Please help...my daughter is ill
WhatswrongAsh02-08-2005, 12:26 PMHelp!! :confused: My daughter is 16 years old. She is very ill only I can't get a single doc to tell me what is really wrong with her. I have had her to SO many specialists...each diagnoses her with something related to their field but they never put the "big picure" together.
Here are her symptoms:
Chronic Fatigue & Chronically feeling "bad" - flu-like symptoms
Mouth Ulcers
Joint Pain
Muscle Aches
Mystery rashes
Urinary frequency & urgency w/o infection
Low white count
Low monocytes
Low palelet count
Migraines
Bowel problems
Sudden onset of low grade fevers & chills...short lived.
Now she has begun to not have her periods
She has been diagnosed with: Fybromyalgia...Irritable Bowel Syndrome, Angioedema. No one can tie it all together but I KNOW something bigger is wrong. Every test for an auto-immune problem (Lupus) is negative.
Does anyone have any ideas about what tests I should ask for next? I think that only me being a tenacious, strong advocate for her is going to yield any answers.hillaryb02-08-2005, 06:54 PMCant help you too much, but I do hope they tested for mono. I is a very long-term illness (usually lasts months) and causes many of those symptoms. If she hasnt been tested for that, I would insist she be tested. Ive had mono. I had cancer too (tumor-not leukemia) and the mono was probably worse! :rolleyes:speedy8802-08-2005, 07:23 PMHelp!! :confused: My daughter is 16 years old. She is very ill only I can't get a single doc to tell me what is really wrong with her. I have had her to SO many specialists...each diagnoses her with something related to their field but they never put the "big picure" together.
Here are her symptoms:
Chronic Fatigue & Chronically feeling "bad" - flu-like symptoms
Mouth Ulcers
Joint Pain
Muscle Aches
Mystery rashes
Urinary frequency & urgency w/o infection
Low white count
Low monocytes
Low palelet count
Migraines
Bowel problems
Sudden onset of low grade fevers & chills...short lived.
Now she has begun to not have her periods
She has been diagnosed with: Fybromyalgia...Irritable Bowel Syndrome, Angioedema. No one can tie it all together but I KNOW something bigger is wrong. Every test for an auto-immune problem (Lupus) is negative.
Does anyone have any ideas about what tests I should ask for next? I think that only me being a tenacious, strong advocate for her is going to yield any answers.
hi i'm a 16 year old male i live in indianaplois indiana there is a hospital here that can diagnsose you daughters illness the hospital here is called RILEY CHILDERN'S HOSPITAL i know of this hospital personly because i have been there when i was a baby i spent 69 days there when i was a baby. the best suggestion i can give is to get your daughter to this hospital and they will work as hard as they can to get your daughter to a healthy recoveryWhatswrongAsh02-09-2005, 11:10 AMThanks for the replies....
Hilllaryb - Yes, she has been tested for Mono - it was negative. These symptoms have been going on in some way, shape or form for a VERY long time, just not to this degree. I am talking about years...
Speedy - Thanks for the info. on the hospital. We live in Texas though so I am going to try and see if I can get her taken care of locally. If not, trust me, I am not beyond taking her to Indiana!brookiebear2103-01-2005, 07:32 AMHello,
I have been going through something similar with my son, he is only 2-1/2 but he has been on/off sick since he was born. He has fevers that come and go, sometimes they stay low grade, he gets pains and aches in his muscles (he complains about them), and rashes. He has had mainly facial rashes, but also what they called 'target lesions'. His spleen has been enlarged, lived enlarged, he has had hardening of the spleen, blood in his urine at times, he is anemic, with a normal WBC count and yet nobody can tell me why. Actually I have had many theories thrown at me, many diagnosis, and yet none of them ever stick because they aren't right. When my son is having a 'good period', he is happy and seems completely fine. These are the times that I convince myself he is over whatever was wrong with him, he is fine and I am just overeacting, but he always has relapses, the rashes reappear and so does his fever. I think this is similar to you. All I can tell you is I completely understand how difficult this all is, the endless doc's appt's, the endless diagnosis, and you never really get anywhere. However, recently I have been referred to a rhematologist. I am told that Lupus is a very high possibility of what he has. Problem is that it is very rare in kids and very rare with boys, so the diagnosis has always been overlooked. This may be what is going on with your daughter. The aches, pains, fever, rashes all fit with what my son has. It may be something you want to discuss with your doc.
Good luck and please let me know how you make outfrogy03-01-2005, 01:13 PMHas your son been tested for Juvenile Dermatomyositis? It sure sounds like he has the symptoms. The rheumatologist or a dermatologist would the person to test for this.
