Jump to content
  • Sign Up

Archived

This topic is now archived and is closed to further replies.

Mommy2GlutenFreeChild

Child Back In Hospital

Recommended Posts

Did they examine your child's nose to see if there was a sore or absess that is causing the nosebleeds? When I was younger my nose was cauterized from having continous nosebleeds from a sore area that would not heal.

Elevated lymphacite count = viral infection During the body's fight the thyroid gets a call to action, that can explain the elevated TSH (thyroid stimulating hormone) if the thyroid level was too high, that could have explained the night sweats. (should have shown an elevated heart rate too)

Not a doctor here, but doctors don't like chasing down zebras. It's always a zebra with my celiac and eosinophilic esophagitus daughter. You might start looking for a viral infection with the rest of the symptoms. Joint pain? (common for a viral infection) lump in groin area? it is a swollen lympth node? Illness were that groin swelling would be "standard" Mumps? Illness where the groin swelling is coinsidental, Cat scratch fever?

I think he should be properly tested for lyme disease. Do your research to make sure the proper testing is done and request a copy of all test results. Get a copy of all the dr. notes and test results from the hospital. Should be available at your "sick" visit with the ped.

Share this post


Link to post
Share on other sites

Elevated lymphacite count = viral infection During the body's fight the thyroid gets a call to action, that can explain the elevated TSH (thyroid stimulating hormone) if the thyroid level was too high, that could have explained the night sweats. (should have shown an elevated heart rate too)

An elevated TSH indicates low functioning thyroid(hypo). A low TSH indicates a high functioning thyroid(hyper). Night sweats and elevated heart rate are associated with hyperthyroid.

Share this post


Link to post
Share on other sites

Did they examine your child's nose to see if there was a sore or absess that is causing the nosebleeds? When I was younger my nose was cauterized from having continous nosebleeds from a sore area that would not heal.

Not a doctor here, but doctors don't like chasing down zebras. It's always a zebra with my celiac and eosinophilic esophagitus daughter. You might start looking for a viral infection with the rest of the symptoms. Joint pain? (common for a viral infection) lump in groin area? it is a swollen lympth node? Illness were that groin swelling would be "standard" Mumps? Illness where the groin swelling is coinsidental, Cat scratch fever?

I think he should be properly tested for lyme disease. Do your research to make sure the proper testing is done and request a copy of all test results. Get a copy of all the dr. notes and test results from the hospital. Should be available at your "sick" visit with the ped.

You are so right that doctors don't like to look for the zebra. I have been there with my youngest son when he was two. He has symptoms of strep throat and red swollen tonsils that were almost touching. He tested postivive on the rapid strep test and we were sent home on antibotics. He did not get better so he went on a different antibiotic. Half way through that one he was no better so at that point I requested a throat culture. While we waited we were given yet a different antibiotic. Culture results came back and he DID NOT have strep at all, he had MRSA! His pedi never thought it was possible to get it in your tonsils. Yet again we had to change antiboitic that would fight the MRSA. He did 10 days of it and did not improve. Was sent to the ENT for eval. and she was amazed at how bad he was. She put him back on the same antibotic for 14 more days to see if he would get better. He did finaly. It left his tonsils very elarged, but he hasn't only had maybe two tonsil infections since. So moral of the story don't rule out the zebra!

Share this post


Link to post
Share on other sites

An elevated TSH indicates low functioning thyroid(hypo). A low TSH indicates a high functioning thyroid(hyper). Night sweats and elevated heart rate are associated with hyperthyroid.

That is the way I meant it. Thank you for making it clearer.

In acute illness, the TSH count can elevate. This usually resolves when the patient gets better.

Share this post


Link to post
Share on other sites

You are so right to be concerned. You are doing a great job of being an advocate for your child. It is hard in the face of drs discounting your observations and the labs, but keep it up!

As for the symptoms... I'd also want him to also be tested for Lyme disease.

