Jan,

My grandson had no DPT or Tetanus shot.

It was about 6-8 months ago, that I looked into health insurance for me and was told that no insurance would accept me but ICHIP (the state program said since I had myotonia I could be insured this way. Very expensive. It was 25% of my husband's pay.)

Type of Myotonia: Thomsen's

Country: U.S.

Judy,

If you apply with a particular company and are denied coverage I would be glad to help you by talking to the underwriters and getting them information about the code changes. It is true that before last year no one would cover MC which is why I pushed so hard for our own code to separate us from myotonic muscular dystrophy.

It takes a little time for the changes to make it to the underwriting software but I think most companies' underwriters should have the new information and if not it is readily available.

Our state health program was outrageously expensive, too. I think just for myself it would have been $650 a month and that was with a very high deductible. I have some concerns about the new health care reform's impact on Medicare, but I will be very glad to see pre-existing conditions covered.

Jan

Type of Myotonia: Thomsen's MC

Country: US

Hi -

Let's see - I want to let you know that my insurance did not drop me when I was diagnosed with MC. I empathize with you regarding premiums - because I can no longer work, and our insurance policy has transitioned from employer-covered to COBRA and now to individual, our premiums have gone from almost nothing, to $900/month for the 2 of us, and now, starting next month, up to $1,421/month - which is 36% of my income now that I am on long term disability! Between that and our mortgage, life is scary!

BUT, because Jan worked so hard to effect the coding change, you really should be able to petition to be covered by insurance. I have found, both personally and professionally, that well-written and generously distributed letters (to senators, insurance commissioners, medical groups, and anyone else you can think of) can do wonders in getting results!

I know this is a fairly forward thing to say, but truly, your son should not be ignoring or denying symptoms just for the sake of fear of losing insurance. I believe that every state has Children's Medical Services (childood Medicaid), But I also don't believe an insurance company would drop him at this point in time - there have been a lot of really embarrassing exposes on cases where insurance companies have arbitrarily dropped individuals, or whole groups of people, only to rescind the decisions, because of public and medical outcries.

Best of luck - Lois

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA

I'm really confused about all the people on here having so much trouble getting health insurance. I was diagnosed with MC at the age of 18 months. I have been covered for health insurance my entire life without ever having a single problem with my coverage.My MC has always been on my records. Therefore, I have a hard time understanding why it's a problem for so many people now.

Type of Myotonia: Becker

Country: USA

Some insurances cover an infant from birth, and do not drop them for "pre-existing" conditions, a tactic which is relatively recent, citing that if a child is born with a congenital condition, it "pre-existed" their birth as an individual, and so therefore, they don't need to cover this new individual. But there are also some insurors who are more ethical and scrupulous (though their numbers have diminished greatly over the last 20 or 25 years), and if the parents have been covered since before the pregnancy, would not consider not covering the child.

I am so hopeful for health care reforms here - it is the right thing to do, and one of the most important changes will be doing away with the idea of "pre-existing conditions". Lois

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA

Thank you all for the information.

Yesterday, I went to see an orthodpedic pediatrician with my daughter-in-law and she could not find anything wrong with my grandson. The visit was just 10 minutes. Grant cried from the minute we walked into the room until we left. The doctor said to give it another month and if he still limps and falls then consult the pediatrician and talk about seeing neurologist.

Jan,

I called Athena Labs. The doctor needs to order the DNA test and they will only send the results to the doctor and the test would cost 655.00 for CLCN1 gene.

Type of Myotonia: Thomsen's

Country: U.S.

I hope this helps. My son is 17 years old and heading off to college soon. I wish he would of been diagnosed sooner then he was which was in middle school, 8th grade. While we took him to doctor after doctor and he had many stitches from falls, one being over 100 that caused speech impairment and siliva build up that stopped him from talking, we never gave up.

I have to agree with Jan on one major issue. I would never give medication to a young child. We have found that we don't have to give our son any still today. The key is proper diet, learning to eliminate any stress factors when you can and making sure no pesticides are put down anywhere near them. That includes and tree spraying, lawn care, etc. This might change as he gets older but for now, it works for us.

As for insurance, I have stayed away from any DNA testing as I don't trust our medical system or government when it comes to dropping those with Thomsen's Disease or any Myotonia. They still consider Myotonia Congentia as Muscular Dystrophy and insurance companies freak out.

Sadly, testing other then the DNA are very painful. I'm sorry my son had to go through it. We did not know about Myotonia and played the cards as they were dealt to us. Test after test. Misdiagnosis and misdiagnosis. Pain and more pain. From under age two, we knew something was wrong but it took another 10 years. No, honestly, can I say for 100% sure because he has not taken the DNA that he has Thomsen's Disease, no....but from everything we read, the doctor's test results concluded we know he does.

Again, I stress the most is not to medicate your grandchild. Research Jan's triggers...stay away from the things she recommends you do. It is working for us for the most part. I can't say he does not have bad days but the good ones outshine the bad probably 90 percent of the time.

Get use to filling a tub with nice warm water, that is a great stress reliever even when they are too young to know they are stressed.

Have a blessed holiday season whether it be Christmas, Chanukkah, etc.

Judy:

If your grandson is falling down and limping then he needs to be seen by a neurologist. It could very likely be myotonia, especially if it only happens when he gets up, but he could be having some type of seizure and it's important to rule that out whether or not he has myotonia.

Have you applied for health insurance recently?

If I understand correctly, the diagnosis code for MC used to be under myotonic muscular dystrophy, so a lot of people with MC had a hard time getting insurance. It has it's own classification now.

If you don't take medication for it and manage it with lifestyle, be sure to explicitly state that.

If your son or daughter in law has insurance through an employer then the insurance company might not be able to exclude your grandson from the policy.

Type of Myotonia: Becker

Medical insurance is tough to get, indeed. For a while they would not take my blood either. I have O- and am a universal and no fear of needles. I sat and spoke to a blood drive worker once about two years ago and they called a few people, and suddenly now I can donate blood. At first they also thought it was MD, not MC, or the two are the same.

Fortunately their was a rather curious med student on staff that looked it up and called the blood center. Sometimes it is just informational and suddenly it gets cleared up. The primary issue is people thinking it is MD.

I would bet if a Doctor called the insurance company for you or sent a letter explaining it, you might be able to get around the rather ambigous guidelines they sometimes use to categorize those they are going to deny.

On that note, life insurance is also hard to get. It took my parents until I was twelve to find a company to cover me. So, since I know that now, if anyone else can use this information, feel free.

I realize this is a Lutheran organization, however the point is... there are likely other private organizations like this one that might be able to help if you are not Lutheran. Sometimes it is just getting a new idea of where to look.

https://www.thrivent.com/

Type of Myotonia: Thomsens

Country: USA