Managing Chronic Pain in 12 month old - Mothering Forums

Managing Chronic Pain in 12 month old

A.Jewell's Avatar A.Jewell (TS)
12:10 PM Liked: 0
#1 of 22
07-25-2011 | Posts: 13
Joined: Mar 2010

 

I’m a first-time poster, so please let me know if this should be placed elsewhere.

 

We feel like we’ve exhausted our options in finding out the root cause (and cure) for our 12-month-old sons condition.  He has been through a battery of tests, hospital stays, seen countless doctors from across the board and the only thread of hope that we’ve been given is “hopefully he’ll grow out of it”.  Sadly, he seems to be getting worse and all we can think of now is how to cope with and manage his chronic pain.  In a nutshell, after a few hours of laying down every night for his entire life he wakes in screaming pain—all night (it used to be during the day as well until about 4 months, similar to extreme colic).  As he’s gotten older and gained clarity from some of the tests we’ve narrowed it down to a general region, his lower GI tract.  The best way to describe it is similar to a Pseudo Obstruction, where his intestines seem to kink when he lays down and relaxes—therefore gas and stool builds up and he’s unable to pass anything, causing extreme pain.  Nothing seems to eliminate it once it starts; he gets some relief from getting upright, intestinal massage and nursing.  We are chronically sleep deprived, surviving on a series of short naps for the past year.  He is almost exclusively breast-fed since he has oral aversions and has rejected solid foods (he’s about 6 months developmentally delayed in that area).  We’ve seen some progress recently with his intake of solids though since he’s currently in feeding therapy.  The hypothesis there is that he knew his gut couldn’t handle solids.  Thankfully he has thrived on breast milk alone and my supply has kept up.

 

So, my question is have you heard of this condition or have suggestions on how to help him?  And, how does one even begin to manage this degree of pain, which may or may not go away, in such a young child? 

 

Here is more background info if you have time to read. 

 

His symptoms include: chronic constipation, abdominal pain upon lying down, extreme gas pains, bloating, food allergies, lymphoid hyperplasia, narrow rectum, eczema, anemia, slow blood clotting, GI yeast overgrowth, lack of good GI bacteria, frequent night-waking (sometimes 20 times per 12 hour period), need to eat small frequent meals, delayed acceptance of solid foods (trouble swallowing, high gag reflex, tongue movement restriction, oral aversions, wouldn’t accept bottles or pacifiers), one urinary tract infection and chronic sleep deprivation.

 

Treatments we’ve tried include: Acid reflux meds (the upper scope showed he has no esophageal inflammation), Nystatin for yeast, many types of homeopathic remedies, gripe water, coccyntal, Mylicon, probiotics, cranial sacral therapy, chiropractic adjustments, Tylenol, sleeping upright or on an incline, massage, melatonin (to help him sleep through the pain), fruit to counter constipation, blood transfusions (he almost lost all of his blood when the endoscopy biopsy sites wouldn’t clot), we practice attachment parenting, co-sleep, delay vax, he’s not circumcised, I eat a very “clean” diet (free of allergens and gassy foods) and he takes Iron, and multi-vitamins regularly.

 

He sees a Naturopathic Pediatrician but has also seen other ND’s, MD’s, GI Specialists, Hematologist/Oncologist (due to a suspected blood disorder, TBD), ER Doctors, a team of PICU Doctors, Chiropractor, Cranial Sacral Therapist, and Feeding Therapists.

 

Some of the tests he’s had done include: Biopsies for Hirschprung’s Disease, Celiac Disease (I am Celiac, but his came back negative, he’s had no gluten exposure yet), Meckel’s Scan, Barium Enema X-Ray, numerous upper & lower GI endoscopy scopes, stool tests, and countless blood tests.

 

We are desperate for answers and pushed to our physical limits daily, we feel hopeless and heart-broken for our son to know so much pain every day.  Thank you for reading and thanks in advance for any suggestions!


A.Jewell's Avatar A.Jewell (TS)
07:24 PM Liked: 0
#2 of 22
07-27-2011 | Posts: 13
Joined: Mar 2010

One idea I've had since writing this post is Acupuncture for pain management and possibly helping him into a deeper sleep so that he'll sleep through some of the pain.  Although, I've never heard of using it on such a young child, is that even possible?  Or effective?  Has anyone on here tried it for their child's issues (not necessarily for pain management, but any symptom really)?


