he doesn't inhale it type battle).
On the way to Thanksgiving, get a call from the specialists office that our specialist has been diagnosed with cancer and is taking a leave of absence and we are being assigned to a new doctor. The good news ... I immediately like the new doctor. Bad news, the new doctor does not like the treatment we're on (different docs, different strokes). Wants to change it. I refuse. What we're doing is working. He's perfectly understanding about it. Encourages my research of the condition and asks to have an appt to meet.
Dec 12: Apt downtown at Medical City Childrens. An intimidating place. New specialist is very nice, personable. Tries to play with G but he's shy and not having it. Go through how he's doing (no vomiting, weight is up 2lbs already). He wants to change the meds. I refuse. He relents. It wasn't a big deal or anything, he just said "I'd like to put him on flo.vent." And I said, "But what we're doing is working? And I'm apprehensive of the steroid inhalers." Even though, in my brain, I know that since the allergists found no allergies, treating with an antihistamine makes no sense. He says "Okay, no big deal. Let's just schedule the follow up." Next endoscopy scheduled for December 27th. Doc also says we can stop the peri.actin, since he hates it and it's so traumatic. When we do this I think I see the appetite fall off even more. I try to get him to take more (go so far as get flavored from pharmacy, put it in ice cream, apple sauce, apple juice - still hates it). No improvement.
Dec 27: Endoscopy done. Much smoother this time. For me. G also did fine. Pictures come back and I see immediately the swelling is worse. No issues from this procedure either. Doc does not want to change drugs until the pathology comes back. Keep doing what we're doing. He seems surprised G has not been throwing up more. But he had not.
Jan 3: Doc calls with pathology. EE is 3 to 4x worse than last November. Change medications. Doc says make an appointment to talk about long term care.
Jan 9: Follow up apt. Doc says he will be okay. Since we've taken him off the meds he's thrown up twice. Doc says give the flov.ent two weeks before we do anything different. Is confident we will see dramatic improvement in appetite and vomiting.
Which brings us to today. I need to schedule the next (and last) endoscopy. This one is to confirm that the flo.vent is controlling the inflammation. If the EoE is gone, we will stop the flovent and return to life as normal. If he starts throwing up again, he goes back on the flovent. This continues until he grows out of it (or learns to better deal with it). Doc says that is usually about a year or so. Since there is no apparent food allergy (and no Celiac, based on results from both endoscopes - I asked him to biopsy the second time as well) I'm afraid it may be difficult to keep the inflammation down without medication. But I am putting my faith in the specialist.
In that regard ... he has thrown up two more times since the Jan 9th appointment, but he has not thrown up since Saturday. It will be two full weeks on the meds on Friday, and I do believe we are seeing improvement in both appetite and vomiting. He still is a picky eater but I think that's what I'm going to get to live with. I'm embracing animal crackers as food group as long as he keeps it all down and gains weight. He does seem to have cravings for different types of foods (fruits, veggies, grains) so I'm following his lead and just trying to relax. Not easy for me regarding this issue. I want him to grow and grow well.
I will update this post going forward (and not push it to the top, don't worry), so if anyone ever wants to read what we did or whatever. Sorry if this bored you. But it's mostly for me.
Feb 28: The final (please God) endoscopy was this morning at 830. The surgery center was empty which was a mixed blessing. They got us in right away but we had to wait for the doctor to arrive, which wasn't too long. But, the powers that be had all the toys removed from the pediatric surgery centers lobby. I think that was a such a huge mistake. On the days of these procedures I literally wake G up, change his diaper, and put him in his car seat. If we stayed home, he'd be asking for juice, or food, or both. It would be most unpleasant. And today I told him we were going to go play with the toys at the doctors office. Of which there used to be a lot. Not so anymore. Big mistake you guys. It was such a nice distraction for the hungry kids waiting for their procedures.
Grady recognized the surgical room. He started screaming as soon as we walked in. The doctor and the nurse offered to hold him down for me, while they put the mask over his mouth and face. But I think me standing by and doing nothing would be more traumatic for him than me rubbing his arms and telling him it's going to be okay. So I held his arms and Dr. held his legs. He got kicked. It was funny. It still felt like hyperventilating when the gas kicked in and his legs and arms suddenly go still and his eyes close. It's just such a freaky experience.
