MY CHILD HAS A SUBARACHNOID CYST

updated: 09.21.2018

It’s going to be ok!

Chances are that if you landed on this page either you or a loved one has been diagnosed with an arachnoid cyst. While I am not a doctor, and I do not suffer from an arachnoid cyst, I can give you the perspective of a parent who’s child does have one. This should also give you an idea on whats in store for you ahead.

My daughter Emma was born on June 27, 2013. My wife and I were extremely happy to hear the news that after months of trying she was finally pregnant! We did EVERYTHING possible to insure that this was going to be a smooth and flawless pregnancy. She got off birth control months before, took her daily prenatal’s, and for the most part we lived in a stress free environment.  The vessel for our soon to be daughter was prepped and primed for an easy delivery. Or so we thought.

Arachnoid Cyst Diagnosis

During one of our routine visits to the doctors office something came up on the sonogram. We noticed something was a bit off when the lab-tech called our doctor in to evaluate what was on the screen. Thinking nothing of it ( it was our first child ), when we were told to leave, we left. A week later we were called back into the office as they wanted to go over the sonogram pictures with us.

Upon arriving to the doctors office we were fast tracked and greeted by the 4 on staff doctors. To get an appointment to see one is already a mission, to see all 4 in the same office was quite the anomaly! My wife was rushed into the room, propped up, and began the process of having yet another sonogram taken. At this point I began to get worried and asked the doctor if anything was wrong. Waiting for the doctors reply felt like an eternity; In reality it was 20 seconds. “We’re not sure” was the response given to us by the doctors. At the time I could not begin to fathom how these trained professionals could not give me an answer. Our choices to evaluate the situation were: to either leave it up to nature, or have an emergency C-Section. We choose the ladder. We were told to prepare for the worst, go home, pack some belongs, and return to the hospital because the show was about to start.

Our premature daughter arrived to us via C-Section  at about 8 p.m. Immediately, due to her size, and pre-existing condition, she was hooked up to the majority of the machinery in the NICU. The following day I took my daughter to get her first MRI. Upon completion we were notified that it was indeed not blood but a cyst.

Surgeries

1 month after being born my daughter was allowed to go home. Due to her size, and recent birth,  the neurosurgeon opted to wait another month before performing any surgeries.

• Surgery 1: Endoscopic Fenestration  – In a nutshell the doctor will pop and drain the cyst to alleviate pressure [performed on my daughter and did not work] .
• Surgery 2: Endoscopic Fenestration + VP Shunt – Same as above with an added drainage that will drain in my daughters stomach ( body will absorb the fluid ).

The first surgery of the 2 was performed in order for there to not be a permanent VP shunt placed. This however did not work for my daughter but it does in many other instances. We opted to do the first operation as it was an option to hopefully remove the cyst and also not impact her life with a shunt.

Symptom and Side Effects

Including but not limited to:

• Head Aches
• Vomiting
• Mood Swings
• Cognitive delay
• Developmental delay
• Seizures
• Weight Gain ( Steroids )
• Increased head size

Therapy –

Therapy has tremendously helped our daughter improve! Our daughter was granted the ability to get therapy for 2 – 3 days a week and every so often we have to get re-evaluated with the insurance.

• • Occupational Therapy –  My daughters therapist will reinforce and introduce things as she see’s fit. They started off trying to just make sure our daughter knew how to use her hands. Blocks, puzzles, scissors are all going  to be things your child is going to be shown how to use / master.
  • Speech Therapy – Learning the differences between sounds,  genders, and sentence structure. The speech therapist has helped tremendously with our daughters Echolalia (repeats whatever you’re trying to say. Me: “Emma come here” Her: “Emma come here”).

Follow up appointments –

Depending on the size of the cyst and its location you will be required to have follow up appointments. Be ready and accustomed to weekly, bi-weekly, monthly visits to the doctors office. MRI’s were performed initially every 2 weeks, to monthly, to every 6 months, and finally we’re at the yearly stage.

Are they sick or is it the shunt?

Kids naturally live in a cesspool of death and decay. Anything they tend to find on the floor, street, trash, or in their nose suddenly becomes nutrition. With that being said just because your child has a shunt you don’t always have to rush them to the hospital. Kids are always going to be kids and they will trade germs and sicknesses like baseball cards. This is normal. Your kid is fine.

Disclaimer: I am not a doctor. Consult with your child’s doctor for anything related to sickness.

These are some tips to see if there is a problem with the shunt or if your child is just sick:

• If the child has a vp shunt like ours then you should be able to feel the rivets of the shunt itself. If you can feel them then its not flooded and it should be working as intended.
  • Make sure you sporadically touch the area so you can become familiar to what it should feel like.
• Is your child eating? – If food is still a priority then its most probably not the shunt.
• Is your child acting normal? – Normal that they are still at their core themselves.
  • If your child is hyper and remains hyper then its probably not a shunt issue. What they told us to check for is huge swings in temperament and

Advice to other parents –

1. Be patient! – Your child might need more time to get things done. Your child might have mood swings. Your child might have constant head aches. Your child might just be slow.
2. Find the right neurosurgeon! – If your area has multiple pediatric neurosurgeons get the best one available!
3. Join a support group! – There are plenty of Facebook groups that can give you other peoples perspectives. You’re not alone!
4. Take it day by day and I cant stress it enough that you’re not alone. You did nothing wrong. Its not your fault.

 

Update –

Emma is now 5 years old has been in a “regular” kindergarten school for over a month. We gave the teacher a 1 week grace period of letting her come to her own assumptions on our daughter. Almost immediately the teacher said she noticed she was a little behind. Unfortunately, they could not attribute that to the pace of the new school ( previously in day care ) or if it was a lack of exposure ( day care VPK ). With that being said, she has in fact made leaps and bounds in a short amount of time. She has been able to mimic her peers more often and is doing more  of the “right” things than not.

I also did not mention that we had her go through the process of getting an IEP (Individualized Education Program) over the summer. The results of the test showed she was in fact delayed by 2 years and classified as developmentally delayed ( we knew she was slower and we were giving it time ). The light at the end of the tunnel is that they feel she can and will catch up with the proper help. Unfortunately the school where she’s at does not have the resources to give her the additional help and because of that we’re enrolling her into another school.

Currently:

• Better penmanship
• Can read over 20 words
• Speaking a little better ( more sentences )
• Better at expressing herself ( still not quite there but its better )

Needs improvement:

• Following directions
• Cognitive ability