Anonymous
07/17/2016 14:58
Subject: Re:Feeling so blue...How to live with DD's chronic illness?
OP. Thanks again to everyone. If any of you have a great acupuncturist to recommend, please do post details. I would be willing to travel. When medicine fails, the alternative paths look appealing. School comes and goes. It is sometimes possible and sometimes not. I will repeat that our family issues are not imposed by any of our psychological states. They are limitations imposed by the physical and pathological nature of the condition. I won't use the term 'real' any more, because I get the point that psychological issues are 'real' too. Its just not our situation. I will look into a beach holiday for the family. It sounds like mourning and then acceptance and then dealing with it are where we all need to go.. I am just deep in mourning now. This isn't new, I think it is just hitting us that it may never go away. For the first few years, we kept hoping that things would resolve. Now it feels like it never will.
Anonymous
07/17/2016 14:09
Subject: Re:Feeling so blue...How to live with DD's chronic illness?
I can totally sympathize, and you are mourning the loss of your old life and the life you wanted...for yourself as well as your daughter. As someone who was diagnosed with severe GI issues in my early teens, I recommend keeping things as normal as possible for the other sibling. It is easy for your daughter to also start feeling guilty about the impact she is having on the family, and she will feel even more guilty if she thinks her condition is making you sad or preventing her sibling from doing things he/she wants to do.
I know how your DD feels about the embarrassment bc I felt that also and still haven't told many ppl about my diagnosis. That worked for me, but not others-all depends on your personality and support system.
Also, allow yourself to have some hope. My condition is chronic and will be lifelong, but I was able to go to college away from my parents, have a career, married and have kids. All things the dr said would be impossible when I was diagnosed, initially in the hospital and then home bound for months. Things will get better as you and your DD figure out how to manage the condition. It took me almost 10 years to figure out triggers and how to work with my body.
I know how your DD feels about the embarrassment bc I felt that also and still haven't told many ppl about my diagnosis. That worked for me, but not others-all depends on your personality and support system.
Also, allow yourself to have some hope. My condition is chronic and will be lifelong, but I was able to go to college away from my parents, have a career, married and have kids. All things the dr said would be impossible when I was diagnosed, initially in the hospital and then home bound for months. Things will get better as you and your DD figure out how to manage the condition. It took me almost 10 years to figure out triggers and how to work with my body.
Anonymous
07/17/2016 13:31
Subject: Feeling so blue...How to live with DD's chronic illness?
A PP here. There's been some great suggestions here. Do not forsake vacations. You can make them work. We have learned to be very creative about stuff because we are having to think outside the box all the time with these infections. You can do the same - it just takes practice and you are probably doing it already with the illness.
Definitely make/take time for yourself to get away from it all - I'm back to walking along the river/riding a bike as much as possible when I can get away - just little things can make a difference - like getting up earlier in the morning for private time. You just have to have a break. Thank God for internet groups - they have been so helpful for information and support - I just try to make sure I don't get bogged down with them.
I think most of us would agree, it is devastating and not having any kind of normal takes a huge toll. We have literally been googling medical emergencies to determine if we head to the ER for breathing issues. Ugh. I'm sure others here are in a similar position with situations changing minute to minute out of the blue.
Our DK's attitude has helped us a lot because DK says "I'm just not going to allow this to rule my life". DK is pulling us along - partly because DK probably doesn't realize the full extent of what a lifelong battle this will be and it likely will hold him back from some personal goals. Also we really do take the good days for all they are worth. I hope your DD does have some better days. It is SO hard to see our DKs suffering like they do.
Has your DD tried alternative therapies like acupuncture? We have found some that have made a difference with our situation. Again - thinking outside the box.
Good luck OP.
Definitely make/take time for yourself to get away from it all - I'm back to walking along the river/riding a bike as much as possible when I can get away - just little things can make a difference - like getting up earlier in the morning for private time. You just have to have a break. Thank God for internet groups - they have been so helpful for information and support - I just try to make sure I don't get bogged down with them.
I think most of us would agree, it is devastating and not having any kind of normal takes a huge toll. We have literally been googling medical emergencies to determine if we head to the ER for breathing issues. Ugh. I'm sure others here are in a similar position with situations changing minute to minute out of the blue.
