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Old 03-03-2008, 01:37 PM   #1
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Multiple symptoms & getting worse. No diagnosis & getting desperate

My 13 year old daughter has some severe problems and I am really hoping someone can help to diagnose properly and guide us in the right direction. We don't know where to go from here and growing anxious as her symptoms continue to get worse.

Background

Rachel has always had problems with her sinuses, frequent sinus infections and environmental allergy symptoms since the age of 2 or 3. At around the age of 5 she began to get strep throat and had her tonsils and adenoids removed at age 8. She seemed to better but still gets periodic headaches at night, strep has returned on a regular basis a year after her T&A removal. Visits to her PCD result in an antibiotic and masal spray, if she misses a dose she gets a sinus infection.

Currently

She suffers from periodic numbness of her arms and legs (starts in her hands and feet), constant headaches, constant low grade fever, and severe joint pain. Below is a timeline of her symptoms;

12/1/07- She was taken to an immediate care center for a cold. She was diagnosed as having mild asthma and given a albuterol inhaler. She was prescribed a Z-Pac treatment.

12/8/07- Went to her Primary Care Doctor for a follow up. She was complaing of difficulty in breathing, her throat felt like it was closing, and she didn't feel good. The PCD examined her nose, throat and ears and was given a clean bill of health. We asked if he would suggest us taking her to ENT and Allergen, the Dr. said we could if we want but didn't see a need. Rachel used the inhaler which helped her lungs but didn't alleviate the sensation of her throat closing.

12/27/07- We take her to a EN&T specialist who examined her and determined her adenoids had grown back. He noted her asthma and several other problems with her sinuses. He orders a CT scan and a pulmonary function test as well allergy testing. He prescribes Advair, Zanac, Dexacort, Singulair and an antibiotic. Dr. schedules another appointment one month later, 1/24/08 for an allergy test. We explained the inhaler is used every few hours but provides no real relief, throat still feels like it's closing and headaches persist.

1/9/08- Rachel is taken to the Emergency room at 11PM. She is complaining of shortness of breath, after using her inhaler, as well numbness in her arms, legs and face. She has a low temp and feels very tired but scared to fall asleep. The ER doc runs an EKG, pulmonary testing, blood work and all seems fine with the tests. The ER doctor suggests we find a pediatric pulmonologist and prescribes Xanex to relax.

1/12/08- While sitting stationary Rachel experiences her arms and legs going numb, this happens on a regular basis for no apparent reason at any given time.

1/17/08- Rachel sees a black tunnel.

1/18/08- Take her for her routine eye exam, we mention the tunnel vision but the exam doesn't find any reason for it.

1/24/08- Allergy testing is conducted. She is highly allergic to most environmental factors which wasn't much of a surprise. They test some foods when it was learned she has frequent headaches. She is also severely allergic to; wheat, corn, yeast, milk, chicken, beef, pork, and other foods. The Dr examined her again and upped her dosage of Advair, more acid reflux med, and 500mg of Biaxin. We explained the numbness and fever she has a different times but these symptoms are not included in his dictation acording to the nurse. That evening Rachels faced swells, as well as her tongue and lips. She also felt her arms and legs go numb and took Benedryl to go to sleep. She was very scared.

1/29/08- We call the Allergen and speak with the nurse to explain the symptoms Rachel had later that night. She shedules another follow up with the Allergen on 1/30/08 and gets a prescription for Allegra.

1/30/08- We return for a follow up and the Dr wasn't sure why we returned. We explained the symptoms after the testing and the sensation of her throat closing. He prescribes Zyxal and Prevacid along with the other prescriptions, discontinues the Allegra.

2/7/08- We take her to the Pediatric Pulmonologist who gives Rachel an exam and discusses her history. She schedules a follow up one month later for testing of asthma, acid reflux, and in the meantime order blood work to test for autoimmune diseases.

2/26/08- Surgery for her adenoid removal.


Since her surgery Rachel has had a fever that runs from 100.5-100.9, up from the 99.5 to 99.9 that she was running. Her joint pain is worse, and she feels very sick or "not right" and on a 1-10 scale she has gone from a 4 to a 2. The numbness in her arms and legs comes more frequently and lasts much longer then it has in the past.

Her blood tests all came back negative; ANA, RA Test, Sed Rate, TSH, and CRP.

If anyone can help please please chime in. I don't know what more to do for her, she has been poked and prodded and no one has yet come up with an diagnosis of her problems and she continues to get worse.

Thanks for reading all of this.

 
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Old 03-03-2008, 02:26 PM   #2
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Re: Multiple symptoms & getting worse. No diagnosis & getting desperate

LBo,
It's obvious your daughter has a terrible immune system given the reaccuring infections she has suffered. But that you already know.
Reguarding her numbness, tingling, headaches, joint pain, has she had her B12 level messured? It's a simple blood test and an easy fix , and seems MANY doctors dont ever think about it. Read up on low B12 symptoms, several of her symptoms seem to fit. Just a thought?
I really feel for her, as she is too young to be dealing with so much.

