basrplay
Registered: Feb 11, 2009
Posts: 620
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| | Sept 18, 2009 at 04:04 PM | Reply with quote | #1 |
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we still are not sure if dd has rumination syndrome or some other gastric motility issues or what is causing her involuntary vomiting after eating. So, we are heading for the big city for testing which will require another hospital stay (op 1 day and ip 2 days). It seems to fit when we look at all the symptoms, but I don't dare say its so until the tests. Here is some info for others who may be finding similar presentations.....
http://www.mayoclinic.org/rumination-syndrome/symptoms.html
(We are not going to mayo they just happen to have a good explanation on their website)....
So we will see. In the meantime she is getting the tube feeds at night since we could not let her continue to lose weight and get further into dangerous condition, as no other treatments for reflux/GERD or other were effective. This is a bit tiring and a process and I don't like the idea that this is what is keeping her well, while the real reason is still undetermined and at work on her system, but things could be worse. So I stick to the good news and that is: she is gaining a little each week and so we are out of that pattern of weight loss and into gains.
Drs all have said that some of this may resolve itself with weight gain, but we have not seen any significant improvement in the vomiting (yet). But we have only gained a few pounds and we have a few weeks before going for the tests so who knows what can happen in that time.....
hope all is going well for everyone with school starting....I am glad to read so much good news here lately with w/r and phase II and successes! It is so encouraging! Keep up the good work!
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AnnieK
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Registered: Feb 28, 2009
Posts: 848
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| | Sept 18, 2009 at 04:19 PM | Reply with quote | #2 |
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| Hurray for the weight gain! (by whatever means, it is a necessary and wonderful thing.)
And, yes, after reading the explanation you posted, rumination syndrome sounds very much like what you have described with your D's situation. She is very fortunate to have you and your H for parents. Best of luck in the "big city" diagnosis trip. |
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neverloseheart
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Registered: May 01, 2009
Posts: 1,129
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| | Sept 18, 2009 at 05:09 PM | Reply with quote | #3 |
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Hi Basr,
It's really good to hear your d is gaining weight! That's giving you time to sort everything out without worrying about her getting tinier and tinier! And it's so true that weight gain helps restore the mind so it's definitely something that will help her both physically and mentally.
You've got a lot of strength and you've done such a great job getting her turned around! I hope you have a lot of fun on your date with your h tonight. You deserve it!!! When this pit of hell starts receding you will wonder how you did it all but you will be so glad that you did!
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pamom
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Registered: March 05, 2009
Posts: 110
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| | Sept 18, 2009 at 06:57 PM | Reply with quote | #4 |
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I cannot believe your tenacity; it is astounding. May your next doctor have half the commitment to finding a solution as you have!
Keep us updated! We only dealt with this "unexplained" regurg for 8 months or so and I would have paid for ANY answer.
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basrplay
Registered: Feb 11, 2009
Posts: 620
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| | Oct 16, 2009 at 10:08 AM | Reply with quote | #5 |
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DD had the mandometer motility testing and they found that she had "stomach accomodation issue (this is the upper part of the stomach not stretching to accomodate the meals) and rumination (which is different than usual vomiting/reflux since it has no wretching or acid; it is involuntary and comes straight up immediately without effort or strain). These are both related to the anorexia/eating disorder. (The stomach basically stopped functioning properly with the early malnutrition last fall, and the rumination came later but is still related to and seen as a symptomatic behavior related to the E.D. While a physical GI disease or malfunction is not present, it is still very real and she does not simply do this on purpose.
The good news is that she does not have any physical impediment or GI problem with the functions between her stomach/intestines that would indicate surgery or disease/cancers or otherwise.
The treatment for this is both medication and therapy. While prognosis is good for recovery, it can take months to overcome, so we are in for a long haul.
She will start a new med which is called Cyproheptadine to relax the stomach muscle to help accomodate food, and to stimulate appetite. This was originally used as allergy medication but found these other uses for AN. One common side effect is sleepiness, so we will watch for that and understand that is part of this medication.
She will do "diaphramatic breathing" exercises after each meal. This is breathing not using chest but diaphragm and will help hold meals down. Idea is eventually she will be able to hold meals and gain weight with food and reduce, and later, not need the tube feeds at all.
