Thursday, April 16, 2009

Laci's story

After an easy pregnancy, and uncomplicated labor and delivery, Laci was born on January 16, 2007 (at 39 weeks). She was small, 5 lbs 9 oz., but otherwise perfectly healthy. (I’m a petite mom at 4’11”) We didn’t notice anything “wrong” with her until the day of her two month vaccinations. (Looking back now, however, we think that even in those first few weeks she usually tilted her head (slightly) to one side or the other. In addition, she was “colicky” – and her pediatrician thought it might be reflux-related, so we had started her on “Axid” at 5 wks old. We didn’t think it was helping as she was still very fussy and very “spitty”). She awoke the night of her vaccinations with her head “stuck” in a tilted position toward her right shoulder. She was crying in pain and couldn’t seem to move her head. I called her pediatrician’s on-call nurse and was told to give her infant Tylenol. She then fell asleep, and by morning she was able to move again, and her head was normal. I had been leery of giving her the reflux medicine, and didn’t think it was helping the colic, so I stopped giving it the day after the “stuck” episode.

The following week we saw her pediatrician for extreme colicky behavior (crying all day, screaming 5-6 hours at night), and she prescribed Prilosec. In addition, we were told to give her the Axid again as well, and that the two medicines would overlap for a week or two while we waited for the Prilosec to start working. Less than a week after starting the Prilosec, Laci woke up crying with her head again “stuck” to the right. I again gave her Tylenol. Within a few hours, she was able to move her head, but she stayed tilted to the right. After examining her, the pediatrician prescribed physical therapy for muscular torticollis. We took x-rays of her head and neck to rule out any bony abnormalities. The films were normal. The following week, she suddenly tilted to the left. Despite the switch, we were instructed to begin physical therapy.

Laci was 3 months old when we started physical therapy. For the next three months, we did therapy, and she was mostly tilted left. Some weeks she was almost straight, and some weeks she was really tilted (head basically touching her shoulder, body curved like a “c” or banana.) After several weeks of no real progress with the physical therapy, Laci’s pediatrician recommended we see a neurologist and get an MRI. I did not want to put her under anesthesia at barely six months old. I went to see a neurosurgeon to tell me that I didn’t need to get an MRI. Laci happened to be practically straight at that appointment, and he agreed that no MRI was necessary. She appeared healthy, was developing normally and meeting milestones. We continued with the physical therapy. At least once during that time, I noted that her tilt switched to the right for a few days. Then it went back to the left. The physical therapist thought it was “unusual” and agreed with the pediatrician that we should get an MRI. I still wasn’t interested in anesthesia for my otherwise-healthy baby.

Throughout the time we were doing the physical therapy (3month old to 9 months old) we were continuing with the Prilosec, but Laci was still having bouts of fussiness (though not nearly as often or intense as when she was 3-4 months old). We tried increasing the medicine as she grew and gained weight – and my husband and I were always skeptical about the effectiveness of the prilosec “suspension” formula that was being shipped to us by a mail-order pharmacy. It was sometimes fizzy, sometimes flat.

At 8 months old, still doing therapy, still on prilosec, her left tilt gradually improved, she was then straight for a few days. She then woke stuck on the right. After Tylenol and a few hours she could again move, but was tilted to the right. She tilted right for a week, then developed a runny nose, and went straight for a few days. She then started to tilt to the left again (gradually over a few days). Then, on September 15, 2007 (at 9 months old), she woke early in the morning stuck on the left. I gave the usual Tylenol, and nursed her. This time, immediately after she nursed, she projectile vomited, then her eyes rolled back, and her whole body went limp in my arms. She was completely pale and non-responsive. We called 9 -1-1. I thought she was dying – couldn’t tell if she was breathing. While I was on the phone, and trying to get her to respond, she started crying. They sent paramedics to check her. They said her heart rate was fine. She still seemed “out of it” though, and her head was completely tilted to the left. Her eyes rolled back again while the paramedics were here. They still felt she was stable enough for my husband & I to transport her to the ER. She continued to be very lethargic, and her eyes again rolled back on the way to the hospital. Eyes again rolled back, when we were checking in – which got them to take us right away.