Will say a prayer you find the answers soon.
Take care and GOd bless,
Annette

 
Old 03-03-2008, 02:59 PM   #3
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Re: Multiple symptoms & getting worse. No diagnosis & getting desperate

Annette thanks so much for the words of encouragement, no she hasn't had that tested and that sounds encouraging............and I appreciate the prayers as they are very much welcomed. With her newly discovered allergies she hasn't been able to eat Chicken, beef, pork, fish. In fact her diet is pretty restrictive as her allergies to corn, soy, milk, wheat (in addition to the protiens) really limit foods that she can have. Maybe this could explain her symptoms getting worse.

We meet with her pediatric pulmonologist Thursday, I will ask her about that. In addition I wanted to get her D-Metabolites tested, I have read a lot about L-Formed or CWD bacteria (cell wall deficient bacteria) and the Marshall Protocol thinking that too could be a cause of her woes. The anti-biotics haven't helped her, even with increased dosage and strength.

Thanks again, definately something worth asking about.

Last edited by LBo; 03-03-2008 at 03:06 PM.

 
Old 03-04-2008, 06:30 AM   #4
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Re: Multiple symptoms & getting worse. No diagnosis & getting desperate

Hi, your daughter sounds very allergic. My daughter and I were also and we were lucky enough to come across an excellent alternative doc who cured my daughter and now he is working on me. I have access to a list of docs who practice like our doc and the one closest to you is Dr. Richard Layton in Towson, MD. What the problem was with us is that our normal flora in our gut was all messed up. This is where your immune system is and if the gut isn't healthy then your immune system isn't either. Our doc used chinese herbs and other alternative therapies to turn our health around. I also had trouble with my throat feeling restricted. My food allergies caused this plus just regular inflammation and swelling from my normal flora in my GI tract being out of whack. I had a bacteria in my GI tract which isn't supposed to be there and my doc said that I basically have had this low-level infection that I have been fighting for who knows how long. It was able to get in there because for whatever reason I do not have enough beneficial normal flora in my gut. I take probiotics everyday to help increase the beneficial normal flora in my gut. You might want to go get your daughter some ASAP at any health food store. I use one with a mixture of acidophilus and bifido bacteria. Since my doc has treated my gut flora I no longer have that sensation in my throat. I also had slight asthma with my allergies. I have been pretty good with that lately too. Oh and reflux! OMG, I had so much of it my doc said that I had esophagitis. That is all gone too. It was the gut inflammation again. The bacteria that was in my gut was Klebsiella pneumonia. The first thing that my doc said to me was this can cause joint problems. I have had knee problems my whole life. This is gone now too.

 
Old 03-04-2008, 08:37 AM   #5
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Re: Multiple symptoms & getting worse. No diagnosis & getting desperate

Thank you very much.

I called the doctors office, they refered me to their website for more info. We will go to these follow up appointments, get the results of her tests, and then if refered to someone else make an appointment. Even though the Doctor is expensive if he can successfully treat her I don't care home much it costs, he could be well worth the expense.

The suggestions mentioned so much have been very helpfull and have given us some much needed hope, thanks so much. She has started taking B12 suppliments and her mom is taking her to the store today to get some probiotics, it was recommended she eat lots of yogurt but because of her milk allergies she couldn't. I have been thinking these food allergies were more a symptom of her immune system rather then a true allergy...... some foods we have reintroduced with positive results.

Again, thanks so much as it's nice to have hope and see her get better. Any additional suggestions or comments also welcomed.

 
Old 03-04-2008, 09:48 AM   #6
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Re: Multiple symptoms & getting worse. No diagnosis & getting desperate

Good luck to you and keep us posted okay?

 
Old 03-04-2008, 10:29 AM   #7
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Re: Multiple symptoms & getting worse. No diagnosis & getting desperate

LBo,

I sure will continue to pray for your daughter as well as her parents. Being a parent myself I don't know if I could handle it being them having a complex medical history rather than myself.
Keep pushing for answers! They are out there, just have to find the right doctor.
Sounds like she has terrific parents! Please keep us updated!

Take care, and GOd bless,
Annette

 
Old 03-15-2008, 11:05 AM   #8
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Re: Multiple symptoms & getting worse. No diagnosis & getting desperate

I hope your daughter is feeling better. A couple of thoughts occurred to me while reading your posts. The first was whether or not she was tested for Lyme disease. It is possible to be infected without any memorable symptoms like the bulls-eye. If it is not treated promptly is can cause many symptoms including some neurological ones like numbness and weakness.

I also wanted to mention that you should look for the methylcobalamin type of B12. It is found more often in health food stores rather than the super market or pharmacy. Apparently, the type that is frequently found in grocery stores is cyanocobalamin and it is not as readily absorbed and not as good for neurological use.

Good luck and keep on top of those doctors!

Heather

 
Old 03-17-2008, 06:00 PM   #9
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Re: Multiple symptoms & getting worse. No diagnosis & getting desperate

A little update.

Since my last post she had a CT scan of her chest. Nothing really abnormal, some swelling or inflamation of broncial tubes (I think) but nothing to worry over and nothing serious. She also had a nuclear (?) test where she drank some milk and checked for acid reflux. Again, nothing to worry over however she digests food slowly but the Dr. didn't seem concerned over it.

