Child Back In Hospital

[Mommy2GlutenFreeChild]

My son was admitted into the hospital this morning. He has celiac's diease and is 6. After a month of problems they have admitted him for a series of tests etc. He has been having pains that really can't be explained, in his legs, arms and hands. Like his hand last night, he said it felt like it was on fire, it had a rash and then the rash went away. He has been losing weight the last 3 weeks, having nose bleeds and night sweats. A couple weeks ago his dr. did his celiac panel blood work and it came back in normal range, so they don't think he's been exposed to gluten. The pain they think could be due to damanged nerves or something and they are doing an emg on him in the morning, as well as a lot of blood work, including vitamins etc. They believing another auto immune disorder could be causing problems beyond the celiacs... perhaps caused by the celiacs.

Any thoughts, ideas or suggestions? I am so worried about him and at such a lost.

[AVR1962]

Sorry to hear, this has to be hard for you both. I agree with your doc, it is probabaly nerve damage as far as his pains are concerned. If he is not absorbing enough nutrients it will effect many part of the body but one of them is nerves. B12 helps and there are homeopathic products on the market as well. Nose bleeds can mean a lack of vit K Open Original Shared Link I had it as a child too. How did you get his rash under control? Did docs link it to anything? A couple things to keep in mind is DH Open Original Shared Link and a possible reaction to salicylates which is not uncommon with celiacs Open Original Shared Link

[Juliebove]

Sorry to hear that! I really have no clue what it might be but I hope they get it sorted out soon!

[weluvgators]

I am sorry to hear of your family's struggles. My DD was hospitalized two times last year, and it was awful. She was 6 years old at the time, and her hospitalizations followed "gluten free" processed foods ingestion. She had horrific reactions, and it left her extremely reactive for months. She did have complicating conditions, but they were never discovered in either of her hospitalizations (and it was probably made worse by the rounds of antibiotics that they gave her that did not treat the infection she had). We had to travel to find doctors that were gluten intolerant / celiac savvy to help our DD get better, but it has not changed the fact that our DD remains super sensitive to ANY gluten exposure (including at school). Her infection did leave her unable to absorb her B12 properly, and that was contributing to a host of further complications related to neurological development (and safety)!!

All of the symptoms that you describe would make me think that he is getting gluten exposures. It may be low-grade chronic exposure, and it may not show up in antibody testing. Our DD's antibody levels are normal, but she still has horrific reactions to gluten exposure, including low-grade chronic exposure (like daily environmental exposures due to others eating gluten around her).

Our family has to maintain a gluten free home, and we have very strict protocols for food sourcing. We consider ourselves "super sensitive". Both of our children have chronic, debilitating symptoms without proper accommodation in school (and that was also probably a factor in our DDs hospitalizations - NOT having proper accommodation in school initially).

Can you tell us more about what he is eating? Is he living in a gluten free home? Are accommodations made to keep him safe in school (what is his schooling situation)?

I was so overwhelmed during our hospitalizations. I hope that they are feeding him well - we had extreme measures in place to ensure that all of her food in the hospital was as gluten free as humanly possible (and free of a wide range of other allergens suspected at the time, as she was in a reactive crisis). I met with the executive chef and dietician daily during the week, we made a detailed written plan for the weekend, and I was given cell phone numbers to reach them over the weekend - it was all so exhausting. On her second hospitalization, they started out with a 24+ hour fast (including removing a medication that was suspect as another contributing factor - who knows if it was a gluten issue . . . but it certainly seems suspect). Has he fasted for any length of time, and, if so, did you see any improvement in his symptoms?

Big hugs, Mama!

