Learning About Complex Pineal Cysts and My Kids Brain

I am 36 years old, and had never heard of the pineal gland. It is a gland located in the middle of the brain, and has something to do with melatonin production. I am still unclear on exactly what function it has. The first time I heard it was when I was told Mr. J had an enlarged pineal gland.

the cyst is that almost perfect oval in the middle of the brain

It's taken me a while to write this. Partly because I needed to process everything, and partly because we needed to wait until we had as much info as possible, so that we could tell him.

After his CT in the fall (when he collapsed at the doctors office) we received a phone call that they actually DID see something in the scan. The CT showed an enlarged Pineal Gland. I had no idea what this was. The nurse from the ER assured me it was likely nothing (it could just be a shadow), but mentioned the other possibilities were a cyst or a very small chance it might be a tumour. Of course, even knowing the probability was low for it to be cancer, that is where my mind went. I did as much research as I could, and indeed did find that the likelihood was low. That didn't stop me from worrying about it week after week.  He was referred for an MRI a week later.  I was concerned about how he would do with this. We decided not to tell him until the night before, to avoid his worrying too much about it.

Hubby and I both went with him, we were even allowed in the room which surprised me. At CHEO they have goggles that hook up to a dvd player, so the kids are able to choose a movie to watch. He did fine with the MRI until they told him they needed to give him a needle with contrast material.  He promptly said no thank you, told them he was done and didn't need a needle.  It took a few minutes, but with me holding his hand and the technician using a numbing spray we got it done.  A week later I got a phone call that they found something and he needed a follow up MRI in 6 weeks - I should call our doctor to discuss the results.

I tried my best to NOT freak out. I really did. But when you are told your child has something growing in their brain, that's not an easy thing to do. After I got the call, I met with our family doctor to discuss the results. She told me it was a complex pineal cyst. She said she had put in the requisition for the MRI and also a referral to neurosurgery at CHEO as a precaution.  I did a lot more googling while we were waiting. Pretty much everything I read said that they don't do anything about these cysts unless they are causing issues.  Up until this point, we hadn't really noticed any issues that were likely associated with the cyst so my mind was slightly eased.

Two days later, I had a phone call from the neurosurgeon. Not the office, but the doctor himself. He called me because we were going into the Christmas season, and he wanted me to know that he would see Mr. J after the next scan.  He was hoping that he would be able to reassure me that this wouldn't be an issue, and that these cysts are quite common and don't cause symptoms most of the time. The doctor wanted some blood work done, and that we should stop into the lab at the hospital when it was convenient.

Mr. J doesn't do well with needles, but we managed to get the blood work done without it being too traumatic for him.  While we waited, I was still slightly worrying that there may have been growth during the time between scans.   He had his next MRI over the Christmas break and again he did really well with it. They didn't do the contrast this time, so he was happy about that.

We had our appointment with the neurosurgeon 4 days later. There had been no change in the scans, which was good news and the blood work came back clear as well. He did say the cyst is larger than they normally see, and is pushing on one canal that brain fluid flows through, but at this point it is not blocking anything. I mentioned that there had been headaches with nausea and vomiting twice in the last week, and was also having a headache and nausea that morning, so they decided to do another scan while we were there to make sure that there hadn't been a change in those few days. We left the doctors office and made our way up to the MRI/CT area. I didn't even have the form filled out and the technician was ready for us - it was quick. This scan showed no changes, so the headache/nausea weren't related.

So, now we wait. He will have a follow up scan in 6-9 months (the doctor was hoping for 6 months, but with the braces it affects the picture and he wants a full, good picture so it will likely be closer to 8 months).  If that presents with no changes, then he will likely have scans yearly to monitor.  Apparently they don't normally continuously monitor these if there is no growth, but because of the large size and the slight pressing on the canal, he has many more scans in his future.

Mr. J didn't really know how to process all the information. I asked if he had any questions, but he didn't really want to talk about it. That made me feel better about not giving him any information while we waited (I really struggled with keeping it from him, but as hubby constantly told me, there isn't much to tell when we don't know anything).  He thought he was having the tests to try and figure out why he collapsed (which has nothing to do with the cyst). They never did figure out what was going on, but it hasn't happened since.

I have to say I am once again amazed at how quickly everything happened. We are fortunate to have some amazing doctors in our life, and our family doctor and pediatrician were both a great support to me while we were waiting for these further tests and appointments.

Mr. J really didn't like all these appointments he had to go to. Poor kid missed a ton of school (which would have been fine to him if he was able to stay home or do something fun). We have really gotten to know the halls of CHEO again after many years of not visiting often.  Mr. K is struggling with all the attention his brother was getting for those weeks, and is even more clingy to me than he was before.  Hubby and I? Not really sure. I am doing ok. Still a little freaked out that this cyst has taken up residence inside his brain, but knowing that it is stable helps a bit.

World Prematurity Day - No Baby Unhugged

November 17th is World Prematurity Day. It helps to bring awareness to the high rate of premature births.  .

Mr. J - approximately 36 hours old

Ten years ago, when  I was pregnant with Mr. J, I never expected that I would be separated from him immediately after his birth.  I dreamt of holding him in my arms, nursing him and just being mesmerized by the little life that had grown inside me.  Unfortunately, my dream was not the reality. He was born early and had difficulty breathing, so he was whisked away to the special care nursery. I could visit him, but I couldn't hold him as he needed to kept in the oxygenated incubator.

