How do you tell your kids?
 

I'm dealing with the stress, pain, and anxiety at the onset of my nerve issue increasing in symptoms. There are things I can't do, and things I should not do. My life is in need of some drastic changes to try and heal or at least get over this flair. I'm back in the process of seeing doctors again, tests are scheduled.

How do I tell my girls? What has been your experience? What worked best for you?
How do I tell them I'm not working, when I'm struggling myself wondering if I will ever be able to hold down a steady job. (I was recently fired due to my unreliability, because I ended up not being able to use my hands, which movement has since improved, but I have pain if I do any action repeatedly.)

My girls are 13 & 16, so they want to know everything, and then get really worried, and stressed themselves when they hear bad news. I could be honest and tell them what I do know, but right now that's not a lot of anything definitive.

Please share your experience.

I have four kids and I find that he truth is always best. If you don't tell them they actually think things are alot worse. I try and take a team approach. I am single and was in bed for almost 4 months with only teenagers to take care of everything. I found the more the new the better it is for everyone and as a family you can work things out. All of my kids have decided to take jobs to help ease the financial burden. The one time having 4 kids can really be helpful.

Best of luck, I know it is an ongoing struggle.

How Do You Tell Your Kids?
 

I'm not an expert but I agree with NormaW. My kids are 14 and 17 and it's best they understand what is happening so that they don't think I have cancer or am going to drop over dead on them. When they can see I am in pain and having difficulty getting around it's better not to leave them with their imagination running wild on what is happening.

LillyLee

I agree with the above posters, the more info the better, as kids have a tendency to imagine it is worse than it it and you do not want them to be afraid. Also, you will need their help. Mine 14-29, 5 of them, the 3 youngest at home still. I am pretty disabled so they have to help, although their father helps a lot.

I have not been following your symptoms, Abby, any chance of yours being a hereditary neuropathy? I passed this on to my eldest son, 28, and he has trouble walking and extreme ankle weakness. The possibility of passing this on to a beloved child kicks this whole issue up in intensity. I m very thankful our two youngest are adopted.

I was sick with several problems the whole time my son grew up. He is 33 now. He was helpful from age 2! Just getting me something to drink, etc. He has grown to be a very sweet person that is very helpful to his family, and new family, inlaws etc. Loves animals also, that is another thing I wanted him to grow up to have, love of pets. He did just fine. Life has ups and downs and they can learn that helping and loving each other is important. :)

Hi abbyrition
 

Tell your teens the truth, calmly and truthfully. They know most of it already. It is best coming from you, so they can respond. My children were 5 and 6 years old when I got an auto immune disease. They were told the truth as much as they could understand. Best thing I ever did, as I wound up leaving home to receive treatment. Saw them on the weekends. If they didn't know the truth, how would they have felt about what I had to do??? It worked out very well and drew us closer together. I wish you all the best. ginnie:hug::grouphug:

I got sick when my son was just 5 years old,
 

Those were really hard times but I tried to hold it together best I could at home. Cannot explain to a 5 year old about PN so I just blamed all my crappy days on my bad back. He totally understood that. He is 14 this year, and still doesn't know about my PN. The worst part Of my PN was the first few years 8 years on I am use to the mild dysfunction, pain, muscle spasms, ect.

So I still just blame crappy days on my bad back.

I too have been telling my kids (7&9) that it's basically a bad back, with some additional pain in my feet, legs, etc. I do actually try to talk to them about why I am now working from home mostly and have tough days, but honestly they don't actually seem too worked up about it. They are amazingly resilient, happy, self centered creatures, how hard should I try to explain this? I worry that perhaps its bothering them more than they let on...but on other hand, don't want to worry them more than necessary by pushing it on them

