I feel kind of silly posting on here when we don't even have our blood test until tomorrow, but I'm worried about my daughter.
On 26 Jan 2011 she fainted while we were out. It was a hot day, but she was well hydrated. It took her quite a while to regain consciousness. She contined to have dizzy spells and in March 2011 we took her to have a blood test.The most significant thing was that she had an extrodinarily high RCF.
2035 in 2011
(1415 in 2009)
The dizziness continued and she also started feeling breathless,.
She has also had frequents bouts of tonsillitis that her psychologist said was probably due to stress. Around July 2011 she got slapped cheek disease,as did her younger sister, but my 8 yr old had it far worse.I've never seen her so sick!! But no blood tests were ordered at that time.
Around November 2011 I got a call from the school to pick her up because she had a really sore neck. When I felt it, I thought it was just a knotted muscle. I massaged it a bit and thought that it was just that she was sleeping in a bad position or it was due to her anxiety and the stress of having to concentrate so hard at school because she has dyslexia. She has felt fatigued a lot, and continued to complain of the neck pain, the dizziness and breathlessness. She has also been really pale and has dark circles under her puffy eyes for months. She hasn't lost any weight, but her appetite isn't what it used to be.
About 2 months ago I took her to a new medical centre that had just opened up to see what was causing all of these symptoms. Because of her anxiety the doctor didn't want to do any blood tests and suggested that I keep a journal of what she eats and what activities she's doing when she gets the dizziness/breathlessness. I couldn't find any links to any food or activity, she had just started at a new school, and we were highly focused on getting her the educational support she needed.
When she complained of the neck pain again 2 weeks ago, I had another feel of it, and it felt different. I thought it felt like a completely benign, innocent lipoma.The same doctor who suggested the journal sent her off to have an ultrasound done that showed it was an enlarged posterior cervical lymph node measuring 1.2 cm. (he didn't state on the referral that it had been there for at least 6 mths). That's when I started freaking out!!
The conclusion was that we should have a repeat ultrasound in 6 wks as it was possibly due to infection.
Finally we got to get in to see our family doc who felt it and said that while Leukemia/lymphoma was a possibility, it would normally feel much firmer than it is.
I've been reading on here for the last couple of days, and it sounds quite similar to another story were the dx was Nodular lymphocyte predominant Hodgkin's lymphoma.
Based on that, it sounds like the blood test is unlikely to show any real abnormalities.
But the thing is, I KNOW in my gut that something is wrong. Just like I KNEW from when she was 5 that she had a learning disability, but everyone thought I was over-reacting until a battery of tests confirmed it .My daughter knows she sick. She has no energy. She's barely eating. Everything hurts....but she doesn't know that it's potentially something very serious.
I got another phone call from the school today to pick her up because she wasn't feeling well. She didn't even play at recess.She just sat in the office. Art is her favourite subject and she knew that coming home early meant she would miss out on what she loves most at school. Probably doesn't sound like a big deal, but that is HUGE for my daughter.
My dad died of secondary melanoma 5 yrs ago next month. He died within weeks of his diagnosis because the doctors brushed off his symptoms for such a long time, despite having a basket ball sized tumor in his gut, which is why I am preparing to be told that blood tests are normal so I shouldn't worry. I know that they will think I'm over-reacting if I push for a biopsy, but I wouldn't put her through something like that unless I really believed it was warranted- which I do.
She bruises easily, but I don't see that as a big deal, because most of the females in our family do. She also seems to always have a low grade fever- around 37.4 c (99.32F)
Sorry for the super-long intro, but I'm feeling guilty knowing that it has been there for so long and I just dismissed it as a knotted muscle, and all of the symptoms she has had over the last year+ are starting to fall into place for me, and make more sense and I didn't want to leave anything out.
These are some of her other blood test results from 2009 and 2011. (in 2009, she had been complaining of severe shin pain that lasted 6 mths or so, so the doc wanted to rule out rheumatism.
|WBC < 4.0 - 12.5>||11.0||(11.4 in 2009)|
|NEUT < 1.5 - 8.0> 6.3|
|(5.2 in 2009)|
|LYMPH <1.5-5.5 >||4.2||(5.4 in 2009)|
|MONO <0.2 - 1.0>|
|( 0.7 in 2009)|
|E0S < less than 0.7>||0.1||(0.1 in 2009)|
|PLAT <150-480>||313||(361 in 2009)|
|HB <115-150>||131||(132 in 2009)|
|HCT < 0.33- 0.45>||0.38||(0.38 in 2009)|
|RCC <3.9 - 5.6>||4.5||(4.6 in 2009)|
|MCV < 75- 90>||86||(84 in 2009)|
|MCH <25-31>||29||(29 in 2009)|
|MCHC <320-360>||341||(346 in 2009)|
|RDW <10.0- 17.0>||12.4||(12 in 2009)|
I would suggest an Xray of the upper torso to see if there are internal enlarged lymph nodes that cannot be felt. If she does have internal enlarged lymph nodes, that could be more likely an L&L disease. But if the enlarged nodes are only in the cervical region of the neck, it could be an ongoing infection or virus, although lymphoma is not impossible if in the early stages. Early stage lymphoma can be very hard to diagnose, so we certainly cannot tell you either way. So I would not jump to any conclusions.
