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So Frustrated...


andersonfam06

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TCA Contributor

still praying that you figure all of this out. Has he been tested for a staph infection? My father had terrible fevers with a staph infection from a test he had run. I don't know if it's even possible. Has he been tested for Mono? It can sometimes present with mysterious symptoms and drs. don't test for it. This also happened to my father. He was told he was dying and they didn't know why. Turned out to be mono...... I know these may be far fetched, but not out of the realm of possibilities.


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andersonfam06 Apprentice

we have 2 appointments next monday... with his specialists.

no, we still have no dx, aside from "virus"... again, i totally understand that a virus is a possibility, and not that unrealistic of one, however, i feel that as of late "virus" has been a coverall for unexplained illness... especially since the doc would tell me that his blood work does not in fact read like he has a virus. i guess we'll see.

at least his temp is down. i am not AS worried. still worried, but not as entirely worried.

GFBetsy Rookie

Mono is a good suggestion - my good friend's son had fevers and lack of appetite for a long time, and they finally figured out it was mono .. . of course, there's not much you can do for it, but knowing what the cause behind the illness was makes things much easier to cope with.

Good luck!

Michelle L. Newbie

I agree with 2kids4me. I have a Kawasaki son - and it sounds like they're overlooking it. It's serious if not dealt with! I'd keep pushing and we'll keep you in and your family in our prayers.

Michelle L,

andersonfam06 Apprentice

he has no other symptoms of kawasaki...

and he was tested for mono... not the culprit this time! :)

Fiddle-Faddle Community Regular

I'm so sorry to hear what you are going through, and absolutely shocked at how you were treated. When my daughter at 5 weeks developed a fever of 101, the ped sent her to the ER where she was treated for meningitis--we were told that with babies under 3-4 months, if they waited long enough to find out what it was, it would be too late if it were meningitis,

As it turned out, it was a virus--but we had the same experience--by the time we got to the ER, her fever was nearly 105, and it didn't respond to Tylenol or Advil, even when alternated.

Are you able to breastfeed? That would be the very best thing to help him through this, but don't feel bad if you can't. Things don't always work out the way we plan.

Big question: did Lanigan receive any vaccines within a few days of developing this fever? If so, then I would believe that he is having a vaccine reaction. Severe reactions like this are far more common than either the peds or the pharmaceutical industry will ever admit.

If you think there is any chance that this was a vaccine reaction, DO NOT let him get any other vaccines until he is older. Much older. And then, pick and choose--one vaccine at a time, not 3 or 4, and make sure that the physician you choose officially labels him as having had an adverse reaction. Even if you have to go out of plan and out of pocket to get him medical care.

Sending good thoughts and prayers your way--please keep us posted, okay?

andersonfam06 Apprentice

nope, he has had no vaccines in over 2 months. he developes a fever like this about every 3-5 weeks. serisouly, thats crazy!! i keep being shrugged off and told that kids get sick 10 times a year. well, i don't like it. and i disagree. i think if a kid starts getting sick as often as mine does, along with the other GI issues, and being underweight, there is something going on.

our hospital is like the hospital from... yeah, you know...

its not just me. a friend of mine was there yesterday with her 10 month old, whose throat was swelling shut to the point that she was obviously working to move air, and drooling all over herself... they sent her home and told her to mix keopectate and benedryl and coat her throat with it.. ummm. okay?! freaks.

but, lanigan is doing a little bit better. he threw up at least 7 times yesterday though. which was gross cause i had strayed off the fruit and veggie only diet and given him some meat. yuck. so today is a clear liquid day so his tummy can rest. silly... i mean, i understand but then don't. his GI doc want's him to put on weight, but if he has a day like yesterday we are suppose to clear liquid it for 24 hours... grrr.


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Nic Collaborator

he developes a fever like this about every 3-5 weeks.

I don't know if anyone remembers but I posted several months ago that my son (not as young as Lanigan, he is 5 yrs. old) kept getting sick with mysterious high fevers. It seemed like it was at least once a month and his fevers would go up past 105, almost 106. I was wondering if maybe his immune system was compromised a bit from all of the malabsorption. My sister and I have 5 kids between us who are together every day and while some of the rest would catch it from Jacob, he was always the one to start it and he would get the sickest, with the highest fever. I would bring him to the doctor and they would say it is viral. Then all of a sudden it just stopped. He hasn't been sick since June, knock on wood. Maybe it is possible that because Lanigan has all the unresolved GI problems his body is not healthy enough to fight off "viral" type infections so he keeps getting sick. Just a thought and an uneducated one at that.

Nicole

Nantzie Collaborator

There has to be SOMEONE or some agency that you can report this hospital to. This is absolutely insane.

andersonfam06 Apprentice

we are working on filing complaints. we have started... talked to a couple of people. it is just a pain cause it is a military hospital and so we have to go through the heirarchy of it all... blah.

wears me out. more than i already am.

i do agree though, that his immune system is probally weakened. or at least weaker than a typical kids... my 3 year old has been sick 2 times in almost 4 years now. and never seriously. or for any length of time.