Those nose bleeds are serious. My son's allergist put the fear of God in us about them. 25 minutes to stop a nose bleed is not normal. Does he have any 'seasonal' or histamine type allergies? Those always contributed to nose bleeds for my son.

As for the pain - there is a cause, they have not found it yet. Pain meds do not fix that problem! It's good you have follow up planned with a specialist.

A child losing a pound a week is not a good thing at all either, but it's not surprising given how bad he feels. I'm curious - have you been keeping a food journal? You want to be able to rule out food as a potential source of the problems, and you want to be able to clearly tell the drs what he's been eating. This is a good time to get back to basics with his diet and make sure it is comprised entirely of completely safe, nutrient dense, whole foods.

Do you have another hospital in your area? If so, I'd take him in right away with copies of every test run and your written questions and reference level charts at the other hospital.

Share this post


Link to post
Share on other sites

You are so right that doctors don't like to look for the zebra. I have been there with my youngest son when he was two. He has symptoms of strep throat and red swollen tonsils that were almost touching. He tested postivive on the rapid strep test and we were sent home on antibotics. He did not get better so he went on a different antibiotic. Half way through that one he was no better so at that point I requested a throat culture. While we waited we were given yet a different antibiotic. Culture results came back and he DID NOT have strep at all, he had MRSA! His pedi never thought it was possible to get it in your tonsils. Yet again we had to change antiboitic that would fight the MRSA. He did 10 days of it and did not improve. Was sent to the ENT for eval. and she was amazed at how bad he was. She put him back on the same antibotic for 14 more days to see if he would get better. He did finaly. It left his tonsils very elarged, but he hasn't only had maybe two tonsil infections since. So moral of the story don't rule out the zebra!

Auto-immune disease, we just don't have "normal" immune systems.

He may have had the MMR vaccine, but didn't gain the immunity to fight the illness. It is not as common as it once was and pediatricians don't recognize it.

My 12 year old son must have had 5th disease all summer long. Diagnosed with swimmer's ear at the doctor's office. When the gi distress continued after weeks and finally the trunk rash develped, I remembered the hot summer day I asked him if some slapped his face.

Share this post


Link to post
Share on other sites

Auto-immune disease, we just don't have "normal" immune systems.

He may have had the MMR vaccine, but didn't gain the immunity to fight the illness. It is not as common as it once was and pediatricians don't recognize it.

My 12 year old son must have had 5th disease all summer long. Diagnosed with swimmer's ear at the doctor's office. When the gi distress continued after weeks and finally the trunk rash develped, I remembered the hot summer day I asked him if some slapped his face.

Yep my boys both had 5th disease too. The youngest one had hand foot and mouth disease also. My oldest boy had mono twice before he turned 5. We are lucky in the fact that we have not had measles, mumps or rubella. They both had their vaccines for that, so as far as I know they are immune. They had their varicella vaccine also. My oldest I know was exposed to chicken pox and he didn't get it, so good on that front too, thank goodness. What my youngest one had was methicillin-resistant staphylococcus aureus, the resistant bacteria that used to be thought only in hospitals, but not anymore. It lurks everywhere. I think he picked it up at his daycare.

Share this post


Link to post
Share on other sites

So saw my son's Peds Dr. (Not the same Dr. from the hospital) and she redid the TB right away. She read it today and called it positive. Ordered a chest XRay for tomorrow. If the chest Xray comes back negative or clear she will put him on 9 months of antibiotics to make sure he doesn't get the disease and it just stays at him having been exposed to it. If it comes back positive, she said she will readmit him to the hospital under her care to run test to see what kind of bactria it is etc to make sure she gets the right medications for him.

She went over blood test result with me and explained each one and went over the ones I was concerned about. She believes that his night sweats, nose bleeds and over all sick feeling could be a sign that the TB is an active infection and that the slight elevatued test results could be the indication to that. If the lungs are clear she is going to order a couple additional test to check a few things. We looked at the labs and he was tested for Lyme disease at the hospital Negative.

I sat down with his teacher, principal and nurse today at his school and we had a long talk and discovered a few things.