LynnS6's Avatar LynnS6
08:08 PM Liked: 619
#3 of 22
07-27-2011 | Posts: 12,446
Joined: Mar 2005

I haven't tried acupuncture with my kids, but I think it would be a good thing to try. I'm sorry your docs can't figure out what is going on and that your son is in so much pain. Is it possible for you to pump some milk and leave it? I know that for my cousins who had a child with major sleep issues, every couple of months, one of them would rent a hotel room (or stay with a friend) so they could get 8+ hours of sleep. 


Ada_S's Avatar Ada_S
02:41 AM Liked: 0
#4 of 22
07-29-2011 | Posts: 5
Joined: Apr 2008

Hi

 

I'm a long time lurker, seldom poster. My two kids with a very similar condition are currently trying to get my attention :) I have a third, his gut works ;)

 

My girls have a number of issues, DD1 was born obviously in pain from the first moments, DD2 was showing signs by 12 hours. The girls are 1 and 3. We have also exhausted every GI doc, test and the rest looking for answers. We may have just hit the jackpot by luck, we saw a new GI doc (old one had NO CLUE) and his take is the following:

 

- long bowel, i.e. extra loops of colon. The girls are trying to push out stool and gas uphill and around bends. It hurts. 10 minutes into just about anything (eating, playing, resting) peristalsis starts. It goes all the way the GI tract.. until it hits the blockage caused by the extra loops. It HURTS. Chronic constipation with overflow is the result of the extra bowel. We are currently treating it with an osmotic laxative daily, loads of fresh fruit and veg, plenty of juice/water. I am also limiting nursing of my twelve month old, according to the GI doc, the lactose is fermenting in the long bowel (when I give her loads of frequent feeds- you know, the 25 times a day pain relieving ones ;)) and causing  alot of gas. I'm BFing her 5 times daily and night weaning her (this is actually not so bad...??!!) I bet your son was constipated even as a EBF'd baby- even though the stools were soft...? Loops upon loops of colon makes it difficult. I also bet your son jerks while sleeping, arching backwards, then wakes up and cries. He's trying to stretch out, away from the pain/make space, if he's anything like my girls :(

 

- dysmotility, you probably know this one :)

 

- hypermobility in the GI tract. Weird question: can you bend your thumb back to touch your wrist (or can your son's father)? The good folks of Westmead hospital (Sydney, Australia!) have noticed that there is a correlation between joint hypermobility and gut problems. My girls have this. They stretch- sphincters open more easily than they should (reflux), the colon and bowel is backed up with feces that can't get out - but instead of just getting too full and pushing down, the colon stretches out. (more pain)

 

- reflux. There is a percentage of the population who produce an enzyme from the liver which metabolizes proton pump inhibitors (omeprazole- losec, esomeprazole- nexium etc.) very quickly. Zantac is pretty useless to them too. If your son is one of them, trying some of the more heavy-duty reflux drugs may be necessary, it was for us. My girls are not inflamed in the oesophagus to any great degree, but changing meds helped sleep SO MUCH.

 

- cows milk protein/soy allergic colitis. I bet you've covered this one ad nauseam, it may or may not apply to you :) My youngest is dairy/soy free.

 

- Gluten has caused us some problems - the GI doc says it's not coeliac disease, but like plugging an already blocked pipe. A gluten free diet helped alot.

 

- KIds with long bowel look like they have multiple allergies/intolerances- my DD2 is also confirmed allergic to eggs/peanuts. So we manage that too :)

 

I have to go attend to the baby who is very sad for some reason (I ate soy yesterday, that's probably it). I'm not around much and haven't given you much in the way of pain management ideas- we babywear constantly, BF as necessary (within our limits) and cosleep all the time. I know how tired you are...! My three year old has a freakishly high pain/discomfort threshold, she just switches it off when she can. It's dreadful watching her suffer, though. The baby still reacts alot to the pain and both girls suffered dreadful separation anxiety with me. DD1 had no bond with her father until we solved some of the pain with the GF diet.

 

I will come back later :) Better attend to babies :)

 

xx

 

Steph.


