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Trying to find the right help for my 10 y.o.


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#1 Joni Vaat

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Posted 17 April 2015 - 03:01 AM

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Hello! I am an American, currently living with my Finnish husband and our family in Finland. Our 10 y.o. daughter has suffered all her life from internal anal sphincter achalasia (also referred to as ultrashort segment Hirschsprung's disease); the diagnosis and treatment plan has been made by a professor from the University of Helsinki/doctor (specialist) at the Children's Hospital in Helsinki, Finland. I mention this because it seems the diagnosis has been correct, and his treatment plan has kept her 'regular'. We finally found this doctor after a few years of several different doctors just advising to use laxatives, change laxatives, etc., but not knowing what is the root of the problem (encopresis, but never having had hard or large stools.) She has been taking 28 drops of the laxative laxoberon daily for several years; as well he has treated her with botox injections four times, which have temporarily helped her (so the laxoberon is effective, after the botox.)

 

But her new issue has been severe abdominal pain, beginning perhaps six months ago, and increasing to a level of pain which has been life-altering for her. The doctor did several basic blood/stool tests, but before knowing results (because he was quite sure we would find nothing abnormal from those) he said she should start to eat the low fodmap diet. She has been eating this way, to the best of our abilities (just looking at the food lists, what is and is not acceptable) for almost two months. And she has had a few 'good' days in this time; she has had a few 'somewhat better days'; but for the most part she still has much pain. She literally sits for hours on the toilet, because it feels like something will come and the pain keeps her sitting there. Eventually she does have a (rather explosive type) bowel movement. And then of course she feels better for a while. I have been homeschooling her (very unusual in Finland) because I was wondering at first if the stomach pain is from stress and anxiety from something in school. She has continued to homeschool because ... how can a child function in school with the severe pain on most days. 

 

I am looking for advice, suggestions, and/or anyone who may have an even somewhat similar situation. I worry about her long-term health, of course. I worry about her long-term mental health at this point, also, because I can see that this is starting to wear her down ... She does not like me discussing this with ANYONE (and I can understand this; I have discussed it too much in the past, as I am searching for some support in these issues.) She also LOVES sweets. She is a child, and has been through much in her short life. These days, the things which she tends to eat are gluton-free pasta, tuna, chicken, eggs, carrots, broccoli, kiwi-fruit, a gluton-free pita type bread, mayonnaise with the tuna sometimes, turkish yogurt occasionally (lactose-free and flavorless.) I have her taking a calcium, vitamin d, magnesium supplement every day, because she does not take in much dairy. We can see that onion is like poison to her ... maybe the mayonnaise, too? 

 

I'm sorry this is so long, but I thought detail helps understand her unique situation. I appreciate any and all advice and suggestions. Thank you!

 

 

 



#2 jaumeb

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Posted 17 April 2015 - 09:36 AM

I am in chronic pain and it is sad to read about this condition in a child. I am sorry that I have no short answer for you. I encourage you to keep participating and learning.

 

I read some books regarding diet, including "Breaking the vicious cycle" and "Digestive health with real food". They were not the final answer for me. Then I tried to include S. Boulardii. And one month ago I started with glutamine.

 

I bought some psyllium which I have not tried yet.


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#3 annie7

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Posted 17 April 2015 - 10:36 AM

Hi Joni

 

i am so sorry your daughter is suffering from this. it's so very difficult for her and difficult for you, as well, to have watch  her going through all this.  and at such a very young age, too. my heart goes out to both of you.

 

i'm sorry i really don't know very much about this disease except what i've read online.  it does sound like you've taken her to an excellent doctor--a specialist. has he mentioned surgery at all? of course, that is a very drastic step--a last resort.  hopefully you and your daughter can continue to manage this with her current treatment protocol.

 

i do hope you and her doctors can find a way to control her pain.  the low FODMAP idea is a good place to start although, yes, i can understand why following such a restrictive diet would be hard for a child, especially when she already has so much else going on.   and just keep experimenting with which foods bother her and which ones don't. keeping a food diary helps.  consulting a registered dietician or nutritionist might be very helpful as well.

 

i wish i had more suggestions for you.  if i think of anything more, i'll post it.  hopefully you'll get some more help and suggestions here on the board.

 

good luck with everything.  i do hope things get better for her.  take care.


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these are just my own thoughts. for expert medical advice please contact a health care professional.


#4 Joni Vaat

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Posted 18 April 2015 - 03:56 PM

Thank you, Jaumeb and Annie7, for your responses to my posting here. I really appreciate your encouraging words, and your suggestions! It's not easy to answer questions like, 'Mom, how long do I have to eat this way?' Well, one day at a time ....


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#5 jaumeb

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Posted 19 April 2015 - 04:04 AM

I have been dieting for six years. I plan to eat a healthy diet the rest of my life. I will never try icecream or chocolate again. For some people this may sound very tough. For me it is not.

 

For a kid, it can be more difficult to accept. Kids just imitate what they see. It could be easier for them if the whole family switches to a healthier diet.

 

There is a support group called pecanbread. It's mainly for parents of kids with digestive or behavioural problems. Those parents have lots of experience with diet.



#6 annie7

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Posted 19 April 2015 - 04:56 AM

Joni--you might want to try posting your question on another board that i read--the AGMD motility disorders support board (Inspire).  it's a very busy, supportive board with a lot of people on there with various motility disorders.  i've seen a few discussions on hirschsprung's..  and there's a special pediatric board as well.

 

pediatric board:

 

      http://www.inspire.c...pics/pediatric/

 

here's a link to the main board:

 

     http://www.inspire.c...md-gi-motility/


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these are just my own thoughts. for expert medical advice please contact a health care professional.


#7 Joni Vaat

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Posted 19 April 2015 - 12:31 PM

Thanks again Jaumeb, for your comments. We actually do eat quite healthy foods in our family. But with the fodmap diet (as you know) many healthy foods are also eliminated. For example, I must prepare her meats separately from the rest of the family, because onion and garlic are absolutely off limits. And although we do not eat chocolate or ice cream every day, of course we do eat them! :)

 

And Annie7, thank you so much for the links you provided. I have now registered to be able to participate in the inspire discussions, and will ask for advice from there. This was a very helpful tip!



#8 annie7

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Posted 19 April 2015 - 01:33 PM

Hi Joni

 

oh good--glad you're on the Inspire board now.  hopefully you'll find some information there that will help.

 

one thing about the fodmap diet--what i've  read is that it's suggested to follow the low fodmap diet strictly for approximately four weeks.  after that,  what you are  supposed to do is challenge each group--such as eat a tablespoon of honey for fructose. Wait a few days and then if nothing happens try another fructose food. and then go on to challenging another FODMAP group, food by food,  etc. keeping a food diary really helps.

that's what i've done. i eat a moderate FODMAP diet since i've found that only certain foods bother me. i can eat onions and garlic (not too much, but some) for example. so hopefully it will turn out that your daughter is only sensitive  to some high fodmap foods but not all of them. that way she can have a more nutritious and varied diet. 

 

another thing i've found is that sometimes it's a matter of quantity.  some people--myself included--find they can tolerate eating small to moderate  amounts of a high fodmap food but can't tolerate large quantities of it.


  • Joni Vaat likes this

these are just my own thoughts. for expert medical advice please contact a health care professional.






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