Discussions By Condition: I cannot get a diagnosis.

My 3month old rolls her eyes and curls over to other side

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: CarolA1224
  • February 13, 2007
  • 05:59 AM

My 3mo daughter started rolling her eyes to one side and curling her body to the opposite. The 1st noted one occurred on 12/30/2006 when she was almost 9wks old. We took her to the ER and they ran a CT and did a bunch of bloodwork. While the CT was negative, they decided to admit her for 5 days while providing her with a "broad spectrum" of antibotics while they waited for bloodwork and meningitis results. She had NO fever during this and it lasted for about 4hrs. She had an EEG and MRI done, all came back perfectly normal. Her bloodwork was perfect, though she did leave the hospital with more antibotics (Cephlax) due to a possible infection from the IV.

She has had 3 more of these "episodes" since then; all 2 weeks apart. I noticed that it alternates with each episode and then she kind of keeps her neck "curled" to the side that she had the episode with...kind of like she's got a neck cramp...she moans during it and I noticed that she does fall asleep during the "episode" but when her body twitches...she starts that eye-rolling thing going again for about 10secs. She does come out of it just fine and there doesn't seem to be any developmental delays or setbacks. 2 neurologists and 1 pediatrician have said that it could be due to acid reflux and that they do NOT think that it's seizures. I disagree b/c why would that only happen every 2 weeks and not all of the time? Why would reflux only happen when she's waking in the morning...not during the day after waking from a nap?

She is a breastmilk fed baby, 98% bottle b/c she still falls asleep at the breast w/o eating enough. She does get 1 formula bottle due to me not having enough milk for both her and her twin brother; most likely due to pumping instead of them latching...he also doesn't like the breast...

I'm at a lost b/c I feel that the docs are missing something and I'm terrified. It took 4 years of fertility treatments to get her and her brother and I'm so afraid that she'll be "taken away" from me. Has anyone heard of something like this?

Reply Flag this Discussion

5 Replies:

  • Even though her EEGs are normal she still my be having seizures. I had seizures that were undiagnosised for years. My seizures came from a part of my brain that is so deep it was hard for an EEG machine to read them. Please be aware of the lenght of these episodes. I had a seizure that lasted over 45 mins when i was nine months old. it left me with permante loss of my short term memory. One of the greatest things my mom did for me was keep a diary of what happened to me when i had a seizure. He would write the date, how long it last, and what my symptoms were. I would start keeping a log of when your daughter has these "episodes". It will make it easier for you to tell the drs exactly what is happening.
    Anonymous 42789 Replies
    • February 21, 2007
    • 07:41 PM
    • 0
    Flag this Response
  • does she have any "different" facial or body features? normal development and growth? while seizures seem the most likely, i would still ask the doctor about things like dystonia or autism. my nephew has "episodes" like this but his are all throughout the day (mostly the eye rolling and turns his neck to the side and upwards, he moans when this happens -or yells/grunts) he was diagnosed with fragile x, seizures, retardation, and autism. i would ask to be safe- that your little one isnt in the early development of anything else- before accepting epilepsy as the answer, mostly because of the 2 week symptom schedule. good luck :)
    kamsae 88 Replies
    • February 25, 2007
    • 04:40 PM
    • 0
    Flag this Response
  • It's been awhile and I wanted to provide an update. My daughter is now 16 months and thriving EVERYDAY and has been symptom free for a few months now !!! Her initial pediatrician thought this issue to be Sandifer's syndrome, which is a really bad acid reflux condition. 2 neurologists agreed, but keep reading because they of all "specialists" are the one who annoyed me the most... Anyway, she was put on a liquid form of Zantac. It tasted horribly and the little stinker(yes, she IS cute, but she was a stinker) wouldn't open her mouth to take it so we ended up wasting more than her swallowing...we tried a flavored variety and hid it in her food and milk, and she would find it and then be really picky to eat or drink. The good news, is that her symptoms did subside to about every month as long as she didn't miss more than 2 doses of liquid Zantac as well as mommy not eating any garlic while breastfeeding her. (The doc said that this wasn't the case so I did my own experiment, and sure enough, she'd have an episode the next day) We switched pediatrician's and found this wonderful older woman who had all sorts of tests run on her, all to find her healthy as can be, though still having those episodes if we cut the liquid Zantac. She referred a wonderful gastroenterologist who switched the prescription to Prevacid solutabs. My daughter LOVED them for they had a strawberry flavor, instead of that horrible baking soda taste, and I could put half of a dissolvable pill under her tongue or way back in her cheek and by the time she realized that it was there, it would dissolve and she wouldn't choke. This RX was a lifesaver...she didn't have any episodes for 4 months!!! Then the new doc wanted us to start to wean her...well, she had a few more episodes where she was throwing up a little bit over a course of 8 hours and would be rolling her eyes and tensing her poor little body, but only if I had garlic or she didn't drink enough water or milk. More and more we moved her onto solid foods and while the throwing up stopped, she would still walk and hold her head crooked every 2 weeks, for about 2 weeks, she'd go straight, then go to the other side. We never saw her roll her eyes again. Then we had a scare...one day I was feeding her a bottle and noticed that behind her right ear, where the lymph nodes are, there were 3 little bumps that were quite huge. I freaked out and expected lymphoma...the doc calmed me down and ordered an CT and MRI. In the meantime, I took her to a chiropractor for about 6 sessions before my money ran out due to me still not being to find work as a computer application programmer. While the lumps are not normal size, they are smaller, and now she is being seen by an Ear-Nose-Throat (ENT) specialist just to make sure that it's not tied to her ear infections or lymphadenitis. While reviewing the MRI results, I stumbled upon a "disease" named BPT or Benign Paraoxysmal Tortocollis which when I researched the internet, described her symptoms/episodes EXACTLY. While there is no cure for this, what little research has been done has shown that she will grow out of it, though she may be plagued with very bad migraines as she grows up...something that she picked up from me. The doc is watching her cell counts and liver/kidney sizes to make sure that there isn't any signs of lymphoma and I watch those bumps constantly. While I'd love a biopsy of them, I will wait to see what Mr. ENT has to say. While I still think she had some physical setbacks when compared to what she was doing before those 8 hour episodes as well as to her twin brother, I think she's doing great!!! I keep praying that all will be fine and that it won't be cancer and that is about all that I can do unless her condition changes. So, if anyone has this BPT issue, try the prevacid first for at least 3 months. There are lots of studies out there where you can post your issues. I want to send ours to one doc who has a case study out there to mention the prevacid thing. Thank you all for your replies and most of all any prayers that you sent our way.
    CarolA1224 1 Replies Flag this Response
  • Great news. I just read your posts and am so glad you provided an update. Very often people do go back to see how things are going and it's great to know the latest news. I am sending my prayers to you and your family. Let's hope she outgrows this and has a happy, healthy life. :) Beth
    Beth56 272 Replies Flag this Response
  • it's always nice to hear when someone finally gets the answer to their medical issue. Im glad you managed to work it out for your daughter.
    taniaaust1 2267 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.