Discussions By Condition: I cannot get a diagnosis.

I need help for my son! Endless Dr visits no answers!

Posted In: I cannot get a diagnosis. 12 Replies
  • Posted By: Anonymous
  • August 14, 2007
  • 01:28 AM

I am SOO frustrated with drs. No one seems to have answers for my TJ. (Or for me for that matter) I just keep getting the Dr runaround.. being sent from dr to dr with no one having real answers. Maybe someone here has better answers than his dumb Drs. Here is a list of my many concerns:

Low Immune system...Working with an immunologest. He gets sick very frequently, had to pull him out of school year before last as he gets every little thing that goes around. if he goes to school for a week, then he out the next week sick, all year. A minor cold he catches worse than my other kids, as well as he catches major illnesses easily. Mostly Viral. a list of some major illnesses in the last 4 years: Viral Menengitis X2, another entroviral drs say was same "family" as viral menengitis, Full on Mono with enlarged spleen and liver(hepatitis) RSV at least once a year, strep 2-3 times a year... Anyway, the immunologest found an abnormality in his T-cell antigen specific test. He sent it to a 2nd lab and same results. It is something the Dr has never seen before, and never found studies about. The dr did the "same test" and applied the antigens to Tjs arm, one of the 3 did have a reaction so the dr dropped it, and assumes his body is responding properly. I know its not! 7 colds a year are average for children.. Tj has that within the first 3 months! (so far this year he has had 10) Colds are also a trigger for his asthma, so that makes his colds so much worse. Not to mention his other severe illnesses.

Sore neck with swollen lymph glands... He has had this for over a year and half..(not counting the 6 months or so that drs say glands can be swollen from Mono) MRI and CT show swollen lymph nodes, however none over 1cm which is the biopsy point. seen PT, Rhumotology, ENT, and pedi-Orthopedic. Most of them feel the neck pain is from the glands, no one knows why glands stay swollen, but get worse when he getting sick. Next step may be biopsy, which we have been putting off due to 2 bad reactions to anesthesia. We are going back to the ENT dr to decide what to do. Our concern is Lymphoma.

Mystery low grade fever... many times a week, not major hinderence, but still want to note it. Fever ranges from 99.5 to 101. Will even have it for couple hours, then it goes away and comes back few hours later, I do not give him meds for it, I only give ibuprofen or tylenol if he gets a fever over 102.

Bad reactions to Anesthesia: The first time was when he got his tonsiles and adnoids removed. He had apnea and snoring. The reaction was that his lungs filled with fluid, and started collapsing, Hi fever. The second time they did a milder one as it was only for his MRI so different anesthesia was used. This time he ran high fever, vomiting, and severe headache. and his normal rash showed up. This is why we have put off the biopsy of his lymph glands.

Mystery rash: He gets flush redish pink spots on him for no apperent reason. It is a concern as it comes and goes all the time. When I see the spots it looks the same as when he has viral menengitis or strep(his strep is BAD he gets as sick and similar symptoms as to when viral menengitis is coming on..sudden hi fever 104+, rash, vomiting, lethargy, stiff neck and severe headache. only way to tell the difference is that his throat shows up sore) These spots blanch, but with the viral menegitis, they usually dont, and they turn worse. That is one way to tell them apart, but when he gets the rash, I watch him close for other signs of illness. This rash is more and more frequent.

Bad headaches: Usually he gets these with illnesses, but more and more he gets them without being sick. Because he is sick SO much, Drs have a hard time trying to figure out if its illness related or not. (he will have had an illness within a week of the headache etc.)

Fatigue: He sometimes gets VERY fatigued after a busy day. One very active day can leave him whiped for several days. Other times he is just fine with active days. He also has days of general malise. nothing pinpoint besides the sore neck, but just not feeling good in general.

Just this past few months a few more things have cropped up:

Heat Intollerence: even when its not that warm out say 75 degrees, he cant be out very long His cheeks turn beet red and bumpy, turns white around the lips, gets sick feeling to his tummy, dizzy etc. All this in 15-20 min of playing outside. Its faster and worse the warmer it is outside.

