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**Disclaimer**

**I am not a medical professional and the information on this blog is not to be construed as medical advice of any kind. ALWAYS consult with your child's doctor before making any kind of changes to his/her treatment, feeding schedule, etc.**


FAQs

There are a lot of questions that we've been asked over the course of Raya's treatment for GI/feeding issues. Here's a few:


Q: What's wrong with her?
A: We wish we knew!! At this point, we know that reflux is a significant problem for her but that the chronic vomiting she suffers from is "not consistent with reflux symptoms" (per her GI doctor). Her biggest challenges are (in no particular order :) reflux, feeding/oral aversion, feeding tube dependency, and chronic vomiting. She has also been diagnosed with mild cerebral palsy and sensory processing disorder.
*Update 1-3-12: Her chronic vomiting has been resolved and we are now 6+ months puke-free (do you hear the heavenly chorus singing? :) Now our biggest challenges are teaching a strong-willed 2 year old to eat, being patient while our strong-willed 2 year old decides that she WANTS to eat, and continuing to work on her sensory issues and treating her reflux.


Q: Is there a difference between spitting up & vomiting?
A: YES YES YES!!! She's a pro at both. :) She has spit up since she was a newborn (like, day 1 of her life) and started vomiting shortly after that. When I say "vomit" (or puke) I'm talking about flu-like retching/gagging/vomiting, emptying her stomach completely, and usually a little dry heaving. This has been a daily occurrence for her since she was about 5 months old and before that it was every couple of days. It usually happens multiple times a day. At its peak, she was vomiting 7-8 times per day and on average it's 2-3 times a day. We still don't know why she has this problem.
*Update 6-14-11: After over a year of daily vomiting, we seem to have finally achieved a balance with her medications and she has almost completely stopped vomiting. Miracle of miracles! :) She has now gone as long as 3 weeks without vomiting.
*Update 1-3-12: Over 6 months puke-free and still feeling like it's a miracle! She does still spit up a couple times a week but we can handle that. :)

Q: Does she eat or drink anything by mouth?
A: No. Not a thing. :) She gets fed formula over several hours a day (it's been anywhere from 18-23.75 hours per day). We're trying to get her to eat solid food but she has no interest at all and trying to get her to eat becomes a huge stress to all of us so we're not pushing it too hard yet.
*Update 6-14-11: Although she still doesn't actually eat anything, she has gotten over a lot of her fears associated with having food in her mouth. She will now ask for bites of whatever we're eating, which she holds in her mouth for a couple minutes and then spits out. This is a far cry from gagging & vomiting whenever there was even a tiny crumb or drop of baby food in her mouth. She has also decided that water feels good in her mouth so she likes to get mouthfuls of water. Usually it squirts back out of her mouth but sometimes she swallows some.
*Update 1-3-12: Raya is still about 90% tube dependent. She eats at least a little bit of something almost every day now. The most calories she's ever eaten in one day was 260 but most days are somewhere between 100-150. She drinks a small amount of water most days but a lot of that still runs back out of her mouth unless she really WANTS to drink it. :) We realized that she does, in fact, have great oral motor skills in that she is capable of holding food in her mouth while swallowing water but not swallowing the food. Impressive. :)


Q: Why does she have a feeding tube?
A: She started with the NG (nasogastric) tube at 2 months old because she was eating just enough at a time to take the edge off of her hunger and not enough to grow. (Most likely due to her discomfort from reflux symptoms.) She was switched from breastmilk (which she liked) to formula (which she hated) and as a result, she had even less desire to drink all the calories she needed in order to grow. The NG tube was the only way we could get her medications in her reliably as well. She gradually became more dependent on the tube as her vomiting increased and her oral aversion got worse. (I can imagine that if the only way I ever tasted my food was on the way back up, I probably wouldn't want to eat either.)  
There also came a point when she was about 5 months old when we started to suspect that she was aspirating formula on the way down and aspirating when she was refluxing/vomiting. While we waited for a swallow study, it was unsafe to allow her to keep taking in liquids orally just in case she really was aspirating so we stopped feeding her any formula by mouth. In the month that she was NPO (nil per os=nothing by mouth), she completely lost any desire to allow anything into her mouth. When we did finally have a successful swallow study, it confirmed our suspicion that she was not swallowing safely.


Q: Why did you choose to get a G tube instead of staying with the NG tube?
A: This is going to be a very brief summary of our decision, but here it is. #1: I could not stand to bind her up in a towel, sit on her to keep her from squirming & kicking free and shove that NG tube in her nose ONE more time. It got THAT bad. We counted at least 62 times over a 6 month period that we (and by we, I mean I :) re-inserted her tube. #2: The longer she had the NG tube, the worse her oral aversion became. #3: The NG tubes we used lasted for 30 days at a time and because she was fed continuously for most of the day & night, the ports on her NG tubes would stretch. After a few days the port would get so loose that the cap wouldn't stay plugged if she wasn't hooked to the feeding pump. It was messy. #4: We felt like some of the vomiting was caused and/or aggravated by the fact that there was a tube down her throat & wondered if getting rid of it might help decrease the vomiting. #5: The longer we waited, the more evident it became that there wasn't going to be a quick resolution to her issues and we felt like although a G tube is surgical, it would get us a step closer to controlling her vomiting so we can move towards having an orally fed child.


Q: How long will she have the tube?
A: We don't know the answer to this either. The answer is that when she is eating 100% of her required calorie intake by mouth, taking an adequate amount of fluids by mouth, and taking all of her meds by mouth, we can get rid of the tube. Right now she takes in very little by mouth so we're anticipating that it's going to be a while. Months, maybe a year or 2 or more. Usually when people ask this question, I say that if she's off of the feeding tube by the time she goes to kindergarten, I'll be thrilled. It all depends on her and her willingness and ability to learn to eat. Right now, we're at peace with the feeding tube and we're following her lead.