We went to a Rhuemotologist today who examined her and went over her records. She has been experiencing severe joint pain of late, she finds it difficult to walk due to pain in her knees, ankles and hips. Her elbows and jaw hurts as well. All other symptoms still remain; numbness in her arms, legs, hands and feet, headaches, and general sickness feeling including a low grade fever. The Rhuemotologists pretty much ruled out arthritus and thinks her symptoms are a result (post chronic illness) to an event that happened back when she started feeling sick. We can't think of anything, none the less she prescribed something for her imflamation of her joints (forget, like powerful motrin) as well;

A MRI of her head (Check for brain abnormalities)
Family Education Assessment
A-Galactosidase
Vitamin B-6 Assay
Heavy Metal Eval, 24 hour urine
Epstein-Barr EA Antibody
Epstein-Barr EBNA Antibody
Ebstein-Barr Virus VCA IGG AB
Epstein-Barr Virus VCA IGM AB
Lyme AB's (Elisa & WB IGG&IGM)
Heavy Metal Screen, Blood
Vitamin B-12 Assay
Epstein Barr Virus DNA by PCR, Quant
Physical Therapy Treatment

Think those tests are enough? The Dr. was very thorough and we all liked her approach and care she provided. If anyone could decifer some of those tests I would appreciate it, I am clueless to most. I see the Vitamin B-12 and B-6 will be tested (as mentioned here) and Lyme as well.

Thanks again, any and all feedback appreciated.

 
Old 03-18-2008, 10:50 AM   #10
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Re: Multiple symptoms & getting worse. No diagnosis & getting desperate

LBo,

Thanks for the update. It certiantly sounds like the Reumy is being thorough, thats awesome. I will say a prayer that they find some answers soon for your daughter, and get her on the road to recovery!

Please continue to keep us updated!
Take care, and GOd bless,
Annette

 
Old 04-03-2008, 04:19 PM   #11
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Re: Multiple symptoms & getting worse. No diagnosis & getting desperate

On the discovery health channel they did a show about Epstein -Barr syndrome. They would have info about it on their website.
I have experienced a lot of the same symptoms at different times since I was a child.
Then the dr wouldn't look into it much. I had my tonsils removed, bronchile asthma.
UTI infections, severe leg,chest pain headahes. I just always felt bad. they said growing pains. now things are getting worse but I've found a good neurologist who is looking into
the nerve pain and numbness dizzy spells ect. Everything seems to be normal on mri's blood work except b-12 My primary dr says fibromyalgia and polyneuropathy but the neurologist wants to do some more tests because he doesn't want to miss anything that could be more serious.
I hope the dr's can find out what is wrong with your daughter. Be very persistant with them and don't let them quit trying to find out what's wrong. make sure all of her dr's know all of her symptoms. Have her keep a journal to show the dr. It does sound like you have a dr that is trying to find the cause.

I know how hard this is for her. Trying to understand it and to deal with her symptoms.
I'll pray for her and you.

 
Old 04-04-2008, 08:49 AM   #12
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Re: Multiple symptoms & getting worse. No diagnosis & getting desperate

Thanks for all the support and feedback.

All of her blood tests were negative or normal, as well her urine test. Her brain MRI shows a "small" venous malformation also known as Cerebral Cavernous Malformation (CCM) or Venous Angiomas. This could explain the headaches, tingling and numbness she experiences. As far as the general "sickness", joint pain, itching and rashes the Doctor diagnoses it as Chronic Pain Syndrome with no known cause; unexplainable.

The Rhumatologist referred us to a Neurologist whom we will see on the 22nd of April, unless a cancellation occurs allowing her to be seen sooner.

If anyone is familiar with CCM please share, thanks again. I will update this thread when results from the neurologist is known.

 
Old 04-09-2008, 05:55 PM   #13
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Allergy to Sudaphed and epinephrine

This may seem wierd, but does your daughter take anything with Pseudoepenephrine (Sudafed, etc) or epinephrine in it? My wife is somehow allergic to these things, and they are both things that are used to TREAT allergies. Most doctors swear that this is impossible. She would have seemingly random cases of hives and almost crippling arthritis that would last a week or so and then go away as mysteriouly as they came. The joints in her hands were so swollen and painful she could not use them. At some point, after several years of this, she had an outbreak of hives and the doctor gave her an injection of epinephrine and cortisone. By the time we got home, she could barely get out of the car. I somehow made the connection that every time she got this "arthritis", she had had hay fever and was taking Sudafed. After she recovered from the horrendous hives and joint pain from the shot, I threw out all the Sudafed in the house and she has never had any of this since (15+ years). It's a pretty wierd condition, but I have seen it with my own eyes and the results speak for themselves.

My point is that in addition to all the food and environmental allergies, your daughter is on a lot of drugs and you need to make sure that the doctors are not boxing you into a diagnosis like "Chronic Pain Syndrome" without eliminating things the doctors may be trained not to look for, like drug allergies to anti-allergy drugs.

Good luck.

 
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