My 16 Month Daughter Has a Cysite on Brain

I would get a second opinion. The wait could mean being able to do something for her or not being able to do something.

go get a 2nd opinion...NOW.....its your right to know everything about your child!!!...good luck...

Dear R.,
I am sooooooooo sorry that you and your family are having to deal with something like this. And while I can offer no medical opinions or advice, I can offer pray for you and your family. If you do not mind, I would like to put you on my email prayer list...
I do know that if I were in your situation, I would definately seek another opinion. Your doctor should be answering all your questions, and then some. I do not think that I could wait. I would be scared and worried just like you. I would also try to see a pediatrician if at all possible.
Once again, you are in my prayers....
M.

R.,

Your doctor should be answering all your questions (location, size, etc.), and he/she is not. You need to move on to a doctor who can and will answer your questions, and to get a second opinion. I'm not familiar with the Racine area, but ask your friends/neighbors/relatives for a referral.

Also, are you participating in WIC? They would be able to help you with a referral, too.

GET A SECOND OPINION!!!!!
She should be seen by a pediatric neurologist or a nerosurgeon.
The doctors either don't know what to do or they just think that you will go away!!!
Good Luck

you are your DD's best advocate in making sure she is well taken care of, so don't let the doctors ignore your request for information. If you feel that more needs to be done, tell them so and insist on it, be a persistent pain in the back side if you have to.

I wish the best for you. god bless.

Doctors can NOT keep your childs health records from you. Call the clinic and hospital (they will both have seperate records) and ask for complete copies of her records.

Find another doctor. Second opinions are always a good idea. Find a doctor that will talk to you and give you options. (Maybe a natural path and a regular doctor would both be able to help you.......)

Mothers intuition is almost always right. If you're not comfortable with how your daughter is being taken care of, it's because she's not being taken care of well. Leave that clinic TODAY!!!!

Get another opinion. Follow your gut.

If the dcotor "won't tell you..." then go to someone else. This is your child.

I am the 42 year old mother of two children with special needs. I am also a well-educated and versed child advocate. My older son has had four open-heart surgeries and countless "minor' procedures. I am deeply concerned that the doctors are withholding information from you. You have the legal right to any and all information regarding your child's diagnosis. Any time you are not comfortable with, disagree with or are generally dissatisfied with how you or your child are being treated, it is time for a second opinion. Please request any and all records from the doctor and find another doctor not affiliated with the original doctor. If you need more assistance, please contact the Wisconsin Family Assistance Center (www.wifacets.org). Prayers are with you and your child.

Dear R.,
I just wanted to give you some hope. I have a friend that just went through this with her son. And after a few surgerys her son has recovered. If you would like to talk to her e-mail me ____@____.com and I will get you in touch with her. I know this is a scary time and not getting the info to ease your mind has to be hard. I am with other people and find another DR who will be up frount and make sure you know what is going on. I think sometimes DRs forget how scary it sounds.
K.

I would get a second opinion. Do your own research online like www.webmd.com they have resources on there to answer questions. Good luck with everything, it's always a scary thing when you can't help your child and you don't know what's really going on

Hi R.. I'm so sorry that you are having to go through this! I agree 100% with Miranda in saying that they cannot with hold information from you. And like everyones says, do get a second opinion. And if they treat you the same as the first, get a 3rd opinion.
Do you have a support system? If you don't have any reliable family or friends you could get in touch with a MOPS group or some other mom's group. It's too hard to go it alone and it's sounds like you are a little overwhelmed. THAT IS NORMAL!!!! You are doing a great job! We all need people to help us through these rough times.
Take a friend with you to the doctor appointments. It helps to have another set of ears. Write down all your questions and keep asking until you are satisfied.
Doctors need to have compassion on us moms. We worry. That's how we are programmed. The Ped that diagnosed my daughter with diabetes spent so much time just comforting us.
Finally, take some time for yourself. I know that you are a super busy single mom but if you can have just a little time to yourself it seems like you can go on.
If you need to post on here again then do it. We moms need to encourage each other! God bless!

If it were my life, I'd go for a second opinion.

Hi R.,
I am not forsure if you are in the Milwaukee, Wisconsin area but, a great Neurosurgeon to see is Dr. Lew at Children's Hospital. He has one of the biggest hearts and stays in the room until all your answers are answered. My pediatrican switched to him after we dealt with him. She(my pediatrican) loves him and loves how he deals with her daughter. My pediatrican daughter was prodcuing too much brain fluid.
My daughter had cancer along her spine and he removed it. Dr. Lew made sure to keep us in the loop the entire time and he did not hide anything from us. I would recomend him highly. If you need any support please email me.
____@____.com

R., here is a big ((((HUG)))) for you, I am so terribly sorry you have to go through something like this. I don't have any advice or even any words of wisdom, I just wanted to let you know that you and your daughter are in my prayers.

Have you thought about maybe going to a different doctor for a second opionion? That is what I would do especially since yours won't even give you any information about the location or the size of the cysite. It is so critical for doctors to keep open communication with you and explain EVERYTHING.

Be strong, your family needs you. God be with you.

{{{R.}}}

So much frustration and fear comes from the unknowing! And I agree with so many - ask those questions and consider a second opinion.