Our DK's attitude has helped us a lot because DK says "I'm just not going to allow this to rule my life". DK is pulling us along - partly because DK probably doesn't realize the full extent of what a lifelong battle this will be and it likely will hold him back from some personal goals. Also we really do take the good days for all they are worth. I hope your DD does have some better days. It is SO hard to see our DKs suffering like they do.
Has your DD tried alternative therapies like acupuncture? We have found some that have made a difference with our situation. Again - thinking outside the box.
Good luck OP.
Anonymous
07/17/2016 12:22
Subject: Feeling so blue...How to live with DD's chronic illness?
My son had different potty issues (he had severe ASD, non-verbal but was potty trained somewhat) and I found an amazing place to vacation so we always had access to a potty. I refused to slide backwards because we had worked so hard.
There are beach houses in Atlantic Beach, NC. I used Blue Water Vacation Rentals. The houses are are two streets (Sea Dreams and Sandpiper Ct). The community pool is oceanfront and there is bathroom at the pool (not the nicest but works for emergencies). The neighborhood is only those 2 streets (maybe 20 houses) and has a playground.
As far as stopping for treats/eating out. My son is allergic to wheat and dairy.
We get pizza at &Pizza - gluten free crust. They have dairy free cheese but we eat pizza without cheese and its delicious. Because we order pizza without cheese, most places have gluten free crust now so we can order from tons of places.
Sorbet is awesome for dairy free dessert. Italian ice from Carmens, most frozen yogurt places have dairy free options now.
Not sure where you are located but Not Your Average Joes has a great gluten free menu. We also do Mexican restaurants for Chips & salsa.
I hope things get better for your DD! That must be do difficult! Best wishes to your entire family!
There are beach houses in Atlantic Beach, NC. I used Blue Water Vacation Rentals. The houses are are two streets (Sea Dreams and Sandpiper Ct). The community pool is oceanfront and there is bathroom at the pool (not the nicest but works for emergencies). The neighborhood is only those 2 streets (maybe 20 houses) and has a playground.
As far as stopping for treats/eating out. My son is allergic to wheat and dairy.
We get pizza at &Pizza - gluten free crust. They have dairy free cheese but we eat pizza without cheese and its delicious. Because we order pizza without cheese, most places have gluten free crust now so we can order from tons of places.
Sorbet is awesome for dairy free dessert. Italian ice from Carmens, most frozen yogurt places have dairy free options now.
Not sure where you are located but Not Your Average Joes has a great gluten free menu. We also do Mexican restaurants for Chips & salsa.
I hope things get better for your DD! That must be do difficult! Best wishes to your entire family!
Anonymous
07/17/2016 12:14
Subject: Re:Feeling so blue...How to live with DD's chronic illness?
OP - I would take time to reread the posts that have been shared as they are offering very speciific ideas. Question - it does seem that your daughter is able to manage things to go to school, is this correct? If so, could there be some sort of psychological impact of her condition being the center of "family life" when it is not the center of her "school life" dynamic that you and DH need to examine together with a professional.
a- There is no reason why you and DH can't go out on a regular basis by hiring a college student or nursing student from an area college to be there. AU has a sitter list, Marymount U in Arlington has a list called Bernie's list, plus there is Sitters.com that you could join to post your very specific needs.
b- You also need to be sure that you are getting out and doing on your own and DH,too, something you just choose to do. Exercise of some sort might be a very good options.
c- Younger DD should have some activities or chances for going out socially with friend of her own or you will soon have two in therapy. At the same time do provide fun options for the two girls to do things together, too.
d- Family vacations can happen but start off slowly. As suggested find a home or hotel to rent right on a body of water - Chesapeake Bay for one or near Annapolis or Baltimore and figure out the most direct route and shortest travel time during the day or evening. There is no reason why DD and you all can't go for a week - if not to a beach at first within an hour of DC. It might be best to even just go into the City to a reall nice hotel for a day or two as a surprise and plan a couple of activities both girls would enjoy or simply focus on staying at hotel and going out as one chooses. A rented home would be best where you could control her diet, family could go and do naturally and DD would still have direct access as needed.