I was diagnosed by my primary care doc with idiopathic peripheral neuropathy of the large intestine. (though there have not been any tests done that confirm this, so I'm not confident) I struggled with pain, negative tests of all kinds, situational depression and anxiety, exploratory surgeries, and a whole slew of doctors that didn't care to listen to me. Finally, when my primary put me on Cymbalta I found some relief. I changed my diet to a vegetarian one and have been able to manage my flairs without meds for two years... Until new stuff popped up. I nev had the tingling or numbness so many on the board mentioned, until now. I took my youngest to see Wicked - the musical. It was wonderful, but the seat was tight. I had my legs crossed and arms resting on the arm rest. My legs started to fall asleep, so I had to keep changing positions. Then my arms started tingling from the arm rests. It became quite uncomfortable to sit through the show. The tingling became intermittent throughout the rest of the weekend, and when I went to work Monday it became painful. I use tweezers in a repetitive motion for detail work. I called out of work to let my hands rest. I only use the tweezers in my right hand, but both were tingling and painful to use. After a few days the tingling lessoned, but then my thumbs lost all function in both hands. I couldn't use them. I called and scheduled an appt with the neurologist. I have a nerve conduction survey & EMG scheduled to provide more answers. The use came back in my thumbs, I was fired, and now I'm just trying to keep my hands rested to not destroy the nerves any more than I have.
The girls know I don't go to work anymore, and they know I am having issues with my hands. (I will often have them wrapped in ace bandages, as the compression seems to help when the pain is bad.) I haven't given them any more info, as right now I just don't have it myself. On another thread someone mentioned that my newest symptoms sound like HNPP, I checked the info on that, and almost describes my new symptoms to a T. So, I will wait on the tests before I tell the girls anything else, or even get worried about them. HNPP is hereditary, and I am uncertain on my feelings of testing them if this is my diagnosis. Right now, I'm taking one day at a time. Concerned about any future employment prospects if my hands aren't reliable. Also, therer's the concern of pushing myself too far and doing permanent damage if I can try to gain employment again. I'm concerned the tests the neurologist is about to do will show negative, and I'll have no reason, or explanation for my issues, as has been my past history.
I'm sorry I didn't have an easy answer to your question, I'm just not that far along in the process with this new symptom. I assume that's also why I asked this question of this forum. Without a clear diagnosis yet, I am simply a jumble of symptoms, and fear. I don't want to transfer fear inadvertently to the girls in trying to explain something I just don't have the answers for.

Thank you all for your support and help. The girls do know a bit, as I do have to ask them to step up more than usual. They help with dinner, open my jars, drinks, and anything else that requires the slightest effort of the wrists/thumbs. They cut me slack, and are understanding if I need to take a nap, I think they might even enjoy the unsupervised time that allows.
We just haven't had a "real" talk about it. I'm afraid of not being able to answer their questions, and scaring them more by not having the answers.

The overwhelming advice is to be honest about it. I agree. I just don't know "how" right now... So any advice on the how part?

Thank you to everyone! You all are so wonderfully supportive.

It will be interesting to see how you do come out if you indeed have DNA blood testing for HNPP. HNPP has a deletion and CMT1A has a duplication. I provided the article concerning HNPP for you and it explains it well. I am not suggesting that you have HNPP - only DNA blood testing would tell you that. Please keep us informed.

Kitt
Charcot-Marie-Tooth (CMT)

You can have all the HNPP symptoms with CMT. My neurologist at Johns Hopkins was convinced that I would test positive for HNPP as my EMG showed pinched nerves at wrists and elbows. The test, which is only 85% accurate, was negative. I also have all the symptoms of an axonal hereditary neuropathy, which was the final diagnosis. In addition to my limbs falling asleep several times each day and night, I have loss of sensation to above the knee and visible muscle wasting and weakness. My arms and legs are affected and I have constant pain, both neuropathic and joint and muscle related, spasms, etc.
CMT can cause internal issues not usually asociated with neuropathy, which could explain the intestinal connection. Your tests should provide a lot more info. I hope that you have more answers soon and that yours is one of the treatable cases. Hereditary ones are not. If it is any consolation, quick onset often means it can improve.

HNPP and CMT
 

There are many types of CMT. 50 and counting as of a few years ago. DNA blood testing can tell you what type you may have if it is one of the types they can test for. Otherwise, the following is some information from the HNPP site which might be of help. There also is DNA blood testing for HNPP.