1.) His class took a field trip a couple weeks ago (which I knew) to a pumpkin patch (which I knew) That field trip, pumpkin patch also included a petting zoo. Which included hay and straw, including a wagon ride... on, um, yea straw. (that I didn't know)

2.) His art room and teacher is seperate then his normal teacher and room. So while we have gone through and removed the gluten from there after the Play Doh incident at the start of the year, the school didn't think to do the same in his art class room. I am going in next week as a volunteer and going to see how things are run in there and go over everything with the art teacher. The principal has agreed to let me replace certain school supplies for his class to be all gluten free for the entire class.

3.) Kids were messing with his lunch in the lunch room. Only lunch room monitors, not his teacher in there. Kids were touching his food on purpose to mess with him. He will be eating at a table seperate from his class. Which I don't like. But like the principal explained, the only way to ensure it doesn't happen to move him from it. Fankly I think they should just put him at the end of the table with his class, next to a kid who will leave his food alone. But his princiapl wants to be 100% sure and safe. I feel like he is going to be punished, by having to eat alone.

So anyways, between the possible TB disease and all the exposure at school, it's no wonder he got so sick. It's amazing he wasn't worse.

I don't think I will ever figure out everything we need to watch for. :-/

Share this post


Link to post
Share on other sites

So saw my son's Peds Dr. (Not the same Dr. from the hospital) and she redid the TB right away. She read it today and called it positive. Ordered a chest XRay for tomorrow. If the chest Xray comes back negative or clear she will put him on 9 months of antibiotics to make sure he doesn't get the disease and it just stays at him having been exposed to it. If it comes back positive, she said she will readmit him to the hospital under her care to run test to see what kind of bactria it is etc to make sure she gets the right medications for him.

She went over blood test result with me and explained each one and went over the ones I was concerned about. She believes that his night sweats, nose bleeds and over all sick feeling could be a sign that the TB is an active infection and that the slight elevatued test results could be the indication to that. If the lungs are clear she is going to order a couple additional test to check a few things. We looked at the labs and he was tested for Lyme disease at the hospital Negative.

I sat down with his teacher, principal and nurse today at his school and we had a long talk and discovered a few things.

1.) His class took a field trip a couple weeks ago (which I knew) to a pumpkin patch (which I knew) That field trip, pumpkin patch also included a petting zoo. Which included hay and straw, including a wagon ride... on, um, yea straw. (that I didn't know)

2.) His art room and teacher is seperate then his normal teacher and room. So while we have gone through and removed the gluten from there after the Play Doh incident at the start of the year, the school didn't think to do the same in his art class room. I am going in next week as a volunteer and going to see how things are run in there and go over everything with the art teacher. The principal has agreed to let me replace certain school supplies for his class to be all gluten free for the entire class.

3.) Kids were messing with his lunch in the lunch room. Only lunch room monitors, not his teacher in there. Kids were touching his food on purpose to mess with him. He will be eating at a table seperate from his class. Which I don't like. But like the principal explained, the only way to ensure it doesn't happen to move him from it. Fankly I think they should just put him at the end of the table with his class, next to a kid who will leave his food alone. But his princiapl wants to be 100% sure and safe. I feel like he is going to be punished, by having to eat alone.

So anyways, between the possible TB disease and all the exposure at school, it's no wonder he got so sick. It's amazing he wasn't worse.

I don't think I will ever figure out everything we need to watch for. :-/

Poor kid! Sounds like good news that your dr is on the right track and treating him for the TB. Don't beat yoruself up over the cc issues at school. It's awesome you were able to figure those out! It is sad about him having to sit alone but I've read that as a common solution in schools for kids with food allergies too. Some schools will allow the allergic kids to choose one or two friends to sit with them if the friends are good OR if the friends are willing to eat foods that don't have the thing the kids are avoiding. Maybe in the future he will have friends that are more understanding and will eat with him. Also if you don't work during the day or can take a lunch break I bet he would love it if you showed up a few times a week to eat a gluten-free lunch with him (in elementary school anyway--middle schoolers and up might be embarrased ;) ).

