My Tow Year Old Is Very Sick/ Fluid on Her Brain!

My son is almost three, being born with multiply health issues from kidneys,heart, half of vertabrea, tumor on back etc. Many, many things. For it is easy for me to say this now but you need to think positive and enjoy every moment with her and all your other kids. Do not let the child know that they are any different from the rest, kind of like a handicap. You do not want that. Last but not least pray, pray and pray some more. There is one person who knows what is going on with your child and what the outcome will be. Doctors are great but take educated guesses. I know that sounds really ugly of me, but think about what I am saying. This might not be the answer/s you were looking for but maybe it will help.

We are praying for you and your little sweetheart. It's hard to know what to expect before they find out exactly what it is. Your child could be very different from another child with the same thing, just based on what part of the brain it is in, how big, etc. One thing that might help is to write down your questions before you see a doctor. That way you won't forget anything. Please keep us updated if you can.

We had to deal with fluid on the brain with my son from 6 months till about 2.5 years old. Test after test, multiple CAT scans and MRI, Lots of worst case scenarios... It was a very rough time for my husband and I, and it didn't help that we didn't have any family near by for support. My best thing to say it take it day by day. Don't think about it too much. There is not much you can do other then bring her to the visits and scans that the doctor wants you to do. I just want to say that we were giving a lot of "we think", We think it hydrocephalus, we think their might be a tumer we just can't pin point it, we think their might be developmental delays if the fluid keeps increasing and we don't get rid of the pressure.... In the end as of now our son is soon to be three, he still has the fluid although it is not continuing to increase, nor is it going away...so we still don't really know what caused it or what the future holds. But he is happy healthy and we are enjoying every day with him!

K., many, many prayers out to you and your daughter during this time. I will continue to keep you in my prayers. Please post a follow up if/when you can.

Oh, K., I'm so sorry! No kid should have to be sick like this. Prayers your way!

I'm sorry you and your family are facing this. My son has leukemia and the local children's hospital we took him to for diagnosis and treatment had a social worker speak to us about various resources - caregiver support groups, sibling support groups, monetary support, insurance options. They also gave us a book on the topic that was compiled from the experiences of many other parents. It explained terminology, treatments, dealing with emotions, etc. It also had a resource section. I'd ask about those kinds of resources. Also ask for reputible websites to go to for inormation. I'll keep your family in my prayers.

I do not know what you are going through, but I am sorry you are having to go through this. My prayers are with you and your family:)

Kimberly, a good idea could be to ask in the hospital about parents associations or groups founded around the specific illness (once you find out what it is for sure), there you can find resources and more to get knowledgeable about the issue. I know your little one will give you the strenght to go thru each day and also remember to always have faith that she will be able to fight back. Cancer is not necessarilily a non-curable illness nowadays, so keep being strong. My prayers are with you and your family.

I'm so sorry that you and your child are going through this. Serious illness in a child is very emotionally and physically wearing on you as a parent. I am sending prayers for you. I have not dealt with this specifically, but I did have a daughter with other serious health issues, including heart problems. My advice would be to always push for the best care for your child. If you are not already connected with a children's hospital I would ask your doctor about that. They are wonderful and are set up to have all the specialists your child will need right there. Always listen carefully to what the doctors tell you, ask lots of questions, be involved in your child's care, and don't feel bad about pushing for things if you believe it is what she needs. Also, and this is the hard part, try to still put time into other family members so that those relationships do not suffer. It is hard, I have been through it. I especially relate to what you said about not being able to think about anything else. I felt like that all the time through our experience and I know it was probably hard on my husband who was trying to hold other things together as well. I am praying for you. There are also many online groups that are very specialized, you may be able to find one that specifically relates to her medical diagnosis.

I don't have any experience with this, but I have friends who have had very sick infants. They did as much research as they could, took lots of notes, asked lots of questions and took on the role of advocate for their child. God bless you, your baby and family as you face the hard days ahead. My prayers will be with you all. Blessings...