[Mommy2GlutenFreeChild]

In our home we have a seperate place for food with glutens and food without glutens. Seperate cooking utensils, plates etc, as well as seperates pots/pans and surfaces for preparing foods. At school they have him eat at the end of the table away from other kids so their food can't get into his and I send his lunch every day. As far as we can tell he is not getting exposed to gluten, but his only sign when he is exposed is constiptation, so we never really know when or how he is exposed. He does not throw up, or get direhha etc. It's all constiptation. Plus being short, under weight etc. The signs of celiacs but not the sign of a recent exposure if that makes sense. He was doing fine and then suddenly he wasn't because of an exposure through play doh by accident the first week of school and then he was fine again. Now all the sudden he is losing a pound or more a week of weight, even though he is eating normally. They added pedisure to his diet twice a diet and he was still losing weight. Then he has these pains and stuff and it's just weird. They have a whole team working with him in here right now. His normal gastrologist, the neurologist, his peds Dr, and they are all working together at this point, ordering tests, discussing stuff.

His GI dr. this morning informed us of some test, I can't remember what for, but some other disease that can come from Celiacs and my head is just spinning.

I am sorry to hear of your family's struggles. My DD was hospitalized two times last year, and it was awful. She was 6 years old at the time, and her hospitalizations followed "gluten free" processed foods ingestion. She had horrific reactions, and it left her extremely reactive for months. She did have complicating conditions, but they were never discovered in either of her hospitalizations (and it was probably made worse by the rounds of antibiotics that they gave her that did not treat the infection she had). We had to travel to find doctors that were gluten intolerant / celiac savvy to help our DD get better, but it has not changed the fact that our DD remains super sensitive to ANY gluten exposure (including at school). Her infection did leave her unable to absorb her B12 properly, and that was contributing to a host of further complications related to neurological development (and safety)!!

All of the symptoms that you describe would make me think that he is getting gluten exposures. It may be low-grade chronic exposure, and it may not show up in antibody testing. Our DD's antibody levels are normal, but she still has horrific reactions to gluten exposure, including low-grade chronic exposure (like daily environmental exposures due to others eating gluten around her).

Our family has to maintain a gluten free home, and we have very strict protocols for food sourcing. We consider ourselves "super sensitive". Both of our children have chronic, debilitating symptoms without proper accommodation in school (and that was also probably a factor in our DDs hospitalizations - NOT having proper accommodation in school initially).

Can you tell us more about what he is eating? Is he living in a gluten free home? Are accommodations made to keep him safe in school (what is his schooling situation)?

I was so overwhelmed during our hospitalizations. I hope that they are feeding him well - we had extreme measures in place to ensure that all of her food in the hospital was as gluten free as humanly possible (and free of a wide range of other allergens suspected at the time, as she was in a reactive crisis). I met with the executive chef and dietician daily during the week, we made a detailed written plan for the weekend, and I was given cell phone numbers to reach them over the weekend - it was all so exhausting. On her second hospitalization, they started out with a 24+ hour fast (including removing a medication that was suspect as another contributing factor - who knows if it was a gluten issue . . . but it certainly seems suspect). Has he fasted for any length of time, and, if so, did you see any improvement in his symptoms?

Big hugs, Mama!

[weluvgators]

I would suggest implementing a gluten free home immediately. At least remove *that* variable. I am completely biased by our experiences that have demonstrated that going after the *known* potential culprit has gotten me vastly superior results to chasing the *unknowns*. Keep running tests, keep investigating, but seriously consider removing the *known* potential problem as adequately as you can (but make sure that you have done all of your needed testing for other family members that may now completely reduce their gluten intake). I am sorry that you are having such severe complications. I understand what a struggle it can be, and it always feels so lonely when we are in our medical crises . . . I don't know if I can ever understand how complicated a celiac diagnosis can be.

I advocated strongly that our DD needed a whole foods diet. We needed to identify FOOD that she could eat without reaction. We needed to get her adequate nutrition in a realistic manner. Processed food is NOT acceptable for our health and well being. Well, it generally will be processed to some extent. . . *somebody* has to clean, chop, cook, make desirable to eat, and *that* person/people/entity needs to adequately understand gluten cross contamination and how to prevent it all along the food chain of command. I hope that he is eating a largely whole foods, relatively unprocessed diet. How about sweet potatoes and broths? Is he drinking dairy? Does he have a dairy allergy? Our family maintains a gluten, dairy, soy free diet, and that seems relatively common amongst many diagnosed celiacs.