Share this post


Link to post
Share on other sites

We got tired of chasing the art room issues, so we now have our kids use primarily their own art supplies - we seemed to be having issues with *other* kids contaminating the "gluten free" supplies (like crayons). It is working out better since our girls primarily use only their own art supplies - they just bring their personal art supplies in a pencil case to art class.

As for the cafeteria situation, we pulled our older DD out of the cafeteria first. Her "safe" place in the school is her classroom - the most gluten free place in the building, so she eats at her desk in the classroom. The teacher asked daily for volunteers that want to eat with her, and our DD would select who she wanted to join her from those that volunteered. That worked out very well, and my child never considered it punishment of any kind. Even better is that she isn't subjected to the punishments of the cafeteria when it gets "too noisy". Eventually, our other DD asked to be removed from the cafeteria as well - feeling better is never considered punishment in their book!

It sounds like your pediatrician is fantastic! Please have her help you track down if the antibiotics that she recommends are gluten free. We ended up with antibiotic issues that may have been an issues with gluten CC. It is so hard to do all of that research! Consult with your pharmacy as well - our pharmacy helps with calls to the manufacturers. It isn't always the most productive search, but involving more people in the research helps share the load a bit.

Share this post


Link to post
Share on other sites

I really like your Peds Dr and am glad that you've got a plan of action. There is nothing worse than knowing something is wrong and nobody is listening and you don't know what to do.

Good detective work at the school. I was going to suggest the same thing about being able to invite a (trustworthy) friend or two to eat with your son each day. That's what our school does with the kids that have severe allergies. Sometimes they will get to eat with a favorite teacher in the teacher's classroom.

Share this post


Link to post
Share on other sites

You should probably check into whether he can even go to the school with positive TB? Used to be, he would have to have the "home school" version of school. When he is allowed back at school, you may ask for the school counselors to talk to the kids. They will all have to be tested for TB and might be mad about that.

Not sure what the current thinking about all this is, but that's what it used to be.

Share this post


Link to post
Share on other sites

I'm glad you have test results and info about the school that you can work with. With all those antibiotics I hope you will look into probiotics supplements for him and probiotic foods as well.

I'd be shocked if he could go to the school with tb, and I really hope your whole family and anyone your son has been in contact with gets tested. My friend's dad had it when I was a kid and we all got tested to help prevent spreading it around further and so that others could start early treatment if necessary.

Share this post


Link to post
Share on other sites

You should probably check into whether he can even go to the school with positive TB? Used to be, he would have to have the "home school" version of school. When he is allowed back at school, you may ask for the school counselors to talk to the kids. They will all have to be tested for TB and might be mad about that.

Not sure what the current thinking about all this is, but that's what it used to be.

I think it depends if the TB is in the lungs or in a lymph node somewhere else in the body. Only TB of the lungs is infectious from coughing and sneezing.

Share this post


Link to post
Share on other sites

So after everything about 3 or 4 weeks ago, the chest xray came back clear back thenso my sons Dr. determined that his TB infection was not active. Just simply that he had been exposed to it some where but didn't have the actual disease at that point. She started him on antibiotics anyways to make sure he doesn't get the infection. He takes it every day along with vitamin B12 medication now. And we talked about other issues. She got me referrals to a Dr. for his thryoid issue we discovered in the hospital and a referral to the ENT because of the nose bleeds that she decided in fact had nothing to do with TB since the XRay was clear. At school I sent in a box of gluten free art supplies and that box now goes with him to his art class, as well as his regular class. I talked to them at his school thanks to your suggestions and he gets 2 friends to sit at the table with him. It's a round table and they have to sit on the other side. No one next to him, but at least he has friends to talk to. When they had a project two weeks ago involving pasta art work, they had me come in as a volunteer and bring gluten free pasta for him. All the kids wore plastic gloves (to avoid any latex allergies for other kids) and newspaper was laid out on the tables. My son did his project at a table away from the gluten pasta noodles and one kid joined him at his table and shared the gluten free pasta with my son so that he had a friend with him during the project time. Then we all cleaned up the newspapers afterwards and through away the gloves followed by washing our hands.

