Between working , not sleeping, and worrying about him, I was moody, depressed, and tired. I still can't go a day without worrying if he's really better. Why must I waste my time worrying about losing him? When Austin had his first episode, I realized how quickly my life could crumble beneath me. Every minute of every day revolves around Austin in some way. If I'm at work, I'm telling someone about his most recent accomplishments. If I'm shopping, I'm shopping for him. I always tell him, I love you more then the moon, and the rain, and the sun; because I could live without them, but I could never live without you. I am thankful Austin does not have seizures, but if he had, I would have loved him the same. I would have learned as much as I possibly could about epilepsy.
I feel the same way about G.E.R.D. From the very beginning, I've longed to know as much as I possibly could about my son's condition. I've spent so much time watching You tube videos. I've also read many different articles on sandifer's syndrome. I've even learned about making my own reflux medication, if needed, with baby buffers, and the reflux rebels. We've done great with the solutabs, so I don't need to do this. I'm thankful that it's around for people who's babies don't take the solutabs as well, and for those who's children don't respond to them as well as my child does. I would have loved to find a blog about Sandifer's Syndrome when I began researching, "seizures after eating". I wonder how many babies out there have had sandifer's episodes and a doctor told their mothers, "sometimes babies just have seizures, for no reason at all." Well sometimes what appears to be a seizure, is not really a seizure at all!
Hi,
ReplyDeleteYour blog is so helpful! My 6 month DD started having seizure like movements with the onset of solids- orange vegetables and fruits. I took her to the ER and (we are in the UK) and they ran 2 eegs. One was 30 min and the other was 23 hours- both normal. bloods- normal, urine-normal, skin test- normal, eyes-normal. Everything normal. I didn't give her much solids in the hospital, but I did notice weird movements around dinner time. But those were normal on the EEG.
2 weeks later- back arching, pain, crying while feeding, and pain about 20 mins after nursing. I was scared. She has always spit up A LOT and in the last two weeks, more so than ever. She is a very very happy content girl and sleeps well and is gaining (though below the 50th percentile and 91st for height- so it seems she should be bigger). My other daughter always ran 70th percentile and is similar size. They are both big eaters. And she loves solids. I took her to the doctor and she wanted me to go back to hospital, but I told her there is nothing neurologically wrong with her. She rolls back to front, has been sitting well since 5 months, is beginning to get mobile with arms stretching up. I would love some advice. I called the pedi neuro and she does seem to to think the symptoms fit, but she said usually reflux improves with solids (but I have never done cereal), but your blog tells me otherwise! I would love some advice regarding medicine. The doctor gave her basically an antacid, but I realise we might need to get a PPI. my email is vkynes at gmail.com. Thanks!
Hi Will and Vanessa, I will reach out to you via e-mail as well. I appologize, I did not realize my site was reaching so many Moms going through experiences. It certainly sounds like your daughter may have been suffering with reflux, and from my readings, PPIs are the only medicines that will give them the relief they need. Prevacid Solutabs worked the best for my son, but every child is different. I hope your daughter has been treated since your comment, and that she is feeling better.
ReplyDeleteThanks for your comment!
Gillian