Occasional bad bruising: He is a typical boy, with bruises on shins etc, but he sometimes gets bruises all over his legs and arms, on the calf or back of thigh, or arms with no apperent reason. These are large bruises, and he will sometimes wake up with them on him when they wernt there when he went to bed, He has no idea of bumping them, like his "normal" boy bruises. Also sometimes when he DOES bump himself, it will be a huge bruise, larger than it shoulda been for the minor bump.

My son also has asthma, since he was 7 months old and had RSV. He was born 9 weeks preemie. His asthma used to only trigger with colds, but now is changing and he has more and more problems even when he isnt sick. He also has numerous food allergies, and is gettinging more and more of them the older he gets. He also has dyslexia. Jeez did I leave anything out?? Probably the poor kid has quite a history. Anyway ss for such a long post, but I am extremely frustrated after yet another fruitless Dr visit. Laying it all out together makes me feel better, and maybe someone out there has a suggestion that we havent tried yet. Thanks for listening it makes me feel better!

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12 Replies:

  • Does anyone else in your family have any similar problems? I would see a geneticist about the abnormal tests.
    aquila 1263 Replies
    • August 15, 2007
    • 05:41 PM
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  • Fatigue: He sometimes gets VERY fatigued after a busy day. One very active day can leave him whiped for several days. Other times he is just fine with active days. He also has days of general malise. nothing pinpoint besides the sore neck, but just not feeling good in general. possibly childhood chronic fatigue syndrome (CFS) Chronic fatigue syndrome is a complex illness which causes immune abnormalities and dysfunctions. I know T cell abnormalities can be involved but dont know about the type you mentioned is or not. CFSers can tend to catch everything under the sun due to reactiving viruses in our bodies or due to our immune system problems. Full on Mono with enlarged spleen and liver(hepatitis) Mono has a connection to CFS, in fact 10% of ones who get full on mono, do end up with CFS, according to studies. My own estimate would be that 50-75% of ones with CFS have a past of full on mono. Sore neck with swollen lymph glands... He has had this for over a year and half.( 50-80% of CFSers get sore neck and swollen glands Mystery low grade fever... many times a week, not major hinderence, but still want to note it 60-95% of CFSers get fevers, usually low grade ones Bad reactions to Anesthesia 25-65% of ones with CFS get bad reactions to medicines and foods all of those things are normal CFS things. I have CFS and go a bad reaction just from the local anesthesia at dentist!. (People with CFS should avoid certain anethestics). Ones with CFS often bruise easily (25% of us with CFS have that problem) and the headaches (75-95%) and heat intollerance (75%-80%), Recurrent illness and infections: (70-85%) are normal for ones with CFS. To see the statistics on what is normal in CFS, check out http://wwcoco.com/cfids/bernesx.html Your sons symptom complex is quite classical to CFS and in children the symptoms tend to chop and change about more. . He also has numerous food allergies, and is getting more and more of them the older he gets. Developing food allergies and more and more of them, is quite normal in CFS. You may find that he goes and develops IBS (irritable bowel syndrome) next (if he isnt already starting to have issues with that). Hence due to all the above.. (too much stuff which points to that he may have CFS). I strongly suggest for you to find a doctor or specialist who specialises in CFS as most doctors dont know hardly anything about this illness. The average length of time from symptoms to proper diagnosis for CFS has been found to be 7 years! So hence why Im saying to seek out a CFS specialist to check your son out. CFS occurs 3 times more commonly in females than males, but in children, its occurance in the both genders are equal. Even young children can get CFS (I know of a few with it who had it at 7 or 8 yrs, the youngest Ive heard of was only 4). If it is in fact CFS ....the good news then will be that many children do end up recovering from this (where as in adults, recovery isnt as likely) A great CFS site (which also has a support forum) http://www.immunesupport.com/chronic-fatigue-syndrome-understanding.htm
    taniaaust1 2267 Replies
    • August 15, 2007
    • 10:36 PM
