My toddler has a brain cyst: How did you cope?

Questions: How are moms coping with their toddlers having a cyst on their brain, and for those moms that proceeded with neurosurgery, did the surgery leave some permanent damages on your child? Background: My son will be turning 4 in October. I noticed towards age 2-3 he was delayed on some milestones and was becoming aggressive. Since December 2019 until April 2020, my son has been tested and referred to a lot of places. My son was tested for autism, and the results came negative for autism. Therefore he was referred to a neurologist where his brain wave came abnormal with seizure activity (with no obvious signs of my son having seizures), and MRI results show a cyst on the left side of his brain. These results were given to me on June 4th, 2020, after all those months of testing and waiting. The neurologist does not require surgery nor medicine for now, but if it gets bigger, he will need surgery. The neurologist wants my son to have an MRI every two years (with general anesthesia) to see if the cyst grows. After all, the cyst is what is causing his aggression and developmental delay. Due to COVID, his physical therapy, speech therapy, and occupational therapy are on hold, but he is seeing a psychologist for his behavior. I’m really stressed about the outcomes of the cyst pressing on his brain that can cause headaches, nausea, vision problems, pressure, seizures, and more. He will be referred to a neurosurgeon not because he needs surgery right now, but so I can be informed of the size, location, surrounding tissues, side effects, and potential outcomes. All I think of is if the cyst grows will he be in a lot of pain, will the surgery be successful, what if he dies during surgery, what if the surgeon makes a mistake, what if the cyst grows again.

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All this sounds so scary. So sorry. Seems like if he does not have surgery he will get worse

The best advice I can give, is be the best advocate for your child. You are their voice when they are little, if any appointments confuse you or you don’t understand speak up so they know and can help, also look into a children’s hospital in your town or state.

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There are support groups that you can join, also therapists can work with you as well. Do what the doctors recommend and seek second opinions if you don’t understand or agree. Hearing the treatment from more than one provider helps you to understand then you can have a better understanding of them.

You all are in my prayers :pray:

My prayers for you both.

Get a second opinion make them explain until you understand not until they say you are.going through this with my 3yr old granddaughter best of luck don’t give up no matter what

Get a 2nd, maybe 3rd opinion. While I have no medical training I’d probably do the surgery. What would happen if the cyst were to rupture?

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My son is 4 almost 5 and we found out about his cyst when he was a year old he just had his 4th mri done and waiting on results from that but I’m telling you if you feel like something is wrong or the doctors may be wrong get a second opinion. Our neurosurgeon said the cyst looks fine and was growing properly but I had to take him to the hospital not to long ago due to a head injury and everyone in the er said it was way to big and something needed done.

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My baby had cyst on her brain. They cleared up. I coped by praying and convincing myself it was ok and she’d be ok.

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Get another opinion, ask for resources to help you both, pray a lot, research surgeons, get the surgery to remove it if needed- trust in God. I’m praying for you and your family.

I found out my son had 2 brain cysts when he was 6 (right side and near the hypothalamus). He had a very aggressive seizure that lasted too long. I was terrified. I asked god… Why my son? Why me? He has had MRIs, CT scans, eegs, and was put on meds for seizures. I took him off the meds (he was not being himself at all). I am terrified, apparently his seizures only happen in his sleep so i have to be alert at all times. I thought it was over… years later a seizures just like his 1st happened (he was almost 9). He is now 9 and on zonegram which he takes before his bedtime. Thank god no seizures. My son has no delays or problems other than the seizures ( i thank god). He is always the smartest in his class :sparkling_heart:. And he is closely monitored by a group of pediatric neurology every 3 months. One MRI every year to monitor growth ot movement. He sees a neuro surgeon too, she is always the second opinion and explains more in depth. Always advocate for your baby and be your baby’s voice. Never walk away with questions, always ask what you want to know. And never left referrals take forever, call and keep calling to check status. I learned to accept his condition because i need to teach him to reach for the stars and that he can accomplish anything. You are strong momma. God knew we could help our babies walk this path… So he chose us.

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Prayers for You and Baby, God bless!

If it’s any consolation, It was discovered that I had a cyst on my left side of brain at the age of 5, had I not been hit by a car, (prompting discovery) they said I would of dropped dead within the year (silver linings). They operated immediately, 40yrs later you never would have known except for the golf ball sized dint in my head which my hair covers nicely.
If they could safely remove this 40yrs ago, imagine the leaps and bounds they have medically progressed to in that time…

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I’m just a nurse & a mom & not trying to give you an advice, just thinking out loud.
IF this cyst has so many bad effects on your child’s development & behavior WHY would you drag him to all kinds of therapies to correct the symptoms when you can potentially correct the cause. Also, having him under general anesthesia every two years to monitor the size it’s probably pretty dramatic for your precious child. Pray & ask God for guidance; this is not an easy decision. :pray::pray::pray:

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My son had a Corid Plexus cyst not sure if I spelled it right before he was born they told me I could wait to see if it went away on its own or have an amnio I chose to wait and it was gone on the next ultra sound. He was born 6 weeks early and age 9 was diagnosed with a learning diability and ADHD. I think it has to do with the cyst but I was told no. My prayers to you and your son that God helps get the answers you need.

I would be getting a second opinion but only after I saw the neurosurgeon…

Sending prayers to you and your family​:heart::blossom:

Sending my prayers for the angel.