Also, generate a list of questions you are concerned most about - including whether or not this is located and might cause delays in her walking and interupting her sleeping. And, when you ask them, whether on the phone or at a scheduled visit (you have the right to request one earlier!! - I sure would!) - have another adult present - one who may be emotionally prepared to help you / support you. Someone who may think of additional questions to ask - and to help remember what was said at the appointment. Ask if she might be in pain - and how you can help her discomfort. If there is anything they can do - any additional scans, etc to determine more, in the meantime. Full disclosure would be good :)

and, as you wait for answers, remember that there is hope. Some sixteen month olds still struggle with sleep issues. My twenty month old is the picture of health - but does not sleep through the night. She has to be completely and fully rested, on a schedule, before she even takes a decent nap. If she's off, and a little too tired, the nap is filled with unrest - and lasts less than a 1/2 hour. And walking, each of my children were over thirteen months - and certainly by sixteen were not yet running - were still exploring the floor :)

Hang in there, R.! Ask those questions, hold those babies, and know many of us will be thinking of you - and praying for a good outcome!

Hi-
Are you with a good clinic? Do you attend ECFC classes?
If you can, get her to Gillette Children's Hospital to see a pediatric neurologist specialist for a 2nd opinion.
Cysts can be benign and that means, nothing bad will happen. The concern right now for you is the location of it and if it is indeed pressing on some portion of her brain that controls motor movement, you might need to figure out a solution with the doctor to alieve her pain so she doesn't cry all the time and also help her walk.
Also, do you have family around that can help you?

I am in the health care profession and granted I don't know all the specific symptoms or details involving your child but I would seek a second opinion with anouther doctor - a pediatrician if possible. He/she would be able to direct you to a specialist if need be. Doctors need to have and open communication with you and involve you with all the details regarding your child. My prayers are with you. Good Luck A.

R.,
I am so sorry you are having to go through this! Just like so many others, I would say you need to get your questions answered. Schedule another appointment with the doctor and have all your qustions written down or even find a new doctor. I've found that sometimes the nurses at my doctor's office are willing to take a little more time with me than the doctor too. Whatever you need to do- the not knowing has to be the worst! My thoughts and prayers are with you!

J.

You poor thing, I can't imagine what you must be going through. You need a second opinion. If you have insurance and are free to pick another Dr. do so. Talk to people and find a Dr. that will talk to you.
Two other things to try. www.drgreene.com allows to to 'talk' with what they call experts. They may be able to help you. Also on NPR (National Public Radio) there is a show ZORBA PASTER ON YOUR HEALTH. Here's the contact page, http://www.wpr.org/zorba/contact.htm . I've listened to the show and he seems to really listen to the issue and does a really good job of explaining things in a way that those of us who have never been to med. school can understand.

Good luck!

I would be worried also. Call your doctor's office and see if you can schedule a meeting. Tell them you want an complete explaination of what is going on. If the doctor won't talk to you or is condesending, see if you can talk to his nurse or a different doctor. Also go on line and look up information on her condition. Look for a support group so you can exchange information with other parents going through this. If none of this works get in touch with the nearest medical school and see if anyone there will talk to you. Don't let them make you feel stupid. I know that a lot of medical professionals act like they know more than the rest of us do. If you can take a friend or parent with you, take notes and have questions ready to ask. You can also call your local library and ask the libraian to help you look up information.
I am so sorry that you and your family are going through this. I truely hope that everything turns out okay.

What do you mean they won't tell you where it is or how big it is? That is your right to know as a parent of the minor. I would demand answers as well as copies of any and all tests performed to expedite a second opinion immediately. If you have concerns, trust your instincts as a mother and fight for your daughter's rights.

Keep us all posted...we're praying for you!

R., you have my upmost respect. Having a cyst in the brain, doesn't always mean the worst. The hardest part is having some information but not all. I am 33 years old, and found out i have a cyst in my brain only 2 years ago. It took about 6 months for me to get all the answers, I ended up going to the Mayo clinic. They have wonderful drs, but they were the ones who finally sat me down, and explained everthing. I encourage you to get the x-ray/MRI report and in it should be the exact type of cyst it is. The Mayo has a webpage for looking up medical words. There has been a lot of questions that the Drs can not answer especially about what all the cyst has affected. For me it may explain, the /hearing/speech/eye problems, also the extreme headaches. I hope for the best for you and the little ones. Have faith, and never leave the Drs office until you have all the answers, make them earn their money by telling you all they know.

This is very difficult news indeed R. ~ my heart goes out to you. I have a friend, age 13, who is working to survive brain cancer. He has a variable quality of life through this struggle and his parents are working so hard to keep their lives together as he deteriorates and then gets better. This has been going on for 1 1/2 years and still, day to day it's impossible to know what will happen.

I also know two children who have survived brain cancer and remain cancer-free and have full and happy lives.

The thing about little ones is they can bounce right out of a cancer scare after treatment. However, being at the beginning of it, you should look for lots of help ~ especially emotional support.

Go to www.braincandyproject.org

My friend Henry is working to help parents with children who have brain cancer. His son is the 13 year old I spoke of. Tell him I sent you. I hope this helps... ~ A.

You can request a copy of the MRI report from Medical Records. Go to Hospital or facility website and look for a release of information and fill it out. They should send back a copy within 7-10 days.

write back offlist or on and I'll help you sort out what it is saying.

As far as what could happen- you SHOULD share tese feelings and thought with Ped or specialist you saw. I presume a neuro. They will expedite testing and consultations for "overreeactive" and informed parents. USE it to your advantage for peace of mind. There are certain medical issue s that are scary but not serious...the time gives Docs abetter idea of what is root cause of cyst- tumor, fluid accumulation among other things. Pediatrician should direct you to a physical therapist to start supportive treatment for daughter. AND Early Intervention therapys services in your county!
I am not a medical professional - just experienced what you are - my son had a abnormal MRI at 1 year my daughter had smimilar issues to brother. She got MRI of head next day-normal....4 months later still not walking MRI of spine- normal. So her issues are muscular based.

K. in Minnepolis