Registered: 1507678325 Posts: 4
Reply with quote #1
Just needing to vent. I know big picture compared to so many of you things aren’t really so bad for us, but still … . I feel so guilty, as I know she’s suffering much more than I am. I’m just so sick of the frustration, anger, hurt, fear, desperation, misunderstandings, worry and sadness, so fed up and tired.
My now 10 year old went downhill quickly starting Sept 2016. Specialists originally thought AN, then PANS/PANDA though that didn’t quite fit. Was ultimately diagnosed Atypical presentation of acute onset ARFID, co-morbid with anxiety. She’s in the subtype who just don’t eat enough, though it came on suddenly, one day just refused to eat a single bite or drink a single mouthful - with no discovered reasons (previously had been a fine eater). So immediately we’re a bit stuck as no one is sure about the best way to treat, so it’s been pretty much just “refeed till she’s WR”. We were doing ok, reasonable gains then losses, but mostly slightly upwards until November 2017.
Over the last few months she’s suffered with nausea, tummy pain, vomiting (completely spontaneous, not the other kind) at all times of day, before, after and during meals and snacks, no pattern at all regardless of what she has or hasn’t eaten. GP ran tests, have seen a paediatric gastroenterologist, no answers. Well, actually the suggestion there was a low FODMAP diet... Um, don't really want to restrict her food intake any more than she already does herself, and if I do how will she put on weight? They gave her medication to fix the nausea and vomiting, which had side effects of, guess what, nausea and vomiting! What the heck? She ended up with oral thrush as a side effect, which put her further off eating for a month as her mouth hurt and everything tasted awful.
She really baulks at dairy, but will still have it, so I am managing to get smoothies and milk shakes into her, but only sometimes, not every time…
I just don’t know what we’re dealing with. Is it genuine pain, or is it avoidance? I know psychologically the brain can certainly cause genuine pain responses. Or is it something biological, or physical, or allergy/intolerance related, nothing to do with ED or anxiety? Or is it anxiety, is it ARFID/ED? Is hunger causing the nausea? Or constipation, or abdominal migraines? She’s hypermobile – that can cause digestive issues… it’s causing so much stress for the whole family, which of course you all know all about. I’m going round in circles trying to clear my head and work out how best to help her. I know there are no real answers, like I said just venting and clearing my head in a safe place…
Registered: 1396918777 Posts: 654
Reply with quote #2
Hi orchid , sending hugs and loads of sympathy your way! This illness stinks.
Have you looked into Kartini clinic. Might be worth giving them a call. https://www.kartiniclinic.com/blog/ Also two good threads for you to read their stories from the beginning are honey_badger and atdt31_US. Hang in there!
Registered: 1401538763 Posts: 209
Reply with quote #3
Having a child who struggles with nausea and vomiting and it took 16 years to get a complete picture of what was wrong with his digestion. And another who vomits when he eats dairy. You can make a milkshake with a nondairy milk and a non-dairy ice cream. We use almond milk, coconut ice cream, a tablespoon of coconut oil and protein powder. We also find that when the nausea is bad distraction helps. It can be as simple as watching a sand picture or a youtube video. We also found some luck with candies marketed for pregnant women queasy pops. Vent away. __________________ 18 year old boy (Gluten Free/Dairy Free 2005) IP - March/April 2014. ARFID. 2015 - Gastroparisis
Registered: 1396016102 Posts: 5,232
Reply with quote #4
Hi Orchid - Mamabear's d was really young when she fell ill, and then during refeeding she developed vomiting of the type you describe (well, not the OTHER type of vomiting, anyway). She found that feeding her d a bite every few minutes all day long was what helped her d keep the food down. No fun for anyone, I'm sure, but I wanted to mention it in case you think something like that might be worth a try.