I went to the room where I wait. The entire procedure takes twenty minutes. It's blessedly short. The doctor came in and showed me the new pictures. So much better. Even to my untrained eye. He asked me if I saw a difference. I said yes, the last ones I could see instantly how swollen and painful it must have been.
Now we wait for the biopsy results to confirm what he visually diagnoses as a clear throat. If the biopsy shows no eosinophls than we are to stop taking the flo.vent and see what happens. He may be fixed. It may not flare back up. But if it does, we go back on the flo.vent for 6 weeks and then stop again. And we keep doing this until it does not come back.
As with all things medical, it is not an exact science. They have had success with this treatment as most kids outgrow their issues. So here's hoping.
But I told the doctor, the nurses, the nurses at the front desk ... this is the last endoscopy. Three is more than enough. Thankfully it looks like medically he wont need another one, not for this issue. Not any time soon.
Hallelujah!
Below this page break are the pictures. Warning, they are the inside of a persons throat and stomach. But if you are interested ...
It's hard to see because it's just a picture from my camera (remember by computer is broken, hence no scanner). But the important ones to compare are #5, #1 and #1 (the last picture of the first five, and the first pictures in the two next rows); these are all taken from the lower esophagus. The bottom set of 4 pictures are the most recent. The ones on the top are the first.
The thing to note, I say as a lay person, is the smoothness and lack of redness in the last picture. The first picture is red and has some ridges. The second picture, the one that I saw and knew it was worse, it's not red but the swelling is worse and the opening, to me, looked so much smaller. And #2 on the second set (which is improperly labeled, BTW - it says lower of the eosphagus but its really the gastric fundus) looked swollen too, the other two (which are the stomach and the top of the intestines) were normal in all three scopes.
Nov 15: 15 month apt at gen pedi. Vomiting discussed and gen pedi says we can't just wait and see anymore, have to find underlying issue. His weight is stagnant. Refers to specialist. Call to make appt as soon as we leave but they are full up till next week (week of Thanksgiving).
Nov 16: Specialist has a cancellation at last minute we're able to get in the next day. Discuss G's symptoms, how he eats, how he throws up, his bm ... entire digestive process. Doc suggest endoscopy to investigate if issue is in esophagus or stomach or bowel. Longest week(ish) of my life has the endoscopy is scheduled for Monday at 8:30A. Doc also suggests not giving him pediasure any more (for weight) but duocal, which is a supplement that we added to his milk before bed.
Nov 21: Endoscopy done (whew) doc preliminary feels its acid reflux caused by eosinophilic esophagitis. Gives scrip for prev.acid and peri.actin. G had no adverse reaction to the procedure. Was groggy after anesthesia but no vomiting, no motor issues no additional tummy issues. Did have a low key day and watched a lot of television, as motor issues are a problem and they should be kept sort of indoors and quiet. Or so I was told. Saw response to the prevacid immediately. Vomiting stopped that day. He hated the periactin. He took it readily the first few times but then after that he spit it out. Was a major battle to get him to take it (think pinning him to the floor and holding open his mouth and hoping he doesn't inhale it type battle).
On the way to Thanksgiving, get a call from the specialists office that our specialist has been diagnosed with cancer and is taking a leave of absence and we are being assigned to a new doctor. The good news ... I immediately like the new doctor. Bad news, the new doctor does not like the treatment we're on (different docs, different strokes). Wants to change it. I refuse. What we're doing is working. He's perfectly understanding about it. Encourages my research of the condition and asks to have an appt to meet.
Dec 12: Apt downtown at Medical City Childrens. An intimidating place. New specialist is very nice, personable. Tries to play with G but he's shy and not having it. Go through how he's doing (no vomiting, weight is up 2lbs already). He wants to change the meds. I refuse. He relents. It wasn't a big deal or anything, he just said "I'd like to put him on flo.vent." And I said, "But what we're doing is working? And I'm apprehensive of the steroid inhalers." Even though, in my brain, I know that since the allergists found no allergies, treating with an antihistamine makes no sense. He says "Okay, no big deal. Let's just schedule the follow up." Next endoscopy scheduled for December 27th. Doc also says we can stop the peri.actin, since he hates it and it's so traumatic. When we do this I think I see the appetite fall off even more. I try to get him to take more (go so far as get flavored from pharmacy, put it in ice cream, apple sauce, apple juice - still hates it). No improvement.