The RCF can sometimes be useful in diagnosing anemia, but the rest of the blood counts do not suggest that. But discuss this with your doc.
Thanks Trey. We're still waiting on her blood test results. Our family doctors practice (where I have been going for 12 yrs) has been taken over by another group, so things are really different now. She had been the only doc working there for months, and they just secured a new doc, so our doc is taking some time off and won't be back till the 6th June. When I called to see if the results were in yesterday I was told that the results would go to the referring docs 'inbox' and after they had been sighted by her, only then would they be put into the system. So it looks like we'll be in limbo until 6th June.
Anemia is definitely a possibility as I have Pernicious anemia.
When I took her to the doc who referred her for the ultrasound he made a big deal about how much muscle tension she has. She had also been having weird visual disturbances and we took her back to her opto who said she needed new glasses but that she thought the visual disturbances were from having migraine with aura.
So we started her on K-mag (magnesium and potassium supplement) just over a week ago for the muscle tension and migraines. In the last two days I've noticed a big difference in her energy levels, appetite and mood. So some of the symptoms I was concerned about can be scratched off the list now, which is a relief.
Strangely enough, I would be less concerned about the lymph node if it was bilateral. But it's just the one in the posterior triangle of the right mid neck (that I'm aware of). I know it doesn't make a huge difference, but the measurement was 12.5mm , not 1.2cm as I had previously posted.
I might try booking in to see the new doc about getting a chest x-ray.
Thanks for the advice. It's much appreciated.
One more thing that I wanted to add thats been eating me up, is that during the first trimester of pregnancy with her, I was working as a dental nurse. Not only were we both exposed to many dangerous chemicals, but I took a LOT of x-rays without taking the safety precautions I should have. I never used the vest because I honestly didn't undertand the risks associated with radiation exposure to a developing fetus.
By the second trimester I had quit working as I had hyperemesis. I couldn't keep anything down and was vomiting 24/7. I lost 10 kg's in that first trimester.
With my 2nd pg I had done more research on hyperemesis and was taking the drug zofran because no other anti-nausea meds were working. Even with IV zofran,I was still throwing up throughout both c-sections. (1st one was an emergency c-section, 2nd one was planned c-section)
That is a small lymph node, so doctors would not be so concerned about it. But she has other symptoms, so you should pursue a diagnosis. One sided enlarged neck lymph nodes (with no others in other regions) are more likely infection or virus related since the two sides drain lymph from different areas. See diagram:
There are many possible causes, including the following list:
Regarding the dental Xrays, they are directed beam and very low radiation. So unless you pointed it at your abdomen there would be insignificant side-scatter radiation exposure to the technician and fetus. So don't let that concern you.
Phew! Thanks for putting my mind to rest about the radiation exposure.
The diagram about the right sided lymph node drainage was interesting. She's had a small calcified conjunctival lesion in her right eye since she was about 3 or 4 that the opto said was highly likely to return if removed, so we opted for drops, tear duct massage, hot compresses ect. But it's never gone away. Now I'm wondering if that could be a benign source for the enlarged lymph node.
Thanks for all your help.
Our amazing family doc moved heaven and earth to get me the blood test results even though she's away, on the condition that I see her to discuss the results as soon as she gets back.
The red cell folate is still ridiculously high.
|R.C.F||< 218-820> 2555* in 2012||2035* in 2011 1415* in 2009|
B12 is good even though it's dropped a little over time.
|B12- <180-740>||354 in 2012||492 in 2011||697 in 2009|
Reds all look good to me....
|HB||<115-150>||132 in 2012||131 in 2011||132 in 2009|
|HCT < 0.33- 0.45>||0.40 in 2012||0.38 in 2011||0.38 in 2009|
|RCC||<3.9 - 5.6>||4.4 in 2012||4.5 in 2011||4.6 in 2009|
|MCV||< 75- 90>||89 in 2012||86 in 2011||84 in 2009|
|MCH||<25-31>||30 in 2012||29 in 2011||29 in 2009|
|MCHC <320-360>||333 in 2012||341 in 2011||346 in 2009|
|RDW <10.0- 17.0>||12.1 in 2012||12.4 in 2011||12 in 2009|
But whites seem to have dropped over time, even though they are still in the lower end of the normal range.
