My Poor 2 Year Old :( Do Ya Think?

[Lovemy4babies]

Well, we had labs drawn today. For Celiacs, and a bunch of other allergy stuff I guess. This kid really has gotten the brunt of it all. This may be long, but here are his symptoms. The doctor didnt seem like she really thought much about it, and kinda seemed like she was just pleasing me, and said "Yeah, I think a trip to a GI is warrented" . Well, it takes forever to get in, so I made an appointment but for now, just had labs drawn. Here is what is going on since birth...

Birth- Cryed all the time for months, all times of the day, hardly slept, was just NEVER happy, breastfed.

8 months comes, breastfed, STOPS eating. Like, nothing going into his body for a long time. Never had a bottle, weaned from breast to nothing. Force fed him concoctions on yogurt, oatmeal, strawberry syrup and formula to tempt him into eating, cryed alot. Doc said it was a "little red" in his ear, that is why, gave antibiotics. I never gave them to him, baby was crying, that makes the ears "a little red". Lost a bit of weight, finally coerced him into drinking strawberry quick formula, yes, mother of the year I know, but the kid wouldnt eat!

10 months gets a MRSA infection, hospitalized. We find out he is anemic, and are doing multiple tests to find out why. Not dietary, and all other tests come back inconclusive.

11 months old gets his first fever of unknown origin. From Sept 07 to Feb 08 he gets 9 fevers of 104 that last for 5-10 days, wont come down with meds. Hospitalized, white blood cell count NORMAL for ALL of them, AIDS tests, spinals taps for meningitis, everything you can imagine, nothing shows up.

March 08 he gets his first episode, as I call them. He was across the room, I was on the floor and said Come here baby. He starts to come, stops, looks scared, starts walking to the side and falls over. Trys to get up, falls back over, can not get up. Doc says if it happens again, bring him in, maybe his equlibrium was off from popping ears.

June and July has 4 more of these episodes. The last one he couldnt even hold up the top half of his body and last longer. EEG and MRI normal. Blood work for protien normal. Clotting normal. Last one was at the end of July.

He has eczema terribly. It comes and goes, he gouges his skin. We dont have eczema on either side, and I have 3 other kids that do not have it. His skin is ROUGH.

Whole life has had diarreah. It is NEVER normal. Always loose, and has resulted in many-a-diaper rashes.

He has dark circles under his eyes always. He gets pretty lazy and tired alot. Would eat all day if I let him, he does not get full.

Now, believe it or not, ALL that didnt send a signal to the doctors. They treated all the sypmtoms, but I have been telling them for some time, SOMETHING is wrong with him, without being able to put my finger on it.

Why? Because he is the craziest child I have ever seen lol. He is happy, laughing, fun loving, then starts screaming and crying. I can see the moods coming on. I told the doctor, he is disciplined, I have seen bratty undisiciplined children, my child is DIFFERENT. He is smart, talks well, but he irritated and moody. Up and down at the drop of a hat. I dont know what to do. I dont even think he can feel, he gets hit or falls or touches the hot stove REPEATEDLY and DOES NOT CARE. He got cut with a razor on his finger and didnt say a peep, just walked around like nothing even happened. Blood everywhere and no crying. Umm? Your 2, you should be SCREAMING. I dont get it, who knows, maybe unrelated, but all info here is all his little problems to me. He has no feeling.

I was telling a friend about this, and she said it sounded like her son, and he has celiacs. I looked it up, and am like OH WOW, THAT is my baby!!!! He has so many symptoms of it. Up days and down days. He even has a big belly!!! He hasnt gained weight in a year, 29 lbs forever! His body is getting skinnier, but his belly is sticking out. We always just figured he was sprouting up and looked ethiopian!

So, I bring my hypothesis to the doctors yesterday. ALL these things are just coincidence that he has? All these things that NO ONE has been able to tell me. She seemed skeptical, but appeased me. I know my son, I see him, and I know SOMETHING is going on inside his little body. They have been doing every test under the sun and found nothing.

Labs drawn today, but from everything I have read, they are not real reliable. His GI appointment is May 21st (Was going to be september, but had a cancellation! LUcky me!). I want to take him off gluten NOW. Can I? If they do a biopsy does he have to be on gluten ? For how long? Do any of these other bizzare things sound like they could have something to do with a food allergy (fevers, dizzy spells/vertigo)?