At 20 hours old, the doctor told me he was not getting better, and they needed to transfer him to a hospital with a higher level of care nursery.  That hospital ended up being the Children's Hospital of Eastern Ontario (CHEO).

He spent most of the next 10 days drugged and hooked up to all sorts of monitors.  All I wanted most of all was to be able to hold my son.  I held him once when he was a few days old (it was a big production to get him transferred to my arms - he had a chest tube they didn't want to disturb - and then another big production to transfer him back to his isolette . Because of the chest tube, most of the nurses wouldn't even attempt moving him out of the isolette) and I wasn't able to hold him again until he was 8 days old.

We made sure to touch his hand, his face, his arms so that he knew we were there. I would talk to him and sing to him, but he didn't get to be held.  Now, at 9 years old, he STILL craves physical contact, and I often wonder if it's because he didn't have it when he was brand new.

We were lucky to live only 25 minutes from CHEO and were able to spend quite a bit of time with him while he was there.  He was our first child, so we had no other kids at home to worry about.  That is not the case with everyone though, and not all babies in NICU's can have their parents with them so often.

Huggies knows how important human touch is for babies and has started the No Baby Unhugged program.  This helps to ensure that ALL babies in the NICU get hugs, even when their mom or dad cannot be with them. They have provided more than $50,000 in funding to 2 Canadian hospitals to get this program up and running, with more locations planned.

There have been studies done that show the many health benefits of skin to skin contact for babies - brain development, oxygen levels and more.  You can be a No Baby Unhugged Mom, and Huggies will send you a free package of diapers for your little one!  Hugs may not make everything better, but they certainly help to reassure us - and all babies deserve to have that.

Our Day At The Emergency Room

resting in the hospital waiting room before being called in

Mr. J gave us a big scare last week.  He woke up complaining of major head pain.  He was happy and alert, but anytime he moved his head he would have this giant pain. Standing up made the pain unbearable.

I knew we needed to see a doctor, and luckily my GP is normally pretty good at getting us in same day. She was able to see us about an hour after I phoned.

While we were in the waiting room, he started to look "off" and told me he was going to throw up. As we were making our way to the bathroom, he was stumbling around - I reached out to steady him, and we continued. As we got to the washroom, he collapsed.

Thankfully, I was right behind him so he fell into me and I was able to lay him down on the ground.  He was completely unresponsive for about 30 seconds (it doesn't sound like a long time, but when it is happening in front of you it feels like forever, and is pretty scary).

The nurse that was behind us called for a doctor, and 2 came over (one of them being our GP). He was responsive at this time, but not aware of what had happened and very weak.  We managed to get him to her office and she assessed him and sent us to CHEO.

When we got their, they triaged us as priority, which meant not a very long wait before seeing the doctor.  He listened to what had gone on and then went to consult with a colleague.  They came back recommended an ECG and a CT.

Through all of this Mr. J would have periods of alertness and seemingly "normal" (except with the head pain) and then he would get really tired and fatigued.  After the ECG, he actually took an hour long nap, and only awoke as he was being wheeled to the CT.  He is 9, and does not nap anymore...hasn't in years.

a little nap while waiting for the CT

He was pretty nervous for both the ECG and CT, but he did great.  I stayed with him the whole time and kept my hands on his legs so he could feel my presence.

When we got the results, all came back as being normal.  By this time, the pain had gone and other than a kink in his neck (from holding his head at a weird angle to keep the pain away) he was fine.

We were given instructions to follow up with our family doc, and if the had any more episodes of pain like that day, to be sent for an MRI.  They have absolutely no idea what caused him to collapse.

I am glad they didn't find anything, but at the same time I am petrified it will happen again since they don't know the reason.  I had fainting spells in my teens and early 20's, and they were never able to pinpoint why.  They eventually stopped happening.  I am hoping he isn't taking after me and this was a one-off type of event.

I must say that everyone we saw at CHEO was amazing.  They took us seriously, listened to our concerns and were so kind and caring to both him and I.

While our medical system may not be perfect, and there is room for improvement - it has always served us well when needed.  We exited the parking lot exactly 5 hours after entering.  In that time, he had 4 visits with the doctor, 4 visits from nurses, an ECG and a CT.  All it cost me out of pocket was $14 for parking.

and another trip to CHEO for Kyle

Well it wasn't an "emergency" I was really at a loss of what to do.  He was crawling around picking up cheerio's (one of his favorite pass times, the er doc nicknamed him "cheerio hunter") and he lunged himself forward, mouth first into our kitchen table leg (its a pedastel type table). He screamed, when I got him calmed down I noticed blood trickling out of his mouth - my biggest fear thinking he had knocked out a tooth - and there was a LOT of blood.  After the bleeding seemed to stop, hubby lay him down and had a look in his mouth.  There was now a large space between his top 2 teeth (which didn't use to be so wide) and it looked as if the inside of his lip was caught between them. We didn't want to rip his lip out - so we headed to CHEO. They are wonderful there. 

It was a quick trip, in and out in 1 hr!  The resident looked and thought the same as us, although she wasn't quite sure how to proceed, so she got the staff ped to come and take a look. Upon further investigation, it was NOT his lip stuck; the doc thinks the teeth got pushed back up into the gums, and because of that we were just seeing more gum than normal (although it was bloody and cut). He said not to be surprised if the teeth turn grey (because they are probably dead) and that we need to see the dentist so they can decide on the best course of action (leave them be or pull them out)

Poor little bugga bugga.......