She will also see therapist to work on cognitive behavior (her awareness and understanding of her body and this function and consciously fighting it).
I will be talking with her primary care physician to verify all of this and get her started.
We will be coaching her through exercises after each and every meal so we may need to bring her home for lunch or go to school to do so. Also she may need to miss school for appointments as necessary since she will need to go to therapist and be monitored closely by physician for drug effectiveness/interactions and weight gain/loss and vitals.
So we are in for a long haul, but it is good news we suppose that she does not need surgery or have cancer or anything like that.
Has anyone else here used this medication? Could you please share your experience?
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LauraCollinsUS
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Registered: July 31, 2007
Posts: 4,036
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| | Oct 16, 2009 at 12:10 PM | Reply with quote | #6 |
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Relieved for you that the solutions are non-invasive, and glad you have ruled things out and have a plan.
Congratulations on your patience, your perseverance, and your spirit!
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Maria
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Registered: July 31, 2007
Posts: 2,613
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| | Oct 16, 2009 at 12:37 PM | Reply with quote | #7 |
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Bars, relieved for you and astonished at the same time at learning yet one more potential complication of this wretched disease. I know that you still have quite a road ahead of you trying to retrain your d's brain but it is so good that you have a clear plan. |
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pamom
mentor
Registered: March 05, 2009
Posts: 110
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| | Oct 16, 2009 at 01:05 PM | Reply with quote | #8 |
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Basr,
I do not have experience with this drug, but crossing my fingers that it works! (There's always the placebo effect too!)
For us, I do believe that if we had caught this regurg AT THE BEGINNING, the restriction would not have gone so fast. What makes this a little tough is that while our kids are NOT truly able to stop this, it is related to the ED. Our ds reflux episdoes DID increase with anxiety, so who knows what mind/body stuff was also involved. It just faded away as her stomach sphincter gained its tone when the eating became more normalized. It was, however, one of the first signs that the disorder was seriously entrenched.
I am so impressed that you all have been able to put on any weight at all! Think how much better will your d feel about eating when the regurg isn't part of the experience! Please keep us updated.
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basrplay
Registered: Feb 11, 2009
Posts: 620
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| | Oct 19, 2009 at 10:35 AM | Reply with quote | #9 |
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thanks so much everyone for your support as always!
it IS so upsetting to think how much this disease has done to our dd and our family.... it has also made so many other health problems "come out" either by actually causing something due to malnourishment, triggering or coming out due to the malnourishment, or simply having so many tests done that we have had many things "found out" and diagnosed along the way that otherwise she may have just carried asymtomatically forever. It gets so confusing whether to just wish we never knew and went on our happy way....or to be happy we found out now and can treat these things..
...I KNOW the answer is to be glad we found these things, and the long term view is that she will be better/healthier/stronger for it, but it is sooooo hard to always think that way when you just want your kid back to normal, right now!!!
So, here we are, after all the hpylori, hiatal hernia, TB, depression, OCD, etc and it comes down to basically plain ol' ED.... These other things are/were there, but the real core problem is ED!
DD has started the cyproheptadine and so far no effect...but like other drugs I think he said it takes some time to really get into bloodstream/show effects. No real side effects yet but only on day 2.
Breathing exercises are somewhat useful, but it is difficult to do it right so we just need to keep working on it.
Thanks to all and I hope our experiences will help others keep their eyes open for these complications. I'll keep posting....
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Mamame
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Registered: Oct 30, 2008
Posts: 3,168
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| | Oct 19, 2009 at 11:30 AM | Reply with quote | #10 |
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I'm glad you have some answers and hope the new medicine will help your D.
I am sorry you are feeling weighed down by it all.
Maybe it's time for a massage for mom?
Hugs and a virtual back rub to you brave and tenacious mom.
M
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Colleen
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Registered: May 15, 2008
Posts: 1,611
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| | Oct 19, 2009 at 01:30 PM | Reply with quote | #11 |
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basr, you are the bravest, most tenacious mom!
I hope your d is gaining with the feeding tube...? Any improvement in her emotional health?