ETA : He also CONSTANTLY has a runny nose, like, ALL THE TIME. It doesnt leave. He also has something called occular albanism which causes poor eyesight and he has worn glasses since he was just 1. I thought maybe this was the behavior problems, but the doc said that usually doesnt cause behavior problems. She seemed to think it wasnt out of the normal, but he is seriously hot and cold and screaming and crying over nothing suddenly to often.

[sugarsue]

Hi, you should keep him on gluten until you see the GI if they are going to do a biopsy otherwise it might not be accurate. Good luck to you. I just don't know but Mothers Intuition is so important. I am glad they gave you the celiac test since you asked for it! If it seems like gluten is the issue, I'd say there is a good chance that it is.

The part about him falling down and not being able to stand is very disturbing though and it makes me wonder if anything else is going on but I don't know how celiac might cause that. Maybe it would and I"m sure you'll get more educated responses!

[mimommy]

Well, we had labs drawn today. For Celiacs, and a bunch of other allergy stuff I guess. This kid really has gotten the brunt of it all. This may be long, but here are his symptoms. The doctor didnt seem like she really thought much about it, and kinda seemed like she was just pleasing me, and said "Yeah, I think a trip to a GI is warrented" . Well, it takes forever to get in, so I made an appointment but for now, just had labs drawn. Here is what is going on since birth...

Birth- Cryed all the time for months, all times of the day, hardly slept, was just NEVER happy, breastfed.

8 months comes, breastfed, STOPS eating. Like, nothing going into his body for a long time. Never had a bottle, weaned from breast to nothing. Force fed him concoctions on yogurt, oatmeal, strawberry syrup and formula to tempt him into eating, cryed alot. Doc said it was a "little red" in his ear, that is why, gave antibiotics. I never gave them to him, baby was crying, that makes the ears "a little red". Lost a bit of weight, finally coerced him into drinking strawberry quick formula, yes, mother of the year I know, but the kid wouldnt eat!

10 months gets a MRSA infection, hospitalized. We find out he is anemic, and are doing multiple tests to find out why. Not dietary, and all other tests come back inconclusive.

11 months old gets his first fever of unknown origin. From Sept 07 to Feb 08 he gets 9 fevers of 104 that last for 5-10 days, wont come down with meds. Hospitalized, white blood cell count NORMAL for ALL of them, AIDS tests, spinals taps for meningitis, everything you can imagine, nothing shows up.

March 08 he gets his first episode, as I call them. He was across the room, I was on the floor and said Come here baby. He starts to come, stops, looks scared, starts walking to the side and falls over. Trys to get up, falls back over, can not get up. Doc says if it happens again, bring him in, maybe his equlibrium was off from popping ears.

June and July has 4 more of these episodes. The last one he couldnt even hold up the top half of his body and last longer. EEG and MRI normal. Blood work for protien normal. Clotting normal. Last one was at the end of July.

He has eczema terribly. It comes and goes, he gouges his skin. We dont have eczema on either side, and I have 3 other kids that do not have it. His skin is ROUGH.

Whole life has had diarreah. It is NEVER normal. Always loose, and has resulted in many-a-diaper rashes.

He has dark circles under his eyes always. He gets pretty lazy and tired alot. Would eat all day if I let him, he does not get full.

Now, believe it or not, ALL that didnt send a signal to the doctors. They treated all the sypmtoms, but I have been telling them for some time, SOMETHING is wrong with him, without being able to put my finger on it.

Why? Because he is the craziest child I have ever seen lol. He is happy, laughing, fun loving, then starts screaming and crying. I can see the moods coming on. I told the doctor, he is disciplined, I have seen bratty undisiciplined children, my child is DIFFERENT. He is smart, talks well, but he irritated and moody. Up and down at the drop of a hat. I dont know what to do. I dont even think he can feel, he gets hit or falls or touches the hot stove REPEATEDLY and DOES NOT CARE. He got cut with a razor on his finger and didnt say a peep, just walked around like nothing even happened. Blood everywhere and no crying. Umm? Your 2, you should be SCREAMING. I dont get it, who knows, maybe unrelated, but all info here is all his little problems to me. He has no feeling.