The play-doh incident would have done us in . . . for an unknowingly long time, and I hope to never, ever find out. There is often a lot of recovery that needs to happen from the time of a celiac diagnosis, and it sounds like he has a lot of healing to do. Our kids maintain gluten free classrooms at school. Other people eating gluten food in the classroom was causing extensive, low-grade reactions that developed more severe as time went on. The pains and stuff that you describe don't seem weird to me at all, as they sound like complications that we have seen from both known and probable gluten exposures in our family.

Skin rashes for us started extensively after our children tried to enter the school system. We had never had such painful, excrutiating rashes. It would flare at night, look better in the morning (usually . . . until it just got so horribly bad it would take a school break to get better). My kids complain of leg, arm and joint pain with exposures. I am trying to figure out how to "fix" that problem so that incidental gluten exposures don't flare such severe symptoms for them, but that is taking time. Until then, we have to be so regimented about eliminating every last bit of gluten that we can identify. This has included removing them from the lunchroom, which was also implemented for another celiac child that we know during his recovery period. Our girls have strictly gluten free classrooms and do not share art supplies with others.

But back to the hospital. Are you sharing a room with anyone? Our best hospital experience was when they had the awareness to fully accommodate us. They were very strict about our diet, and we had a private room. Whole, unprocessed foods that were thoroughly washed were cooked and handled to prevent any cross contamination. They also respected that we want our doctors and nurses to wash their hands with soap and water. They removed the hand sanitizer from the room and placed signs on the door and at the hand sink.

Our more troubled, thankfully shorter, hospital stay had a brief gluten eating roommate - they changed that rather quickly when I explained the severity of our gluten issues. I wish I had had a HEPA filter for *that* hospital - air quality was terrible between a lax attitude about food everywhere and loads of hand sanitizer (that gives us extensive issues) . . . and I suspect that the mold counts were not ideal either, but I don't know for certain . . . my point is that if you think air quality is poor, I would bring in a HEPA filter. The first hospital was new, and their air quality was awesome!

And things to consider since you are running tests - we tested our DD for tons of stuff while in the hospital in her crisis (in the end that proved most likely explained by incidental, accidental gluten exposure, as we could never identify any other causative agent . . . but who knows . . . )anyway, we tested for all tick-borne diseases, antibodies and markers for autoimmune suspects, we had already checked our home water quality . . . we then had her tested for parasites, bacterial infection, gut function, checked her nutritional levels, heavy metal toxicity . . . some other things came up along they way, and we have treated them as needed. Have you considered pinworms? Not sure if they would cause such complications, but it is a common parasitic infection that he may encounter through school, and if his gut integrity is already compromised it can be rather easily disturbed.

I hope that you are able to figure things out quickly. Are you getting copies of his test results? I asked for copies of them regularly during our hospital stay, and they helped me figure out things to research too. The nurses also let me use their reference books to look up stuff that I wanted to know as well.

[kareng]

Please remember that not everything is about gluten. Let the doctor's look for other illnesses. Hope you find something out & he is feeling better soon.

[domesticactivist]

My son had the same kinds of issues, though not the burning hands. They continued to recur from time to time before our home was 100% gluten free and we started the GAPS diet, which is all whole foods, processed only at home. Definitely get whatever testing and screening for other conditions your and your dr's can think of, but I agree with weluvgators... the known risks of gluten cc is definitely present in your child's life. Minimize that as much as possible before jumping to other conclusions.

[psawyer]

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.

[weluvgators]

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

I am also one that suggested a list of many *other* things to check (including other food allergens), as I am also in that group of parents of gluten intolerant children that end up hospitalized (I think that may also be a small minority, but maybe not). I know of another celiac boy that was hospitalized several times his first year after diagnosis, largely due to school mishandling of his accommodation. The accommodations that he required at school are consistent with the requirements that my children require.

