- Pregnancy
- Baby & Toddler
- Parents
- Getting Pregnant
- Baby Names
- Product Reviews
-
Registry
- Community
-
More
Want a personalized experience?
Download the free app
Special Needs
A very long introduction...
Hi ladies,
I have been lurking on this board for awhile now...and contemplating whether or not I should post here. But seeing as how I have nowhere else to turn, I am hoping it's ok for me to post on this board. You are all so kind, helpful and resourceful - and I have learned so much just from reading the posts here.
I am at my absolute wits end. I feel like I want to scream because no one can seem to figure out how to help my son. This has been going on for almost 3 years now....3 years of countless appointments, procedures, blood work, etc...and no answers.
Within a few days of his birth, I knew something was wrong with his digestive system. Admittedly, I obviously didn't know the medical terms - but my Mommy gut was telling me that there was some sort of GI issue. I bf'd him for 9 months and he would cry out after eating, and lift his legs up in sleep and cry. I took him to the pediatrician's office, multiple times, and then to the GI doctor, and then to the ER...and everyone shooed us along because my son was gaining weight. Reflux was ruled out then - but then a milk scan showed reflux episodes when my son was two.
Not only were there GI issues, but there were many days (then and now) where my son looks sickly. It's hard for me to even type that 
He looked/looks pale with dark circles under his eyes...I would mention this as well (over and over again) and they tested his iron level (normal) and suggested that I take him to an allergist. So I took him to three different ones and they would either throw medicine at us (different inhalers, etc) or send us on our way b/c my son wasn't the 'typical' allergy patient. He has had tons of allergy blood work done and all are normal - which is a relief.
My son has always had developmental delays, mainly: crawling, walking and speech. He has seen an OT, PT and SLP (through EI) for over 14 months now. They have told me that they have each hit a wall with him because of a missing medical piece which is hindering his ability to reach certain milestones - especially to talk. He can say some words, but there are no phrases/sentences being formed. They strongly believe (as my DH and I do, too) that there is a GI issue that has not been addressed which is making his core/truck very weak. My son's chest and shoulders look so underdeveloped, which make his head look big - and so many people comment on that. Which I hate. It breaks my heart because they laugh about it in front of my son.
All neurological tests have come back normal. Again - a relief.
So I took him to another Pediatric GI specialist...and then to another one. The Chief of GI is now my son's doctor. My son has had severe constipation issues since he was a baby - but I KNOW that is an effect of his digestive issues - and not his main GI issue. He has had many procedures which show that his 'bottom half' (for lack of a better term) is all normal...but that his poop is impacted 'high up' (again, for lack of a better term). They just keep telling me to give him more miralax, or senna, or prune juice...instead of figuring out WHY he gets so impacted high up.
Finally, the other day, I literally begged my son's GI doctor to take a stool sample from my son. He said he would - and that he'd test for pancreatic insufficiency - and he threw around words like fecal elastace and enzymes...which I need to google because I am unfamiliar with these terms.
Also, I took my son to a nutritionist last month and after taking a round of blood work from him, she told me that he has about 20 different food sensitivities - everything from meat to chicken to turkey to dairy to mustard to apples. She said that she believes my son has a very immature digestive system. I told my son's GI doctor all of this information and he didn't seem to take any of this seriously. My husband and I have completely changed my son's diet - he is basically on a vegan diet - and after 3 weeks, we have seen no changes.
I just want to help him. I want to help him feel better. I want ANSWERS. I will never stop being his advocate, and I will deal with anything that comes our way, but I just feel like we are getting nowhere. And that is why I'm posting here. I am so hopeful that someone on this board has been in my shoes and can provide some guidance to me - so I can help my son.
I am truly sorry for the length of this post. I really am.
Thank you for reading this and for any advice you can share.
"A mother is a person who, after seeing there are only four pieces of pie for five people, promptly announces she never did care for pie."
~ Tenneva Jordan
This discussion has been closed.