Here are some of the symptoms of HNPP.

http://www.hnpp.org/hnpp_symptoms.htm

More information showing the difference between CMT1A and HNPP.

http://www.hnpp.org/genetics.htm

Some more information.

http://www.hnpp.org/diagnosing.htm

On this site it is interesting how at first nerves do heal but then it just keeps going and with each episode they finally do not heal.

http://www.hnpp.org/progression.htm

Five major ways HNPP can look.

http://www.hnpp.org/varieties.htm

The whole site is very interesting. www.hnpp.org

The woman who wrote this was at one of my support group meetings for CMT. She has HNPP and explained it very well.

And as far as CMT, family history helps a lot.

Kitt
Charcot-Marie-Tooth (CMT)

How was your son diagnosed? Was there DNA blood testing? If it is CMT then he would have the same type as you even though symptoms vary greatly even within the same family.

We didn't pursue the rest of the Athena panel since neither of my neurologists thought there was much point, as regardless of the variant there is no treatment. My son presented with foot slapping and very weak ankles from childhood, whereas I was more clumsy and uncoordinated, unable to run or jump. Even with the same type, the symptoms and onset can vary, as you said. His feet and arches, at 28, are as high and contracted as mine at 51. He does not have pain yet, but I didn't either when I was younger, and later I blamed it on varicose veins, arthritis, and phlebitis until finally getting a diagnosis at 47. I did not mean to imply that he had a different type than I, of course, only that if Abby's does turn out to be hereditary talking to the children about it is more complicated.
My older daughter (29) does not appear to have it, and neither does my younger (26) year old son, but they are very sensitive about discussing it and do not want to consider the possibility that they may be affected. It is a very touchy issue for them. My daughter has a baby and wants a large family and does not want to think about passing anything like this on to them.
My family history was incomplete, but I do have a half sister with a severe case, childhood onset.

My son's case was confirmed in China, where he lives, through examination and family history, not blood testing, so we do not have the exact variant, only that it is axonal.

Thanks Kitt for the HNPP links. When you posted the one on the other post of mine, I read through the whole website. It sounds just like me right now, kinda scary even. If I do have HNPP or any hereditary PN I will need to do some research on how testing positive will affect mine and my girls ability to obtain health and life insurance in the future.

I asked my primary for a dna test 2 years ago. He said no "because they are very expensive and not covered under insurance". I went home and looked up the cost. I found one for $350.00 but they would not give the results to you directly, you had to get the results sent to a doctor to read them for you. I have spent way more than $350 on proceedures that didn't help, so I started hunting down a doctor that could read the results. All I found were doctors that dealt with cancer, and refused to see me as I was not part of their speciality. So I let it go, and just dealt with managing my PN... I may be a bit miffed if I get the DNA test now and it comes bqck positive with information that could have saved me agony, anxiety, and strife the last 2 years just to have a diagnosis... (i have also seen where the dna tests have gotten much cheaper right now.)

So all of your children know about the hereditary possibility, one is showing symptoms, but none have had the dna test to confirm either way? May I ask, if you know that is, Why none of them decided to test? I would like to think, I would let my kids choose if they wanted to be tested as long as they not showing any symptoms, but the not knowing might just drive me mad or paranoid.

Hi,

Athena Diagnostics pretty much has a patent on DNA blood testing for the types of CMT at least. And they are very expensive. They are pretty much the only ones who do the testing for the types of CMT. Insurance sometimes covers and other times it does not. You would have to check that out.

You are correct to be concerned about how testing might affect being able to get health insurance for your family in the future. You probably could get it but it would cost big bucks to have it. I don't believe they can deny you or put a waiver on it as they did before but again it would probably cost a lot of money. This has been true of other health conditions as well.

However, if you work for a large company, then you will get health insurance without any health questions. But if you have to get individual health insurance then it can be a huge problem. This is probably true for life insurance as well.