A diagnosed celiac KNOWS that gluten is a problem. Until you eradicate it all as much as humanly possible, it remains a potential, contributing factor. I find the timing of the situation as described to be highly suspect for rooting out all potential gluten issues, WHILE also investigating all other avenues that can be dug up (I said that already, but I state it again). I understand that the child was doing well, started school, got several severe exposures (played with play-doh over several days), identified and eliminated the *big* exposures, seemed to be getting better, but is now getting worse and worse and worse. This is consistent with the pattern that emerged with my two super sensitive kids that I have integrated into the school system. Until we stood up and got them proper accommodation, my life revolved around their medical crises - chronic, debilitating and horrific.

I don't know whether it is good or bad, but we have been largely unsuccessful in digging up *other* explanations during our two hospitalizations and years now with our investigative medical providers(and in hindsight, all of our interventions, treatments and protocols during our hospitalizations because everyone ran around looking for a something else were actually more devastating than if we had insisted that we more fully consider the more obvious issue - gluten exposure). We kept digging and digging and digging, and we continue to dig and dig and dig. . . in part because many people like to insist (except the majority of our doctors at this point - go figure!) that there *must* be something else wrong with us, and I guess I have an everlasting hope that I can figure out a *something else* that relieves us of our hypersensitivity. So we keep digging and digging and digging . . . but all of that digging takes time. And in the meantime, remaining undoubtedly as gluten free as possible is a RELIEF! Maybe going super conservative in your gluten eradication efforts won't provide him relief, but there is really only one way to find out - TRY IT. And, again, keep exploring all other *something elses* that you can reasonably identify and pursue (that isn't exactly a cheap approach btw!! . . . but the costs of our hospitalizations did motivate us to further pursue additional investigations). And we pursued as much as we could during the year of our hospitalizations because it seemed a good time to do so, as we had met our high deductible.

However, identifying foods that can be safely eaten is critical to health and wellness. His worsening condition when adding the Pediasure is another indicator that trying to identify clean, whole foods that are well tolerated and assimilated to support this child's healing is so important. And the timing of this increase of issues (that seem somewhat consistent with the child's issues that presented about a year ago upon discovering that his gluten levels were still high, most likely due to CC issues) with the start of school seems to suggest in my experiences as a mother that has integrated her gluten super sensitive kids into the school system as highly suggestive of gluten CC issues, probably with school as a primary contributor. I am going to guess that the class may still be using play-doh in his classroom - that would absolutely do my kids in. It would also do in other celiac children that I know. Is he getting burning rashes on his hand because he is holding hands with other kids after they play with play-doh? Are washing protocols in place to help keep this child safe? Are they eating a snack in his classroom? Is he sneaking (or some other form of obtaining) gluten food at home? Is he trading food at school? The list of potential suspects from the information shared above is rather lengthy. We have had to implement strict protocols to keep our kids safe in school, and I know of another celiac child that also required strict intervention (finally agreeable after he ended up with multiple hospitalizations). But also look at what you are sending him for his lunches. That actually proved to be a contributing culprit (but not the worst offender) for us - we initially grabbed "gluten free" processed foods to supplement our child's food supply for school snacks and lunches . . . and it was contributing to her chronic symptoms!

I just want this mother to know that she has my support and understanding in taking whatever steps she feels are prudent to keep her child safe when it comes to gluten because some of us here fully understand that sometimes a celiac ends up with the short end of the stick and has to go to extremes, especially when trying to heal from the damage that got them to that celiac diagnosis and also while investigating all of the other potential *something elses*. Kids are resilient, but they need our support in so many ways.

Good luck, Mommy! I know that of all the suggestions and offerings of our healthcare team for our complications, many of the recommended interventions and drugs have had severe side effects (both real and potential, and especially with chronic use). While maintaining our diet is a different pace than what I was accustom to, the side effects have been therapeutic, and coupled with proper environmental accommodation, it has eliminated our need for the more invasive and disruptive interventions that we were having to use prior to our more comprehensive understanding of gluten super sensitivity.

