So Frustrated And Overwhelmed

[carissanboys]

I just don't know what to do or where to turn anymore and am hoping someone here can give me some inspiration to continue searching for answers for my son.

I have 3 boys and my youngest will be 4 next month. As an infant, he was a very fussy baby (he was mainly breastfed, but he did get a small amount of formula every day until he was about 4 months and then he received none). He would scream every night for a few hours and nothing I did made him happy. He did not have his first bowel movement (meconium) until he was a week old and from that point on, he only had a BM once a week (and it was always very smelly - no sweet smelling breastfed BM's for him!).

For as long as we can remember, my son would go through phases of being a fairly happy baby/child and then he'd switch to being very irritable. It seemed like each phase would last for a couple of weeks. We joke that he's like Jekyl and Hyde in his personality. When he's happy, he's sweet and so much fun. When he's cranky, he could try the patience of a saint.

When we started him on solids, he began going even longer between BM's so we ended up giving him prunes, which caused the opposite effect. Eventually we just stopped solids altogether and waited until he was closer to a year. He still had issues then, but not as bad.

My son did not walk until he was 16 months (I know this is still within the normal range, but sometimes I wonder if it was an indicator of something else).

Last November I went to our primary care provider because my son had not had a bowel movement in 5 days. Relatives had also mentioned that DS's tummy always looked distended. The doctor had an x-ray done which showed him to be "excessively full of gas and stool". She referred us to a pediatric gastroenterologist and had me start him on Miralax.

The Ped G.I. immediately suspected Hirshspurng's Disease since he had a delayed passing of his meconium. He had a barium enema which showed no sign of HD. They did blood tests on all sorts of things. 3 of the 4 tests they did for Celiacs were "negative" and the one that was positive they said is the last marker and can be positive for other reasons so they did not think he had Celiac. (his iron level was fine as was his thyroid) They also did a sweat test (negative) and recently had an anorectal monometry done to rule out HD, so they say he does not have it (the doctor wanted to do this procedure instead of a biopsy because it has less risks).

I recently was talking to a relative who has a master's in education and has worked with special needs children and she suggested I have him evaluated for Asperger's. My son has always been very senstiive to change of any kind, has difficulties with social situations, meltdowns, etc. We had a follow up with the Ped. G.I. today and when I mentioned my concern to her, she agreed we should have him evaluated and said she didn't want to continue with any testing until that was done (I believe her main reason is because if he had Asperger's, then they would proceed in a different manner). She wants me to attempt to pee potty train him again (he was trained for 4 months - including nighttime - until our first visit at the specialist's office but then just stopped going on the potty, although he's never been poop potty trained) to make sure there are no physical issues in that regard. She wants me to cut back on his Miralax to half a cup so that he has more formed stools and to just give him a clean out at home once a month to prevent any "back up". She doesn't want us to go back for 3 months.

My concern is that I initially thought he had Celiac as he has alot of of the symptoms. Tonight I am so frustrated that we have spent the last 5 months going to the doctors and having procedures done and we are no closer to figuring out what is wrong. I really feel like these doctors have no clue. I mentioned possibly trying a diet related treatment (cutting out gluten or dairy or both) but she didn't really respond to that. I just don't know what to do anymore. I do research and I end up feeling so overwhelmed.

Here are my sons main issues:

Before the Miralax and in-hospital clean out that he had in Dec. (the doctor said he'd never seen a child so full of stool - and this was with him actually having a BM every day at that point), DS would alternate between going many days without a BM and then he'd go a small amount 10-12 times in a day. When he wouldn't go for many days, it would be a hard ball and then loose.

He's a very picky eater and doesn't eat much.

His stomach has always been distended although he's quite thin (he's 50% for weight, but every time we go to the doctor's, he seems to have lost a bit of weight - he ususally has gained it back the next time, but then loses again, etc.).

He does have moments of energy bursts, but he does seem tired a lot and I will find him many times just laying on the floor sucking his thumb.

He has meltdowns that seem to come out of nowhere, especially when it involves going places.

The whole fiasco of dealing with insurance for all of these visits and having to jump through hoops to get my son the tests and appointments he needs is so draining. If it were leading to a diagnosis or at least some answers of some sort, it wouldn't seem so pointless. At the moment I'm thinking of starting a journal and documenting everything he eats, his BM's and his behavior and I'm also contemplating trying a gluten free diet. I just don't even know where to start.

Any advice would be so greatly appreciated at this point.

Thank you.

[gfpaperdoll]

I would just start with a gluten free, dairy free and soy free diet. You do not need a test or a doctors permission to just feed your son some veggies, baked chicken, baked sweet potatoes, fruits and some nuts...

very interesting how the doctor just ignored a question about changing the childs diet...

sorry, but you know if you put the wrong things down the kitchen pipes they will stop up & it will not smell nice either...

I think you & your excellent insurance coverage are in the medical loop of endless tests and more tests & referrals, this could go on for another couple of years - until, your son does develope something that they might recognize and be able to diagnose and prescribe some more medications...

[mftnchn]

I've just been reading about autism spectrum disorder (asperger's is in that spectrum) and lyme disease. There's some real similarities in your story and what I just read on this website.

Open Original Shared Link

There's a pdf article on that site as well about "bell's palsy of the gut" which talks about how lyme in the gut can mimic celiac disease among many other things.

I do agree about trying the diet. Many children with autism spectrum are benefiting from the gluten-free diet.

I sure hope you find some answers.

[carissanboys]

I would just start with a gluten free, dairy free and soy free diet. You do not need a test or a doctors permission to just feed your son some veggies, baked chicken, baked sweet potatoes, fruits and some nuts...

The problem is that, as I stated above, my son is VERY picky. He loves fruit, but he does not eat meat, veggies (the one he has eaten on occassion is cukes) or nuts. His main protein sources are dairy (mainly yogurt) and peanut butter. This isn't a case of simply making a child eat (I've had a doctor tell me that all of my son's problems are basically because HE's in control and not me). My son would just choose not to eat. So before I take on cutting out gluten and/or other things, I need to figure out what foods he will eat and what foods we can find substitutes for.

Thank you for your reply!

[carissanboys]

I've just been reading about autism spectrum disorder (asperger's is in that spectrum) and lyme disease. There's some real similarities in your story and what I just read on this website.

Open Original Shared Link

There's a pdf article on that site as well about "bell's palsy of the gut" which talks about how lyme in the gut can mimic celiac disease among many other things.

I do agree about trying the diet. Many children with autism spectrum are benefiting from the gluten-free diet.

I sure hope you find some answers.

Thank you for that. I'll defiintely read up on it.

I didn't mention this before because I'm not sure that it relates to anything, but my husband is active duty navy and we were stationed in Australia for 3 years. That's where my son was born while we were living in a very remote town in the outback. We had decent medical care there, but I voiced my concerns many times and was always told he was fine.

A couple of other things that I'd forgotten to mention:

My son weighed 10 1/2 lbs at birth (I was diagnosed with Gestational Diabetes with his pregnancy, although I most likely had it with all of my boys since the lowest weight was 9 lbs 10 oz). At almost 4 he weighs 33 lbs.

DS started to develop fairly high fevers around the age of 7-9 months, with no obvious reason for the fevers. They ran some tests the first time, but couldn't find anything. He still will get a fever sometimes with no apparent reason.

They tested his iron levels around 9 months and they were low, but we figured it was because he was breastfed and wasn't eating any solids. The doctor wasn't concerned.

Just trying to give a broader picture in the hopes that someone might notice something that could give me a direction to look.

Thank you for allowing me to get all of this out. I just want my son to be happy and healthy.