My husband and I got tested for TB, both negative. My son's teacher got tested, she was negative too. So no idea where the exposure came from.

So things had been going good. He has been regaining the weight the last 3 weeks that he was losing and seemed to be his normal self again.

Then Saturday night he complains that his stomach hurts really bad just under his left rib cage. I take his temp and it's 100.3. I wasn't to worried and told him he probably had a small bug or something. He eventually went to sleep. Then Sunday morning he wakes up around 8am and he seems fine. No pain, in a good mood, and I double check his temp.. It's 101.5. A little bit of motrin to help the fever and I make a note to observe him and perhaps call his Dr. Monday morning if fever contines. But I am just thinking maybe he is coming down with a cold. His nose is runny a bit. No worries. At 1pm he starts coughing. Mild coughing, not very often and just a little bit. By 2pm, he is coughing alot with a very doggy bark to the cough, by 3pm he was coughing nonstop literally every few seconds, coughing stuff up and having a lot of trouble breathing and running a fever of 102.5. By 3:30pm we were in the ER and he was given a breathing treatment and immediate treatment.

So they did a Chest Xray on him and the chest xray, which the ER Dr. showed me, clearly has some kind of infection going on in both his right and left lung. Problem is the ER Dr. isn't sure if it's his inactive TB exposure now becoming active and the actual disease, which is possible so early in the treatment or if it's pneumonia. She says it could be either one and she can't be sure without testing the spectrum. The ER Dr. calls my son's Dr and discusses everything with her. My family Dr. tells the ER Dr to give my son a shot of medication, meant to treat penumonia and to write him a prescription for a breathing machine and albertol. (sp?) And to send him home for tonight, but to tell me to call her office as soon as they open in the morning to get him in right away.

My guess is she decided that instead of dealing with having him transported to the children's hospital she works out of on a Sunday night, when she wouldn't be doing any testing etc anyways that she decided to have us come home with him for tonight and that she plans to have us take him over to the children's hospital in the morning to admit him. I could be wrong, but that's just my guess. Since he did test positive for the TB exposure and now 3 1/2 or 4? weeks later he is having problems and has a clear infection in his lungs that they will be doing a spectrum test to determine what exactly is going on.

I realize this doesn't really have anything to do with Celiac but I just wonder, does having celiac disease make the kids more open to things like the flu, pneumonia, TB etc? And I think also I wanted to vent because we just got him feeling better again from everything 4 weeks ago and now here we are and he is sick again and they once again can't tell me exactly from what. I hate hearing things like, well it could be this or that, but we are going to assume it's this for now and treat it this way. No, I don't want these people guessing at what is wrong. I want to know that they are treating the right thing.

Anyways, if my guess is right, he will be back in the hospital again tomorrow for a few days since I have been told that the spectrum testing in his age will require him being there for a couple days.

Share this post


Link to post
Share on other sites

Good luck. My GP, around the time I decided to go gluten free, said there was an increased risk of pneumonia in celiacs. I haven't looked it up in ages to confirm, however.

Share this post


Link to post
Share on other sites

Good luck! We always end up with doctors guessing what's wrong . . . and they never seem to *know*. Gluten contamination always seems to be as likely a suspect as anything else that they end up ruling out . . . hard to rule out "gluten contamination" in today's world. I am sorry you are enduring so much trouble. We spent the entire first 1 1/2 years of starting school working with doctors, more doctors and more doctors. It is exhausting.

I have allergy induced asthma, and it makes my respiratory system more susceptible to anything it seems. Gluten exposure seems to doom my respiratory system (and gluten is the only trigger that has been identified for triggering my asthma) - quite a motivator for me! We find that HEPA filters help my kids cope with the air quality in their classrooms. And our teachers keep the classroom doors closed as well (our girls have classrooms across the hall from the kitchen).

