If you are doing everything you know to do to nurture your child, and one of those things (feeding) is actually contributing to their pain/distress and illness. Living through so many months of not knowing what was wrong with your baby, of thinking it was surely something you were doing wrong, feeding him foods that he would later throw up, and that would always cause him so much pain is traumatic. Being overwhelmed with feelings of powerless and hopelessness. How can this not be anxiety provoking?
If your child has a syndrome that not many understand, and instead of being acknowledged as a syndrome of confusing symptoms it is dismissed because medicine has no answers....or worse, the parents are made to feel that it is something they are doing wrong and not something that medicine is missing, because it is easier for medicine – that functions on concrete- to be able to say the anxiety of the parents (mom) is more of the issue than the child’s actual symptoms of pain and discomfort. What affect would that have on you and your overall well being? How can this not be anxiety provoking?
FPIES is an anxiety provoking diagnosis. It is one of the things that make it most difficult from day to day.
The anxiety is fueled by so many things - it becomes a sort of PTSD kind of being. Post traumatic stress because of a pain filled baby that you can only watch and do nothing for while he cried and cried and then violently vomited the contents of his stomach, and many sleepless nights of worry and a baby in pain. Post traumatic stress from hospital stays where you were actually accused of causing this pain and distress, and poor nutritional state to this little beautiful boy -- when you were only doing everything in your human (and sometimes superhuman) strength to help him.
Food trials always bring this anxiety to the surface in me. I try to push it back down, I don't like to feel anxious and I don't like it to affect me...so I push back. Although I do find, no matter how hard I try, it is there- just lingering around. I have found ways to help with it. Blogging, support groups, learning from and connecting with other mom's going through the same things, caring people who help and provide hope, having our pediatrician follow his progress and developments with me,....It all comes down to the one thing that is best for my anxiety -- to be/feel empowered.
My anxiety has been my driving force. It is not dragging me down, it is driving me forward. I have found studying and researching everything related to my son's FPIES not only therapeutic, but empowering. I also find helping others to be therapeutic. I have been putting together information for an FPIES Resource page for families. While putting together this page, I was approached to join forces of an organization already established to accomplish this very thing. The foundation needs new mom's to "carry the torch" and I have agreed to help be one of those moms. I have had a drive to pull it altogether, to help more family's. To give resources, support and hope to family's facing this frustrating, anxiety provoking diagnosis. Awareness is educating. Education is empowering. Empowering is healing.
Watch for updates on The PIC Foundation!!
I hope you don’t mind but I popped on to your blog to see how is Sam was doing any better following his food trials and was sad to see that he doesn’t really seem to be. I am not sure if you saw the long post on the baby centre message board (posted 15/10 under food intolerances and digestion) I wrote to you regarding grains, fruits, and other foods – you didn’t comment back which makes me think either you didn’t see it or maybe you totally disagree with everything I said there. It just plays on to back of my mind that many of the symptons that you describe in Sam are so similar to those that Flurina was experiencing.
ReplyDeleteI checked the fructose content of plums and according to Monash University they have an excess fructose of 1.6g/100g. This would means for someone who has trouble absorbing fructose they would cause issues. I do wonder whether this could be part of the problem Sam is having with the plums. In addition as plums are a stone fruit they contain sorbitol and Sam may have a problem absorbing that. Flurina certainly has a problem with both fructose and sorbitol and would not be able to tolerate plums.
As I mentioned in my post, Flurina does really well on parsnips. Just to back it up Parsnips have free fructose of 0.4g / 100g, i.e. less than a quarter of plums. Because of your concerns that you have mentioned regarding Sam and fructose, I just wanted to share this information with you. Please let me know you have seen this and the post of baby centre, after that I can rest as I just feel so strongly that you need to know this information.
Simone
PTSD. . . It's so true! And so sad. And so real! You're right, there are only 2 things to do with the anxiety, let it win or kick it's butt!! I am so excited for your futurre with PIC!! And look, I fixed my name!!!!
ReplyDeleteSimone- I am replying both here and on BBC....Sorry I didn't get back to that post- I have not been on BBC as much, working on other things and getting behind on there!!
ReplyDeleteYes, I do completly, completly 100% agree with your posts/observations/connections about fructose intolerance....actually sugar intolerance in general....and I even know 100% that Sam lacks sufficient enzymes (by biopsy) to digest fruits. Plums were on my list as a "ok" fruit....I did kinda question it because the list doesn't seem to match my own issues fructose...as stone fruits aren't necessarily "safe" for me, neither are some berries. It is interesting you say rhubarb is ok as this is usually very hard (even cooked) on my digestion (even tho I love it). So, while I know fruits are a problem, it also comes down to seeing how each person can tolerate to a degree....so I wanted to start somewhere- which is why I chose plums. I peeled them and boiled them, and then pureed them. I think I made them the most tolerable possible and i knew it would have to be in tiny amounts but wanted to see if it was something I could mix with his millet as buckwheat is also on my list here for a high fructose food. I checked on that book on FODMAP and am ordering it- will utilize that information as well (for myself and Sam) as we move forward. The millet carb should actually help with the free fructose/sucrose in the plums (which was my ultimate goal).
With probiotics- it is often the inulin or the FOS in them that is a problem, or the wrong mix of probiotic....from what I can ascertain from the research (mixed with my own experience) so far. So, that is why I am going to try Kirkmans.
Parsnips....maybe I need to move to Australia or Switzerland (those are the places where I'm getting arrowroot, millet, etc from!) :) And the parsnips I excitedly picked up today were packaged in the produce section, and it said "packaged with a vegetable...blah,blah,blah....corn or soy probably- I put them back! Ugh!!
So, yes Simone....I read that post and have been absorbing my way through it. My e-mail is :lady1029@charter.net if you want to send me more of your experiences. I would LOVE to hear from you! Thanks!!!!
Oh Joy! Keep pushing back....you do a fantastic job of it and though it may not feel like it, you truly are winning!
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