2kids4me Contributor
its not just me. a friend of mine was there yesterday with her 10 month old, whose throat was swelling shut to the point that she was obviously working to move air, and drooling all over herself... they sent her home and told her to mix keopectate and benedryl and coat her throat with it.. ummm. okay?! freaks

Not defending dcotors - but read the quote below - the treatment given the other child is a real treatment for certain illnesses.

Herpangina usually lasts three to six days. Symptoms typically start with a high fever (103 to 104°F), and mouth sores appear at the same time as or shortly after the fever. Children average about five blisters in the mouth. These blisters are surrounded by red rings and can occur in the back of the throat, on the roof of the mouth, on the tonsils, on the uvula, inside the cheeks or on the tongue. The blisters may start as small red bumps and become ulcers after the blister stage.

Other symptoms might include headache, backache, runny nose, drooling, vomiting and/or diarrhea.

Since herpangina is caused by a viral infection (typically coxsakie virus), antibiotics are not indicated for treatment, said Dr. Sherri Sandifer, a pediatrician with Texas Children’s Pediatric Associates®. Treatment is focused on getting children plenty of fluids, relieving their pain and treating other symptoms.We usually recommend a teaspoon of a mixture of Benadryl and Maalox to coat the throat and ease the pain,” Sandifer said.

Herpangina is spread through the saliva of those who have the virus.

Open Original Shared Link

I really hope they get to the bottom of what is happening with your child, the fevers coming and going so frequently need to be investigated or at the very least monitored and documented by a doctor or nurse practioner. The fevers alone can cause diarrhea which dehydrates, as well as eliminates any weight gain you may have seen. Even if "this time" it turns out to be viral - doesnt mean there is not an underlying condition.

Kathryn was screened for specific viruses that can present like KD even though they were pretty confident she had KD, the infectious diseases doctor had to rule them out

An article that may be of interest, as in you are not alone and it is frustrating when all moms seem to hear first - is - " looks viral"

Mysterious childhood viruses

23 March 2005

Parents of babies and toddlers get concerned when a fever and illness continues for a long time. And it's frustrating when the GP tells you the child has a virus. But now a recent study of nearly 300 babies from birth, testing their saliva for a virus called Human Herpesvirus 6, may provide an answer for some.

Human Herpesvirus 6, or HHV 6 as it's commonly known, has been a bit of a mystery. It's known to cause a rash called roseola and some say it's a high risk for febrile convulsions (fever fits).

The study showed that HHV 6 didn't cause any fever fits in the children, even though about 80 per cent of them were infected by the age of two. Most kids caught HHV 6 between nine and 21 months. Girls were more at risk than boys, as were children with older brothers or sisters.

While HHV 6 didn't cause major harm, it did produce symptoms like fever, fussiness, rash and loose motions which lasted longer than other viruses - about nine days compared to an average of three.

This would have prompted more parents to seek help from a doctor, who doubtless told them it was a virus.

Open Original Shared Link

andersonfam06 Apprentice

thanks for the article.

2kids4me Contributor

another site that may provide some diretion is an e-Medicine article on fevers - goes through differentials etc.

Open Original Shared Link

Also This is from a medical site as well - at first I thought the doctor who asked my child to jump up and down musta stayed up too late watching TV til it was explained to me..

I thought she was nuts at first, but it is a real diagnostic tool sometimes what doctors do, makes no sense.

Having a patient raise the hips and buttocks off of and then drop them onto the examining table may elicit pain consistent with peritonitis. It is critical to have the child in whom the diagnosis is in question get off of the examining room table and jump up and down. Jumping elicits peritoneal signs. A patient with appendicitis will rarely jump up and down more than once and will have pain with doing so. Holding a hand above a child's head and challenging him or her to jump and touch it is irresistible to most children except those in whom pain is produced. As mentioned previously, monitoring how the patient moves on and off the examining table is also valuable.

Open Original Shared Link

Again, I hope they dont ignore the recurrent fevers etc., ask lots of questions.

It is not unreasonable to ask for bloodwork to be done, to rule out celiac, or other conditions that could be causing the clinical signs

andersonfam06 Apprentice

i don't suppose my 10 month old is gonna be jumping up and down anytime soon... :) at least not on his own.

2kids4me Contributor

..or answer questions about "where does it hurt" and "how do you feel".... or co-operate with any strange guy/gal sticking thermometer up their butt or in their ear! :huh::o:blink:

andersonfam06 Apprentice

oh for sure...

i just wish we had an answer. so that i had some idea of how to make him feel better...

Judyin Philly Enthusiast

Good Morning

wish i knew your name, have been praying for your son. It took me forever to find your thread..since it isn't on the main topics now.

i've been watching CNN and there has been so much on MRSA and high fevers..hate to even bring it up but ck cnn for reports. saw on evening news last nite too.

Also there is a new forum for pts. and dr's on it. I went on and got a answer from dr in 5 min..sure beats dr's office...

