newborn - branchial cleft cyst

[lilmamabrown]

A little long but I need to vent a little too, this has been a stressful week!

My 7 wk old was just diagnosed w/ a branchial cleft cyst. a surgeon told me that early in embryonic development the fetus has gills until lungs develop at which point the gills seal up... sometimes one won't seal all the way and will suddenly fill up for no reason at some point in life, it could occur as a baby just as easily as at 30!

Tuesday my baby was so fussy and then that night I noticed a marble sized hard lump on her neck under her right ear... I thought it was a lymph node. It was after hours for the doctor's office and she didn't have a fever so the nurse I talked to just said to wait to take her in til the next day. I took her in and they acted like it was somewhat common and scheduled her for an ultrasound at the Children's Hospital for 2 days later. For a 7 week old she has pretty impressive head control but the cyst is so tender she wasn't lifting her head or turning it towards the right. At least I was able to start giving her tylenol which I was too nervous to do before because of her age. I hate pumping an infant full of any type of medicine but oh my, what a relief that has been to her.

So, Friday I took her for the ultrasound and the dr. suggested I take her over the Emergency dept. because they would probably want to do surgery right away. That sucked! So I took her there and I was pretty calm until they told me I couldn't nurse her until they determined if she needed surgery that day. That was rough! I was up their ass to hurry up bc she was just screaming but I didn't have to push too hard... the surgeon was great and very quick. He looked at the ultrasound results and talked to some other drs and determined that she didn't need surgery that day. They prescribed Omnicef even though they don't believe there's any infection. I'm told that should stop the pain and that most of the pain is only bc it got big so fast.

She's on day 3 of Omnicef and fussiness has improved slightly. She still won't turn her head but she is trying to hold her head up a lot more. It's still super tender even with regular tylenol. The part that scares me is that it's still getting bigger... it's ping pong ball size today. Anybody else have experience with this? They said that she can wait to have it removed until closer to 12 mos old as long as the pain goes away and it doesn't continue to grow.

I have to call tomorrow and get an appointment with an ENT. I've done some reading but I haven't found much on this occurring in babies, only adults. I'm concerned about general anesthesia on such a young baby... even at 12 mos which I will definitly take over 7 wks. Also concerned about the cyst being so close to a facial nerve. I'm wondering if leaving it will cause problems with muscle developement if she won't turn her head that way. Ehhhhhhhhhh so many concerns!!

Thanks for reading, needed to let that out!

[2boyzmama]

I have never heard of this, but I just did some quick research and now you've got me wondering... My 3 year old had a sudden large swelling between his ear and his jaw line. His dr treated it as a Lymphadenitis, and it did go away for a short time, but now is back. It's not as big as it was before (it was the size of his fist at its biggest, with a lot of surrounding swelling) but it's still noticeable.

I found this picture, and my son's looks similar. http://ghorayeb.com/BranchialCleft.html Hmm...

[lilmamabrown]

probiotic?

Well, we made our visit w/ a specialist for tomorrow. Hope that goes well. That picture is exactly what it looks like... only bigger That's interesting that your son's got smaller and now is back.

Since she's on antibiotics would it be good to put her on a probiotic as well? Does anyone have any suggestions on that?

[2boyzmama]

Originally Posted by lilmamabrown

Well, we made our visit w/ a specialist for tomorrow. Hope that goes well. That picture is exactly what it looks like... only bigger That's interesting that your son's got smaller and now is back.

Since she's on antibiotics would it be good to put her on a probiotic as well? Does anyone have any suggestions on that?

Oh absolutely, get her on a probiotic!! Ask over in Health and Healing about why type and what dose. You can also take probiotics so she gets it through your milk.

My son's was obviously infected, there was a significant amount of swelling in the entire area, he had no jawline anymore, his entire cheek was swollen on that side. In fact, we even considered whether it was mumps, that's how swollen it was! The antibiotics lessened all the surrounding swelling and the lump itself was much smaller, but then grew again. It's not as big as it was initially, but still very noticeable.

His Pulmonologist is who first called it Lymphadenitis, his ENT saw it and called it just a viral infection in his lymph node, and his Infectious Disease dr is aware of it but hasn't personally seen it [Connor is my special needs kiddo with a complex chromosomal deletion, so he's regularly monitored by all these specialists] So far everyone was calling his a lymph node, but it looks almost exactly like that picture, so now I'm wondering if it is in fact a Branchial Cleft Cyst. He sees his ped next week for a well-child...I'll ask again then.

[2boyzmama]

And if she has surgery...it's scary, and any type of drugs in such a tiny baby sounds bad, but it's done every day, and she'll be okay Connor has had 4 surgeries and multiple other sedations, and even with all of his underlying health issues (numerous birth defects) he does okay. If you have time, post over in Special Needs Parenting to ask for tips about the surgery. How to handle nursing before/after, how to negoatiate hospital policies, etc. Unfortunately many of us moms have done it many times.

[lilmamabrown]

Thanks, I will. I'm really having a hard time wrapping my head around all this... I do have a lot of fears and a ton of questions!

[lilmamabrown]

Just thought I'd post an update here in case anyone ever used the search tool for branchial cleft cyst or is has a situation similar to what we had.

The ENT we went to sent us to have an MRI which revealed it was much larger than we thought and also not a branchial cleft cyst but a tumor. She referred me to a pediatric oncologist. He did an incisional biopsy on the tumor and it was not cancerous but they still were unable to classify it. He believes its a lymphangioma.

The inflammation surrounding the tumor began decreasing about 2 days before the surgery. Since it has continued to shrink. In other countries I guess it is common to inject a lymphangioma with a virus such as strep bc the infection and inflammation causes the tumor to break down. She got an infection on her own and the body was healing itself and we didn't even have a clue.

Its so nice finally having my happy girl back. Thankful it was nothing more serious.