Is this a syndrome?

[averysmom]

My daughter's symptoms so far:

SVT (Supraventricular Tachyacardia) in-utereo
Craniosynostosis
3 Brain tumors
1 Ocular tumor

These are the known issues so far. She is 2 months old. Just curious if anyone has had similiar symptoms and if it may be part of a syndrome?

Thanks for any thoughts & advice!

[NorthernLight]

I have sent you a PM.

[AllyCat]

Welcome Sheila! Don't know if there is a syndrome associated with this or not, but Your little girl is adorable! Sorry you are having all these issues. Looks like she has coronal? Our son had/has that too and also had to do eye patching. We are now trying orthoptics as he won't wear the patch anymore.

Oddly enough, our non-cranio son had SVT as a baby and appears to be outgrowing it. I'd be curious to hear other responses.

[craniomommynbaby]

Hi! I don't know the answer to your question but am wondering if you have been referred to a geneticist? This doctor takes your family's medical history and compares with known syndromes to see what it might be. Then, blood testing can be done to see if they can find certain genetic mutations. It is not something that has to be done, but some folks find it nice to see if there is a name that brings together all the different health problems.

[Avery's Mom]

Welcome Sheila! Don't know if there is a syndrome associated with this or not, but Your little girl is adorable! Sorry you are having all these issues. Looks like she has coronal? Our son had/has that too and also had to do eye patching. We are now trying orthoptics as he won't wear the patch anymore.

Oddly enough, our non-cranio son had SVT as a baby and appears to be outgrowing it. I'd be curious to hear other responses.

What is Orthoptics? Avery also will not keep his patch on!

[AllyCat]

Kelle, Orthoptics is physical therapy for the eyes. He does gross motor, whole body movements with the patch on for about 30 min a day. However, he won't really wear the patch, so we spend a lot of time trying to get him to initiate looking at things with his right eye instead of turning his head right to look at things with the left eye. She has also painted the inside corners of his glasses with clear nail polish. This sounds odd, but it forces him to look straight with both eyes if he wants to see clearly. It's really helping.

[Avery's Mom]

Kelle, Orthoptics is physical therapy for the eyes. He does gross motor, whole body movements with the patch on for about 30 min a day. However, he won't really wear the patch, so we spend a lot of time trying to get him to initiate looking at things with his right eye instead of turning his head right to look at things with the left eye. She has also painted the inside corners of his glasses with clear nail polish. This sounds odd, but it forces him to look straight with both eyes if he wants to see clearly. It's really helping.

Wow...cool. Avery totally refuses to wear the patch too. I plan to ask the doc about those drops that blur the vision to force him to use one eye.