Hang in there. xx -Torie __________________ " We are angels of hope, of healing, and of light. Darkness flees from us." -YP ♡
Registered: 1454901521 Posts: 650
Reply with quote #5
So sorry you had to find your way here . Feel free to vent as much as you want, we all understand! My d also used to feel nauseous and I gave her a glass of aloe vera juice a day until the nausea went away. It is strange that the onset happened so quickly (my first thought was PANS/PANDA, but if it has been ruled out, you are left with a real mystery). In addition to the previous posters' suggestions, I would add a calcium and zinc supplement. A zinc deficiency has been shown to lead to a loss of appetite. I remember when young, my tummy used to ache constantly and was mainly due to anxiety. How are things at her school? Some school are very strict and focused on academic achievement and could cause anxiety in a conscientious child. My school was big and overwhelming, so when I went to high school I chose a smaller school (and one not so focused on academia) and it made all the difference. Good luck and sending you plenty of hugs!!!! __________________ D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
Registered: 1496061527 Posts: 1,534
Reply with quote #6
please come here and feel free to vent, that is the right place for that. Nausea, tummy pain, vomiting, that all can be caused by anxiety (for example relied on food, but possibly relied on other things) or by ED. If every other physical cause is eliminated, it could be caused by the brain. We had a lot of problems with constipation, tummy pain, nausea, belching and bloating. I tried to feed her little portions with big calories (small footstep) every 4 hours. A warm pillow on the belly afterwards. A massage, something relaxing. The constipation, is now better after 14 months. She had a 4 months therapy with dried belching and bloating intestinal bacteria because her intestinal system was totally dead (like she had antibiotica three times or more). Maybe worth a try? Tina72
Registered: 1406089641 Posts: 435
Reply with quote #7
Originally Posted by
My now 10 year old went downhill quickly starting Sept 2016. Specialists originally thought AN, then PANS/PANDA though that didn’t quite fit. Was ultimately diagnosed Atypical presentation of acute onset ARFID, co-morbid with anxiety.
Welcome, and certainly understand the need for a place to vent. I have no experience with a sudden onset issue - sure seems like PANS/PANDA would be on the table of options. Curious to know what did not fit about it? Did they do a Cunningham Panel to cross it off the list? Did they treat for it at all? __________________ Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain. BMI steadily in the mid 12's for nearly her entire life. Born 2006. UPDATE: April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight. Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth. FWIW ED-D is a fraternal twin and we have no other kids.
Registered: 1438737617 Posts: 1,547
Reply with quote #8
Orchid have they done a gastric emptying study? If she is hypermobile, gastroparesis is a huge issue in people like that and the symptoms you are describing sound a lot like gastroparesis.
It is hard enough to get them to eat but then with unexplained vomiting-ugh. So sorry.
Registered: 1406089641 Posts: 435
Reply with quote #9
Also, fwiw I did the full elimination phase of the FODMAP diet due to then-undiagnosed issues --- an adult can certainly maintain and gain weight on it, but a restricting kid might have more challenges. If you ever need ideas on FODMAP let me know -- I ended up needing colon surgery and now follow it in a more voluntary mode but I know it pretty well and have now had several years of toying with it for myself. I think there is some merit to it helping a person with IBS and maybe even other colon issues, but it is arduous to do it correctly (eliminate all then reintroduce in specific ways to try to identify the offending item(s)) -- again, not something I would want to do with a restricting kid as a diagnostic tool, but it is manageable if you really end up knowing you need it.
Good luck. Ten is a hard age in terms of part kid/part tween demeanor -- compliant pleaser vs independent twit (at least in my house). I still think the sudden onset seems like it would be hard to settle on "atypical" ED -- wondering if you want to share what testing she has had. Many of us here have done the GI dance for a number of years. We are not doctors, however, so if you trust yours has been thorough and thought outside the box a bit, move forward with the ED diagnosis of course!! __________________ Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain. BMI steadily in the mid 12's for nearly her entire life. Born 2006. UPDATE: April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight. Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth. FWIW ED-D is a fraternal twin and we have no other kids.
Registered: 1209507043 Posts: 2,695
Reply with quote #10
Which country are you in? I assume not the UK and probably the US because PANDA as a diagnosis is not talked about in the UK. It helps to know the country so that you can be given the names of the specialists in childhood eating disorders/difficulties. I know someone with hypermobility and that digestive problems are a major issue and seem to be part of the picture. It would seem to fit with the vomiting - in which case it is a specialist in all the aspects of hypermobility who may be your best bet, rather than an enterologist. Someone must have expertise in this condition. I think the slow gastric emptying fits the picture, as mjkz suggests. I am so sorry - both for your child and the whole family. This is so distressing for all of you. __________________ Believe you can and you're halfway there. Theodore Roosevelt.
Registered: 1521041370 Posts: 2
Reply with quote #11
I read your post, and I have an idea how you must be feeling. My younger sister went through something similar, and couldn't eat much at all because of stomach pain. We were told the most important thing was to get her eating again, which we were able to do.
If you would like to chat with me about this, let me know when you will be here again, so I can be here at the same time. If you do not want to put that information in the forum, let me know and I will give you my email address so you can email that to me.
Registered: 1521119942 Posts: 150
Reply with quote #12
Did she have a vaccine lately?
The same thing happened with my 11 year old daughter 3 months after the menangitis vaccine. I think there is a connection.
Registered: 1507678325 Posts: 4
Reply with quote #13
Thank you all so very much for your support, comments and suggestions.
I don't have time for a longer reply, or individual replies, now, but I really appreciate all the ideas and thoughts. You've definitely given me a lot to think on and read up on. She hasn't had much testing done, so I guess I have a lot to look into and discuss with doctors. Thank you!