I was telling a friend about this, and she said it sounded like her son, and he has celiacs. I looked it up, and am like OH WOW, THAT is my baby!!!! He has so many symptoms of it. Up days and down days. He even has a big belly!!! He hasnt gained weight in a year, 29 lbs forever! His body is getting skinnier, but his belly is sticking out. We always just figured he was sprouting up and looked ethiopian!

So, I bring my hypothesis to the doctors yesterday. ALL these things are just coincidence that he has? All these things that NO ONE has been able to tell me. She seemed skeptical, but appeased me. I know my son, I see him, and I know SOMETHING is going on inside his little body. They have been doing every test under the sun and found nothing.

Labs drawn today, but from everything I have read, they are not real reliable. His GI appointment is May 21st (Was going to be september, but had a cancellation! LUcky me!). I want to take him off gluten NOW. Can I? If they do a biopsy does he have to be on gluten ? For how long? Do any of these other bizzare things sound like they could have something to do with a food allergy (fevers, dizzy spells/vertigo)?

ETA : He also CONSTANTLY has a runny nose, like, ALL THE TIME. It doesnt leave. He also has something called occular albanism which causes poor eyesight and he has worn glasses since he was just 1. I thought maybe this was the behavior problems, but the doc said that usually doesnt cause behavior problems. She seemed to think it wasnt out of the normal, but he is seriously hot and cold and screaming and crying over nothing suddenly to often.

Your "poor two year old", indeed! I am half way through responding to your PM and looked over here to see what you had posted. You poor thing, and sooo sorry about your baby boy. MRSA is a nasty infection, and unfortunately makes the person vulnerable to it for a long time after--every little scratch can get a new MRSA infection for I don't know how long. My brother had one and it keeps coming back, then my father got one, presumably because he had been exposed to it by my brother.

Now, about the tests for celiac. What labs were done and what were the results? At the least you need to have EMA and tTg blood tests done, known as the 'celiac panel'. An allergy panel won't show celiac. Your child may not have an allergy to wheat, but still have positive for celiac. Celiac is an auto-immune disorder, not an allergy. There are many, many posts on the board that give great info on all the tests--I think there about 5 tests total that can be done for the celiac antibodies.

I am kind of writing you twice in 2 different formats, so bear with me if I repeat myself. A dietary change will have an immediate affect on the test results, so it's a tough call as a parent as to wether or not to go gluten-free before the appt. Help me understand--is the appt. in May or Sept? Your PM said Sept. If it is in May, I would have to recommend (with a pit in my own stomach for the awareness of what it means) to continue with the regular diet until you see the GI; but I only recommend it because it is the responsible thing to do. I changed my daughter's diet after the blood work was positive for celiac, she was very sick, the biopsy came back negative, and all other avenues had been pursued. I found out much later that the biopsy had been misread, but by that time we had been completely gluten free for months with AMAZING results.

MRSA, chronic ear (or any) infection, virus, stress--any one of these things can cause the onset of celiac symptoms in those who are predisposed to it. Celiac catches many people unaware, even in their later years. For children, the most common symptoms they seem to 'present' with are abdominal issues, failure to thrive, bloated belly, and behaviors, but the list of possible symptoms is pretty staggering--joint pain, skin disorders, neurological problems, weight GAIN. So, it sounds like you've got a match.

I am sooo sorry to hear your boy is not well. Post his celiac blood work here for us. There are many well informed members who can tell you what they mean. I will finish writing back on PM.

[Lovemy4babies]

IM sorry I wasnt specific! I found a thread that you responded to with the name of a Doctor in Royal oak. I called to make an apopintment there yesterday and they cant get me in until Septemer. I called around and ended up finding a cancellation spot on May 21st with a Doctor at childrens hospital in Detroit. So his appointment is in May.

He has had MRSA a couple times since he was 10 months old. My twins got it at 10 months old also, and have each had it twice too. I have had it once. My sister gave it to us, her and her husband get it often, I had never even heard of it. Its pretty nasty and very very annoying.

He had the celiac panel and an list of other *allergy* blood tests taken (this is what she said to me). It was just taken yesterday at Troy Beaumont, they said 2 days, whcih is tomarrow, for them to come back. So it will be monday since the office is closed saturdays (unless there is another way to get the results?).

If I take him off gluten now, and see what happens, at least I would have that to tell the GI right? And then maybe reintroduce it a week before GI appointment, so it will be in his system, or does that not work like that? I just heard of Celiac 3 days ago. And it is my son to a T. Thanks for your help!