If in fact you do have HNPP or a type of CMT there is no cure/treatment at the present time for any of it. Lots of research is being done but there isn't anything at the present time. I chose not to be tested but family history, EMG/NCV testing (I really had nil for symptoms) and a good neurologist (an expert in CMT) told me. I never saw him as a patient but I told him what my EMG/NCV showed and about my family history at one of my support group meetings. However, I already knew as I can trace it way back in my ancestors. You can just deal with the symptoms as they come along. You can be young, old, or in-between before any symptoms might become evident. You may never have any evident symptoms but still can pass it on. Pretty much the same for HNPP. It is a personal choice after weighing all of the information. Personally, I would not get tested. If symptoms come along I just deal with it. That is what I have done. JMO. It is a personal choice.

I was wondering where you found a DNA blood test for $350.00 and was it for HNPP or CMT? Just curious.

I wish you well.

Kitt
Charcot-Marie-Tooth (CMT)

Well, my children are all adults, so it isn't that I am stopping them from testing. They do not feel that they need it. The one who has it doesn't care which variant it is since it makes no difference, the other two do not have symptoms and have probably escaped it. The two without symptoms do not want to discuss it at all, and prefer to ignore any possibility that they may develop it.

Also, it is important to realize that the tests do not cover all the variants, although this improves all the time, nor are they foolproof, carrying a 10-15% rate of inaccuracy. What this means is, if you test positive you have a very specific name for your disease. If you test negative you do not know that you don't have it. They all progress at unpredictable, but usually slow, rates, and none are treatable. I believe that by following the advice on this forum as to taking good care of yourself, exercising as tolerated, and eating healthfully, you can maximize your quality of life, but if it is CMT, you and your doctors have little control. I was released by my neurologists to my PCP for pain management, a not uncommon occurrence on this board. Doctors really do like to heal people and they would rather not deal with things that make them feel helpless.

I really hope that your tests reveal a more hopeful diagnosis!

Testing HNPP/CMT1A
 

There is another side to this. If you have to test for the whole panel of CMT types/subtypes that they can now test for, it is very expensive. However, if you test for HNPP and CMT1A it is less expensive. That can tell you if you have one or the other. CMT1A is one of the most common types/subtypes and HNPP is the opposite of CMT1A.

it was years ago, and things have changed. I found 23andme.com - but it wasn't for HNPP or CMT. At that stage, I had no diagnosis, the docs didn't know what to do with me next, and I was undergoing exploratory surgery as options to find out what was wrong. I also felt that I had to do the leg work for my primary care doc, as he didn't seem to care to investigate and put a name to my pain so I could fight it. I did not have the hands and feet issues I have now, it was only large intestine pain at the time. Things have changed pretty drastically for me in the last 2 years...

It's been 7 hard years undiagnosed for me, so I'm confident I would want to know... Even if it's just to know I can stop spending time and money trying to figure it out. I am curious about the working and insurance parts that you said. Over the past 3 years I have lost 3 jobs to my flairs. The first one I was at for 5 years in management, fairly stressful. They wouldn't approve my short term dissability becase the only proceedure I had was a colonoscopy during that time. (that doesn't even begin to cover my symptoms list... But was my only proceedure.) so I was let go. I could have fought it leagally, but that takes more time and energy than I had when I was that ill. It was a struggle just to get to doctor's appointments. So, I waited out my flair, blew through my savings, and found another job. I was there about 5 months. It started out full time, then down to part time to help me manage my symptoms, and doc appts, until I was scheduled only one assignment, and I was wearing myself out doing so. So I went to a less physically demanding job. I became a crafter for a small local business. A dream job. Low stress, low pay, but it was something. Until a flair. I moved to part time. And now with this new symptom of not being able to use my hands, particularly in a repeatitive motion - I was fired. (I would have had to quit anyway, because I simply couldn't do the work with my hands.) so now I'm back blowing through the rest of our savings, contemplating if I can ever use my hands again, or if I have done some serious damage. And that makes me wonder what job I can get that will let me work around the kids schedule, my doctor's schedules, and not be physically demanding, or require any use of my hands (because if I get full use back to normal, how can I take the risk of permanent damage, knowing (if it does turn out to be HNPP)?
What jobs are there out there like this? Let alone provide health insurance benefits?