Good luck getting him back to wellness. I understand what a struggle it can be. We still struggle in shared spaces. And, unfortunately I believe, most (maybe even all at this point) of our doctors have asked us if we have considered homeschooling our kids. I don't think that is even remotely fair, and my kids want so much to be active participants in their local school.

Share this post


Link to post
Share on other sites

How old did you say your son is?

Celiac is an auto-immune disease,you have a compromised immune system.

I think it would be difficult to move to the children's hospital if you were admitted to the quaritine area.

Share this post


Link to post
Share on other sites

Wow - what a roller coaster. I hope they find out what is going on for your poor little guy. TB can come back neg even when positive, it can be very difficult to diagnose sometimes.

Share this post


Link to post
Share on other sites

As celiacs, we are often quick to blame gluten for our woes. But, in reality, many of us have other food issues, and other diseases may present symptoms similar to celiac disease.

Let's walk through an example:

I have proven, biopsy verified celiac disease.

When I eat shrimp, I get violently ill within an hour.

Voila! This definitively proves that shrimp contain gluten.

Not! What it does prove is that, in addition to celiac disease, I have a severe allergy to shellfish.

Keep exploring alternative explanations. Weluvgators is in a small minority of "super sensitive" people with celiac disease. Her experiences are not typical.

I have the same thing, Confirmed Celiac AND other food allergies. Seafood is the worst. I never take for granted that it's gluten unless I know for absolutely sure. One never knows

Share this post


Link to post
Share on other sites

An update:

On Monday Morning we went and saw his Dr. as we were told to do so Sunday night at the ER. We saw his peditrician at 9:45am Monday. Dr. said he was pretty confident that it was just pneumonia based on what the ER dr. told him about the Xray. We said, okay and agreed that treating at home for pneumonia was okay with us. So we go home with that plan. Breathing treatment machine at home and 10 days of antibitoics. A couple hours later the Dr. calls me and tells me that he had informed infectious disease and pulomary about my son.. his previous positive TB test and the now infection and that Infectious disease was ordering us to take my son to the Children's hospital where he was a month ago and that he would be admitted with suspected TB active infection and that were to go immediately. So, we go to the Children's hospital admitting/registration and get told his room wasn't ready yet but that we need to wait. They give him a mask and make us wait in the waiting room with him. While he is coughing and running a fever. But I'm not allowed to give him anything they said because they need to give him stuff upstairs by the nurses. Fine. 3 hours later, we finally got put into his room and he was finally given some motrin for his fever, 102.9 when the nurse took it. They did another chest xray on him to verify the infection in his lung and I get told by the Dr. assigned to him, the last as a month (since our peditrician doesn't work out of this hospital) that my son has a pretty big and serious penumonia infection in his right lung. Which still confuses me because he had been 100% fine, no coughing or anything on Saturday except for that slight fever and stomach pain that night and then suddeny by Sunday he is really sick. They also did blood labs to test for the TB and he is put on restrictions. Not allowed to leave his room etc.

Later Monday evening, they started him on IV antibotics for the penumonia instead of oral medication. They said it would work faster then the liquid medication he was on and that he was sick enough to warrant it even without the threat of TB. Then we got told that they want to do another skin TB test on him because they don't have records of the positive test from his peditricians office. (Remember it was read negative at this hospital a month ago and positive by his peditrician on a retest not even a week later) So they wanted to do another test. Didn't trust his Dr perhaps? I said no. I told them they were not going to do another test on my son when they had just done the blood test for the same reason and he had already had two TB test in a month. I told him to call the Dr. office and get the results and stop wasting money. They also tell me they want to do some kind of sputum test on my son and explained how the test was done. Nurse told me it was a test done 3 mornings in a row. Each morning around 5am they would come into the room, stick a tub through my son's nose and into his belly or some area to suction out some sputum to test it and find out what exactly kind of infection he had. (TB, what strain, pneumonia, what strain etc) No sedation or anything. I looked at the nurse like she was crazy I am sure and told her, that I wanted to talk to the Dr. first before I agreed to any kind of procedsure like that.