[Mommy2GlutenFreeChild]

Hi Everyone. I appreciate all your comments, suggestions and thoughts. We have had an interesting... well I don't know if interesting is the correct word or not, but not sure what other word to use... a change of events here. Due to the weight loss and night sweats, his Dr. decided to test for TB. I am not sure what lead him to that test, but they did the TB test Tuesday night late just as kind of a "we doubt he has it but lets do the test anyways" thing and as of this morning when the Dr. measured it, he believes that the test is positive. It's 9mm. Anyways they are going to do some chest Xrays and additional blood test to determine if the positive test is accurate and if the TB infection is active etc. But, they believe that it is and believe that his night sweats, weight loss and nose bleeds could be caused directly by the TB. They have him on lock down in his room, he's not allowed out of the room because of it.

The pains he is having is being looked into by the neurologist but they believe it's something to do with his celiacs like possible JRA and they are doing all kinds of test on his vitamins and looking for bleeding disorders and stuff.

But the positive TB, if it is an active infection could explain a lot so we are waiting to see.

[domesticactivist]

It sounds like you are on your way to some answers. I hope your little guy feels better soon!

[weluvgators]

It sounds like you are making good progress. I hope that he is feeling better soon.

[seezee]

Have they checked for Lyme disease too? The rash and joint pain are symptoms and it's pretty common in lots of places in US.

My dad had it and was in the hospital for four months. He kept getting sicker and sicker as teams of specialists looked for all kinds of things. The Infectious disease guy called Lyme the great imitator. By the time they actually figured it out he had a lot of nerve damage. We have a place in Western Ma and it's really common there. A lot of providers won't check without the bullseye rash, but the ID guy my dad saw said that only happens about 30% of time.

It does sound like whatever is happening to your son is an infection of some sort.

Although, TB sound pretty scary I think they can treat that.

My daughter has celiac and it's really hard to tell when something is related to that or not.

[mommida]

I think there was some research out in the last year and a half - 2 years that there is an association to TB.

Glad the doctor picked up on it, even if he felt it was a long shot.

Here's wishing you and your little one a speedy recovery.

((HUGS))

[Mommy2GlutenFreeChild]

Okay, so, I am wondering if anyone of you can help me figure this out.

My son gets admitted on Tuesday morning to the hospital, by a Peditrician and 4 of his residents at the Children's hospital. He was admitted for all of the following reasons:

Weight Loss- 3 lbs in 3 weeks with 1 lb happening from Thursday to Tuesday.

Nose Bleeds on a regular basis

Pain in his hand that he describes as feeling like it's on fire.

Pain in his legs, wrists and arms that comes and goes on a regular basis, somethings making it so he can't walk without a lim or dragging a foot for a day or two.

Pain in his grown area at times, sometimes with a bump. They include the groin pain with his other body pains.

Night sweats which soak him, his pillow cases and sheets, even though he sleeps in nothing but his underwear and just a sheet covering him with a fan and air going.

They also test for TB upon admitting him just for the heck of it. They do a BUNCH of labs (will get to that in a moment) to look for various things.

On Wednesday at the 24 hour reading his tb test has grown a bump and they decide it might be positive and warn us about that. They tell us labs are starting to come back normal, but don't really share any of the lab tests with us. Just that they are *normal*

Thursday, at the 48 hour reading of the TB test, they declare it will be positive and that infectious disease will talk to us etc etc but that they can't officially declare it until the 72 hour reading on Friday. They tell us most labs are back and are normal and stop looking for anything else. Saying TB must be causing the problems. Oh and they do a base line EKG reading. Some other labs haven't come back we are told but will not be back for a few days and we can follow up on those. We are also told that his pain is without a doubt being caused by his celiacs issues and that the neruologist will follow up with us on those issues after we are released from the hospital and that in the mean time she will prescribe amitriptyline for the pain for him. Gastrologist informs us that our son is really backed up (constipated, his main symptom for the celiacs, even though he is going daily) and needs to increase his miralax but is fine other then that. Dr orders a chest Xray to look for TB.

