Mother of 2, one with g-tube

by Melissa
(Ohio)

Hello. I am a mother of two children, one is 2 and a half and has a g-tube, the other is 6 months and struggles so much to eat. I always knew my two year old had some "sensitivies" as I called them, but just this week she was officially diagnosed with spd. I finally felt like a huge burden was lifted off of my chest because doctors call her an "ignigma".


She has major bowel/stomach issues as well as feeding issues, hense the g-tube. She also has other sensitivities and it is a roller coaster ride with brushing teeth, baths, going to bed, transitioning from outside to inside, car rides, and the list goes on. As I am furthering my education on this disorder, I finally feel a sense of hope....because I am reading and saying to myself "this is my daughter".

I am willing to be a support to any parent who is struggling with a picky eater. My two year old had an ng-tube for 7 months prior to us getting a g-tube, so I know the struggles. I tried with all of my heart to avoid surgery and was very passionate. I am now at my 3rd feeding clinic with her. My 6 month old takes at least a half hour to drink a 5oz bottle and we are up at night with her because that is when she drinks. I cannot even sit down to feed her...constantly walking the floors. I know all about texture issues and mouth sensitivities. I am available to anyone who needs support.

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Aug 26, 2013
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same EXACT story here
by: L

Hi,

I'm not sure when this post was originally posted. I have experienced the exact same thing as you described with my now 2 year old son. Literally, everything you described.

We have attended two feeding clinic - one at children's hosp & one private clinic in Denver.

Haven't made much progress other than I believe this is a sensory issue. My son has had a swallow study, slow emptying stomach study, endoscopy, etc. All tests came back "normal."

May 30, 2012
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nose too close to mouth
by: Anonymous

Thank you for your comment on your five year old when she said her nose is too close to her mouth. That is incredibly interesting to me. I will pay attention to my daughter more with smells. Melissa

May 29, 2012
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nose to close to mouth
by: Lisa NZ

I'm sorry to hear about the feeding problems you are both having with your kids, it is so stressful as a parent!

My daughter is 5 and has been recently diagnosed with SPD, while going through the process of getting a diagnosis, I thought for sure she would have oral sensory issues because she is super fussy and gags with most textures and eats only certain foods and not the usual things kids like. However her issues are mainly to do with smells (and visual and auditory but that doesn't affect eating). She had her first playmate the other day and the mother who had her said my daughter wouldn't eat anything there and then when asked why she said "my mouth is to close to my nose and food smells funny" What a relief for her to verbalize what it is that bothers her about food! From here we have had lots of talks about food smells etc.

Long story short... I just wanted to let you know from my SPD child's point of view seen she was able to verbalize it and how we were so busy focussing on textures we didn't think about the types of food she likes and there smells.

All the best with your children's eating.


May 01, 2012
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For Lyn
by: Anonymous

Hi Lyn, first of all I am sorry for your struggles right now. There is nothing worse as a mother than to not know exactly what is wrong with their child and feeding issues are so stressful since they occur all day long.
When you said your son was evaluated, was it by a feeding team? My first advise would be to get him evaluated by a feeding team which usually includes(speech therapist, occupational therapist, psychologist, nutritionist). Secondly, I do believe that teething things even beyond teething age is ok because your son still wants things to be in his mouth. Some children cannot even tolerate anything in their mouths at all, so that is a good sign (I think). Maybe if you could dunk his toys in something he is allowed to eat, he could at least get some tastes.
Also, food play is a good idea. Allow him just to have some fun with the food on the table or in a high chair, with no pressure. If he eats it, great, but if not he is experiencing the texture, smell, etc.

How is he meeting his nutrional needs? I do know of a hypoallergenic formula (Elecare) for children with severe stomach and allergy issues but it tastes awful. My daughter is on it, but it is through a g-tube so she does not taste it.
I do know that any positive experience with food is a good thing even if he does not take quantity, so I would still offer when you are able to. I hope I helped a little bit.
Melissa

May 01, 2012
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RE: eating problems
by: Lyn

Hello! I am a mother to a boy turning two this july. We had him evaluated and diagnosis is GDD (Autism not ruled out). His attention span is 10seconds max.He only drinks his gluten free-casein free(GFCF) milk.We have had feeding issues coz he doesn't eat rice. Only bananas and now not even that. I placed him on a GFCF diet. But since he hardly eats any solid what is the use. He mouths his toys even if past teething stage. Any advice you could give me will be appreciated.

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