My Son

Hi K.,

Mi only advice is to post an other message with the title "Chiari's disease" rather than "my son", many people won't start reading.....hope you can find the answers you need and everything works well for both of you,

Mariana Abadie
www.MaiaCreations.ecrater.com
www.MyKidsFirst.com

I do not know anything about this illness, but it sounds like you have been reading up on it and educating yourself. More importantly though, it sounds like you are a very strong womam who has counted her blessings and you are blessed with a wonderful family. When I read stories like yours and realize that there are those who count their blessings I get emotional. I have a 20 month year old son and if I ever have to face what you are facing I just do not think I could handle it as well as you are. I have epilepsy and my Neuro keeps me in the dark all of the time - It's like they have no answers and your're just another patient with whom they get rich off of ( I am not saying that all Dr's. are bad, but some have terrible bed side manners). I will pray for you. I hope that you know Jesus as your personal Lord and Savior, he is the way...he will make sure you and your son have everything you need if you can and will trust him. You are a strong woman with a strong family. God Bless You !!!!!

Hi K., My niece age 12 just had surgery to treat her Chiari's. Apparently it can fun in families? So, if anybody else has head-aches etc...you might get checked. From what I have been able to gather and there is a lot of info out there, it's not really rare and a lot of people have it with out ever know. That is not to down play it at all, it can be very serious ( I don't know if you saw the Extreme Home Makeover show with the Mom and daughters that have it very bad). I just mean to say there is quite a range of systems and really the only treatment is pain meds if headaches and surgery. My niece's surger when great, she is feeling much better (she was on viacitian (sp) and had very serious debiliting head-aches). She is normal 12 year old now and is very happy about it. Her surgery was just after Thanksgiving and there are going on a cruise in a few weeks. So, if it get's worse of you don't feel like it's worth dealing with you can always explore the option of surgery (however it is brain surgery and has lot of risks just as any surgery in the brain would). So, weigh your options, monitor the issues at hand and I wish you all the luck in the world. So, sorry your son has to deal with this but early diagnosis is key so good job on that.

Hi K.,
I have a friend who was diagnosed with this about 6 or 7 years ago when she was in her late 30's. She had surgery, and despite all of her worries, she came through just fine and is living a very healthy and happy life. I don't know the typical outcome of this disease, but I do know that it is treatable.

My friend was very diligent in monitoring her illness and it paid off. So, while it may seem like your doctor is putting you off, it's good advice. Good luck to you and your family!

I do not know anything about the disease but perhaps you could try going to a neurologist at Children's Mercy Hospital to get a second opinion. I know that they are staffed with some of the best pediactric neurologists and I just feel a bit uncomfortable when you say that the doctor left you "hanging" without answers. Perhaps getting a second opinion would help you out.

I don't know anything about this disease, but I did just have a conversation with 2 moms who needed to see a neurologist for their children and said you need to go to St. Louis to see a qualified one. The Children's Hopital there was amazing. And talk to Children's Miracle Network in Springfield if you have ANY financial needs (gas, food hotels) for the trip there. You may need a referal from your pediatrician.
D.

No, I don't know anything about this, but I am so sorry to hear about this. I hope you get the answers that you need.

We all raise each child a bit different than we do the others.
The first one always gets the parents lessons, the second always gets away with a bit more and so on. Kind of like birthing. If you notice the difference clearly yourself, then you need to take steps to make sure the second child has a bit of the first child's at home education. Do your best to make sure you don't make obvious differences between the kids. They will use that on eachother when they become older. Usually like, Mom always liked YOU better than me or I didn't have to do that ha ha!
Parenting is a fine line that we often slip off of so I wish you the best in trying! Lessons in parenting aren't out there that all parents want so just follow the Faithful direction and they will ALWAYS LOVE YOU!
Grandy66

I'm sorry you are having that issue...the only advise I have is to get another opinion. I do not know anyone who is dealing with what you are. I just wanted to say good luck and I hope you figure it out soon.

Ok - you may possibly think a am crazy when I ask you this, but....have you seen a chiropractor? Up until one year ago if someone asked me that I would have laughed and said they were crazy for going to a chiropractor, but apparently I have been "brainwashed" my mine. It was 4 months after having my son and I started walking as though I was 9 months pregnant and tons of pain, after trying everything and spending lots of money I ended up going on a recommendation and saw immediate results. I am sure you are thinking what does this have to do with me or my son? Well, my doctor (Dr. Fink of Fink Chiropractic in Cottleville,MO) always encourages clients to bring in their kids. I would think - yeah no way are you doing anything to my son, I am one thing but he is another. My son ended up getting really bad exema - long story short- the pediatrician said it was something that some children have their whole life, the chiropractor fixed it within a week. Here's the thing/brainwashing - the chiropractor can fix a lot of things that are wrong with our bodies by putting our spines in alignment. Most of the off alignment that occurs is at birth because our heads/spines/brains all shift to get out. When they are c-section babies the doctors for the most part use the head as a handle to get the baby out. What they would tell you is that everything for your entire body runs through your spinal column. So when something is wrong or a problem, ie. exema - it is because the brain is probably sending a message for the skin to fix itself, but it can't get there because of some "kink" somewhere. I have actually experienced my pain, headaches, and allergies completely stop since I have been seeing the chiropractor. My sons exema was gone in a week and has never returned, nor has he had one ear infection, or any cold or allergy problems since he has been going. My husband doesn't snore anymore, unless there has been some drinking for the evening. I have listened to people in the office who have had thier psoriasis go away, bedwetting stop, and even helped women with fertility and increaseing milk flow for breastfeeding. Even if the chiropractor wasn't able to "fix" the Chiari's, for sure there would be some relief of pressure off of the spinal column. If this is something that you decide you may want to try I highly recommend my doctor - buy you can only get an appointment off of recommendation from their patients so respond and I will give you my full name and answer any other questions that you may have too. If Cottleville isn't really in your vicinity, I would even recommend calling the Fink Chiropractic and getting their recommendation for someone in your area. When it comes to your spine, or your sons spine, you want to make sure that you are in good hands and not some luny. Which after this email you may think I am, but I am only going off of personal experience. Hope all is well for you and your family.

K.

There was a family on Extreme Makeover Home Edtion with the same condition. If you go to the shows webite there made be a link. Good Luck!

Hello! I would be happy to share information with you about the Chiari malformation that concerns you. I am also a parent, however, my "baby" just turned 21 about 10 days ago. I also serve as the Information, Resource and Outreach Specialist for the Missouri Developmental Disabilities Resource Center, which is located at the Institute for Human Development at the University of Missouri-Kansas City. Here at the Resource Center we have over 500 files of information about different developmental disabilities and topics that relate to disability. I also have resources, including local resources, a parent mentor program, parent support groups, and a good "listening ear." Please feel free to find us online at www.moddrc.org or call ###-###-####, and we would be happy to assist; all of our information is provided free of charge. Feel free to contact the MODDRC; I would be happy to assist with information. Sincerely, J. HR