[Lovemy4babies]

Hi, you should keep him on gluten until you see the GI if they are going to do a biopsy otherwise it might not be accurate. Good luck to you. I just don't know but Mothers Intuition is so important. I am glad they gave you the celiac test since you asked for it! If it seems like gluten is the issue, I'd say there is a good chance that it is.

The part about him falling down and not being able to stand is very disturbing though and it makes me wonder if anything else is going on but I don't know how celiac might cause that. Maybe it would and I"m sure you'll get more educated responses!

When he was born there was somethign found in a MRI that he had because of a paralysed vocal cord the 2nd day after birth. It was called an ischemic infarction of the brain. Basically, a stroke. Now, I nor my doctor new this until after his episodes when going back over all his records. So, he had another MRI done, nothing. EEG done, nothing (or maybe EKG, looking for seizure activity). Then they just went away. Every test has come back negative for whatever was being tested. My son is not just having these things for NO reason! I read on a website that ... Oh here is something...

There are many neurological problems that in undiagnosed and untreated Celiac disease but include neuropathy, balance problems (ataxia), seizures, MS-like symptoms, headaches, memory impairment, depression and anxiety, inattention (ADD/ADHD), schizophrenia, dementia, muscle weakness, childhood developmental delay, autism (Asperger's).

I found in a few places it can cause balance and dizziness. So who knows. Its just all his medical history, some may or may not be related. Just thought I would throw it out there in case.

[mimommy]

Since you had the tests at Beaumont, they would have only done the EMA and tTg for the celiac panel, and probably did the allergy test for the top 7--wheat, dairy, soy, corn etc.

You will probably be waiting about two weeks for the results, we did. I'm so glad you had them done there. Waiting is awful when your child is suffering, I know. If you feel that it is necessary, you can always go to the ER, then they HAVE to see you.

The only harm in starting the diet is that you will have to go back to gluten if you need to have the endoscopy/biopsy. If you choose to try gluten-free, I can help you with info on where to shop locally, restaurants, etc. Look up the tccsg.com (tri-county celiac support group). Later today I will post links for you that might help.

[mimommy]

When he was born there was somethign found in a MRI that he had because of a paralysed vocal cord the 2nd day after birth. It was called an ischemic infarction of the brain. Basically, a stroke. Now, I nor my doctor new this until after his episodes when going back over all his records. So, he had another MRI done, nothing. EEG done, nothing (or maybe EKG, looking for seizure activity). Then they just went away. Every test has come back negative for whatever was being tested. My son is not just having these things for NO reason! I read on a website that ... Oh here is something...

There are many neurological problems that in undiagnosed and untreated Celiac disease but include neuropathy, balance problems (ataxia), seizures, MS-like symptoms, headaches, memory impairment, depression and anxiety, inattention (ADD/ADHD), schizophrenia, dementia, muscle weakness, childhood developmental delay, autism (Asperger's).

I found in a few places it can cause balance and dizziness. So who knows. Its just all his medical history, some may or may not be related. Just thought I would throw it out there in case.

Yes, I have read about vertigo and ataxia with celiac, also. And issues with the cerebellum. More later, with links...

[Lovemy4babies]

Yes, I have read about vertigo and ataxia with celiac, also. And issues with the cerebellum. More later, with links...

Ataxia and vertigo were the exact words on the referral to the neurologist we saw at childrens.

[home-based-mom]

He has had MRSA a couple times since he was 10 months old. My twins got it at 10 months old also, and have each had it twice too. I have had it once. My sister gave it to us, her and her husband get it often, I had never even heard of it. Its pretty nasty and very very annoying.

According to a school nurse who goes to my church, MRSA has become the fourth leading cause of death in the US. (I'm sorry - I don't know where she got that statistic but probably from a professional publication.) It's not annoying. It's deadly.

It stays alive on surfaces for up to 90 days. You need to disinfect every surface in your house that you touch with your skin with alcohol or bleach. That includes furniture. Because of repeated infections, you may even want to wash your clothes in alcohol.

Your sister and her husband need to do the same thing.

If anyone has a gym membership, cancel it NOW because that gym is not cleaning surfaces between users.

