Internet Danger

There's a danger in researching your child's diagnoses on the internet. When Naomi was first diagnosed with Myoclonic Astatic (myoclonic meaning muscular and Astatic meaning she falls) I looked it up on the internet. Everytime I typed that in I'd get Lennox-Gastaut http://www.epilepsyfoundation.org/answerplace/Medical/seizures/syndromes/lennoxgastaut.cfm
When I really got sickly worried over it, I called and talked to the clinical nurse, and she made me feel instantly relieve. She said "OH!! NO NO NO NO NO!!! It's not Lennox-Gastaut! It's good to research but make sure you check what you've found with an informed person!" She was cheerful about it and made me feel, in a good way, like, you silly thing, relax! The next thing I constantly ran across was Doose Syndrome. http://www.epilepsyfoundation.org/infants/myoclonicepilepsy.html
Well, I started looking at this right before an appointment with Dr. T. So, I asked her about it and she said "It's not Doose, I actually worked with Dr. Doose, and Naomi has symptoms of a few syndromes but doesn't have any one syndrome" When your Dr. tells you she worked with someone who has a syndrome named for them, it makes you feel like you're in incredible hands!
So to wrap this up, it's good to be informed about your child's diagnoses, but it'd be good to set a time limit as to how long you'll let yourself get sucked into the internet looking up information. Don't get scared by what you find and if you do, call and talk to your neurologists office and get an informed opionion.

Hosptial #2 called

The PMU unit nurse called to set up an admission for 24 hr EEG then start the Ketogenic Diet!!! Starting in a couple weeks!!! Must take our own towels this time!! Not because the hospital won't give us towels, they'll give us all we want. They all feel like sandpaper though! Very thin sandpaper. I want soft and cushy! It's the one thing I'd wished I had on the last trip! Also for a long EEG make sure your kids got pajamas that are either 2 piece and the shirt buttons up the front or the one piece footed sleepers that zip all the way up. You don't want to have to lace all the EEG wires through the neck of their top.

Tips

If your child takes a sprinkle type medication and you have to fight them to take it, sprinkle it on jelly. I use Smuckers strawberry jelly in the squeeze bottle and just squeeze some onto a spoon then sprinkle the meds on. I have to hold my girl on my lap wait for her to get mad and open her mouth then sneak it in. The jelly just slides on down her throat whether she likes it or not. I've found other soft foods too runny and messy. The jelly does the trick every time, just don't use a huge glob.



If your insurance won't cover something like ours wouldn't cover Carnitor because it's a nutritional supplement, don't give up. Call your human resources and see who you have to write to change that. I called the human resources at my husbands job and they told me to write a letter and they'd present it to the main office which is states away, but that there was little chance they'd change anything. Well, I figured why bother with the locals. I looked up the phone number for the main office talked directly to the powers that be and and asked exactly who I needed to send the letter to. I sent it and they changed the policy. Instead of paying over $50 after insurance it only cost about $13! Don't give up! I sent them more info than they'd ever need but I wanted them to know, they pay for the drug that could destroy her liver, why won't they pay for the drug that works to protect it? They also reimbursed us for what we'd already spent.



In the USA, EVERY state has to offer a program to help families with medical costs. I'm not talking about Medicare/Medicaid. I'm talking about programs that are not based on income they're based on need. In Ohio that program in called Bureau for Children with Medical Handicaps or BCMH for short. It's available through the local health department. It works as a second insurance and pays 100% after your primary insurance. http://www.odh.state.oh.us/



Your child may qualify for special services check with the health department. In Ohio, if they're young enough check with Help Me Grow, they'll help your child get all the possible help they can!


You are your child's advocate, question EVERYTHING! Research enough to have an understanding of whats going on.


Ask your Dr. all the questions you can think of! If you see something on the Internet, don't immediately take it as truth. Get an educated opinion on what you've read.

If you owe the hospital anything, call and ask if they'll give you a discount if you pay it in full. I don't care if it's only $50. It won't hurt to call.

Check your statements thoroughly! Don't pay them any more than your insurance says you have to. They need to write the rest off! You may have to do a 3 way call between you, your insurance and the billing department. It's effective!

If you don't feel comfortable with your child's Dr. -CHANGE! -Easy enough! If you have to drive an extra distance to get to a Dr. it is well worth it! If you don't feel comfortable with the Dr. you won't feel comfortable with his/her treatment.

That's all I can think of for now. Some seem like common sense, but I can't believe what I hear some parents say! After we met with Hosp #1 and I decided I didn't like them, I felt like they'd think I was neglecting my daughter because they wouldn't know I DID get her help, just not there. I'm sure they don't even know we're gone!

Last but not least, always remember there's someone out there worse off than you are!