 | ParentsSpending Time in the HospitalPosted Monday, November 5th, 2007 and visited 766 times, 2 so far today by MInTheGap |
I would appreciate prayer for our oldest. It’s been quite the past few days:
For the past few weeks he has complained of stomach cramping or needing to lie down. On this past Thursday he had one of these episodes and my wife decided to take him to the doctor. They gave him an X-Ray and it showed a big mass of gas. At that time the doctors guessed that he had a partial blockage in his stomach. They wanted us to come back Friday morning for an upper GI.
Friday morning he took the upper GI (with a fight because the barium tastes awful) and they said that there was no blockage, but they thought that he might have a mal-rotated abdomen. At that point they said that it was practically an emergency, and we had to travel to a bigger hospital an hour away to see a pediatric surgeon.
Once there, we waited a while, and he got an IV– by someone that was in training. So, our little trooper ended up getting stuck, having the person go through the vein, and then having to get stuck again. Hearing your little one ask you why he has to go through this, and asking for help– man.
Fortunately, they ran another upper GI (this time running the barium through his nose (and my wife and I having to leave the room as four doctors had to do this)) and found that the abdomen is fine.
So, no answers, and yet he still acts lethargic at least once a day. The only thing that we can think of is that it could be related to a milk intolerance– he used to throw up or have diarrhea every time he had it when he was younger but we thought he had grown out of it.
We were told to follow up with a Pediatric Gastro-Intestinal Doctor when they get in. I don’t want him to have to have an IV again– don’t know if I could take it!– nor do I want him to have to have a scope down his stomach. So, we’re keeping track of everything he’s eating in the hopes that we can figure out what it is.
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November 5th, 2007 at 10:35 am Subscribed to Comments
I will be praying for your son, Min. I have been very ill with digestive problems since birth and have been to numerous doctors for crazy amounts of tests, yet nothing was ever found out until I was eighteen. My earliest symptoms were similar to your sons and my first diagnosis was a “milk allergy” with a quick fix to soy formula. Then they diagnosed my problems as “being in my head,” followed by IBS, and finally, at eighteen years old, a soy allergy and ceiac disease. Dealing with stomach issues is very frustrating and painful for all involved. :o(
I would HIGHLY, HIGHLY encourage y’all to request the doctor to conduct the blood test for the celiac disease antibody. Doctors typically will not test for celiac disease is a basic battery of tests, as it is (wrongly) considered a “wasting disease”, and if a person looks healthy, the logic is they are not “wasting away.” This is very unfortunate as *many* people are never diagnosed, or like me, are not diagnosed to much later in life. The test is simple and the fix is not invasive (a gluten free diet), so ideally this should be one of the first conditions ruled out, especially with how common this disease is. Also, with undiagnosed celiac disease, it is not uncommon to have problems with other allergenic foods until the intestines have begun the healing process. Sometimes a milk allergy could be hiding this disorder if the blood test is not done. If your little one does test positive, please do not hesitate to contact me for some yummy gluten free recipes ;o) I have been doing this for several years now, so some favorite ones have been found! My sister could also contribute some milk/dairy free recipes.
You may also want to bring up the idea of a total elimination diet to the doctor. Milk, wheat, and other allergens lurk in foods under different names, so in order to go on a fully “clean” diet, you and your wife will need to be aware of all the trick names. My parents and I were amazed when we learned what each ingredient really is in food :o( Following a completely allergen free diet, and then “testing” it one allergen by one allergen was how my soy allergy was finally discovered.
If milk is the culprit, be sure they find out if he is lactose intolerant or actually *allergic* to milk. There is a difference between the two, but it seems this is not always made clear, which certainly makes it more difficult for parents to help their child avoiding the offending substance. My sister has a casein allergy and her health made vast improvements after my parents learned of this fact. :o)
There is a wonderful, informative book called “Breaking the Vicious Cycle” that has taught me a lot, and really helped me get on the way to healing.
I apologize for what might seem like an icky “know it all” comment; I certainly do not mean it to come across that way. I may not know what this situation is like as a parent, but I do *fully* understand from the other side, and knowing that another child is going through what I did is heartbreaking to me. Poor little guy! :o( We will be hoping & praying that your son is feeling better soon and a diagnosis of some sort may be found very quickly.
November 6th, 2007 at 10:37 am Subscribed to Comments
Praying for you and your son. I despise IV’s myself (all needles, actually) and had to hold my 1 yo daughter down for her to receive one, so I understand your feelings. I’m praying y’all will not have to go through that again!
November 6th, 2007 at 11:08 am
Thanks for your prayers, Mrs. Brigham and Revka. Right now, we’re writing down everything that goes in and out. I’m praying that we’ll be able to figure out if there’s some kind of trigger that we can do without having to get too radical. This son has had another mystery type illness when he was younger that the doctors never figured out as well.