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  • I agree!! I have CFS and your son has ALL of my symptoms. The only thing that will help that I have found effective is NAET or Bioset therapy It is a form of accupressure...non-invasive and it works!! I am a nurse who was sick for years...docs gave me a script for 2 pills and a diagnosis written on a sheet of paper. Needless to say, none of it helped.My Bioset doc gave me back my life...there are others in this forum who agree on this topic... Google Bioset or www.naet.com to find a practicioner near you. Help your son get his life back. I am heaed back to work for the first time in over a year thanks to Bioset...no kidding. Hope this helps!!...mommy cat
    mommy cat 1654 Replies
    • August 16, 2007
    • 00:41 AM
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  • I agree....with both taniaust and Mommy Cat.I have CFS....some of my underlying infections are EBV and mycoplasma pneumoniae. I also have natural killer cell dysfunction and yeast in my blood. I am editing this disease greatly, but this can lead to hormone dysfunctoin. Bruising...a sign of impaired thyroid. Let me guess....his tongue gets swollen, too? If he sticks out his tongue and you see the impression of his teeth on the side of his tongue....that is abnormal and means a swollen tongue. I found a Dr. through immunesupport.com., but...can no longer be treated until my pregnancy is to term (another story). I had over 20 vials of blood drawn to test me for bacteria, viruses, funguses, hormones and etc.I have an appointment for muscle-testing, soon. It is like kineseology. NAET and Bio-SET are basically upgraded and more modern forms of this. Many, many chiropractors do this.What do you have to lose by trying the NAET/BIO SET/Kinesiology/muscle-testing when you have gone through every medical avenue possible? Go for one visit. If you don't like it....you can try another avenue. This is how I convinced myself to try it and for my unborn baby.I know what it is like to be a scared Mom. My 5-year-old daughter has some of the CFS symptoms, too. I do not think I will put her through the paiin of having to have so much blood drawn. I wish you and your dear son all the best! Please let us know what happens via this thread in updates. We are concerned for you!Val 52
    Anonymous 42789 Replies
    • August 16, 2007
    • 06:20 AM
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  • ILow Immune system...Working with an immunologest. He gets sick very frequently!Another name frequently used by Dr.'s is Chronic Fatigue IMMUNE DEFICIENCY syndrome, FYI....please google CFS, CFIDS, ME.
    Anonymous 42789 Replies
    • August 16, 2007
    • 06:24 AM
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  • Scarlet Fever?Early symptoms indicating the onset of scarlet fever can include: Fever of 38 to 40 degrees C.(101-104 degrees F.)FatigueSore throatHeadacheNausea or VomitingAbdominal painFlushed face with perioral pallor (circumoral pallor)Tachycardia (rapid pulse)Lymphadenopathy (enlarged lymph nodes)Punctate red macules on the hard and soft palate and uvula (ie, Forchheimer spots).Scarlet fever also produces a bright red tongue with a "strawberry" appearance.There is a characteristic rash which:is fine, red, and rough-textured; it blanches upon pressureappears 12–48 hours after the fevergenerally starts on the chest, axilla (armpits), and behind the earsis worse in the skin foldsPastia lines (where the rash becomes confluent in the arm pits and groins) appear and persist after the rash is goneThe rash begins to fade three to four days after onset and desquamation (peeling) begins. "This phase begins with flakes peeling from the face. Peeling from the palms and around the fingers occurs about a week later and can last up to a month." Peeling also occurs in axilla, groin, and tips of the fingers and toes.Diagnosis of scarlet fever is clinical. The blood tests shows marked leukocytosis with neutrophilia and conservated or increased eosinophils, high ESR and CRP , and elevation of antistreptolysin O titer. Blood culture is rarely positive, but the streptococci can usually be demonstrated in throat culture. The complications of scarlet fever include septic complications due to spread of streptococcus in blood and immune mediated complications due to an aberrant immune response. Septic complications, today rare, include otitis, sinusitis, streptococcal pneumonia, empyema thoracis, meningitis and full blown septicaemia ( malignant scarlet fever) Immune complications include acute glomerulonephritis, rheumatic fever and erythema nodosum. The secondary scarlatinous disease ( or secondary malignant syndrome of scarlet fever) included renewed fever, renewed angina, septic ORL complications and nephritis or rheumatic fever and is seen around the 18 th day of untreated scarlet fever. Your little guy seems to have a lot of symptoms of scarlet fever, especially the whiteness around the mouth and the red cheeks.
    rad-skw 1605 Replies
    • August 16, 2007
    • 09:35 AM