|WBC < 4.0 - 12.5>||5.3 in 2012||11.0 in 2011||(11.4 in 2009)|
|WBC NEUT < 1.5 - 8.0>||2.6 in 2012||6.3 in 2011||(5.2 in 2009)|
|WBC LYMPH <1.5-5.5 >||2.2 in 2012||4.2 in 2011||(5.4 in 2009)|
|WBC MONO <0.2 - 1.0>||0.4||in 2012||0.4 in 2011||( 0.7 in 2009)|
|WBC E0S < less than 0.7>||0.1||in 2012||0.1 in 2011||(0.1 in 2009)|
IM screen (mono) NEGATIVE
There is nothing pointing clearly to an L&L type disease, so unlikely although not entirely impossible. The counts are good, and the WBC dropped from high normal to mid-normal, which is actually good.
But you should continue to watch and make notes on her generalized symptoms you mentioned, since she may have something significant going on, but maybe not. Often such things come and go without a diagnosis. But keep trying, since it could be something that requires treatment.
You should ask your doc to discuss the RFC. The meaning of high RFC is a matter of debate among researchers. Many people may have it, but are never tested. If she takes a vitamin supplement, you may want to reduce folic acid intake in the supplements. Ask the doc what her Serum Folate Level shows.
The high RCF is weird. She doesn't take any vitamins that contain folate.She just takes her omega 3's and the K-mag (I've double and triple checked them, and there's definitely no folate in them). There's heaps of info out there on low RCF, but hardly anything on when it's high. I'm very curious to find out what our docs interpretation of it is.
The enlarged node is not going anywhere. I keep checking it when she's sleeping hoping to find that it's disappeared, but no such luck.
Her appetite had increased for a couple of days which I put down to the K-mag supplement, but she's back to hardly eating anything.
Do you still think an upper torso x-ray would be helpful? There's a couple of autoimmune disorders on the diff dx list that suggest upper torso x-ray too.
Took DD back to the doc who had referred her for the ultrasound. Don't know why things were so different this time,but he's now referred her to have an ultrasound guided fine needle aspiration biopsy. (I think that's what it's called) I thought he'd just prescribe a course of broad spectrum AB's to see if that reduced the lymph node.
He also had a look at a mole we have been watching on her foot which has been changing and didn't pass the ABCDE test to my untrained eye. It didn't pass in his examination either so we've also been referred to the skin cancer clinic to have it looked at and likely biospsied.
We're still waiting on the path results for the FNA biopsy, which I'm not holding my breath for re: a dx.
Today I got another call from the school to pick up DD because she wasn't feeling well. Turns out her *(*^%%$ sports teacher forced her to run laps despite having chest pain, breathlessness, and being light-headed.
So I took her back to the doc who ordered a chest X ray ASAP.
It didn't look good to my untrained eye. It looked like she was missing half a lung! The tech asked when our follow up appt with our doc was and I told him we were just waiting for the biopsy results and would go back to see him then.
He told me that the films and report would be ready by 10am tomorrow for me to pick up and I needed to take them straight to our doc. Then he asked why she needed to have the FNA biopsy and after i explained it to him he seemed even more serious/concerned.
As we were leaving i noticed that there were 3 techs/radiologists/docs....whatever tthey are.....all looking as the films. That can't be a good sign .
Well her chest xray was nowhere near as bad as I thought it looked.It just showed coarsened bronchovascular markings. The FNA was undiagnostic because it didn't yeild enough specimen for a full analysis...which is prety much what I expected from reading here.
She has been to see a pediatrician from the childrens hospital about her multiple symptoms who picked up on an irregular heartbeart and ordered an ECG and bloodwork, mostly for autoimmune disorders and thyroid. Our nex appt with her is on the 9th August.
We just got the results of her follow up ultrasound which says that several lymph nodes are now identified in the posterior margin of the sternomastoid muscle ranging in length from 4-24mm indicative of progressing lymphadenopathy.
Thank you for updating. Overall it does not clearly show as an L&L type disease, but early stages can look like many things. But L&L is not the highest probability. You are finding what many parents find when the symptoms are not specific, which is a long process of trying to narrow the possibilities with few clues. The main focus should be on autoimmune, hidden infections, difficult to find viruses, and metabolic disorders (glandular or dietary including food allergies). Some of these require specialised tests which most regular doctors don't have much knowledge about. She needs to see specialists in these various fields.
I got a phone call from the hospital yesterday saying she has been booked in to see a cardiologist based on her ECG results. That's not until September, so I'm thinking it can't be too serious.
I got another call just now saying that based on her latest ultrasound results they need to see her next week.