It sound as if your entire family is paralyzed by DD's health condition and perhaps this has just become the "family home dynamics" that no one knows how to brake.
Overall has any thought been given to try a low dose anti-anxiety med with DD - obviously working with a team who has understanding of interaction with any meds for her physical condition. Again if DD with planning can operate fine at school, then something is off on the home/family scene, BUT it should be hopeful that with some work things could be figured out at home, too. If you reach a point of impasse, perhaps a new specialist team to look over all records to get a second opinion might also be warranted.
Anonymous
07/17/2016 11:37
Subject: Re:Feeling so blue...How to live with DD's chronic illness?
OP if it were cancer or some other illnesses, you might already be connected to one or more support groups. You need to be in touch with other families of children who are facing this. Could you hook into (or build) a network?
Anonymous
07/17/2016 11:34
Subject: Re:Feeling so blue...How to live with DD's chronic illness?
And yes, one of the things I am mourning is that we can't do our usual summer that we used to do. There is no way that this doesn't affect younger kid. (We simply can't go.) Of course it also affects DD, who has the chronic condition. It just stinks. I know thinking about fairness is pointless. Things happen, and then we have to go forward from there. FWIW, I know I said I was depressed in my first email but at least clinically, I am not. I have a therapist and have been evaluated thoroughly. Like DD's anxiety about social situations with her chronic and horrible condition, the psychiatrist told me the equivalent of "you have it tough, and you are appropriately sad about it." I don't write this to dismiss anyone's viewpoint but the knowledge may help keep the comments on target. Its a horrible situation. How can we live with it, the best possible way? That is the real question.. Therapists are fine but I think families who live with similar situations have real solutions, perhaps? When I talk to my therapist or when my DD talks to hers, we both come away with, "Person is great but actually has no clue what we live with on a day to day, hour to hour basis. No clue."
Anonymous
07/17/2016 11:28
Subject: Re:Feeling so blue...How to live with DD's chronic illness?
So grateful for the helpful responses.. To the person that asked: its not encopresis. But I appreciate the desire to put us in touch with specialists.
Anonymous
07/17/2016 10:54
Subject: Feeling so blue...How to live with DD's chronic illness?
OP, my sympathies. It is so tough and does change family dynamics as well as some of the dreams we had for our DKs aside from the daily struggles our DKs now live with.
We have a 14 yo who has been sick for several years and we finally figured out this past year the underlying infections causing the multiple symptoms. GI issues and sudden allergies were a part of them. It turns out these infections are at present thought to be impossible to eradicate so remission is the hope and it has forever changed our family and especially DK.
You don't mention your DK's diagnosis but if there are other symptoms arising too please research tick diseases to make sure they aren't a possible underlying cause.
We have a 14 yo who has been sick for several years and we finally figured out this past year the underlying infections causing the multiple symptoms. GI issues and sudden allergies were a part of them. It turns out these infections are at present thought to be impossible to eradicate so remission is the hope and it has forever changed our family and especially DK.
You don't mention your DK's diagnosis but if there are other symptoms arising too please research tick diseases to make sure they aren't a possible underlying cause.
Anonymous
07/17/2016 10:27
Subject: Re:Feeling so blue...How to live with DD's chronic illness?
Hi OP,
My daughter was 9 when she was diagnosed with a chronic disease. It's fairly serious. It definitely affects the whole family.
She is 19 now and all I can tell you is although it's super hard, eventually, the family will figure out how to live. Sometimes things will suck for your other children because of your ill child. Sometimes your family will be completely "normal". Your other kids will develop the understanding that being part of a family means that you support your family. They will be empathetic and understand selflessness.
My only suggestion is that the family be as open and honest as possible.
For instance, our family used to go on beach vacations every year and the ocean was a big part of our life. After my daughter got sick, she could no longer spend more than about 30 minutes a day in sunlight. So we had to make major life adjustments. I sat down with my boys that first summer and had a really honest discussion with them about how cool they were, how proud I was of my family supporting eachother, etc,
My boys have grown up with really big hearts. My son is now looking at colleges, and one thing he is looking at is trying to be close to home in case his sister needs him when she is sick. I'm torn: I want him to go far away and experience his own life, but at the same time I'm proud of the boys and the men they are becoming.