Mrs. Brigham, thanks for telling me about the whole misdiagnoses experience. While I’m not sure that he has the same thing, it will definitely make me more vigilant and I’ll make sure to ask more questions. I’m getting more and more under the opinion that if it’s not routine doctors really don’t know what to look for.
November 6th, 2007 at 3:12 pm Subscribed to Comments
wow! I can’t imagine the distress this must cause you and your wife as parents, and your poor little man having to endure all that! How miserable! I’m praying for all of you. That a correct diagnosis will be found soon accompanied by an easy cure!
November 6th, 2007 at 5:23 pm
The doctor today said that it’s possible that he has acid reflux, milk intolerance and celiac disease. My immediate reaction is that it’s probably the first two and not the latter, but I’m definitely open to running the blood test to make sure it isn’t the last.
The last one doesn’t seem to make sense because he has had no issue, up until recently, and still does not have a problem with whole wheat bread or anything containing gluten, but he has always had trouble with milk based products. Milk intolerance and celiac disease have a lot of parallels as far as symptoms are concerned.
Where are we going from here? Limiting if not eliminating milk based products to see if there’s any change, scheduling a appointment with a GI specialist (current date estimates put the appointment sometime in early December) and trying to schedule the test for celiac– but may wait a bit for this simply because of the trauma from the IV last Friday.
November 6th, 2007 at 6:06 pm Subscribed to Comments
I am glad to hear that an appt will soon be had with the GI doctor. Hopefully something will be discovered to get your little one back on his feet.
Do be sure to keep an open mind about whatever diagnosis are being thrown around right now, but also do not worry too much until you see the GI doc & have something confirmed/denied. All three of these problems are typically interlinked and, in fact, caused by one another. Celiac disease damages the villi in the intestines, which often causes issues digesting milk proteins and other foods. When one part of the digestive tract is not functioning correctly, the *entire* GI tract will be in “crisis mode,” hence gas, reflux, vomiting, diarrhea & whatever else might creep up. It is not unusual for a celiac to no longer have *any* problems with milk once their villi begin the healing process.
It is nearly impossible to determine any sort of allergy or intolerance without a blood test or *full* elimination diet, but this is especially true when wheat, gluten, & milk are the substances in question, as these two foods (along with soy & corn) are in nearly every processed food product on the market and are frequently hidden (malt, dye #whatever, natural flavoring, caramel coloring, etc). Gluten is also the binder in most medications & supplements. Also important to note is the fact that any food allergy or intolerance will always be a problem, HOWEVER, a person can go through a time when the symptoms are less apparent or seem to be gone. It is not uncommon for a child to be ill with their stomach for years, only to have the problem go away around puberty, and come back again during a time later in life, especially after a physically stressful time (pregnancy, injury, surgery, etc).
Prayers will be being said for y’all! :o)
November 7th, 2007 at 10:00 am
Thanks for the reassurance, Mrs. Brigham. I will admit that the thought of all that has to happen to go gluten free is scary. My pastor, who is now going through treatment for intestinal lymphoma started out with celiac disease and we’ve heard the horror stories.
He’s had a problem with milk, though, since he was 3 months old– and it is something that runs in my wife’s family. Right now, we’re doing no dairy for a couple days and he seems to be doing better– much better than he has. He’s still doing any gluten based food we are all eating and other than maybe a little bloating (hard to tell) he doesn’t have the pain.
And it is difficult to be able to get reliable information with him– because of his age. Is he really hungry after he’s just eaten or is it something else?
I’ll keep you guys posted.
November 8th, 2007 at 11:07 am Subscribed to Comments
Oh MIn, I’m just seeing this! You’ve gotten some excellent advice from Mrs. Brigham, and I second all of it. That celiac disease is cropping up all around the place. While the gluten-free diet may seem extreme, just think of how much worse his diagnosis could be. Then again, let’s hope it is a milk allergy…
Hurting for all of you, that IV experience would have been excruciating on everyone. WHY do they let trainees train on children??? I’m so sorry, and we’ll be praying!
November 8th, 2007 at 11:10 am
Well, yesterday was his best day yet. It’s been two days without milk (kinda– milk in pancakes for breakfast yesterday morning) and no complaints as far as either being lethargic or stomach pain. He still appears to have a firm tummy after eating (bloating?) but not as bad as it has been.
I mentioned over on MInTheGap that my Pastor is going through treatments for cancer. That started as celiac disease and progressed into intestinal lymphoma. I just found out last night that his oldest daughter has just been diagnosed as having celiac disease as well. Fortunately they’re catching it early, even though I’m sure that it’s strange for both father and daughter.
November 8th, 2007 at 11:19 am Subscribed to Comments
So glad to hear your son is feeling somewhat better. He’s had long enough to feel “off”.