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  • Thank you for all your replys! Rad: No I dont think its scarlet fever. These symptoms have been ongoing for years, the heat intollerence(the red cheeks, white around the mouth, sick dizzy etc.) is only when he gets too hot. ty though!Aquilla: Yes to some extent. I have joint pain, fatigue, mylar rash, complicated migraines(that leave me one side paralisis) Arm and leg tingling, Raynauds, Dry eyes and mouth etc. They have suggested Lupus or Sjorgens for me, but my ANA's have been normal. Docs still dont know what I have either. I have good days and bad days. will be fine for several months, then down for several weeks to months. Genetics testing may be an Idea to look into, as the anesthesiologest suggests his issues with anesthesia may be a genetic disease. It may give answers to his abnormal t-cell testing too.Mommycat and others: I had read your postings the day I posted this. I went to the website and found a naturopath physician here local. I called and set up a consult with her. She feels TJ has an ongoing viral infection from either the mono or the menengitis. She says we need to get his immune system under control first, and detox him before going on to the naet treatments! She also feels she can help with his dyslexia too!The family friend Chiro we go to is a reflexologest. We are familiar with that! He has given our son treatment in the past for his liver and kidneys as they are stressed from various meds and illnesses. This new dr is going to be wonderful for our son, now we just have to figure out how to come up with the $$ for the treatments. This dr takes what our chiro does to a whole new level, and deals with much more than our chiro can.Tania: I will check into that. He was having horrible time with tummy pain, but his wasnt IBS. Turns out he was lactose intollerent. We took him off all dairy products(except hard cheeses he seems ok with that) and put him on either soy milk or lactose free milk and his tummy pain and cramps went away. by trial and error we have found that milk, icecream, yoghert, and sour cream was his biggest NO NO's. Along with his numerous other food allergies, theres not much the poor kid can eat! Hopefully NAET treatments can help with that when we get him to that point. Thank you for the website links!
    Anonymous 42789 Replies
    • August 17, 2007
    • 04:07 PM
    • 0
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  • I agree....with both taniaust and Mommy Cat. I have CFS....some of my underlying infections are EBV and mycoplasma pneumoniae. I also have natural killer cell dysfunction and yeast in my blood. I am editing this disease greatly, but this can lead to hormone dysfunctoin. Bruising...a sign of impaired thyroid. Let me guess....his tongue gets swollen, too? If he sticks out his tongue and you see the impression of his teeth on the side of his tongue....that is abnormal and means a swollen tongue. I found a Dr. through immunesupport.com., but...can no longer be treated until my pregnancy is to term (another story). I had over 20 vials of blood drawn to test me for bacteria, viruses, funguses, hormones and etc. I have an appointment for muscle-testing, soon. It is like kineseology. NAET and Bio-SET are basically upgraded and more modern forms of this. Many, many chiropractors do this. What do you have to lose by trying the NAET/BIO SET/Kinesiology/muscle-testing when you have gone through every medical avenue possible? Go for one visit. If you don't like it....you can try another avenue. This is how I convinced myself to try it and for my unborn baby. I know what it is like to be a scared Mom. My 5-year-old daughter has some of the CFS symptoms, too. I do not think I will put her through the paiin of having to have so much blood drawn. I wish you and your dear son all the best! Please let us know what happens via this thread in updates. We are concerned for you! Val 52 Val .. There are things one can try for CFS which can help which are fine (even good) while pregnant. I strongly suggest you try undenatured whey. This helps correct the gluthathoine deficiency which nearly all CFSers have, it also containes immunglobins etc, which help boost the immune system, so would be good for both you and the babe. I too worry about both my children.. they both have some CFS symptoms and also sleep more than most children, thou currently havent developed full blown CFS yet. btw.. i bruise easily (so much so i ended up having to have ultrasounds due to severe bruising not too long ago), but dont have swollen tongue at all.
    taniaaust1 2267 Replies
    • August 18, 2007
    • 03:09 AM
    • 0
