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- Sun Oct 23, 2005 9:42 am
I am sorry this post is so long, there is a lot of information and data collected over the last 8 months, which help to paint the whole picture. Please help!! Any suggestions would be appreciated!
In late March, my daughter (2 years old at the time) developed a high fever (102-105). She continued this fever for a little over a week. Her only other symptoms were sore throat and stomach pain. When her fevers dropped, they were 100-103 and continued in that fashion for two more weeks. She would run fevers at least twice a day and usually in the afternoons/evenings or nighttime. It was during these two weeks that we had her first ultrasound and CBC. The ultrasound was of her abdomen and showed "multiple lymph nodes in right lower quadrant" these ranged from .4cm to 1.4cm in size. Her CBC abnormalities were as follows:
C Reactive Protein (High)2.2
SED Rate (High)87
At the end of the three weeks of fever, she had lost 4 pounds (she was only 28.5 lbs to begin with, so this was a large drop). They decided to admit her to the hospital. At the time of admission, her RBC had continued to drop (3.34) and her SED rate had elevated to 94. While in the hospital her fevers would spike so quickly that by the time the nurse would get the thermometer, she would be drenched in sweat. After four days in the hospital they released us with a possible juvenile rheumatoid arthritis diagnosis. She continued to run low grade fevers (99 to 100)for the next 4 weeks. At this point her blood work was taken again. Her new counts were as follows:
Everything else was normal.
Six days later, I came home from work to find a golf ball size lump in her neck. They redid blood work and did a subsequent ultrasound and CT of her neck, as well as an x-ray of her chest. The repeat blood work showed (6 days after previous CBC):
A few atypical Lymphs were noted by the reviewing doctor (not sure what that means)
No SED Rate test was done
The ultrasound showed a mass, without "necrotic phlegmen or abscess". There was some vascularity in the mass (not sure what this means). The CT showed that the adenoids and tonsils were somewhat enlarged, but did not cause an obstruction. The mass measured 3.8 x 2.1 x 3.0 cm. It was suggested that the inflammatory process was probably matted lymph nodes. It was suggested that it was possibly a thyroglossal duct cyst. The x-ray of her chest was normal. The first ENT we saw (who was not a pediatric ENT) felt that it was an infected thyroglossal duct cyst. After about a week, the mass started leaking brown fluid through her skin. The fluid was cultured and no infection was found. Our second opinion was a pediatric ENT, who felt that it was not a thyroglossal duct cyst, but was not able to give us an alternate diagnosis. After about two weeks of draining (tree weeks after initial appearance) it seemed to be resolved, leaving only a gas pocket in it's place (noted by a repeat CT).
About two weeks later, she once again started fevering. It was a Monday morning and we weren't able to wake her up. She seemed a little warm, but we thought it was the heat (we live in Florida). She then sat up and opened her mouth to let out a brown frothy liquid (about a cup). She didn't really vomit, it was just kind of there. We ran her to the doctor. She "vomited" once more on the way there and twice at the office. By the time we go there, her fever was 103. They gave her two phenergan suppositories and one FeverAll suppository. The FeverAll didn't even touch the fever. By the time we got home it was up to 105. We gave her Motrin, followed an hour later by Tylenol. only then did her fever come down a couple of degrees. She continued with these fevers (102-105.5)for about a week again. Then she started with the lower grade fevers of 100-103. After two weeks of fevers, the doctor redid her blood work. I am in the process of getting a hard copy of this report, however I know that it showed an elevated CPR and her SED rate was back up to 51. A week later, I took her to the ER where they did more blood work and another CT scan. Her CT showed no regrowth in her neck. That blood work was as follows:
SED Rate (High)60
We seemed to be fine for about 7 weeks. Then she started fevering again. This time the fevers reached 106. Although, they did not last as long (about 7 days) before turning to the fast, drenching sweats, they were the highest her fevers have gotten so far. About five days into the fevers this time, she developed a hard, immobile mass about 3cm in diameter behind her left ear. They put her on antibiotics and it went away about 2 wks later. This time we did an immune panel along with SED rate. Her blood work was as follows:
SED Rate (High) 82
CRP (High) 4.61
RBC (Low) 3.60
IgA (High) 191
IgG (High) 1268
Also there are some misc. symptoms which have developed over the last seven months. Our daughter started sucking her thumb - she never did this before (ever) and never even took a pacifier as a baby. Her memory seems to come and go - some days she is fine (can identify all letters, write her name, etc), other days she can't remember what a toothbrush is called (has known this for 2 yrs now). She is constantly irritable (not the happy, easy going little girl I have always had) and in between fevers is either whinny and clingy or extremely hyperactive and manic. With the last two bouts of fevers, she had several occasions where the fevers were preceded with her lips, hands, feet, and nose turning blue (they were freezing cold despite her 102 or higher temp). She also seems to get very thirsty before her fevers strike. She is still at only 27 lbs and is often pale in the face with dark circles under her eyes.