More info:

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I really hope you find a doctor who will look at your son as a whole person and not just as a list of symptoms. Something is obviously wrong and the poor little guy needs to start down the road to recovery as soon as possible.

[Lovemy4babies]

According to a school nurse who goes to my church, MRSA has become the fourth leading cause of death in the US. (I'm sorry - I don't know where she got that statistic but probably from a professional publication.) It's not annoying. It's deadly.

It stays alive on surfaces for up to 90 days. You need to disinfect every surface in your house that you touch with your skin with alcohol or bleach. That includes furniture. Because of repeated infections, you may even want to wash your clothes in alcohol.

Your sister and her husband need to do the same thing.

If anyone has a gym membership, cancel it NOW because that gym is not cleaning surfaces between users.

More info:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

I really hope you find a doctor who will look at your son as a whole person and not just as a list of symptoms. Something is obviously wrong and the poor little guy needs to start down the road to recovery as soon as possible.

IM sorry, perhaps I didnt explain our history well enough as I wasnt really thinking it was celiacs related!

My husband worked at the public schools as a custodian when my kids first got it. My first son who is a twin was hospitalized 2 times for ear infections (yeah that is a whole other story) a month before he got it. My sister and her husband had it for a while before this though. So really, it could have come from any number of places.

In his diaper area, a red boil appeared. My daughter, his twin, a week later, got a red boil. They were on antibiotics and it went away. I disinfected my ENTIRE house, every nook and crany. This is when they were 10 months old. Joshua was born 2 months later, and at 10 month old, so a year later almost to the exact DAY, he got the infamous red boil in his diaper area. Antibiotics, went away. Sterilized my house. I asked, WHY in the world, and HOW in the world, could he have gotten it at the same exact age, a year later, and they dont have it, no one has had it since then, then he just came up with it. They told me no matter how much I disinfect our home, it is in our noses, on our skin, ect.

He just got it again maybe 3 weeks ago on his chin. Elijah (my older twin) had it maybe 7 months ago on his knee. Elizabeth I think has only had it the one time. I had it once on my stomach while pregnant with my baby who is now 8 months. The doctor didnt even give me antibiotics because it was already draining, and it was positive for MRSA.

My sister and her husband and kids all have had it at various times. They seem more suseptible to it though, they have had it much much more. She also disinfect.

To make the assumption that I dont know it is dangerous and that I need to clean is far fetched. MRSA is extremely annoying to me. I wish it never got here. Now it is here, and we deal with it as it causes us harm. Luckily the kind of MRSA we get is the skin infection, when it gets in the blood it really really bad, usually when people die from it. I disinfect everything on a normal basis anyway. I am a freak like that.

Thanks for all the links, but I am in contact with quite a few doctors because of it. Infectious disease has said it is in 70 percent of homes, even if it doesnt cause a problem. It will always be in our home. People come to my home and dont get it. My dh lives here and has never had it. My baby has never had it. I have had it once in 3 years. Elizabeth has had it once in 3 years, the other 2 boys twice. I know what it is, how it works and what the dangers are. Thanks though

[home-based-mom]

IM sorry, perhaps I didnt explain our history well enough as I wasnt really thinking it was celiacs related!

My husband worked at the public schools as a custodian when my kids first got it. My first son who is a twin was hospitalized 2 times for ear infections (yeah that is a whole other story) a month before he got it. My sister and her husband had it for a while before this though. So really, it could have come from any number of places.

In his diaper area, a red boil appeared. My daughter, his twin, a week later, got a red boil. They were on antibiotics and it went away. I disinfected my ENTIRE house, every nook and crany. This is when they were 10 months old. Joshua was born 2 months later, and at 10 month old, so a year later almost to the exact DAY, he got the infamous red boil in his diaper area. Antibiotics, went away. Sterilized my house. I asked, WHY in the world, and HOW in the world, could he have gotten it at the same exact age, a year later, and they dont have it, no one has had it since then, then he just came up with it. They told me no matter how much I disinfect our home, it is in our noses, on our skin, ect.

He just got it again maybe 3 weeks ago on his chin. Elijah (my older twin) had it maybe 7 months ago on his knee. Elizabeth I think has only had it the one time. I had it once on my stomach while pregnant with my baby who is now 8 months. The doctor didnt even give me antibiotics because it was already draining, and it was positive for MRSA.

