Ever since Mac was two-months old, we had a sense that something “wasn’t right.” For example, it seems that from the very beginning, he was not much of an eater. This kid honestly showed no active interest in being fed–he could take it or leave it and he would usually leave it. The second thing we noticed were the enlarged lymph nodes on his neck. At his three-month well-check, we were advised this was normal and it was very common in children to have enlarged lymph nodes when the body was trying to fight infection. “What infection?” we would ask. “Something viral,” we were often told. Take note, we listened to the doctor and even after researching on-line, everything we found seemed to support this idea. Then, we noticed a rash on Mac’s groin. We thought it was diaper rash–though, it really didn’t look like diaper rash. Then we thought, “well, both our kids have eczema, it must be that…” The rash never went away. In fact, the rash never changed–it never got worse but then again, it never got better. Then, there was the cough. “Seasonal allergies?” (again, listening to the doctor) but the cough, unlike the seasons, never changed. And…let’s not forget the night sweats. Mac seemed to always have cold hands and feet but without fail, he would be sweating as we would put him down for the night or during our middle-of-the-night milk party. Then there was the constipation. That’s always fun. Constipation so horrible it often led to midnight baths and more use of vaseline that I care to admit. Undoubtedly, the most horrifying and puzzling thing were the tremors. I wouldn’t describe them as seizures, they were more like the trembling you experience when having a fever but you are unable to get warm. An episode of these tremors were accompanied by his lips turning blue one late afternoon. Needless to say, my husband drove him to the hospital. It is this ER visit that is the catalyst for finally getting us on the road to a diagnosis. After the ER visit, it is mandatory to follow-up with the pediatrician on base. Luckily, Dr. I Don’t Know (sorry, but this is how we refer to him) was out of the office. All I can say is, “thank God.” This was late Friday afternoon and we were at Children’s UAB first thing Monday morning for an oncology consult.
Only now that we have a diagnosis does it seem so simple. Sadly, these were the things we could see / hear. We were not even thinking about what we could not see (i.e. soft tissue tumor on his temporal lobe).
According to Boston Children’s Hospital, common symptoms of LCH in children include the following:
- Skin rashes (Mac = Check)
- weakness and Failure to Gain Weight (Mac = Check)
- Fever / Night Sweats (Mac = Check)
- Tenderness in bone area (Mac = Check–in hindsight, of course. Something was growing in his skull!)
Other symptoms include, loose or lost teeth, swollen gums, multiple ear infections, eyelids swelling and other vision problems, excessive thirst and urination (http://www.childrenshospital.org/az/Site1101/mainpageS1101P1.html).
In hindsight, I (I cannot speak for my husband) feel bad for making comments like, “Mac is really enjoying being a baby.” I made this and other similar comments in reference to him not sleeping through the night, being a picky eater, or even when he would be content until the moment he saw me, only to cry. I know, I know, “don’t blame yourself.” But I do. I KNEW something was askew. Not only did my gut tell me something was not right but my son was telling me the same. Lesson to be learned: if you have a gut instinct, act on it. Get a second opinion. Or a third. Or a fourth. As parents of young children, we are their ONLY advocate.