| Dr. Heba Ismail
- Mon Oct 24, 2005 2:42 pm
This is very troubling!
Has there been any blood, urine or stool cultures performed?
Also, has TB been excluded?
You've mentioned that juvenile rheumatoid arthritis had been suspected at a time, so was there any joint affection, and what lab studies were done to confirm or exclude that diagnosis?
As for your child's abnormal behaviour, it is expected that she act irritable and agitated with the constant illness and fever. The thumb-sucking is a sort of auto-protective and soothing mechanism where she would regain that sense of comfort she once had whilst suckling and breastfeeding.
As for the bluish discolouration, this can very well happen with any rapid rise of temperature, sometimes also with shivering and rigors.
- Mon Oct 24, 2005 9:45 pm
Thank you so much for responding. There are times where my husband and I feel so alone in all of this, and aren't sure where to turn. It was wonderful to find this web site and even better to have someone respond with some direction.
The blood cultures performed were mostly CBC's, SED and CRP rates, and finally an immunoglobulin panel. Oh, she also was tested for cat scratch, and a couple of other similar fever inducing diseases. All were negative. She has had many urine cultures, all which came back neg.
She has NOT been tested for TB. Should we have her tested for TB?
As far as the JRA goes, she has not really had any known joint swelling, or any other joint related symptoms which would lead us to believe that that is what this is. The only tests related to JRA are the SED and CRP tests (which both come back high during the fevers, and never completely return to normal between fevers), and the RH(?) test, which came back negative.
Thank you again for your time, thoughts, and help!
| Dr. Heba Ismail
- Thu Oct 27, 2005 9:59 am
Let's see what we have here and examine the possibilities.
I can understand why your doctors thought of of JRA, as there is a type known as 'systemic onset JRA' which presents with similar symptoms and signs. Joint affection may not occur early.
But I also believe TB needs to be excluded because of a CT report which mentioned 'matted lymph nodes'. TB can also present with a similar clincal picture.
The presence of atypical lymphocytes in one of the CBC reports could point to some viral infection as cytomegalovirus or Ebstein Barr virus.
Discuss these points with your doctor and see what they think.
- Mon Dec 19, 2005 8:38 am
I am back again, as concerns have continued. We did choose to have her tested for TB and it came back negative. She has been tested for Epstein Barr, also negative.
It has been about 6 weeks without incident, but Thursday she started running a fever again, on and off. This one has not been as high (about 103.5). She did start complaining of a sore neck around the same time. Friday, I thought I could feel a small mass, but wasn't sure. The mass is just to the left of midline. Saturday and Sunday, the mass seemed to get slowly larger. I took her to the ER Sunday night because she was very uncomfortable (her neck hurt).
Although the doctor only gave us pain medication, she did say that the lump did not have a very defined border, and suggested that at this point we demand a biopsy and possibly a consult with a hemotologist/oncologist. What do you think?
| Dr. Heba Ismail
- Fri Dec 23, 2005 8:10 am
Malignancy should be excluded in any case presenting with recurrent high fever, highly elevated SED rate and any ill-defined mass.
However, there are other causes that should also be considered as:
Auto-immune diseases ( including JRA).
Immune-deficiency states with repeated infections (Chronic granulomatous disease is a possibilty).
Let's wait for the biopsy results as they may be very revealing.
Please keep us informed with the updates.