Q: What CAN she eat?
A: When she first had to go off of breastmilk and switch to formula, her GI doctor put her on Enfamil Pregestimil 24 calorie/oz. She tolerated that okay for about a week and then all of her symptoms got worse again. At that point, she also tested positive for blood in her stool which was an indicator that she may have had allergies to something in the formula. Then she was then switched to Neocate Infant and has been on it ever since. Aside from formula, we try to feed her fruits and vegetables but so far she does not eat solid food. In October 2010 she was switched to Neocate Jr. and then in February 2011 she was switched to Peptamen Jr.
*Update 1-3-12: Once Raya went from a GJ tube back to a G tube, we were able to start exposing her to different foods. She seemed to have trouble with rice and dairy but the allergy tests were negative so we have allowed her to have rice but are still avoiding dairy. The foods she will eat fairly often are sour cream/plain Greek yogurt (her FAVORITE!), Wheat Thins, dry cereal (like Chex & Froot Loops but not Cheerios), sometimes peanut butter, marshmallows, small nibbles of tortilla & beans, french fries (but doesn't swallow them), and bites of some of the things we eat that she thinks are some kind of treat. :)

Q: What medications have you tried?
A: For a complete list of the medications we have tried with Raya, see the Medications page. :) Here's the summary:
Prevacid & Prilosec- GERD (reflux)
Reglan & EES- delayed gastric emptying/slow motility
Neurontin- visceral hyperalgesia/gut pain & hypersensitivity
Carafate- bleeding in the stomach/ulcer
Elavil- retching/dry heaving/vomiting
Periactin- appetite stimulant

6 comments:

  1. Raya's Mom,
    I just came across your blog googleing and wow it touched me, in more ways than you know, I guess the reason is to thank you for doing this blog so mothers like me know we are not alone,, we are going through the same thing my husband and I have 5 kids and currently we are in the hospital and being in tears all day and thinking I was all alone in this and just reading your blog made me feel like im not alone anymore,, my 3 year old my last baby is and has been going through the exact same thing sience she was 3 months, from the ng tube to the tpn fluids, to g tube and at 14 months the g-j tube the trip to columbus oh nch, several testings several sugeries now they are thinking if they cannot get her feed's on a reuglar feed schedule without her throwing up (currently she is on 22 stright hour feeds with 2 hours of pedlight she is on neo cate but they are changing it here tmw) and if they hit a wall they are concidering a transplant, but being away from the kids is VERY hard I compleatly understand she lived at childrens hosp until she was 8 months old then it was back home but frequent trips, then just when we thought we were out of the woods and doing better my husband got a job transfer and we moved states (im thinking it was a huge mistake) everything changed and her insurance was not willing to cover most of her supplies, I cannot work because she also has immune defency wich makes a hospital stay even harder to prevent her to catch anything elce to her precious body, so as we speak they are concidering doing a collen transplant so anyway I just wanted to put my 2 cents in and thank you so much for your blog just to know im not alone in this world makes a huge difference, again thank you,, keep up the good work and our prayers go to your lil angel,,
    Ginny

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  2. Ma'am, I don't know you nor will I ever, but my heart goes out to you, your daughter and your sons and your husband. Myself and my 2 brothers were both born pre-mature, and with my youngest brother almost not making it, I am frightened at the thought of having my own children someday. I happened upon this blog purely by chance, and am glad I got to read about your family's journey. I wish you all the best, and I know your daughter will grow to be a beautiful kind young woman. As much as you can trust the words of a stranger, I am genuine. Again my heart to you and your family.

    All the best,

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  3. I now notice you have 3 daughters, my sincerest apologies, its a little late where I am.

    ReplyDelete
  4. Hi,

    I just wanted to say I stumbled across this blog and had great joy and empathy whilst reading about the different adhesives you've tried. My son has unconfirmed mitochondrial disorder, had failure to thrive and low weight gain until his NG tube was placed when he was 9 months, he has had many days of long screams and cries of pain due to reflux (which even at 17 months old has still not been investigated despite me begging and pleading with his many doctors), has had developmental reverse (went from rolling easily and developing well to stopping completely) and developmental delay since 3 months of age and is now physically still stuck at 4-6 months old, has physiotherapy regularly, is almost entirely tube fed on paediasure plus, still has strong moro reflex, tonic neck reflex and also has hypotonia which mainly affects his upper body (probably not helping the reflux side of things either).
    I found it reassuring but also saddening to read your story and diagnosis. Having been ignored by professionals up until he was 5 1/2 months old, I was glad to finally have someone listen to me and reassure me that I was right about there being something wrong with my sweet boy. It is hell to go through the screams of pain and not have a solution to the problem. I am sorry for your pain but I am glad to know I am also not alone in this. I send many blessings to you and your family and I hope you have a real answer one day soon just like we hope for ourselves too!

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  5. I just found your blog and I just want to thank you for sharing your journey with me! We just started our tube feeding journey with our 2 month old and your blog has brought me lots of hope and comfort! Thank you!

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  6. Hi. thank you for informing us of the different types of tape out there. weve been using tender grips and they've been really rough on our baby's skin. i really appreciate your blog and time to compare the different options. my question is... what is the best way to remove the tapes? we've been told lotion and we've also been told to use alcohol. what have you found to be the most gentle and effective method?

    ReplyDelete

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