Discussions By Condition: I cannot get a diagnosis.

Desperate to help hospitalized daughter!!!!!

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: shannontina1991
  • March 21, 2008
  • 07:49 AM

Our 13yr. old daughter has been sick for over two months. She has been hospitalized since Feb. 20. She started getting headaches daily about seven months ago. Then in early February she started getting a sore throat. Her doctor put her on amoxacillan. She took that for five days but she just seemed to be getting sicker. She finaly stopped eating because of the pain in her throat. She was addmitted to the hospital for dehydration. She had a very sore throat and they discovered that she had multiple ulcers in the back of her throat. She also had terrible headaches, nausea, stomach pain, vomitting, diarehia and she complained of aching all over and joint pain. After five days in our local hospital she was shipped to the Childrens Hospital in Dayton. We found out after two weeks that she has psuedotumor Cerebri. They also found out through a scope that she had multiple ulcers in her esophegis and stomach. Her pain was very hard to control and for the last two weeks they have had her on everything from morphine, demerol, nubain and fentnyl. Currently they have her on oxycontin and fentnyl patches. But after two and a half weeks she is not getting better like she should be. I mean she had been hospitalized for a total of a month and one week and by now she shoud be home and on the mend. But she is not. She is'nt eating and she has been taken off of the I. V. fluids even though she has'nt eat and has stopped drinking. They stopped giving her the feedings through her pick line on Monday. So she hasnt been able to get any nutrition in her system for the past four days. I have a full list of her symptoms below and a list of her current meds as well. Any suggestion you have will be greatly appriated. :(

Symptoms
1. diarriha
2. nausea
3. acheing all over
4. joint pain
5. stomach pain
6. abdominal pain
7. dizziness
8. headaches
9. vomitting

Conditions she has been found to have so far
1. psuedotumor cerebri
2. unkown viral infection that caused ulcers in mounth and stomach.

Current medications list
1.metoclopramide (reglan) 40mg. 3xday
2.ambien 10mg. at bedtime
3.nexium 40mg. 2xday
4.neurontin 300mg. 3xday
5.fentnyl patch 50mg.
6.Topamax 100mg. at bedtime
7.bisacodyl 20mg. once a day
8.acetazolamid 250mg. 2xday
9.acetaminophen/codeine #3 30mg. every 4hr.
10.phenergan 25mg./1ml.
11.oxycontin 20mg. 2xday
12.elavil (they are giving her the maintence dose for pain control)
13.zantac 150mg. 2xday

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10 Replies:

  • What reason did they give for taking her off the PICC line?
    rad-skw 1605 Replies Flag this Response
  • They disconnected her picc line from fluids and lipid feedings because they said that they wanted to force her system to eat on its own. She has gone for four days without being able to keep anything down and has vomitted every day. Late last night they came in and placed a tube down her throat and past her stomach. They placed the tube in her intestines. They said that they will wait to see if the feedings into her intestines helps her stomach to rest. They are not telling us what they are looking for, but they said that if she still reamains nauseas even after they bypassed the stomach that will tell them one thing. And if she begins to improve that will support their other theory. They really pushed yesterday to get rid of her. The attending physician on her case at this time, the attending physicians change in this hospital every two weeks, said that they are at a lose. She said that if this does'nt work we can take her somewhere else. I believe that this new attending is just tired of her being here and simply wants to get her out of here.
    shannontina1991 2 Replies Flag this Response
  • Sorry i cant help u................i know u are so so worried. All i can offer is good wishes & let u know i am thinking about you & ur daughter, as a mum myself i feel your anguish. Hope things improve for u all very very quickly. Big Hugs ! (if only that could help) tootsie xo
    Tootsie 628 Replies Flag this Response
  • Have they tested her for h-pylori? H-pylori has been linked to stomach ulcers. Apparently the h-pylori bacteria are somehow protective against certain types of cancers thought to be caused by viruses. I believe there was one case of h-pylori documented that did in fact cause sepsis. I would also look into Lyme and coinfections. I have high titers of HHV6, parvo, EBV, and I test positive for Lyme and babesia. Even an ID doctor dismissed my symptoms due to the politics involved in diagnosing and treating Lyme, so find a Lyme Literate Medical Doctor on Lymenet. Click on "symptoms": http://www.canlyme.com/ When to Suspect Lyme: http://www.angelfire.com/biz/romarkaraoke/whento.htm Lymenet: http://flash.lymenet.org/ubb/ultimatebb.php Blaze have some respect & behave !
    Tootsie 628 Replies Flag this Response
  • I feel so bad to read how sick your daughter is at such a young age... She is on a ton of drugs... which is probably needed. But I worry about how they are interacting possibly to make her feel even sicker. Some of these drugs side effects cause joint pains, nausea, fatigue, diarrea, headaches vomiting Can you get her to St. Jude's Hospital? I think they may be of help to you if so.... SERIOUSLY... GET HER TO ST JUDES ASAP! Contact them right away by phone and tell them what is happening and all the drugs she is on; ask them for advice on getting there. She needs the expert care they offer so her meds can perhaps be managed better. I am not surprised she cannot eat.... her drug cocktail may need adjusting to decrease the side effects that could be going on. LINK TO ST. JUDES HOSPITALhttp://www.stjude.org/stjude/v/index.jsp?vgnextoid=9532ab46cb118010VgnVCM1000000e2015acRCRD Quote from website:"St. Jude is unlike any other pediatric treatment and research facility anywhere. Discoveries made here have completely changed how the world treats children with cancer and other catastrophic diseases.We are where some of today's most gifted researchers are able to do more science, more quickly. Where doctors across the world send their toughest cases and most vulnerable patients. Where no one pays for treatment beyond what is covered by insurance, and those without insurance are never asked to pay. We've built America's 3rd-largest health-care charity, with a model that keeps the costs down and the funds flowing, so the science never stops.All patients accepted for treatment at St. Jude are treated without regard to the family's ability to pay." Our 13yr. old daughter has been sick for over two months. She has been hospitalized since Feb. 20. She started getting headaches daily about seven months ago. Then in early February she started getting a sore throat. Her doctor put her on amoxacillan. She took that for five days but she just seemed to be getting sicker. She finaly stopped eating because of the pain in her throat. She was addmitted to the hospital for dehydration. She had a very sore throat and they discovered that she had multiple ulcers in the back of her throat. She also had terrible headaches, nausea, stomach pain, vomitting, diarehia and she complained of aching all over and joint pain. After five days in our local hospital she was shipped to the Childrens Hospital in Dayton. We found out after two weeks that she has psuedotumor Cerebri. They also found out through a scope that she had multiple ulcers in her esophegis and stomach. Her pain was very hard to control and for the last two weeks they have had her on everything from morphine, demerol, nubain and fentnyl. Currently they have her on oxycontin and fentnyl patches. But after two and a half weeks she is not getting better like she should be. I mean she had been hospitalized for a total of a month and one week and by now she shoud be home and on the mend. But she is not. She is'nt eating and she has been taken off of the I. V. fluids even though she has'nt eat and has stopped drinking. They stopped giving her the feedings through her pick line on Monday. So she hasnt been able to get any nutrition in her system for the past four days. I have a full list of her symptoms below and a list of her current meds as well. Any suggestion you have will be greatly appriated. :( Symptoms1. diarriha2. nausea3. acheing all over4. joint pain5. stomach pain6. abdominal pain7. dizziness8. headaches9. vomitting Conditions she has been found to have so far1. psuedotumor cerebri2. unkown viral infection that caused ulcers in mounth and stomach. Current medications list1.metoclopramide (reglan) 40mg. 3xday2.ambien 10mg. at bedtime3.nexium 40mg. 2xday4.neurontin 300mg. 3xday5.fentnyl patch 50mg.6.Topamax 100mg. at bedtime7.bisacodyl 20mg. once a day8.acetazolamid 250mg. 2xday9.acetaminophen/codeine #3 30mg. every 4hr.10.phenergan 25mg./1ml.11.oxycontin 20mg. 2xday12.elavil (they are giving her the maintence dose for pain control)13.zantac 150mg. 2xday
    TaylorDeelwithit 382 Replies Flag this Response