My daughter was 9 when she was diagnosed with a chronic disease. It's fairly serious. It definitely affects the whole family.
She is 19 now and all I can tell you is although it's super hard, eventually, the family will figure out how to live. Sometimes things will suck for your other children because of your ill child. Sometimes your family will be completely "normal". Your other kids will develop the understanding that being part of a family means that you support your family. They will be empathetic and understand selflessness.
My only suggestion is that the family be as open and honest as possible.
For instance, our family used to go on beach vacations every year and the ocean was a big part of our life. After my daughter got sick, she could no longer spend more than about 30 minutes a day in sunlight. So we had to make major life adjustments. I sat down with my boys that first summer and had a really honest discussion with them about how cool they were, how proud I was of my family supporting eachother, etc,
My boys have grown up with really big hearts. My son is now looking at colleges, and one thing he is looking at is trying to be close to home in case his sister needs him when she is sick. I'm torn: I want him to go far away and experience his own life, but at the same time I'm proud of the boys and the men they are becoming.
Anonymous
07/17/2016 09:10
Subject: Feeling so blue...How to live with DD's chronic illness?
Anonymous wrote:This sounds like encopresis, which can be caused by a number of underlying medical conditions (food allergies, Chron's, anatomical issues, etc) or can be behavioral. My 8-yr-old daughter has dealt with this since age 3. It was disruptive to the whole family just like yours until I understood what was going on and learned to manage it. We are still looking for just the right daily maintenance routine, but have come a long way. My daughter and her sister are able to have a real childhood now that I manage this condition.
Pediatricians generally don't know anything about this so move on to a specialist ASAP. Ped GI is the place to go, but many know only one treatment- Miralax- and that doesn't help many of these kids. They lose nerve function in the rectum and don't feel the urge to go until the last second (urgency) and if the poop is too soft they will have accidents.
It has been a long process for me but I've found the best strategy is to love her unconditionally and never stress about potty issues- make the potty issues a project we are working on together instead of me against her bowels. Then daily suppositories or enemas to keep things moving.
The best ped GI for enco in this region is Dr. Stephen Borowitz at UVA Children's Hospital in Charlottesville. Some other resources for you:
Dr. Fredric Daum- ped GI in NY who does telephone treatment- http://doctordaum.com
Dr. Steven Hodges- ped urologist- http://www.bedwettingandaccidents.com
Dr. Robert Collins- behavioral psychologist- http://www.encopresis.com
Dr. Mark Levitt- ped colorectal surgeon, NationwideChildren's Hospital in Columbus OH, residential program- http://www.nationwidechildrens.org/bowel-management-bootcamp
How interesting.
Is there any way to regain nerve function in the rectum?
Support group list serve for parents of enco kids around the world- very helpful!!! encopresis_kids@yahoogroups.com
Anonymous
07/17/2016 09:09
Subject: Feeling so blue...How to live with DD's chronic illness?
Anonymous wrote:This sounds like encopresis, which can be caused by a number of underlying medical conditions (food allergies, Chron's, anatomical issues, etc) or can be behavioral. My 8-yr-old daughter has dealt with this since age 3. It was disruptive to the whole family just like yours until I understood what was going on and learned to manage it. We are still looking for just the right daily maintenance routine, but have come a long way. My daughter and her sister are able to have a real childhood now that I manage this condition.
Pediatricians generally don't know anything about this so move on to a specialist ASAP. Ped GI is the place to go, but many know only one treatment- Miralax- and that doesn't help many of these kids. They lose nerve function in the rectum and don't feel the urge to go until the last second (urgency) and if the poop is too soft they will have accidents.
It has been a long process for me but I've found the best strategy is to love her unconditionally and never stress about potty issues- make the potty issues a project we are working on together instead of me against her bowels. Then daily suppositories or enemas to keep things moving.