I really hope you find the answers for your son.dwp51203-12-2005, 11:00 PMHi...with the pancytopenias, have they done a bone marrow biospy? Rule out some primary hematopoietic dyscratia? Not pleasnt but will rull out many diseases of the bone marrow (leukemia, MDS)oeee05-22-2005, 03:52 AMit sounds like your daughter has lupus...the tests may be negative or borderline...but i have lupus...and i too was diagnosed with ibs, fibromyalgia and a myriad of other things...have her thyroid tested..see if she is making antibodies against her own thyroid....if she is, you know that autoimmune problems are at the root of your daughter's symptoms....you need to take her to a pediatric rheumatologist. visit the site www.goldscout.com.....i think this site will be very helpful to you. Hope your daughter feels better soon!!gmpcmiller07-08-2005, 11:15 AMHas she been tested for Lyme disease?roswell5207-11-2005, 09:41 AMWish your daughter the best. It is always so hard to see your children suffer and not be able to make them better.
I am no DR., but I too was having many of the same symptoms, especialy the low blood counts, joint pain, low grade temps, rashes, anemia, etc. I was tested for everything under the Sun, including Lyme and Lupus, with no luck. Finally got an accurate diagnosis from a "Bone Marrow Biopsy". Procedure is only a few minutes long and is only mildly uncomfortable.
In my case, the bone marrow biopsy showed that I had chronic Leukemia (HCL), which is very treatable.
Best of luck. Hope you find your way to a physician who gets it right soon.....
Roswell52megsmom07-13-2005, 06:02 PMWe live in indiana also and your daughter has very simular symptoms to our daughters although not exact. (our daughter is 13) Riley is where we have spent the last one and one-half years trying to get answers and we are going elsewhere. Don't waste your time coming all this way for this. I'm sure you can get help at any major medical facility. Look for a teaching hospital. Good luck! :angel:teachergirl6407-25-2005, 09:58 AMHas she been checked for lyme disease or seen a gastro doc to check for some sort of inflammatory bowel disease? I know the IBD will cause many of her symptoms. It really does sound like something autoimmune is going on. If they are doing bloodwork again, ask for a hs-CRP and a sed rate. Both measure inflammation in the body. I had a similar experience when I was about 17. The family doctor thought it was mono but it wasn't. My symptoms came and went for several years and I was finally diagnosed with a couple of autoimmune diseases this past year. I'm sure they have been brewing since I was a teenager. It's important to find a doctor that will treat the person, not a lab report.NatashaW08-25-2005, 05:55 PMI have had most of the symptoms your daughter has...I was finally diagnosed with Mono/Epstein-Barr Virus. I imagine I had it for along time before someone finally got around to testing me. I have been "diagnosed" as having mono for over a year now, and I still have many of the syptoms. I have CFS (chronic Fatigue Syndrome) now. Have you had your daughter tested for epstein barr, which causes mono?? A lot of people with CFS have the epstein barr virus although some do not.
**Ooopppsss.... I just read that you said she was negative for mono. She could still possibly have CFS, though. Have you seen an immunologist?? I hope you find a doctor that can help your daughter. I know how frustrating it is to be sick or have a sick child and not have anyone able to pinpoint the problem.
Here are her symptoms:
Chronic Fatigue & Chronically feeling "bad" - flu-like symptoms
Mouth Ulcers
Joint Pain
Muscle Aches
Mystery rashes
Urinary frequency & urgency w/o infection
Low white count
Low monocytes
Low palelet count
Migraines
Bowel problems
Sudden onset of low grade fevers & chills...short lived.
Now she has begun to not have her periods
She has been diagnosed with: Fybromyalgia...Irritable Bowel Syndrome, Angioedema. No one can tie it all together but I KNOW something bigger is wrong. Every test for an auto-immune problem (Lupus) is negative.
Does anyone have any ideas about what tests I should ask for next? I think that only me being a tenacious, strong advocate for her is going to yield any answers.hillaryb02-08-2005, 06:54 PMCant help you too much, but I do hope they tested for mono. I is a very long-term illness (usually lasts months) and causes many of those symptoms. If she hasnt been tested for that, I would insist she be tested. Ive had mono. I had cancer too (tumor-not leukemia) and the mono was probably worse! :rolleyes:speedy8802-08-2005, 07:23 PMHelp!! :confused: My daughter is 16 years old. She is very ill only I can't get a single doc to tell me what is really wrong with her. I have had her to SO many specialists...each diagnoses her with something related to their field but they never put the "big picure" together.
Here are her symptoms:
Chronic Fatigue & Chronically feeling "bad" - flu-like symptoms
Mouth Ulcers
Joint Pain
Muscle Aches
Mystery rashes
Urinary frequency & urgency w/o infection
Low white count
Low monocytes
Low palelet count
Migraines
Bowel problems
Sudden onset of low grade fevers & chills...short lived.
Now she has begun to not have her periods
She has been diagnosed with: Fybromyalgia...Irritable Bowel Syndrome, Angioedema. No one can tie it all together but I KNOW something bigger is wrong. Every test for an auto-immune problem (Lupus) is negative.
Does anyone have any ideas about what tests I should ask for next? I think that only me being a tenacious, strong advocate for her is going to yield any answers.
hi i'm a 16 year old male i live in indianaplois indiana there is a hospital here that can diagnsose you daughters illness the hospital here is called RILEY CHILDERN'S HOSPITAL i know of this hospital personly because i have been there when i was a baby i spent 69 days there when i was a baby. the best suggestion i can give is to get your daughter to this hospital and they will work as hard as they can to get your daughter to a healthy recoveryWhatswrongAsh02-09-2005, 11:10 AMThanks for the replies....