Friday morning, the Dr and his 4 residents come in and look at the final TB reading. All 4 residents measure it and declare it to be at 9mm. The Dr. agrees. without measuring it. They then tell us it is border line on the neg/positive so that they are going to declare it negative, but to make sure we get it retested in a month because it's possible that he was just recently exposed to it and at the early stages of infection but it's not showing up on the Xray, and isn't big enough to be concerned positive yet. So retest in a month. They they declare they are discharging us since it's negative and we can follow up with our 3 different Dr in the next couple of weeks. (He pediatrician, gastrologist and the neruologist) Okay I ask.. what caused the weight loss, nose bleeds, night sweats etc. I get told, well, the night sweats can be normal in some kids and so can the nose bleeds. Weight loss is just celiac's related and not a big concern. All his labs came back normal, so we can follow up at home and don't need to worry. And oh, they aren't really worried about the nose bleeds, it must be resolved because he hasn't had one in the hospital since he was admitted. That was about 11am Friday morning we got told all this. I ask if these weren't things to be concerned about and were so normal, why was he admitted in the first place. I didn't get a real answer on that. Oh and his hand still hurts and feels like it's on fire, even though it's 3 days later. They say "the pain meds prescribed will fix that"

2 hours later, one of the residents comes back to our room to "go over everything with us" for his release. They tell us he has peripheral neuropathy and to see the neurologist within 2 weeks for further testing to see what is going on. That he is negative for TB, but retest in a month since it could be early in the infection, that his epistaxis is resolved (nose bleeds) and that he has subclinical hypothryoidism. Huh I ask? She explains what it is and says to follow up with his Peds Dr. next week and of course to see his gastrologist within the next couple weeks. Fine I say. She then hands me all his labs results from that week and leaves. The nurse comes in and as she is starting the discharge process, she is talking to us and all the sudden my son has a pretty big nose bleed that took us about 20 minutes to stop. The nurse calls the resident back up who comes in and looks more annoyed then anything and basically says she doesn't really think the nose bleed is that serious and to have a safe trip home. Okay we say. We go over everything with the nurse and leave.

At home, a couple hours later, we are eating dinner with my son and he gets another nose bleed, took us about 25 minutes to stop, doing exactly as they showed us at the hospital to do. I just kind of look at my husband and shrug my shoulders. We were told nose bleeds can be normal for kids. What else can I do besides talk to his Dr. next week. Later on, he's been in bed a couple of hours and I go to check on him and yet another nose bleed. Still bleeding on his pillow etc and he is soaked in sweat. I get him up and spend 25 minutes to get the bleeding to stop. Clean things up and put him back to bed after holding him a bit.

I then sit down and look at the copy of the labs they sent home and start doing research on some of them and this is where I get confused. They told me all his labs were normal and they really did test for everything. But the ones I question and don't understand are:

His HCT.. is measured at 34.6 and has a L next to it for low. I looked it up and it is suppose to be between 47 and 56 as far as I understand.. So 34.6 seems pretty low to me and even says low right on there. His Neutrophils says L 31.0. Upon looking it up, it shows 45 as the normal range. His Lymphocytes shows H56.0. I looked it up and normal range shows at 32.5. His metamyelocytes were H 1.0. His Sed Rate Westergren shows H18. Looked it up and it's normal range is 0-15 and lower for kids. His LD shows H214.. I can't figure out a normal range for that one and of course his TSH shows H at 6.650 (which is the thyroid, that they told us about).

In the mean time I weighed him this morning (Saturday) and he has lost another pound since when I weighed him Tuesday morning before the hospital) so that now makes 4 pounds in 4 weeks.

I am not sure what all those lab test numbers mean.. but they told me his labs were normal and yet there are 6 labs showing as being H or L. 5 of them being from the Hematology part. Now, I understand that they may not be "real high, or real low" compared to the normal ranges, but no matter how slight, they are reading above or below normal ranges. I cound understand being told they are normal if just one was slightly high or slightly low compared to normal ranges, but 6? Then you look up what each one of these parts are for and all 6 of them being low or high have things saying they indiciate a possible infection etc etc.

So I am let wondering isn't it possible these slight highs and lows could indiciate some kind of infection going on.. like oh say TB? Since he was so borderline? Or something else even?