The best ped GI for enco in this region is Dr. Stephen Borowitz at UVA Children's Hospital in Charlottesville. Some other resources for you:
Dr. Fredric Daum- ped GI in NY who does telephone treatment- http://doctordaum.com
Dr. Steven Hodges- ped urologist- http://www.bedwettingandaccidents.com
Dr. Robert Collins- behavioral psychologist- http://www.encopresis.com
Dr. Mark Levitt- ped colorectal surgeon, NationwideChildren's Hospital in Columbus OH, residential program- http://www.nationwidechildrens.org/bowel-management-bootcamp
How interesting.
Is there any way to regain nerve function in the rectum?
Support group list serve for parents of enco kids around the world- very helpful!!! encopresis_kids@yahoogroups.com
Anonymous
07/17/2016 09:08
Subject: Feeling so blue...How to live with DD's chronic illness?
This sounds like encopresis, which can be caused by a number of underlying medical conditions (food allergies, Chron's, anatomical issues, etc) or can be behavioral. My 8-yr-old daughter has dealt with this since age 3. It was disruptive to the whole family just like yours until I understood what was going on and learned to manage it. We are still looking for just the right daily maintenance routine, but have come a long way. My daughter and her sister are able to have a real childhood now that I manage this condition.
Pediatricians generally don't know anything about this so move on to a specialist ASAP. Ped GI is the place to go, but many know only one treatment- Miralax- and that doesn't help many of these kids. They lose nerve function in the rectum and don't feel the urge to go until the last second (urgency) and if the poop is too soft they will have accidents.
It has been a long process for me but I've found the best strategy is to love her unconditionally and never stress about potty issues- make the potty issues a project we are working on together instead of me against her bowels. Then daily suppositories or enemas to keep things moving.
The best ped GI for enco in this region is Dr. Stephen Borowitz at UVA Children's Hospital in Charlottesville. Some other resources for you:
Dr. Fredric Daum- ped GI in NY who does telephone treatment- http://doctordaum.com
Dr. Steven Hodges- ped urologist- http://www.bedwettingandaccidents.com
Dr. Robert Collins- behavioral psychologist- http://www.encopresis.com
Dr. Mark Levitt- ped colorectal surgeon, NationwideChildren's Hospital in Columbus OH, residential program- http://www.nationwidechildrens.org/bowel-management-bootcamp
Support group list serve for parents of enco kids around the world- very helpful!!! encopresis_kids@yahoogroups.com
Pediatricians generally don't know anything about this so move on to a specialist ASAP. Ped GI is the place to go, but many know only one treatment- Miralax- and that doesn't help many of these kids. They lose nerve function in the rectum and don't feel the urge to go until the last second (urgency) and if the poop is too soft they will have accidents.
It has been a long process for me but I've found the best strategy is to love her unconditionally and never stress about potty issues- make the potty issues a project we are working on together instead of me against her bowels. Then daily suppositories or enemas to keep things moving.
The best ped GI for enco in this region is Dr. Stephen Borowitz at UVA Children's Hospital in Charlottesville. Some other resources for you:
Dr. Fredric Daum- ped GI in NY who does telephone treatment- http://doctordaum.com
Dr. Steven Hodges- ped urologist- http://www.bedwettingandaccidents.com
Dr. Robert Collins- behavioral psychologist- http://www.encopresis.com
Dr. Mark Levitt- ped colorectal surgeon, NationwideChildren's Hospital in Columbus OH, residential program- http://www.nationwidechildrens.org/bowel-management-bootcamp
Support group list serve for parents of enco kids around the world- very helpful!!! encopresis_kids@yahoogroups.com
Anonymous
07/17/2016 08:35
Subject: Feeling so blue...How to live with DD's chronic illness?
For a vacation, what about renting a cabin somewhere with a great view and a pool or hottub? Your DD can relax there if she doesn't feel like joining you on activities.
Anonymous
07/17/2016 08:18
Subject: Feeling so blue...How to live with DD's chronic illness?
Treat your depression, OP.
Make an appointment with your GP next week, get some
Zoloft or similar, find a therapist.
Treat the depression, and you can more easily get perspective and figure this out.
Make an appointment with your GP next week, get some
Zoloft or similar, find a therapist.
Treat the depression, and you can more easily get perspective and figure this out.