I’ve heard that celiac disease lurks undiagnosed in your body until your body just can’t hide it anymore, and by then you’ve got all sorts of problems. My mil had/has it, but she went through a “honeymoon” period after years of eating no wheat/gluten she was able to eat it again with no side effects. Sadly, she only had a year of being able to eat these things before her body reacted in a whole new way of rejection. Now if she has even a crumb of the forbidden foods, she swells up everywhere…eyelids swell till she can’t even see, she’s scared to sleep at night for fear her throat will swell closed… That it progresses into cancer frightens me. I’ve heard it’s very genetic and someone outside of our family who also has celiac has been prodding my dh to get tested. So far he has no symptoms, but they say the sooner you find it, the better.
Praying for your pastor and his daughter, and, of course, your son!
Mary
November 8th, 2007 at 2:13 pm
They told me at the doctor’s that they have to train on kids because they are different than adults. In fact, I heard them out in the hall later talking about what the girl did wrong and they had something to practice on.
As far as celiac– it’s a strange thing. Never having heard about it and now it’s everywhere. It makes you wonder whether we just never have a test of it or whether something has brought this thing on.
He seems to have no problems with anything that contains gluten (whole wheat bread, peanut butter, etc.) but we have been having him drink more milk recently. He was drinking milk out of his cereal bowl, and we were having him drink it in chocolate versions, etc. We thought it was healthy for him, even though it was very difficult.
Now I’m beginning to wonder if we were the cause of the whole problem.
November 9th, 2007 at 11:07 am
Yesterday was a good one. Our little guy had a little milk with his breakfast cereal, and though he may have had a little bloating he behaved like normal. Still watching and waiting, though.
November 9th, 2007 at 12:29 pm Subscribed to Comments
Awwwwwwwww, that’s my little guy!!! I’m praying for you guys!!!
November 13th, 2007 at 9:50 am
Saturday we had some nasty dougnuts for breakfast, and though we thought better of it, we actually offered him some pizza at a party that we went to. He didn’t eat it, though he did eat a couple of apples.
After the party, he asked for a sandwich, and we gave him one (he’d been eating these all week) and my dad and I took him and his brother out to return something to the auto junk yard.
He didn’t look good on the way, and once we got there he asked for something to drink (because he said he was going to throw up) and then he did. Not anything forceful or projectile.
In any case, after that he picked right up, and was relatively fine the rest of the day.
Sunday he said he needed a drink, but didn’t throw up. I wonder if he’s allergic to weekends.
He’s laid down a couple of times, but doesn’t really complain about his stomach. He did toss and turn last night, but he said it was because he was cold.
We tried to get the blood test done yesterday, but they said that they didn’t think they could get a vein in the non-IV arm, and told us to come back next week to try the IV-arm (because it is still bruised).
So, we’re still waiting on the tests and wondering what’s going on.
November 13th, 2007 at 12:16 pm Subscribed to Comments
Hm, whatever it is, seems like he must be highly sensitive to it. We’ll be praying that the next IV experience goes better. It’s going to be hard to convince him to undergo that again, and you can’t offer ice cream as an incentive–assuming he’s sensitive to it! (We always did ice cream after shots, etc, if the kids were brave!)
Are you still writing down everything he’s eating? It might be something he still had in his system from the night before, you know, maybe it’s just taking a while to affect him. Though food allergies are pretty immediate from what I understand.
November 13th, 2007 at 2:16 pm
Well, best case scenario it was the doughnut from that morning– which made even my wife nauseated. Worst case it is what he threw up– a peanut butter and jelly sandwich (which he’d been having all week).
We stopped keeping track when he appeared to be getting better.
We had a gift that he could have after the test, but my wife told him that he could have it and showed him it, and then after the test could not be run it was hard to tell him that he actually had to get poked to get it…
Oh well.
November 14th, 2007 at 11:27 am
Well, last night was interesting. Due up on the meal schedule was some kind of turkey surprise or mystery or something (only with chicken?) and it had milk, eggs, and cheese in it. He didn’t seem to have any reaction to that.
However, when he had a bunch of M&MS later on he started saying that his belly was full of M&MS and he was tired. No talking of throwing up, and he acted ok, but it just keeps the mystery going.
November 14th, 2007 at 12:52 pm Subscribed to Comments
Sugar? If doughnuts and m&m make him feel bad, I wonder if he has a candida yeast overgrowth. Has he been on antibiotics much in the past year? If he has, then all his good bacteria (which aids in digestion) is probably shot to pieces…you know how drs used to prescribe acidophilus to people on antibiotics, to protect their good bacteria? It’s still a good idea. The antibiotics kill ALL the bacteria, good and bad. And the good bacteria is essential for good digestion. You might google “Candida yeast overgrowth in children” and see if any symptoms come up that sound familiar.