Maybe I am over reacting, but night sweats, nose bleeds, weight loss and pains are NOT normal. I don't care what they say. If he just night sweats, I would say fine, it's just a thing he has. Or just nose bleeds... But all of it combined? What bugs me is he was in the hospital for 3 days, and we bascially got told all those things didn't matter.

If it's his celiacs causing the problems. Fine, tell me so and tell me what to do, but don't tell me there is nothign wrong and that we don't need to do anything for him. I don't want anything else to be wrong, but I just feel like there is. We see his Peds Dr. Monday morning. I have a lot of questions for him.

In the mean time.. am I crazy for being concerned? Am I being over protective? Do those labs really mean nothing? I just don't know what to think. This is all over my head.

[GlutenFreeManna]

In the mean time.. am I crazy for being concerned? Am I being over protective? Do those labs really mean nothing? I just don't know what to think. This is all over my head.

No, you are not crazy. I've read and experienced similar things in hospitals myself. Write down ALL of your questions for the PED and ask them in as calm of a voice as you can. It's hard not to get emotional over these things and your emotions can make you forget the questions you were going to ask or distract the dr from looking for the answer. So write it all down and leave room on the notepad for his answers so you can write down what they are going to do or what each thing means. I would strongly press for an immediate repeat of the TB testing and if they will not do that then find a new dr. Isn't Tb a very infectious disease? I can't believe they would let him out of there when he started having nosebleeds again (but I also sadly believe it because I've been discharged from a hospital when I couldn't even keep water down to swallow my pain meds yet). The only thing I can figure is that perhaps your insurance only covers a certain number of days in the hospital and then the drs have to have really serious justification for keeping him there in order to get additional days covered. Either way, don't let them just brush you aside. Keep asking questions and pressing for testing until you either have answers or your son's health problems are resolved (sometimes things resolve without clear answers).

Also I know you said you don't suspect gluten is the cause of this all (it may not be) but I agree with a few previous posters that suggested it's a good idea to make your home gluten-free to see if that helps him. If he does have another infection like TB, accidental gluten exposure (like the playdough incident at school) could make it harder for his immune system to ralley to fight that infection. When he does get better and returns to school I would offer to make/provide gluten-free playdough for the entire class so there isn't even an issue of other kids having it all over them and he can play with them. Moondough is a brand that is gluten-free if you need to buy it.

I hope you can get this all sorted out soon so you can get him on a road to recovery from all this. From what you have posted about his tests, it does sound like he has a thyroid condition and that can cause the night sweats and some muscle pain. Hopefully you will get good follow up from the drs and a plan of action to combat that.

[kareng]

Sorry! This all sucks!

Did they test for Lyme like one person suggested?

I agree with GFM. Write down your questions. Make 4 more copies of the labs and whatever other tests you were given. Put one away in a safe place, take one copy for each doc you see (in case they didn't get them), take one copy for you to look at at the doctors office. Highlight the labs that are "off" on all copies but the one you keep at home. Don't run the highlighter thru the whole result. You need the numbers to be clear as the doctor may need to copy them or fax to another doc.

Good luck. Try and get a "sick kid" appointment with the regular Pediatrician for Monday.

[Jestgar]

I agree that TB is not something to play with. Call an infectious disease doc and ask them what the best plan is. Google gave me this info: Open Original Shared Link

[stanleymonkey]

is there another hospital you could go to? Take a copy of the labs and tell them he isn't getting better.

[weluvgators]

GFM gave great advice! And with "borderline" TB . . . hhmmm, I am surprised that you were discharged . . . without I dunno - better advice? Do the doctors expect him to go back to school now?? I am thoroughly confused myself!

In the mean time.. am I crazy for being concerned? Am I being over protective? Do those labs really mean nothing? I just don't know what to think. This is all over my head.

You are NOT crazy. Your doctors seem to be elusive at best . . . not sure if they have a plan or strategy. NO, you are NOT being over protective. The labs mean *something*, but I don't know what. You just have to start digging in and doing as much research as you can. One of the tests that I requested in our first hospitalization was to run a thyroid antibody test - I can't remember what it was, and I had to borrow the nurses' book to figure out what all I wanted them to run - but it was to look for that autoimmune stuff that I thought we may be able to find during our child's crisis (it turned out negative, but it was something else to look for).