My son is super sensitive. He is the kind of kid who if he steps on a sharp little piece of grass, he will insist he needs a Dr. Obvoiusly we don't take him to the dr for that, but he gets scared about everything and I knew that this procedure once was going to be an issue. Let alone 3 mornings in a row. I know adults who would fight a tube in their nose let alone a sick, 6 year old. So the Dr. and the resident comes in to talk to me Tuesday morning and demand to know why I didn't let them do the test on my son that morning. I explained my concerns about how my son would react to such a test. We talked about the idea of sedation and started looking into those options. We learned that we could sedate him once, put the tube in and then leave it in until all 3 morning collections were done. But the nurses said that would be an idea because they already already experienced him begging them to take the IV out and they felt he would have issues with the tube staying in. So they were looking into the idea of sedating him 3 days in a row, which I was unsure about and sedation said no way. So the Dr. said we just had to do it no matter what without the sedation. I started looking at other options and found a procedure where they could use general anthesia, do a one time procedure, go in, get some sputum or whatever they needed, and also see the actual lungs etc. It sounds more severe then the sputum section procedure but I figured a one time deal with him alseep knowing nothing was a lot better then a procedure done 3 mornings in a row where he was wide awake and suffering through it. I suggested it to the head Dr and the resident and at first got told no by the resident but then the Dr said that it might acutally work and be a good idea. So they scheduled that for Thursday morning. Yes it took us all day Tuesday and Wednesday to figure all this out. Wednesday evening around 9pm, another one of the residents comes in, the evening shift lady (who I hated from the start), as well as the person from pulomary. I get informed that Children Services is out in the hall way wanting to talk to me because some one had reported to them that I was making my child sick on purpose or making up illness with him. But that they needed to talk to me before they let Children Services talk to me since the pulomary person had some where else to be. They both swore up and down that no one at the hospital called Children Services.

The pulomary person explained that they couldnt do the other procedure on my son because it wouldn't work for a tb sputum test since it went into the lungs instead of the stomach. I am not clear as to wy but she explained it all and I decided to agree to the other procedure... but told her that my son had to be sedated for it the first time and the tube left in because I knew if they did it once with him awake they would never get it done twice more. (I know my son) She said fine and left.

I then talk to Children Services who tells me some one outside the hospital called them and said that I have Munchausen by proxy syndrome and that I am making my son sick and that he doesn't really have celiacs and a bunch of other crap and that I make him sick or pretend he is sick for attention. They asked me questions, they asked my son questions without me and asked my husband questions who had been at the hospital with me the entire time as well. They even talked to our room mate. Then they got my son's medical records. What a bunch of crock. I know who reported it. I have a family member who doesn't trust me, but who also hasn't seen me in 4 years or my son in over a year..

So Thursday morning.. that stupid procedure they did on my son that they wanted to do 3 mornings in a row with the tube in his nose. I was told they night before by the head Dr and morning resident on the phone, they would use a spray to numb his nose and told they would sedate him and keep the tube in to avoid the procedure 3 times. The night time resident comes in at 5am with 2 nurses and one other lady. I left the room because I knew if I stayed I would get in their way and cause problems. My husband stayed with our son to help comfort him and I went and waited in the parent lounge. It was suppose to take 10 minutes. 30 minutes later my husband... totally pissed off comes and gets me and tells me what happened in there. No numbing spray, no sedation on my son. They wake him up and try to put the tube in his nose. According to my husband my son tried to be brave and do it at first, but the farther the tube got the more upset he got and that they kept telling him to swallow to help pull it down and that eventually he started screaming, trying to rip the tube out, coughing spasms etc. 3 times... 3 times the idiots tried it on him before my husband demanded they stop and they decided they wouldn't try again. And, my husband heard them saying they were drawing blood to check for like arsenic and stuff.