My sister and her husband and kids all have had it at various times. They seem more suseptible to it though, they have had it much much more. She also disinfect.

To make the assumption that I dont know it is dangerous and that I need to clean is far fetched. MRSA is extremely annoying to me. I wish it never got here. Now it is here, and we deal with it as it causes us harm. Luckily the kind of MRSA we get is the skin infection, when it gets in the blood it really really bad, usually when people die from it. I disinfect everything on a normal basis anyway. I am a freak like that.

Thanks for all the links, but I am in contact with quite a few doctors because of it. Infectious disease has said it is in 70 percent of homes, even if it doesnt cause a problem. It will always be in our home. People come to my home and dont get it. My dh lives here and has never had it. My baby has never had it. I have had it once in 3 years. Elizabeth has had it once in 3 years, the other 2 boys twice. I know what it is, how it works and what the dangers are. Thanks though

Forgive me. I did not mean to imply anything offensive. Bowing out of conversation.

[ang1e0251]

Poor little guy, but he does need to stay on gluten for his biopsy. Maybe you could call around and ask just how much he needs to eat for the test to be accurate. There is a celiac center in the University of Chicago. They have a web-site too. Then he could just eat that much every day.

[mimommy]

Oh, I am such a dork--I have been going back and forth between windows copying links here for you, and then I CLOSED the window and lost my post.

One more time...

info on celiac and the diet:

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Neuro:

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blood tests:

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ataxia:

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"The intestinal IgA deposition pattern was similar to that seen in patients with overt and latent celiac disease and in those with dermatitis herpetiformis. Widespread IgA deposition around vessels was found in the brain of the patient with gluten ataxia but not the control brain. The deposition was most pronounced in the cerebellum, pons, and medulla. CONCLUSIONS: Anti-tissue transglutaminase IgA antibodies are present in the gut and brain of patients with gluten ataxia with or without an enteropathy in a similar fashion to patients with celiac disease, latent celiac disease, and dermatitis herpetiformis but not in ataxia control subjects. This finding strengthens the contention that gluten ataxia is immune mediated and belongs to the same spectrum of gluten sensitivity as celiac disease and dermatitis herpetiformis."

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"Celiac is clearly an autoimmune disease. The gliaden portion of the gluten protein contains a sequence of amino acids that trigger the immune reaction. When they bind on to the intestinal mucosa they act as an antigen and summon killer lymphocytes to attack. The immune system also develops an immune reaction to the muscle lining of the intestine, the endomysium and the enzyme transglutaminase. [8] People with celiac disease make antibodies which attack both the endomysium and the enzyme transglutaminase. Once this autoimmune process has been triggered, damage occurs in other parts of the body and not just the intestine.

Neurological damage occurs with celiac disease. Early on this was thought to be due to nutrient deficiencies caused by malabsorption. Current research shows that the problem is more complex. Celiac disease stimulates the production of antibodies which attack areas besides the intestine including the central nervous system. About 40% of patients who suffer from idiopathic sporadic ataxia have celiac disease which damages their central nervous systems. [9,10,11] The neurological symptoms of celiac disease mimic the symptoms of multiple sclerosis to the degree that celiac must always be ruled out when diagnosing this disease. [12] The neurological conditions caused by celiac disease are now called gluten ataxia and cause damage to the cerebellum, the posterior columns of the spinal cord, and the peripheral nerves. [13]

The studies on gluten ataxia have revealed a significant statistic. In patients who had clearly measurable antibodies that are diagnostic of celiac disease and were suffering from gluten ataxia, only 13% had any gastrointestinal complaints. In other words, the hallmark symptoms of poor digestion we associate with celiac disease and use to diagnose the condition may be absent in 87% of patients with gluten related problems! [14] This suggests that celiac may be way under diagnosed."

biopsy not necessary?

Open Original Shared Link

Yes, I've spent a lot of time researching since our daughter was diagnosed

Hope these are helpful. Hope you see improvement and find answers ASAP!

[Jestgar]

To make the assumption that I dont know it is dangerous and that I need to clean is far fetched. MRSA is extremely annoying to me. I wish it never got here. Now it is here, and we deal with it as it causes us harm. Luckily the kind of MRSA we get is the skin infection, when it gets in the blood it really really bad, usually when people die from it. I disinfect everything on a normal basis anyway. I am a freak like that.