Hilllaryb - Yes, she has been tested for Mono - it was negative. These symptoms have been going on in some way, shape or form for a VERY long time, just not to this degree. I am talking about years...
Speedy - Thanks for the info. on the hospital. We live in Texas though so I am going to try and see if I can get her taken care of locally. If not, trust me, I am not beyond taking her to Indiana!brookiebear2103-01-2005, 07:32 AMHello,
I have been going through something similar with my son, he is only 2-1/2 but he has been on/off sick since he was born. He has fevers that come and go, sometimes they stay low grade, he gets pains and aches in his muscles (he complains about them), and rashes. He has had mainly facial rashes, but also what they called 'target lesions'. His spleen has been enlarged, lived enlarged, he has had hardening of the spleen, blood in his urine at times, he is anemic, with a normal WBC count and yet nobody can tell me why. Actually I have had many theories thrown at me, many diagnosis, and yet none of them ever stick because they aren't right. When my son is having a 'good period', he is happy and seems completely fine. These are the times that I convince myself he is over whatever was wrong with him, he is fine and I am just overeacting, but he always has relapses, the rashes reappear and so does his fever. I think this is similar to you. All I can tell you is I completely understand how difficult this all is, the endless doc's appt's, the endless diagnosis, and you never really get anywhere. However, recently I have been referred to a rhematologist. I am told that Lupus is a very high possibility of what he has. Problem is that it is very rare in kids and very rare with boys, so the diagnosis has always been overlooked. This may be what is going on with your daughter. The aches, pains, fever, rashes all fit with what my son has. It may be something you want to discuss with your doc.
Good luck and please let me know how you make outfrogy03-01-2005, 01:13 PMHas your son been tested for Juvenile Dermatomyositis? It sure sounds like he has the symptoms. The rheumatologist or a dermatologist would the person to test for this.
I really hope you find the answers for your son.dwp51203-12-2005, 11:00 PMHi...with the pancytopenias, have they done a bone marrow biospy? Rule out some primary hematopoietic dyscratia? Not pleasnt but will rull out many diseases of the bone marrow (leukemia, MDS)oeee05-22-2005, 03:52 AMit sounds like your daughter has lupus...the tests may be negative or borderline...but i have lupus...and i too was diagnosed with ibs, fibromyalgia and a myriad of other things...have her thyroid tested..see if she is making antibodies against her own thyroid....if she is, you know that autoimmune problems are at the root of your daughter's symptoms....you need to take her to a pediatric rheumatologist. visit the site www.goldscout.com.....i think this site will be very helpful to you. Hope your daughter feels better soon!!gmpcmiller07-08-2005, 11:15 AMHas she been tested for Lyme disease?roswell5207-11-2005, 09:41 AMWish your daughter the best. It is always so hard to see your children suffer and not be able to make them better.
I am no DR., but I too was having many of the same symptoms, especialy the low blood counts, joint pain, low grade temps, rashes, anemia, etc. I was tested for everything under the Sun, including Lyme and Lupus, with no luck. Finally got an accurate diagnosis from a "Bone Marrow Biopsy". Procedure is only a few minutes long and is only mildly uncomfortable.
In my case, the bone marrow biopsy showed that I had chronic Leukemia (HCL), which is very treatable.
Best of luck. Hope you find your way to a physician who gets it right soon.....
Roswell52megsmom07-13-2005, 06:02 PMWe live in indiana also and your daughter has very simular symptoms to our daughters although not exact. (our daughter is 13) Riley is where we have spent the last one and one-half years trying to get answers and we are going elsewhere. Don't waste your time coming all this way for this. I'm sure you can get help at any major medical facility. Look for a teaching hospital. Good luck! :angel:teachergirl6407-25-2005, 09:58 AMHas she been checked for lyme disease or seen a gastro doc to check for some sort of inflammatory bowel disease? I know the IBD will cause many of her symptoms. It really does sound like something autoimmune is going on. If they are doing bloodwork again, ask for a hs-CRP and a sed rate. Both measure inflammation in the body. I had a similar experience when I was about 17. The family doctor thought it was mono but it wasn't. My symptoms came and went for several years and I was finally diagnosed with a couple of autoimmune diseases this past year. I'm sure they have been brewing since I was a teenager. It's important to find a doctor that will treat the person, not a lab report.NatashaW08-25-2005, 05:55 PMI have had most of the symptoms your daughter has...I was finally diagnosed with Mono/Epstein-Barr Virus. I imagine I had it for along time before someone finally got around to testing me. I have been "diagnosed" as having mono for over a year now, and I still have many of the syptoms. I have CFS (chronic Fatigue Syndrome) now. Have you had your daughter tested for epstein barr, which causes mono?? A lot of people with CFS have the epstein barr virus although some do not.
**Ooopppsss.... I just read that you said she was negative for mono. She could still possibly have CFS, though. Have you seen an immunologist?? I hope you find a doctor that can help your daughter. I know how frustrating it is to be sick or have a sick child and not have anyone able to pinpoint the problem.