I, as well as my husband were pissed. I demanded to see the head nurse and an administrative person, as well as my son's head Dr and resident instead of that night resident who I refused to speak with at all. And I went off on them when they got there. Apparently some where through all the communication the night resident missed the part about sedation and numbing spray etc. But the head Dr and resident agreed with the nurses that there was no way they would try that procedure on my son again. So they got nothing out of it and he still got totured which is what I tried to warn them about to start with.

I also told the Head Dr and resident about the Children Services thing. They both laughed and told me I had nothing to worry about because they knew I was not making my son sick and that I didn't have Munchausen by proxy syndrome, that they knew my son had celiacs because they had records of his positive bioposy and that I couldn't give my son penumonia etc. So I at least felt okay about that.

They told me they still wanted to do the skin TB test though since the blood test for Tb had come back negative and they were confused. 1 skin TB test negative, 1 skin TB test positive and 1 negative TB blood test, but 1 lung with a large infection had them confused. So I agreed to the TB skin test and we were told my son would be there until at least Sunday to wait on the read for the test. I said fine, just get it done. A hour later, they still had not done the skin TB test and FINALLY the lady from infectious diesease who had him admitted to start with, comes and sees everyone. She gets the Xrays, talks to the head Dr. on his case, talks to the resident, talks to his peditrician on the phone, reviews the blood work and finally talks to us and sees him. His fever was gone, his cough was mostly gone as well by Thursday and he was active and feeling/looking better. 4 days of antibiotics got him well fast. She informs us that she belives that the TB test at the peditrician office was a false positive because it was done so soon after the first one and that she didn't think he had ever been exposed to TB after all and since he was respodning to the antibotics for the pneumonia, there was no reason to think his being sick was anything more then a bad case of standard pneumonia. She said she stil wanted to do a new TB skin test just to be sure but that she felt my son could go home with oral medications at this point for the pneumonia. Finish up the meds, enjoy Thanksgiving week and come see her for the TB test and follow up Xrays to make sure the infection cleared up in his lungs the week after Thanksgiving. I asked her why she didn't come see us Tuesday or Wednesday and just got told she had been busy and needed time to let the Dr. do their labs and tests. I just shook my head and said okay, does this mean he gets to go home today after all and she said yes it did.

So basically they put him through that hell on Thursdya morning and had him in the hospital for 4 days for no reason. I guess it's okay about being in the hospital because from what they explained the pneumonia was pretty bad and that the IV antibotics did make him better faster so that it was mild instead of serious and that if he hadn't been admitted Monday he may have ended up there later anyways. But who knows. I kept him inside and in bed at home Friday, Saturday and Sunday and by Monday he was 100% better. He has 4 more days on his home medication but he is just as good as he was 2 weeks ago.

But basically we we learned his we don't like his peditrician since they did the TB test so soon after the other one and started the whole mess to begin with. If he had never had that "positive" reading it would have just been a case of treating a child with pneumonia instead of the crazy it turned into. So he went through hell and I got reported to Children Services for basically nothing. Paniced his school. Everything.

A week later, I am still livid about the whole thing. He's been in the hospital 3 times in the last year. 2 of those stays were needed because of his celiacs and stuff, but this last stay was just insane. Children services has also followed up with us at home and from the sounds of it they are closing the case.

So.. it has nothing to do with celiacs, other then he has celiacs but there is the update on my son. Lets cross our fingers that he stays healthy now and back on track with everything.

Share this post


Link to post
Share on other sites

  • Forum Discussions

    @anasss Nobody in this thread has called anyone "ignorant," so please don't say that if it did not happen. Also, the use of all capitals is, in forums and other places on the Internet, generally considered yelling and impolite, and there ...
    Bshake, Look up the "baking soda test" ...it is a nice home test to see if your daughter could have low stomach that is triggering the ulcers or creating the perfect conditions for ulcers to develop....mastic gum as has been mentioned...
    Perhaps you should start another thread in say the Leaky gut and food intolerance area? I am myself have Celiac and UC, and when I started eating meats again recently I found I felt better on Grass Fed Longhorn from a local farmer and other...
×
×
  • Create New...