MRSA is just a staph infection. Can be dangerous, but doesn't have to be. Some percentage of people (don't remember the number) are chronically colonized with MRSA, as determined by a nose swab. Most of these people never get sick.

If you really really wanted to try to eradicate it, you'd probably have to treat everyone in the family (and extended family) with antibiotics at the same time. Ultimately, it would probably make no difference. I remember hearing that carriers are carriers, if you clear their colonization, they'll just pick it up again from someone else.

[Lovemy4babies]

MRSA is just a staph infection. Can be dangerous, but doesn't have to be. Some percentage of people (don't remember the number) are chronically colonized with MRSA, as determined by a nose swab. Most of these people never get sick.

If you really really wanted to try to eradicate it, you'd probably have to treat everyone in the family (and extended family) with antibiotics at the same time. Ultimately, it would probably make no difference. I remember hearing that carriers are carriers, if you clear their colonization, they'll just pick it up again from someone else.

Exactly. Mrsa is a penecillian resistant staph, so we gotta use some bactrum (I know I slaughtered how to spell those meds!).

Every time we go to the hospital we are in a private room beacuse we are contaminated. They have done nose swabs, but it recolonizes. It can reolonize and do no harm. I am sure dh is colonized, he lives here with us! They have nose drops to kill it, but it comes back.

We have used Hibiclens soap (surgical scrub) that kills it also, but alas, it comes back. The first infection we had here was August of 06 (twins), then August of 07 (Joshua) , February 08 (Me), September 08 (Elijah) and March 09 (Joshua, I believe this one was MRSA, never tested him though, just gave antibiotics before it had a chance to really manifest typical MRSA characteristics, doctor just gives antibiotics now!). The trend seems to be every 6 months one of us gets a bump. They have never been an infected cut or scrape. Always comes from benethe the skin with no head. They lance them and give antibiotics and send us on our way!

It really is a sore subject for me, I hate it, I hate that I have to deal with it. BTW, I have moved TWICE since the kids first got it, and EVERYTHING has been cleaned while moving, and it STILL follows us. So really, no excuse as to why it it still here besides it is living all over us

[Jestgar]

I've forgotten, is your whole family gluten-free?

I sorta think that the bacteria is more likely to infect someone with a low immune system. Maybe if you worked on sorting out what your family should, and should not, be eating, it would help with the reinfections.

[SGWhiskers]

Your comment about your 2 year old being hungry all the time and not feeling pain reminded me of a genetic syndrome called Prader Willi Syndrome. Open Original Shared Link

I hope that your son has celiac because it is so treatable, but keep an open mind to other possitilities. You may also want to take him to the genetics center at U of M. I agree that your son has serious health problems and you are doing the right thing trying to figure them out at his young age. Way to go Mom!

[Lovemy4babies]

I've forgotten, is your whole family gluten-free?

I sorta think that the bacteria is more likely to infect someone with a low immune system. Maybe if you worked on sorting out what your family should, and should not, be eating, it would help with the reinfections.

NO we are not gluten free. I just heard of this the other day when someone said my son sounded like her son. I was looking into candida and red dye. We eat actually very healthy. More so now then before, but we dont buy junk or processed food. We eat tons of plain yogurt and fruit, veggies, and fresh meat. We use Eziekiel bread which is just about as healthy as you can get (if you can eat gluten lol).

I am trying dh and ds on gluten free starting monday. For a week, just to see. My husband (I dont really worry about him because he has done this his whole life and said that a doctor said it was fine) throws up ALL the time. He swallows it though (yuck I know). He has done it for so long he just learned to deal with it. At least 1 time a day, sometimes more. The food somes up looking EXACTLY what it did when it went down (he has done it in a toilet before, usually though it is swallowing). He has dark circles and always is constipated or diarreah. He gets pretty depressed at times about himself but not to often, it used to happen more. I always just thought he had low blood sugar or something, which he is slightly low but not to bad. (60's). I was looking up what is wrong with ds, and it hit me the other night that this could be what is wrong with dh also. I always thought it was weird he throws up all the time!

[Lovemy4babies]

Your comment about your 2 year old being hungry all the time and not feeling pain reminded me of a genetic syndrome called Prader Willi Syndrome. Open Original Shared Link

I hope that your son has celiac because it is so treatable, but keep an open mind to other possitilities. You may also want to take him to the genetics center at U of M. I agree that your son has serious health problems and you are doing the right thing trying to figure them out at his young age. Way to go Mom!