At the hospital, she was given blood and urine tests, a CT scan, and a spinal tap (complete $#@%@ nightmare). Every test came back absolutely normal. The CT scan showed that her sinuses were full – but we were told that was basically normal and not a problem. We were discharged with a diagnosis that the vomiting/fainting had probably been the “flu.” No explanation for the head tilt. Back at home, she was tilted but otherwise normal. Except that over the next two days she had screaming episodes (25 minutes of inconsolable screaming/crying, followed by sleep for 30 minutes, then woke screaming/crying for 15-20 more minutes.) The pediatrician sent us back to the hospital to test for intussusception. X-rays of her intestines – also came back normal.

Finally, still reluctantly, I was willing to consider the MRI. We saw a wonderful neurologist who understood my concerns about anesthesia (family history of adverse reaction) and recommended a “one bang” MRI – which didn’t require sedation, but would rule out a tumor or tell us whether we needed to go forward with a full MRI. The MRI came back normal. We also saw a gastroenterologist as we thought maybe the reflux was causing the tilt. She didn’t think so, but did switch us from prilosec to prevacid. We also saw a pediatric eye specialist. He initially thought Laci might have “strabismus” that was causing the tilt. Over the course of two more appointments however, he’s still not sure. Laci no longer has much tolerance for doctors, so he has not had much luck examining her to get precise eye measurements. While I’m certainly not an eye doctor, the diagnosis doesn’t make any sense to me. Neither my husband nor I have ever observed any problem with Laci’s eyes … plus the tilt switches sides … and comes and goes …

Laci is now 15 months old. The tilting continues. It tends to come in two to three week cycles. It is usually to the left. She’ll be tilted to the left for two to three weeks, then gradually straighten over a few days, then be straight for a week or two, then gradually tilt to the left again. She tends to be quieter/fussier when she goes from straight to tilted. I’ve also noticed that at least twice, she became straight when she had a runny nose. Also at least twice, she’s gone from straight to tilted when teething. I have no idea what’s significant and what’s coincidence. It’s been an absolute exercise in frustration trying to determine what could be the cause of the tilt.

Thankfully, we’ve not had any “stuck” episodes since she was 9 months old. She did vomit last month, but we think it might have actually been the stomach flu this time. She vomited three times in 24 hours, but didn’t have the eye-rolling or stuck head … she had a slight fever. It seemed like a stomach flu. She was slightly tilted the week before and a few days after the “flu” but then was straight for a week. She’s currently tilted left. Our neurologist’s last recommendation was for blood work while she’s tilted to see if anything shows up in her blood. I’ve not had it done yet – partly because I didn’t want to subject her to any more needles – partly because I keep hoping she’ll grow out of it. At 15 months and still tilted, we’re now probably going to do the blood work. She’s still also on the prevacid. (The neurologist did not think Laci has BPT.)

When she’s tilted, she doesn’t appear to be in pain. In general, she’s a very happy baby. She laughs easily and smiles lots. (Crooked-but-happy is how we often describe her). She’s not walking yet, but she’s close! She “cruises” furniture and practically runs with a push-cart toy. She’s the sweetest thing I’ve ever seen …

It’s so frustrating and scary to not know what we’re dealing with. I so appreciate this website (thank you Richelle!)(and Martin’s website too!)

4 comments:

Kimball McGary said...

Vaccines. Almost everytime

lisamarie253 said...

@kimball mcgary, is there research or info on vaccines causing torticollis? My son randomly had this when he was 4 mos. Back in 2007. When I gave in to pressure. He has had 6 injections, which I highly regret each and every one. I have been researching so much about this for a year now , I knew they were bad back then, but not like I know now. He was also diagnosed with mastocytosis; uticaria pigmentosa 4 mos after torticollis. .again , right after vaccines. If u know of links on torticollis or research , please let me know. Thank you

Anonymous said...

Its not the vaccines. That guy who commented above is stupid. Im actually very against vaccines. My son is not vaccinated and has torticollis. Vaccines do NOT cause torticollis. But dont give them to your child regardless.

Anonymous said...

Vaccines have nothing to do with BPT. I am absolutey all for Vaccines. Without them there will be a comeback of ridiculous preventable diseases. The risks of not vaccinating are far far higher than if you do. I do not regret for one second protecting my children against polio, measles, Meningococcal etc. You only have to see a massive decline in these diseases to know vaccines have made a huge positive difference