November 14th, 2007 at 1:15 pm Subscribed to Comments
Here’s a link to a post I wrote a while back about Candida, it reminded me that Candida feeds on sugar…maybe some info here will shed some more light.
http://homesteepedhope.com/200.....s-candida/
Then I found this: http://www.detoxmychild.org/yeast_overgrowth.htm
which mentioned: The ‘spaciness’ or ‘mental fog’, often described by, is one of the most frequent symptoms of candidiasis.
Anyhow, there’s a lot on the net about it. Something to think about!
November 26th, 2007 at 5:56 pm
It’s been a good couple of weeks– with no problems with throwing up or even being lethargic. Until today.
Yesterday we thought he may have been acting a bit lethargic, but it wasn’t to the point that it was before. He also said that his tummy hurt after breakfast (or each meal) but one time he said it was on his side and another it was on his middle.
Today, after lunch he went and laid down on the couch. We’re wondering if it’s the cheese stick and pizza (we’d stopped doing the lactose-free thing after a couple of tries where he seemed fine).
We still haven’t done the blood work for celiac– 7 vials scares me– but we’re still leaning toward milk. He visits the GI doctor next Thursday.
November 26th, 2007 at 6:04 pm Subscribed to Comments
Maybe it is only noticeable when he’s had several dairy foods together? That’s too bad, I was hoping no news meant good news. Hopefully the GI specialist will have some non-invasive answers/suggestions to try.
7 vials would scare me too. How to prepare a young child for that esp after he’s already had a horrendous experience with nurses and needles! Might as well knock him out first…
Will be praying!
November 27th, 2007 at 5:20 pm
Today he did the blood work– quite the little trooper. He didn’t want the poke, and thought all he was getting was the nurse to look at his arm. Hopefully it didn’t bruise much.
No problems with passing out– the last time I gave blood they had to give me some orange juice or something! He also watched it (like his mom does) where I think I’d rather look away.
November 27th, 2007 at 11:16 pm Subscribed to Comments
What an answer to prayer! That’s wonderful that it was successful and the little guy was a trooper for it! I’ve not heard of many kids actually watching the nurse do it though! I always did…lol
December 3rd, 2007 at 3:59 pm
The blood test came back negative for Celiac. So, that’s a mixed blessing. It’s a blessing that he doesn’t have Celiac, but it still leaves whatever is/was going on as a mystery.
The appointment is still scheduled for December 6th, and we have some lactose intolerance meds to try, but haven’t used them yet. (You have to start them for two days before they start working.)
So, your prayers are still appreciated as we continue to search for what’s wrong.
December 4th, 2007 at 1:09 am Subscribed to Comments
Glad for this update! Glad it’s not Celiac disease…
You’ve got our prayers…
December 18th, 2007 at 9:49 am
We got the results of the blood tests yesterday. They came back saying that he is allergic to milk, egg whites, dog and cat. Obviously he’s not violently allergic to these things, as the first two are in almost every meal, but we will be taking some action now, and we’ll wait for the follow up appointment in February.
December 19th, 2007 at 9:42 am Subscribed to Comments
Milk and eggs, huh. That will be hard! I’m glad you have a concrete answer though.
December 19th, 2007 at 11:14 am
We’ll know more when we see the doctor. We probably won’t be eliminating all of it until then– I mean, what’s a birthday (today) without cake?! He won’t be having the ice cream he picked out earlier, though. We wouldn’t want him feeling bad with the guests there and everything.
December 21st, 2007 at 12:43 am Subscribed to Comments
His birthday? Poor thing! I wonder what non-dairy ice cream tastes like? Surely they make such a thing with all the lactose intolerant people out there…or maybe they all POP a pill before having milk products, I know my fil used to do that. Can’t be good for a person.
Hope he had no ill effects from the cake…
December 21st, 2007 at 1:05 am
Unfortunately it isn’t lactose intolerance– it’s milk allergy (one of the most common allergies I would add) so technically he’s not supposed to have any of it. In any case, he had cupcakes on Wednesday with little ill effects, he just won’t get ice cream.
February 29th, 2008 at 9:03 pm
Wow, what a scary experience! Thanks for sharing. Is there an update to this? I hope a very positive update? How is your son doing with the milk allergy?
Tee’s last blog post..Watch the Gluten Intake, Celiacs!
March 3rd, 2008 at 10:50 am
So far, we’re doing ok. There’s only been a few times when he has seemed disappointed that he can’t have something because it has milk in it. He never really liked milk to start with (consistency, maybe?) so he was happy not to be able to drink it, but he’s surprised when he can’t have some chips or chocolate.
It’s actually a mix of milk, egg whites and wheat, though he has a follow-up appointment this week with an allergist to have a skin test to see the extent of the allergies.