  • HUGE RED FLAG!The parts in red below in your text.... pretty much say the drs haven't a clue, do not know, and aren't too likely to figure it out promptly. The longer this goes on this way... the sicker she will get. She needs to be taken to St. Jude's Childrens Hospital. If you lack transportation funds talk with them.... They may a way to help you get there to St. Judes. Or raise money from the friends and community around you (like your church if you attend one) Obviously the drs you are seeing now aren't helping her at all.... time to move on and try another course. They have been spinning their wheels it seems. How long has she been ill? Years? Months? Days? Other illnesses? Always been sickly? Has she been on a lot of medications before this illness? tdwi:rolleyes: They disconnected her picc line from fluids and lipid feedings because they said that they wanted to force her system to eat on its own. She has gone for four days without being able to keep anything down and has vomitted every day. Late last night they came in and placed a tube down her throat and past her stomach. They placed the tube in her intestines. They said that they will wait to see if the feedings into her intestines helps her stomach to rest. They are not telling us what they are looking for, but they said that if she still reamains nauseas even after they bypassed the stomach that will tell them one thing. And if she begins to improve that will support their other theory. They really pushed yesterday to get rid of her. The attending physician on her case at this time, the attending physicians change in this hospital every two weeks, said that they are at a lose. She said that if this does'nt work we can take her somewhere else. I believe that this new attending is just tired of her being here and simply wants to get her out of here.
    TaylorDeelwithit 382 Replies Flag this Response
  • Blaze;You do not have a clue...This is a ***l of a lot more than H. Pylori. This post of yours is of no help to this person.:rolleyes: You are acting like a troll imb. If this person is for real... your post could hurt this childs chances of getting the help she needs. tdwi:mad::mad:And The Beat Goes ON.....http://www.youtube.com/watch?v=RGc9comHypk *********************************Blaze wrote: Have they tested her for h-pylori? H-pylori has been linked to stomach ulcers. and....I would also look into Lyme and coinfections..... I have high titers of HHV6, parvo, EBV, and I test positive for Lyme and babesia. Even an ID doctor dismissed my symptoms due to the politics involved in diagnosing and treating Lyme, so find a Lyme Literate Medical Doctor on Lymenet. YEAH RIGHT....
    TaylorDeelwithit 382 Replies Flag this Response
  • Funny...a troll telling us we are trolls...http://www.youtube.com/watch?v=wvaCD2qExLY LOLOLOL Heres another one...http://www.youtube.com/watch?v=iSzFQzDUQ6E I assume that all of the posts I reply to are real, unless of course they were originally posted by trolls like you, Tootsie, Givenup, and a few others. Let me remind you that you are not a doctor either, and that posters generally realize that the suggestions they are given on a forum like this are just that - suggestions to take to their doctors - not medical orders.
    TaylorDeelwithit 382 Replies Flag this Response
  • oh your poor daughter.. your post has me almost in tears. Please stick up for her, she needs you to as obviously the doctors are not listening to just how bad she is feeling etc. Dont let her be, little more than just a guinea pig to them, why they dont have a clue what even to look for! and have no idea what is going on and DONT EVEN CARE ABOUT HER.. take her elsewhere!! I want to know more about her illness.. I assume she suffers from lack of energy with it too? Was she also lacking energy at the start of it, when she was getting the headaches before she became real sick? Also was there anything which could of triggered off the illness.. a very stressful incident just before she started getting the headaches, vaccination, the flu?? etc It's just that if she was very fatigued too.. that all could be chronic fatigue syndrome!! She has all the top symptoms of it. (please check out the CANADIAN CFS criteria ...(which is stricter than some other parts of the world where ones who dont have CFS sometimes get diagnosed with it)... and see if your daughter fits it.. and if so, you NEED to find a CFS specialist! (one who's experienced with severe CFS patients). CFS can come on slowly and progressively.. or it can come on very very fast, even overnight. There are CFS patients who have actually died from it, due to doctors not believing just how sick they are, (so if the doctors dont want to help her, you NEED to keep hunting till you find one who is taking her condition seriously!. CFS can make one terribly ill http://wwcoco.com/cfids/bernesx.html . (The above link contains the symptoms and the frequency they occur in CFS.. based on actual CFS studies.. 50-90% of CFS patients get irritable bowel syndrome..which includes diarhearrh, 60-90% get nausea ... 20% have vomiting with it (and those who get the vomiting.. Ive found often have it extreme), joint or muscle pain happens in 65-95% of CFS people, chronic sore throat 50-90%. They dont really know what causes CFS but it has often been linked to some kind of unknown viral infection etc and often symptoms can be very viral like. Symptoms1. diarriha2. nausea3. acheing all over4. joint pain5. stomach pain6. abdominal pain7. dizziness8. headaches9. vomitting Due to those symptoms.. I'll post the following just in case, as this is something doctors usually miss, until someone has a life threatening eposide, (and even then diagnoses is often missed!!). Headaches and getting often sick..can feature in this illness before one ends up starting to get addison's crises. With her symptoms and how severe they are... make sure the following illness is ruled out by a specialist who is familiar with it. from http://en.wikipedia.org/wiki/Addison%27s_Disease "SymptomsThe symptoms of Addison's disease develop insidiously, and it may take some time to be recognized. The most common symptoms are fatigue, muscle weakness, weight loss, vomiting, diarrhea, headache, sweating, changes in mood and personality, shortness of breath when standing and joint and muscle pains. Untreated, an Addisonian crisis can be fatal. It is a medical emergency, usually requiring hospitalization. Characteristic symptoms are:Sudden penetrating pain in the legs, lower back or abdomenSevere vomiting and diarrhea, resulting in dehydrationLow blood pressureLoss of consciousness/SyncopeHypoglycemiaConfusion, psychosisSevere lethargyConvulsions "
    taniaaust1 2267 Replies Flag this Response
  • and i'd also like to say that i wouldnt be surprised if at least one of those meds was causing some kind of reaction and making her condition worst. That is a heck of a med interaction going on with all those. (dont allow any doctor to fob you off with a CFS diagnoses either!! (Im not sure if your daughter does have that). Im warning you about that as many bad doctors will do that and give that diagnoses to anyone they cant work out what is wrong.. it's important to be PROPERLY diagnosed if that is/was the case!.. there are certain things/tests, things which may be found, which do help to point to a CFS diagnoses eg low BP, postive rombergs test, low cortisol etc etc etc). An offical CFS diagnoses cant be given either unless someone fits the diagnostic criteria for 6 mths.. thou diagnoses is often offically given in less time in children).
    taniaaust1 2267 Replies Flag this Response
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