Elonwy posted it will try to find the thread and think the pedtrician on there is Josh...will try to find it and pm you .

hope he is better now but you say fever keeps re appearing so don't think it's MRSA as it doesn't follow this pattern I DON'T THINK BUT I'M SURE NO EXPERT.

JUDY IN PHILLY

andersonfam06 Apprentice

DS has a fever AGAIN! It was only 102 yesterday, but spiked to over 105 this morning. Fortunately, motrin seems to be knocking it down to at least 102 again. I am so tired of this happening to him, and no one seems to have any answers for me... virus virus virus... i am so tired of hearing that blasted word! it seems like their excuse for anything they can't explain or see with their naked eye.

it hasn't been a full 2 weeks since his last fever went away...

Nikki2003 Contributor

Something is definetely going on it is not norm to have that many fevers especially reaching that high. I am so sorry you are being treated like this. My older daughter is going through something now. She started with a 104.2 fever sunday and has been spiking ever since then yesterday started with a viral looking rash on her chest and back. last night it spread to her face feet legs arm everywhere but not her hands or throat. The dr saw her yesterday and said it is a virus,This was before it spread. She is 6 yrs old I am just hoping nicole soes not get it. She just got over a 6 days fever off and on. We don't need another one yet.

What is weird is that the rash is starting to look like the scarlet fever rash she had last year. But she is neg for strep.

I am clueless.

Celina

Nic Collaborator

Sorry your son is sick again. Hopefully you can get someone to take this seriously.

Nicole

andersonfam06 Apprentice

I'm done with this blasted hospital! The retardo ped told me that fever that high are NOT anything to worry about and do NO damage. Whatever... she never even looked in his throat. Or his mouth. Only his ears and pushed on his tummy. She looked at his old labs, said that they look weird, but that she doesn't want to rerun them til he is healthy...(when the heck is that going to be)... so, she didnt even run labs to look for a bacterial infection today, simply cause she couldn't see one. i asked to be referred, and she told me she would only refer me to an infectious disease doc. which might be alright, although i am not feeling like this is the problem. i don't know. i am just so frustrated. my mom did get involved today, and talked to both the base commander and a senator for idaho. we'll see if this gets us anywhere.

Judyin Philly Enthusiast

Stephanie

did you ever get this site to work for you?

I sent it a couple of different ways

i did a 'quote' copy from her original post.

Glad your Mom stepped in to help.

This is unreal...maybe you can just go one on here and ask the ped. on this site and see what he thinks.

I don't see you getting any help from this hospital..this just does't seem right to me.

hang in there

judy in philly

My doctor asked me to join this site: Open Original Shared Link

Its meant to be a place where doctors and patients can discuss everything medical under the sun. It just started , but there is already two Celiac friendly doctors in the celiac area ( I am the lone patient). My doc, who's awesome, and for whom I was the first adult celiac diagnosis she's ever had, and a pediatrician in Los Angeles who treats kids with Celiac, diabetes and autism.

It looks like its going to be a good place to connect with celiac friendly doctors :)

Check it out :)

Elonwy

TCA Contributor

I've had you and Lanigan on my mind a lot. I do hope you find answers soon. Is this a children's hospital? do you have one near you? I know about the threats and all, but maybe a children's hospital would take you more seriously. Still praying for both of you!

2kids4me Contributor
. i asked to be referred, and she told me she would only refer me to an infectious disease doc. which might be alright, although i am not feeling like this is the problem. i don't know. i am just so frustrated. my mom did get involved today, and talked to both the base commander and a senator for idaho. we'll see if this gets us anywhere.

You go girl, something is wrong and an infectious disease doctor looks at everything and might be able to get a clue by looking at the previous labs and running more tests. When my daughter had KD,. they had also consulted infectious disease doc to advise on any tests that should be done so they only had to poke her once.

Infectious disease doc would be more aware than any other doc about all the diseases (infectious or not) that cause fevers . Bring in a history sheet to show the pattern of the fever**, how or if it responded to motrin or tylenol, let him/her know what your concerns are....

I am keeping you in my prayers, it is soooooo hard when your child has high fevers

** it was the pattern of Kathryn's fever and lack of response to meds that put KD at the top of the list for her... then they ran the correct tests to diagnose and confirm their suspicions.

andersonfam06 Apprentice

We took him to the emergency room of the children's hospital last night. The doc there said that there are suspicious things that need to be looked into. He gave us a couple more referrals. One to a ped Neuro and one to infectious disease. His temp is responding to meds, just not going completely away. It hangs out around 103 with meds. We are trying to write a letter to give to one of the people we talked to at the base hospital. It is proving more difficult than I thought to remember his entire history.

The senator called me back while we were in the ER last night. She also talked to my husband, and my mom. She promises that she will do whatever is in her power so that TriCare will pay for my child's hospital bills and that we can leave this stupid hospital and NEVER look back!

The sucky part is that the referal from the ER doc is no good. We essentially have to take that referral to our primary here on base and they have to make the same referral. So she doesn't have to agree... Thank goodness we finally have some "big" people on our side.

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