Sandifers Syndrome.3gp

Evie having her spasm's in the ER there are actually about three of them. One big one at the end that makes her cry. She is on solutabs 15mg half in AM and half in PM. We have stopped all acidic fruits and she is going to her Pedi tomorrow for a more aggressive treatment.

Category:

Education

Tags:

• sandifers syndrome
• infant spasms
• seizures

[Kpeterson614]

I wanted to add that someone told me that citrine stones are known for helping with digestion issues. I bought a few off Amazon kept them in the little black pouch they came in and put in under her mattress. I know some people will think it is silly but when your baby is that miserable you will try anything to make them feel better. I will say that I did notice a small difference after we put them under her bed. Maybe it was a coincidence or not. The amber necklace helped her in teething too.

[Kpeterson614]

Okay so we did a full blood panel on Evie since she is one now and it came back showing she is allergic to milk and dogs. She was on milk and we have 3 dogs. We switched her to Soy and luckily the dog she is around the most is hypoallergenic dog. We make her stay away from the others. I think she has finally outgrown it. My cousins all outgrew it by the time they started to walk and become more active.

[Michellemommyof3]

has she been vaccinated? alot of these are listed as a side effects of many of the vaccines.

[Kpeterson614]

@Michellemommyof3 she is current on all vaccinations. However, I am not sure that is why it happened. I found out through our family that I have 2nd and 3rd cousins that this happened to. My husband and his mom also had reflux and Eczema. We also just found out she is allergic to milk and dogs. She was on milk and we have 3 dogs. We switched her to Soy and luckily the dog she is around the most is hypoallergenic dog. We make her stay away from the others. I think she has finally outgrown it.

[Kpeterson614]

you can read about her ER visits and doctor visits here evelyn grace peterson dot com. Go to baby journals and it is all there. I hope this helps.

[Kpeterson614]

After having some allergy testing, speaking to the doctors and not seeing spams in almost 2 months we decided to cancel the biopsy. She will still have her 24 hour PH probe to see how much she is still refluxing and if we can decrease her meds. She is allergic to milk and she has been taken off anything that has milk in it and is now on soy toddler formula. She is like a new person now. The docs said it would settle down after her 1st b day and it did THANK GOD!

[Kpeterson614]

@beckymannin I did breastfeed and formula feed since she came out eating 2 oz a meal. I am a registered medical assistant and my first thought went to she is having seizures. When the ER doctor saw her episode on my phone that I taped he sent her to Texas Children's for immediate testing. They did the EEG, MRI and blood work. Since all came out clean I felt pretty confident it was not seizures. I would suggest doing the 3 tests above. This way you will be sure it is Sandifer's

[beckymannin]

Just curious, did you breastfeed Evie? I am and my 5 month old was diagnosed with Sandifer's at 3 months. She had a very large episode (almost 1 min in length) in front of the doctor. She is on 15mg prevacid (1/2 am, 1/2 pm) and 1-2cc maalox every other feeding. She makes the same jerky movements all the time and I still see larger episodes; however none as large as when she was diagnosed. GI doesn't seem concerned and has done no testing. Basically, I'm just seeking some advice..

[Kpeterson614]

Evie just turned 1 and all of a sudden we haven't seen a spasm in 3 weeks. We put Centrine stones under her mattress, some people say it helps tummy and digestion issues. She is on the same dose of medicine below and is moving away from pured foods and into all finger foods and solids. I have started her on whole milk only 1 oz in a bottle at a time. I will increase it by 1 oz every week. We have an EGD and PH probe test coming up in August and an appointment with an allergist.

[Kpeterson614]

Her MRI came back clear and so did her blood work.