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  • Tania: I will check into that. He was having horrible time with tummy pain, but his wasnt IBS. Turns out he was lactose intollerent. We took him off all dairy products(except hard cheeses he seems ok with that) and put him on either soy milk or lactose free milk and his tummy pain and cramps went away. by trial and error we have found that milk, icecream, yoghert, and sour cream was his biggest NO NO's. Along with his numerous other food allergies, theres not much the poor kid can eat! Hopefully NAET treatments can help with that when we get him to that point. Thank you for the website links! Most ones with CFS have problems with foods or develop them (due to leaky gut) so that would fit too. Ive become intollerant to most dairy products myself due to it. (20% of ones with CFS have trouble with dairy). Take care as you probably will find he develops more food intollerances or allergies. . I have joint pain, fatigue, mylar rash, complicated migraines(that leave me one side paralisis) Arm and leg tingling, Raynauds, Dry eyes and mouth etc. They have suggested Lupus or Sjorgens for me, but my ANA's have been normal. Docs still dont know what I have either. I have good days and bad days. will be fine for several months, then down for several weeks to months. Genetics testing may be an Idea to look into, I have good days and bad days. will be fine for several months, then down for several weeks to months. I was like that, fine for mths and then not then fine again etc, for quite a while before full blown CFIDS hit me. Are you worst after exertion?? or periods of stress or exertion??? A quarter of ones with CFS or CFIDS (chronic fatigue immunity dysfuction) themselves have a child with it too. There IS some kind of genetic susceptability to CFS. (In my own family my young cousin is on disability as I are, due to it and my nanna and uncle (also on disability) have related some problems too). My CFS specialist says that CFS is usually some kind of ongoing infection(s) usually viral going on in the body. I think your sons problem is bigger than just ongoing EBV (mono) and menengitis. The fact he's getting all these, shows there probably isnt something quite right with his whole system (immune dysfunction). I strongly suggest for you to seek out a CFS specialist for him and possibly for yourself too for another opinion. best luck to you both
    taniaaust1 2267 Replies
    • August 19, 2007
    • 00:14 AM
    • 0
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  • Lyme's is a great imitator, meaning that it can look like and appear to be many other things. I have been finding a good amount of those I test with Meridian Stress Assessment to have a positive signal that implies a good probability of Lyme. Have your natural doc test for Lyme using the Bowen Lab only. Traditional hospital tests are pretty useless for Lyme testing. With Lyme there can be many coexisting infections. The Lyme drags the body down and then the other bugs show up and reproduce. If you want to say which state you are in I may be able to hook you up with natural health pros in your area. Also if the natural doc you now have would let me contact them, I can give info and references. I have been a DC for almost 20 years and here in OH we are allowed to do many many things. Ralph
    Anonymous 42789 Replies
    • August 20, 2007
    • 01:22 AM
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  • I havn't read all the posts, but I am interested in the ones I did read. However, none of the posts I read involved proper nutrition. There are several things that you can do to boost the immune system, I believe the more natural the better. Proper nutrition would be one of the most influential things that you could do.(get rid of all the crap) The more healthy the lifestyle, the better the immune system gets. For instance, regular exercise, vitamin supplementation, healthy diet, and maybe even some natural herbs can help almost anyone boost the immune system. Did you know chiropractic can boost the immune system? I recommend NUCCA practicioners.(you can research that for yourself) However, I can tell you...since I started doing all these things, I can't even remember the last time I was sick from bacteria/virus/fungus...etc..., its been a long time. On the medical side of things, according to the New England Journal of Medicine...I believe Aug. 1991, getting colds/virus' etc... are directly related to the amount of stress you have. Stress equal low immune system. Try and get rid of it if he has any problems with it, but not medication...please.
    johnsemail1000 2 Replies
    • August 20, 2007
    • 05:09 AM
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  • I agree with Ralph regarding the Lyme. Also the CFS information!!Original poster...Congratulations on finding a practicioner. As for the $, it will come. After all, aren't our lives "priceless"?. I have many people who have "witnessed" my recovery since Bioset began just 6 treatments ago. May God Bless you and your family.Best Regards,mommy cat:)
    mommy cat 1654 Replies
    • August 20, 2007
    • 09:37 PM
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