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BridgetAUS
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Registered: July 31, 2007
Posts: 1,067
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| | Oct 19, 2009 at 04:56 PM | Reply with quote | #12 |
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Hello basrplay - you are doing an extraordinary job here with your daughter. Our daughter spent five months of her initial refeeding with a feeding tube. It was scary but we moved past this stage eventually. I don't know the medication you mentioned but I hope it helps. As tough as it has been, you are making progress.
Bridget
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basrplay
Registered: Feb 11, 2009
Posts: 620
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| | Oct 20, 2009 at 09:29 AM | Reply with quote | #13 |
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Hi and thanks everyone...
Colleen, DD was gaining a little with the tube feeds...she had gained about 7 pounds from mid Aug to early Oct. But then we had the trip to hospital for testing and that set her back a pound or two since she could not eat for about a day and half. They did do a small tube feed while IP but she still lost a bit.... We have appt tomorrow so we will see if she gained it back or not.
I think we may need to tweak the rate so she gets a bit more until the med and breathing start to help....will be talking thru this with ped and nutrition folks....
She has a pretty good mood and is happy most of the time....is doing well in school. Compared to last fall/winter she is MUCH MUCH better!! She is on zoloft and that has helped a lot! Our understanding is that this new med (cyproheptadine) can effect the effectiveness of the Z so we will be watching that. It is starting to get cold/dark with winter and that always seems to effect her (and me and dh) quite a bit....so we will have to watch that, too. Oh so complicated......
But we are in many ways much better than last year, but still feel like we are kind of treading water not really swimming laps. Hope things will kick in soon and start to see some improvements.
Thanks again all of you here!
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basrplay
Registered: Feb 11, 2009
Posts: 620
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| | Nov 24, 2009 at 10:57 AM | Reply with quote | #14 |
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just a quick update re dd
first, the rumination syndrome: she continues to regurgitate after every meal/snack. Dr informed us that she has to go through at least two cycles of the cyproheptadine (3 wks on, 1 wk off), before he would even begin to discuss/assess its effectiveness. Also, the diaphramatic breathing is a very tough skill to master (even for adults with simple rumination and no ED), so she is struggling with this technique. So we will not be seeing any huge improvements right away in terms of her accomodation issues or appetite increase, etc. So that means not until after Christmas. This is so tough since it is difficult to watch her continue to struggle and give her all these meds and have to wait so long for potential change/improvement.
Second, good news: she is gaining weight despite this, primarily due to the nightly tube feedings...and what we do feed her is good nutritious foods so what does stay down is giving her the most that it can. She has gained from 70 lbs at low prior to surgery in August, to 83.4lbs last weeks check up! She does seem happier and healthier in many ways. While we are glad about this, it is kind of scary since it seems a bit "false"....like, what will happen when the tube feed stops.....I guess the hope is that with the weight gain (no matter how it is accomplished) that her brain will begin to heal and the ED will begin to recede/recover, and her body will begin to recover, so when it is time to cut back on the tube feed she will be able to gain/maintain with real food. It is just a long haul and scary to wonder when this will ever happen.
Third, bad news: she recovered ok from H1N1 (mild case) but had a recurring productive cough and so had that tested and found out last night she has staph infection causing the cough. So just started antibiotics for that...10days. So yet another med to put into the mix and into her. UGh, my poor baby.
Fourth good news: she is enjoying cooking and dog walking as her latest hobbies. She knows the rule: you make it, you eat it. And we are being served some pretty amazing dinners.
Fifth bad news: ED type thoughts about weight and body are still here. That fear that she is fat/huge is still there.
Sixth sad news: she is having troubles with bf. BF is leaving her out and being mean to her when around the other girls. Have not figured this one out yet. May talk to her mom about it just to find out if she knows whats up. dd is devestated that yet another friend is changing and leaving her again.
Sixth and a half: good news: DD is a persistent and tenacious and determined and strong kid underneath it all....went to Friday night dance despite the fact that bf and posse of little b*(*^es did not ask her to go. She showed up anyway, and led the show through the macarena and some other dances. SO THERE!! HAH!!!! I am so proud of her and (yet my heart breaks when she has friend troubles).