I am definatly open to anything, the doctors are treating symptoms and there has GOT to be a reason my baby keeps having weird things happen to him. I am convinced it is a food allergy, gluten or not. I checked up on that disease, he doesnt have nearly any of the symptoms aside from that, and on the little check list, he only has 1 1/2 points and 5 is what they say is likely it.

The episodes and the fevers havent happened in a while (the fevers a year, and episodes a year in july) so who knows, I dont think they are related, but they are something that has been in the back of my mind.

He is anemic for no reason, has a big belly, eczema, dark circles under his eyes (posted a pic in the children section of belly and circles), constant diarreah and mood swings. I think they are all major signs of celiac, so they are testing. I want to do the diet for a week. Just to see if anything changes, wouldnt that be helpful to tell the GI? He doesnt go until may 21st, so if he is off gluten from 13th-20th, that is a whole month before GI, and this is just a consult. I am going to have to make a separate appointment if they decide to do a biopsy, and that will be even longer, gluten should be back in the system for a month of eating it right?

btw, I just posted up there about my dh, my husband is also anemic, and not dietary.

[caek-is-a-lie]

March 08 he gets his first episode, as I call them. He was across the room, I was on the floor and said Come here baby. He starts to come, stops, looks scared, starts walking to the side and falls over. Trys to get up, falls back over, can not get up. Doc says if it happens again, bring him in, maybe his equlibrium was off from popping ears.

Just a thought, but I get temporary muscle paralysis from eating gluten. Celiac caused my Narcolepsy and I get episodes of Cataplexy (temporary muscle tone loss.) It's the same thing that keeps you immobile when you're dreaming so you don't act out your dreams, but my brain misfires and it happens when I'm awake because some of the cells in my hypothalamus are damaged. It's otherwise harmless and I just have to wait for it to pass. I can feel it coming on right before it happens and what happened to your son sounds similar...maybe he felt the attack coming on and it frightened him because he didn't understand it and knew it was beyond his control. (this is just speculation on my part, btw. I just know what it's like to fall over a lot. lol)

It's supposed to only be triggered by emotions, like laughing at a joke, playing a game, or getting angry. When I'm gluten-free, these are my only triggers. But when I eat gluten, it happens spontaneously, too. For me it started in my teenage years, but kids can get it too. I don't know if this is the same as what you're son is experiencing, but I just wanted you to know that there are neurological symptoms from gluten intolerance and that they're not all quite as serious as something like Epilepsy. And what I mean by that is, each episode isn't making it worse.

There's another neurological symptom of gluten intolerance called Gluten Ataxia. The antibodies attack the cerebellum and it affects balance and coordination. This is also a possibility considering your son's symptoms.

If you don't get help from you doc and you can't find a better doc in your area, I suggest trying a gluten-free diet anyway. If it is gluten causing your son's problems, they'll only get worse the longer he eats gluten. If it's not gluten, well my heart goes out to you and I hope you can get the proper help for him so he can feel better! But, from what you described, overall it does sound like gluten intolerance.

[caek-is-a-lie]

He is anemic for no reason, has a big belly, eczema, dark circles under his eyes (posted a pic in the children section of belly and circles), constant diarreah and mood swings. I think they are all major signs of celiac, so they are testing. I want to do the diet for a week. Just to see if anything changes, wouldnt that be helpful to tell the GI? He doesnt go until may 21st, so if he is off gluten from 13th-20th, that is a whole month before GI, and this is just a consult. I am going to have to make a separate appointment if they decide to do a biopsy, and that will be even longer, gluten should be back in the system for a month of eating it right?

Sounds like Celiac to me, but if he has a GI appt, keep him on gluten until after the blood tests and biopsy. If his small intestines start to heal, they might not find any villi atrophy and it will complicate diagnosis. If your docs are obsessed with numbers on paper more than the symptoms of your child, you'll want to make sure they get those numbers! I know it's hard to wait. I have heard that you have to be on gluten for at least 3 weeks before the tests, so maybe your 1 week trial will be ok. But hopefully other parents will weigh in since they've had more experience than I have with the testing.

Good luck!

[nora-n]

Both constipation and throwing up are typical celiac symptoms too.

nora