I got lots of nosebleeds as a kid . . . I think they are indicated as early celiac symptoms for some. My sinuses are messed up, but getting better. The more I get my gut healed, the better my sinuses seem to be. I would look hard at your home and trying to get it safer for him. Have you considered running a HEPA filter in his bedroom? Is there a plan for getting him back into school? I would insist on a detailed, written plan with all the protections that a super sensitive celiac needs for his classroom.

Keep pushing and making progress. I would definitely consider getting 2nd and 3rd opinions on his condition. Start a medical file and keep it all together with your notes. In our experience, there is no quick fix. It is exhausting, and you have to be willing to work on this - it became a big workload for me for many months. I did bring in a patient advocate to help me organize myself better - she was also my sounding board for whether or not I was crazy - sometimes people made me feel that way, but it was crazier to keep watching my kids suffer at other peoples' reluctance to accommodate them. I wrote up detailed notes of our history, and that helped me to better communicate with our providers (the patient advocate helped me organize this and read through it all - it helped me communicate my needs to her as well).

We have many generalists and specialists that we have consulted for our medical condition, and I have found that *I* am the one that best coordinates with them all. We ended up at the Children's hospital for the second hospitalization . . . they couldn't accommodate us very well and discharged us quickly because my child was getting *worse* in many ways while we were there. However, they did find a medicine and another follow-up specialist (juevenile rheumatology for us - that may be a good avenue for you too - she was the one that figured out a medicine combination to get us through our crisis while minimizing the crippling pain episodes, and in the end, she simply stated that not being able to reintroduce processed foods into our child's diet wasn't a "bad" thing).

FWIW - our sed rate still has not fully normalized . . . we have treated for one infection identified post hospitalization after consulting with a more alternative option (although still an MD group, they specialize in celiac / gluten intolerance, and they are now the sounding board for our more traditional providers). We found that our DD was just dumping all of her B12, but it was the more alternative providers that understood better what to look for and how to address her issues - none of our conventional providers were able to do that. With a compromised gut, sometimes it seems that there will be one thing after another in our experience as you work through the healing process . . . . well, that, and our kids are really exposed to a lot of different stuff, and this is the time for their immunity to be developing. Good luck!!

There was someone that used to post here that had nosebleed issues for her kids when they were exposed to trace gluten. I don't know if she ever wrote about it here or not, but you may be able to dig up something. IIRC, she contacted a celiac center, and they were unaware of the correlation . . . . but I know that nosebleeds are reported as possible symptoms in other places.

Is your pediatrician and the admitting peds doctor for the hospitalization the same person? I couldn't tell for sure from what you wrote.

I hope things improve quickly for you all.

[pricklypear1971]

No, you are not overreacting.

You need a diagnostician.

Wonky lab results need to be taken as a whole - which is what a good diagnostician will do.

Internists are known to be better than other docs at diagnostics. Perhaps a very good Naturapath.

Don't stop pushing. Keep researching.

[Roda]

Perhaps ask you ped to follow up on the TB and ask for a hematology consult. You are the best advocate for your little guy. You are doing the right thing by questioning and not giving up!

[kareng]

https://www.celiac.com/articles/22680/1/Slightly-Higher-Tuberculosis-Risk-for-People-with-Celiac-Disease/Page1.html

This was just posted. It says there is a slightly higher risk of TB in Celiac.

Couldn't we have a slightly higher risk of winning the Lotto? Or being better at tennis? Something more useful?

[Jestgar]

https://www.celiac.com/articles/22680/1/Slightly-Higher-Tuberculosis-Risk-for-People-with-Celiac-Disease/Page1.html

This was just posted. It says there is a slightly higher risk of TB in Celiac.

Couldn't we have a slightly higher risk of winning the Lotto? Or being better at tennis? Something more useful?

As a whole, we're a lot cuter than the general populous.