Re: A very long introduction...
first, welcome. it probably sounds weird to hear that but this really is a great bunch of people with good information. never be afraid to ask a question.
i do not have much experience with GI issues-although my son does have a g-tube. you may want to go over to facebook and check out the feeding tube awareness and mommies of miracles pages. again, lots of good resources and you will find a ton of people who have gone through GI stuff--and you will probably find someone who is in your area and can tell you about their experiences.
just something to throw out there...have you considered seeing a geneticist?
Yes, first thing first. Welcome to the boards, everyone seems very nice and helpful here. Sometimes we just need to know someone is listening and sending some positive energy to you! Hopefully you will feel that.
It definitely sounds gi to me. I had a lactose intolerant child and I have IBS those body movements sound just like the ones my daughter made while in pain. The sunken eyes and shadows, I have heard some nurses refer to allergy shiners, black eyes from allergies, with his food sensitivities it sounds like he is allergic or way too intolerant of something, but the development delays, makes me think something congenital or genetic or that is affecting his absorption of nutrients.
Have they ruled out things like crohns and hirschsprung? I think there are a couple of other disorders like those that can hit the gi system. I wish I knew more to help you but I hope they take things seriously and help you get to the root of this problem!
Have you read "what's eating your child" by Kelly Dorfman? She also has a website. she is a nutritionist outside of DC who likens herself to a " nutrition detective" Her book had a lot of great stories about how she helped parents figure out the gut problems their children were having.
To be fair,we mentioned her name to Nate's neuro and his face got all pickley and he said something to the effect that "she has no business prescribing the supplements she does" However, I am a firm believer that sometimes you have to think outside the box to get the answers you need.
I haven't taken my son to a Geneticist...honestly, I have never heard of one. He did have a panel of genetic testing done (by the Neurologist) and everything came back normal, which was great to hear.
Thank you for your suggestions!
They have ruled out hirschspung - but no one has mentioned crohns to me. The only way my son gets tested for anything, is be me asking for it...he really has no doctors in his corner
I appreciate your response - thanks
Thank you so much!
I have read that book - thanks for mentioning it. My son's diet was pretty healthy before we did the elimination diet (which is about to start its 4th week) and we have seen no changes. And I completely agree with you: thinking outside of the box is key to finding answers - especially when it comes to our kids.
Thank you all so very much for your responses. I am so grateful.
I realize that, in the big scheme of things, that I'm 'lucky' (so to speak) to be dealing with these issues - because my son is bright, happy, social and just a great kid. But at the end of the day, I can't help but feel so frustrated because we are coming up to 3 YEARS of having no answers to his GI/digestive/whatever it may be issues...and I just can't accept that. I will stop at nothing to help him.
Thank you all for your suggestions and guidance!
I feel your frustration. I don't have much to add, except that we are dealing with my DD's issue of not wanting to eat (any foods, purees, puffs, etc) and eating very little BM. I am also not getting a ton from my doctor's since she looks 'fine' and is gaining weight, but they all scratch their heads and wonder how she is gaining weight eating so little. I have not received a referral to any specialist, even though I keep asking if one would be appropriate (like, 'does she need to see an endocrinologist? feeding therapist?). Actually, that is the one that they finally have referred to, the feeding therapist, and we just started. But, I took her to the Ped GI on my own, and we have our second appt next week. I also think it is difficult, because your mommy gut is telling you there is more to the story, but the docs brush it off with every kid is different (and, they are, but if there is a nagging feeling in the pit of your stomach, you really want to be disproved by as many docs as possible!).
Hope you find the answers soon.
Sounds a lot like what I went through with my daughter. She went through a lot of testing and no one could figure out why she was having so many GI problems. She had a fecal elastase test and in now on enzymes because she has some pancreatic insufficiency.
We found out that she has Cystic Fibrosis. Has you LO been tested? My daughters newborn screening came back normal, because her mutations are rare. Our newborn screening only test for the 32 most common mutations and there are over 1900.
I know this sounds funny but does he taste salty when you lick him? That is a big indicator of CF. my daughter isn't too salty and her sweat test came back almost normal, but I pushed for genetics and after 7 long weeks the test came back positive.
I had drs telling me I was crazy, but I never gave up. Good luck.
First, Welcome!
I lurk more than post on this board but I can't help but notice the similarities in our stories. We are still testing at the moment as well. Hope we both gets some answers soon for our little men!