Should My Child Have a Feeding Tube Put in? Help! Desperate!…

That was the title of the thread that this mom wrote on a reflux forum….

Federica said that as soon as she had time she wanted to write her story and post it on my blog. So I created this page for her. In the meantime, I will copy and paste some emails from her.

Here is what I first read from Federica. It is what she posted on an infant reflux site forum…..

I have been so depressed and crying for the past few days an need some advice. My son Matias is 2 yrs old, he has (had) Gerd and Protein allergies (dairy and eggs for sure). He has been diagnosed with FTT and Food Aversion since last February. We have been strugling to get him to eat forever. He is 27 months, 33 inches and 23.5 lbs. Evem though he is tiny, he is very active and developing fine in everyother aspect. He will not eat for himself, i pretty much bargain with him every meal but now i just had a new baby, and cannot spend 2 hour feeding sessions anymore. We have done testing for any organic issues, including blood tests, endoscopy and we havent found much to explain his refusal to eat. He is never hungry, he could go days without eating, will not try new things, and will only open his mouths for a very small selection of foods. I have two questions, can someone tell me what tests i should be doing before i decide to tube.  I am nervous that if we tube without doing all necessary testing, we’ll never get to the bottom of this. Also, has anybody been able to fix a food aversion without needing to tube, as you cam see i do not have any extra lbs to loose while doing therapy.
__________________

I sent her a message telling her that she might want to try the Digestive Health. Here are some of the replies I have gotten from Federica by email.

Aug 3 Martha,

Thank you so much for sharing this with us, like you said it might not work but just the idea that it might brought tears to my eyes. I just ordered a bottle and i will keep you posted. How much an how do you suggest i give it to my 27 month old and to my 1 month old? 

I would love if i could talk to the mom [Lorraine] that had the same issues i did, if there is anyway she wouldn’t mind if i email her it would be great. 

I have been so desperate and my 1 month old is in bad shape too so we’ll see. 

Thank you for sharing your story, i am sure it has helped so many and hopefully it will help me too. 

Aug 9  Hi Martha,

I just got them [Digestive Health] in the mail today, i would love to start using them right away but, since you are a bit unsure i am going to wait. I sent all the information to this new N. D. that we started taking my som to; she had recommended starting him on probiotics. When she gives us the ok, we will start. I will let you know any changes as soon as i see them. Thank you for the info.

Aug 18  Hi Martha,

I would love to borrow the [water] machine after Lorraine is done. I think it is a good thing to wait a bit so i can see some results with the probiotics alone before starting something new. If we see that she keeps it longer, them we can decide where to go from there. 

So we had our second appointment with the ND yesterday after i had just finished reading your article on GAPS and vaccines. [https://help4acidreflux.wordpress.com/digestive-problems-and-learning-disabilities/] I actually ordered the book! 

First of all, she was quite impressed with the Core Health Probiotics, she actually called them and ordered some herself. I think it is great because she sees many kids with GI issues and sensory issues as well. 

Then she mentioned getting Matias on the GAPS diet, (how funny is that, and i knew all about it) to restore his digestive system. She said to get him off gluten asap. It will be incredibly tricky as he barely eats anything at all and the few things that he does, are going to be hard to change, but i think it is worth the try. 

I will keep you posted on our progress with the diet. Its going to be tough  

Thank you so much and talk to you soon. 

Aug 31  Hi Martha,

We were at Hershey Medical yesterday for the day so was a bit busy. 

Matias is doing better. He gained 2 lbs this last month, so all the new tactics are working. He is doing good with the probiotics, he even likes the flavor, but I concerned about them having dairy as his butt is a bit red. I would hate to stop them on him so, I am hoping it is another new food. Do you know if they are dairy based?

I am so excited to try the alcaline water, specially on Max (baby). I had to stop the probiotics with him . I think once he is doing ok with the right medication, i will start over. 

Hope you have a great weekend and talk to you soon. 

Sept 14  Hi Martha,

I have been trying to email you all week. So much has happened that I wanted to tell you but you know how it goes. Anyway, do not worry about the water machine, no pressure, if Lorraine needs it longer, that is fine.

So a few weeks back Matias (my 2 year old) was doing a lot better, therapy, probiotic, appetite enhancer and ND seemed like a good combo and he was gaining weight (2 lbs in a month!!).

We had an appointment in Hershey Medical (feeding group). I had made so long ago, that even though we really didn’t seem to need it, I still decided to go. I didn’t think it would hurt. The doctor there is amazing and the clinic is ranked best 3 in the country.

While we were there, the Dr. Williams was extremely impressed with Matias. He thought we were way on our way to good feeding times. The only thing I mentioned was that he kept getting diaper rash an complained that his belly hurt once in a while (mostly due to eating more than usual, he is not used to feeling full). As all doctors, he assumed the worst and said that we might need to slow down on introducing all these new things (probiotics, new foods, larger amounts) and said to back track a month and take all new items out. More than anything, he was nervous about allergies or intolerances flaring up and making things bad again

So I thought, no big deal, we are doing so great; eating pizza by himself, barely refusing foods, trying new stuff… Its funny how quickly we forget bad times.

So, I took all the new foods out and the digestive health (don’t ask me why). Three days later, he starts refusing ALL foods, gagging and throwing up again, eating two bites of food and fighting through every meal. I panicked, we couldn’t loose all the weight again, and I am not sure why it is happening.

Then it clicked, its the probiotic, So I started again immediately, and like magic, a week later he is almost back on track. So all my efforts are working but the Digestive Health is the key to the puzzle. I cannot thank you enough for introducing them to us.

If this didn’t happen I would’ve never realized how valuable this product is. And the funny thing is that when I mentioned it to the therapist or his doctors, they do not quite get. I guess like you’ve said before there are so many lousy products out there that nobody believes.

Well, after all this rambling, i hope your family is doing better and you are relaxing a bit. Talk to you soon.

Thank you again

I thanked her for being willing to try the Digestive Health and alkaline water when so many people don’t think it will help. Here is her reply.

Sept 16 Martha,

I am the one that cant thank you enough. Is Matias completely cured because of DH? No!, he is still on Nexium (unfortunately), i still have to distract and negotiate every meal. But Martha, we are at 26lbs today , with far less refusal and he just feels less uncomfortable during meals, and its only been a few weeks! 

 Regular medicine has dine so little for me. You want to hear my magic formula: Digestive Health + Feeding Therapy + Natural Diet. 

You are doing a good job pf helping people, and if you help at least one family, you should be proud. 

When i mentioned to different people that Matias was throwing up again because i stopped the probiotic, they looked ate like I had a third eye. There is a lot of garbage out there, our kids need a good strength product and that is why a lot of moms do not understand. 

Lorraine has now ordered her own water machine and as soon as she gets it she will send mine back to me an I will send it to Federica to try.

You can read Lorraine’s story here. https://help4acidreflux.wordpress.com/lorraines-story/.

………………………………..

To learn more about how and why probiotics and enzymes could possibly help you or your child,  please read my Home Page.

To learn how to find a good quality probiotic and enzyme supplement, go to How to Choose the Right Probiotic/Enzyme Supplement.

 

Martha Koehn

marthakoehn83@gmail.com

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