Anyway, just wanted to update. Overall, she is medically healthier than just two months ago, so we can be thankful for that!
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neverloseheart
Mentor
Registered: May 01, 2009
Posts: 1,129
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| | Nov 24, 2009 at 11:13 AM | Reply with quote | #15 |
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Thank you for the update. It's really good that you are putting the weight on. I hope you will see that getting her to goal weight and keeping her there will straighten out a lot of her thinking even if she doesn't eat the food herself right now. You are doing such a good job keeping everything together-even your list shows how organized you are with an attack on every problem!
I'm with you on the friend situation. My heart breaks every time my d says she is lonely and wants some good friends. To me she is an amazing strong girl who has been through hell and is coming back but she has a different perspective on life than most teens right now. I know it takes time but that's been one area that it is hard for me to help. |
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LV
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Registered: Oct 19, 2008
Posts: 954
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| | Nov 24, 2009 at 09:31 PM | Reply with quote | #16 |
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Hi Basr,
I'm glad her weight is improving. I remember when we were in that kind of nebulous place where we thought we would never get our daughter weight restored but we did eventually navigate to that and I know you will too. 
Sorry about the antibiotics and the friend awkwardness but I am so glad she went the to the dance. Yay! I saw your request for ED recovery oriented books and I don't have any great ones to recommend but if you're looking for other inspiring books I'm sure our daughter would be happy to give her a list of the ones she enjoyed---I think are girls are roughly a year apart so the ones she read last year might be good now. Hang in there!
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lydia
Moderator
Registered: Aug 04, 2007
Posts: 2,769
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| | Nov 24, 2009 at 11:46 PM | Reply with quote | #17 |
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Basr,
Thanks so much for bringing us up to speed. Your d's courage and determination, seem to come directly from you!
Sending hope, strength and courage to both of you!!!
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girl14AusNSW
Mentor
Registered: Aug 23, 2009
Posts: 1,708
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| | Nov 25, 2009 at 12:03 AM | Reply with quote | #18 |
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Basr
What a girl you are raising! she went to that dance anyway and had a great time, for her age that is remarkably brave and mature. It is tough now but what a tough little thing she is Friends will sort themselves out my d's bf dumped her and broke my girls heart but she has a new bf and she would do anything for my girl, so your girl will sort it and have even better friends down the track! She's cooking and gaining that's wonderful!
XX Lynda
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basrplay
Registered: Feb 11, 2009
Posts: 620
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| | Dec 03, 2009 at 11:01 AM | Reply with quote | #19 |
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thank you all for the responses and thoughts. I had taken a little break over the holidays but trying to read up all the posts now. Some really good discussions about independence and stages etc.....I have to take time to read them all carefully and learn from you all!
DD had appt yesterday and vitals all good and she is up another pound since the 20th. So that puts her at 84.6lbs, very close to where she was at the start of all of this a year ago. Of course her reaction is that 1) she is huge and 2) now that I have gained weight I don't have to keep eating that full yogurt or this cheese or whatever. This is what still scares me. We are gaining the weight but the disorder is still present and strong.
I don't call this w/r since she is a year older now and is not at the % she should be for her growth pattern (she was in around the 40th% pre ED) and of course healthier in many other ways (periods, muscle tone, etc). She also has not grown any taller during this past year (maybe 1/4 inch) and prior to she was still in her 3 to 2 inch per year age/pattern. So we still have a ways to go and it is really really tough on everyone....
I have to keep reminding myself and dh that she has gained 14 pounds since mid August....so yes, she probably does feel "huge", but in reality is still in a low % and not healthy weight for her. So we have to be positive and keep supporting her through.
She is just starting the 2nd round (3 wks on, 1 off) of the cyproheptadine so we will see how that may start to have an impact.
I will keep you all posted.
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basrplay
Registered: Feb 11, 2009
Posts: 620
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| | Dec 03, 2009 at 12:04 PM | Reply with quote | #20 |
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she is not on any extra zinc but will ask ped next visit....Now that her weight is coming on, I can begin to think about these other things like height, period, exercise, etc.......thanks
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