My youngest daughter is 5 1/2 months old (born at term, 7lbs 2 oz. 21"), has been on Prevacid since she was roughly 2 months old for reflux symptoms - I finally figured out that I believe she has Sandifer syndrome - pretty classic - head tilting, seizure-like spasms, tears in eyes, some pathetic-sounding crying, and we've done the video EEG and it's normal. I was breast feeding her until age 5 months and then had to stop - we're now feeding her formula exclusively and adding cereal to it at each feeding to help keep it down. She is now having roughly 5-7 "episodes" per day - this is on the prevacid. Does anyone have any advice for how to help her? She is now vomiting more than ever and the episodes cause her to sleep A LOT - probably 16-18 hours a day. I'm worried she'll fall behind due to the constant sleeping and all the time we have to have her spend on her wedge in an attempt to help her out. Also, are there early warning signs of autism that I should begin to look for at this age or do they only appear later in life?
Thank you for any help/advice!
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Hello Laura's Mom,
Oh my-little Laura sure has kept you busy. It sounds like you have both been working hard for 5.5 months.
Has Laura been referred to a pediatric gastroenterologist? It is worrisome that the Prevacid has not reduced/eliminated the Sandifer Syndrome symptoms. I am not sure why she is so tired.
It might be a good idea to schedule a visit with the pediatrician to look at all of the symptoms and treatments in place right now. Ask the pediatrician for a developmental check up too. You can ask your local health department or early identification program (childfind) can also do a developmental screening. Sometimes a sensory or motor delay occurs with reflux so it is best to learn as much as you can at this point.
Some babies with Sandifer need physical or occupational therapy to ensure that they move their muscles equally on both sides. Often a baby will tilt to one side and the muscles will tighten, making midline eating, sleeping or play difficult. I often find that it is helpful to schedule a separate "sick visit" just to address the concerns you are having. Often during the well baby check up, the doctor has a giant agenda of things to cover and you have a big list too. If you can help the doctor just focus on the reflux, feeding, arching, sleeping, you can both develop a plan of action.
Please let me know your thoughts and give us an update when you have a moment.
Hugs to you,
Jan
Thank you for your feedback. We've been pursuing what we thought were issues with Laura's vison - only to find out last week that her vision is fine. The vision specialist said that it looks like she's choosing not to follow (track) and engage. Has anyone else experienced this with a Sandifer baby? She kind of said we should look into autism and see a developmental specialist - we were hoping everything in the developmental delays were due to not being able to see, but no such luck. Now I wonder if the Sandifer is causing some of these issues and hope there's someone out there that can tell me if Sandifer is known to cause developmental delays that are social AND physical (she's 9 months old and doesn't roll over, support herself on her arms, or sit - along with rarely smiling, not babbling overly often, and not tracking very well).
Thank you in advance for your comments.
Laura's Mom
I apologize that it's been a LONG time since we have posted anything about Laura on here. We had twin boys to add to our 3 year old and 2 year old Laura - busy household these days - thank goodness for Laura's 4 special helpers!!
Laura has been diagnosed with infantile spasms, global developmental delay, and CDKL5 mutation (tough diagnosis to get, but we remember every day that she's still LAURA - nothing has changed for her with diagnosis, just our perception - she is still our little cuddle bug). Laura continues to make progress, but it's very slow progress and comes only after much therapy and practice. She now wears glasses to correct some of her Cerebral Vision Impairment. We are still doing PO and OT 2 days per week and she is currently working on beginning to stand on her own and we've almost completely mastered sitting unaided. Laura is now 2 1/2 and a delightful girl. We are on the ketogenic diet, topamax, prevacid, and vigabatrin (sabril) for her seizures and this has been her magic cocktail for the last year.
Any of you struggling for answers, all I can say is that the instant you know there's something wrong, seek help - and don't let anyone tell you that there's nothing wrong if you believe there is. We finally went to Mayo Clinic in Rochester, MN and now have a FABULOUS team for Laura.
In our case, the vision issues were a big clue, and then at 6 weeks, Laura started doing these odd movements that looked like she was in pain (eyes were odd and stiff body, looks very strange). They got more and more frequent and finally we got to a neurologist that identified them as infantile spasms - which is the reason for her developmental delay.
Best wishes - and Happy Holidays!!
Laura's Mom
WOW do I know what you are going through - I'm sending you lots of strength. I think the biggest thing for you to remember is that there are many children with infantile spasms that are treated just fine and the root cause of the spasms is treatable. This is not the case for Laura and she has a genetic mutation that causes all of these things. You daughter could have something very treatable (and that's what I'll be praying for).
That being said, Laura had her first spasm episode when she was 6 months old and we started treatment for infantile spasms (we began with prednisone therapy) when she was 10 1/2 months old. By this time, she was at full-blown hypsarrythmia status and the prednisone took this away.
I think the biggest thing to find out is if she has infantile spasms, what is the cause? Sometimes they know and sometimes they don't. We have used vigabatrin (sabril) with much success for the infantile spasms after the prednisone didn't completely work for us. We also use the ketogenic diet for Laura with much success.
Wishing you the best for your testing!!
Please let me know how it goes, as I'll be thinking of you guys. If you have any questions or need any help, please don't hesitate to let me know.
Emily & Family
I don't know anything about the facility you're at, but I do know that they did several genetic tests after the spinal tap and MRI for Laura. She has a normal spinal tap, normal MRI - just want to make sure that they test you for genetic things like Rett Syndrome and CDKL5 - and there are others. ACTH and Prednisone are usually the first try for medication for IS - and have the highest success rate.
I know this is a very scary time for you and your family - from experience, I can tell you that you WILL get through this. I remember each and every day that it's only MY perception of Laura's future that has to change, nothing in her life changed with a diagnosis of IS or CDKL5. It helps me to remember that nothing has changed for her - only for me and my husband in our perception of the future. I pray Lia's IS is treatable with prednisone and medications so you can continue to help her gain ground develomentally.
Please let me know how you guys are doing - HANG IN THERE!!!
Emily
Hi Lauri, Any news? I've been thinking about and praying for you guys. Just hoping everything is going well.
Emily