Dec 27: Endoscopy done. Much smoother this time. For me. G also did fine. Pictures come back and I see immediately the swelling is worse. No issues from this procedure either. Doc does not want to change drugs until the pathology comes back. Keep doing what we're doing. He seems surprised G has not been throwing up more. But he had not.
Jan 3: Doc calls with pathology. EE is 3 to 4x worse than last November. Change medications. Doc says make an appointment to talk about long term care.
Jan 9: Follow up apt. Doc says he will be okay. Since we've taken him off the meds he's thrown up twice. Doc says give the flov.ent two weeks before we do anything different. Is confident we will see dramatic improvement in appetite and vomiting.
Which brings us to today. I need to schedule the next (and last) endoscopy. This one is to confirm that the flo.vent is controlling the inflammation. If the EoE is gone, we will stop the flovent and return to life as normal. If he starts throwing up again, he goes back on the flovent. This continues until he grows out of it (or learns to better deal with it). Doc says that is usually about a year or so. Since there is no apparent food allergy (and no Celiac, based on results from both endoscopes - I asked him to biopsy the second time as well) I'm afraid it may be difficult to keep the inflammation down without medication. But I am putting my faith in the specialist.
In that regard ... he has thrown up two more times since the Jan 9th appointment, but he has not thrown up since Saturday. It will be two full weeks on the meds on Friday, and I do believe we are seeing improvement in both appetite and vomiting. He still is a picky eater but I think that's what I'm going to get to live with. I'm embracing animal crackers as food group as long as he keeps it all down and gains weight. He does seem to have cravings for different types of foods (fruits, veggies, grains) so I'm following his lead and just trying to relax. Not easy for me regarding this issue. I want him to grow and grow well.
I will update this post going forward (and not push it to the top, don't worry), so if anyone ever wants to read what we did or whatever. Sorry if this bored you. But it's mostly for me.
Feb 28: The final (please God) endoscopy was this morning at 830. The surgery center was empty which was a mixed blessing. They got us in right away but we had to wait for the doctor to arrive, which wasn't too long. But, the powers that be had all the toys removed from the pediatric surgery centers lobby. I think that was a such a huge mistake. On the days of these procedures I literally wake G up, change his diaper, and put him in his car seat. If we stayed home, he'd be asking for juice, or food, or both. It would be most unpleasant. And today I told him we were going to go play with the toys at the doctors office. Of which there used to be a lot. Not so anymore. Big mistake you guys. It was such a nice distraction for the hungry kids waiting for their procedures.
Grady recognized the surgical room. He started screaming as soon as we walked in. The doctor and the nurse offered to hold him down for me, while they put the mask over his mouth and face. But I think me standing by and doing nothing would be more traumatic for him than me rubbing his arms and telling him it's going to be okay. So I held his arms and Dr. held his legs. He got kicked. It was funny. It still felt like hyperventilating when the gas kicked in and his legs and arms suddenly go still and his eyes close. It's just such a freaky experience.
I went to the room where I wait. The entire procedure takes twenty minutes. It's blessedly short. The doctor came in and showed me the new pictures. So much better. Even to my untrained eye. He asked me if I saw a difference. I said yes, the last ones I could see instantly how swollen and painful it must have been.
Now we wait for the biopsy results to confirm what he visually diagnoses as a clear throat. If the biopsy shows no eosinophls than we are to stop taking the flo.vent and see what happens. He may be fixed. It may not flare back up. But if it does, we go back on the flo.vent for 6 weeks and then stop again. And we keep doing this until it does not come back.
As with all things medical, it is not an exact science. They have had success with this treatment as most kids outgrow their issues. So here's hoping.
But I told the doctor, the nurses, the nurses at the front desk ... this is the last endoscopy. Three is more than enough. Thankfully it looks like medically he wont need another one, not for this issue. Not any time soon.
Hallelujah!
Below this page break are the pictures. Warning, they are the inside of a persons throat and stomach. But if you are interested ...
The thing to note, I say as a lay person, is the smoothness and lack of redness in the last picture. The first picture is red and has some ridges. The second picture, the one that I saw and knew it was worse, it's not red but the swelling is worse and the opening, to me, looked so much smaller. And #2 on the second set (which is improperly labeled, BTW - it says lower of the eosphagus but its really the gastric fundus) looked swollen too, the other two (which are the stomach and the top of the intestines) were normal in all three scopes.
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