FarmerBeth's Avatar FarmerBeth
06:58 AM Liked: 105
#5 of 22
07-29-2011 | Posts: 803
Joined: Mar 2011

Don't have lots of knowledge in this but my youngest did have a lot of severe stomach pain, projectile vomiting, etc.  I'm sure you have a lot more going on with your little one, but I would suggest seeing if there are any changes according to type of iron supplement.  My youngest's stomach problems ended up being tracked to the iron supplement.  He was unable to tolerate it, even through my breast milk, baby cereals, etc.  Also had (still has) a lot of allergies like your little one.  I'd suggest continuing to hold off on the gluten.  Even if he doesn't inherit Celiac's, he may have too immature a digestive system for it.  My son wasn't able to tolerate gluten before about 2.5 years, despite the Celiac's screening being negative.  The pediatrician ended up chalking it up to "digestive immaturity".


minkin03's Avatar minkin03
09:59 AM Liked: 15
#6 of 22
07-30-2011 | Posts: 330
Joined: May 2009

What about mitochondrial disease? It can cause digestive problems, anemia, abdominal pain, and constipation. 

 

I hope you find answers. (((HUGS)))


LionessMom's Avatar LionessMom
10:37 AM Liked: 48
#7 of 22
07-30-2011 | Posts: 3,610
Joined: Mar 2008

we have ehlers-danlos syndrom the hypermobility type. EDS covers all those symptoms. we also have fructose malabsorption which makes it worse. have you talked to a geneticist? they can check for eds or mitochondrial. a gi can give a fructose breath test. fm causes bacterial overgrowth in the small  intestines. my son and i have sibo. i also wouldnt give iron supps. they tend to cause constipation. i would use cast iron to cook with instead and lots of red meat or meat anyway. etc. chicken is great for sensitive digestions. people with eds also have mutliple allergies, food and environment, and intolerances. their guts are super sensitive and hypermobile. some people's guts even slip around inside and they need surgery to tighten the ligaments to keep the gut from twisting around when they move. it would be something to ask about.


A.Jewell's Avatar A.Jewell (TS)
09:56 PM Liked: 0
#8 of 22
07-30-2011 | Posts: 13
Joined: Mar 2010

Wow, finally some leads to go on!  Thank you all for your responses and support, I'm grateful to hear that we are not alone, but sad that you might have gone through similar things.  We will be seeing his doctor in the next week, so I will go armed with all of these ideas!

 

Steph -- Thank you so much for all of your information!  I found myself shaking my head "yes" to many of the things that you described; like severe constipation even though EBF, jerking/arching in sleep (he also moans and thrashes around), dismotility/slow gut, hypermobility (my genes), etc.  I'm impressed that you have survived having TWO of your children with these symptoms and the havoc it can bring day to day--makes me wonder if it's genetic?  I can't even fathom having another child right now, knowing we might go through the same thing...or maybe we should have one asap and just get the early painful years over with, lol!  I have a few questions for you if you have time...  Does your 3YO still have trouble at night?  What osmotic laxative do you use?  For long bowel (which sounds like it's very plausible), would that have shown up on his endoscopies or barium enema x-rays, or is it not something visible like that?  What GERD meds do you find helpful? We only tried Ranitidine.  It's helpful to hear about the frequent feeding, it sounds like although it soothes them in the short-term, it can create a problem digestively. My hands are a bit tied with that one, he relies on BF for about 95% of his nutrition since he won't accept solids (we're working on it, he's in feeding therapy due to developmental oral delays).  We also co-sleep which helps with comforting him, there is no way I could get up a million times to tend to him in another room!  I steer clear from dairy, but you made me have second thoughts about soy, I think it's in a lot of gluten-free things that I eat.  My instinct says not to give him gluten, soy or dairy until his symptoms go away--he seems to have a reaction to every single food we've tried.  His poor body is covered in eczema right now :-(  Anyway, thank you again for your insight and taking the time to reply!

 

FarmerBeth -- Thanks for the tip on the iron supplement (I wish we didn't have to use it at all, although he's had some severe bleeding episodes and is very anemic), do you have a brand that you've had success with?  Right now we use Integrative Therapeutics from his ND's office, but it definitely makes his stool hard, thus perpetuating the constipation.  I wish I could feed him good food sources of iron, that would be ideal

 

LionessMom -- Thanks for sharing about your family's conditions, they sound plausible in this case as well--especially since he's tested positive for "bad" bacteria overgrowth and not enough "good" in his stool tests.  The thought never crossed my mind to see a Geneticist but I will definitely pursue that now.  Is that primarily blood testing (other than for FM)?


Ada_S's Avatar Ada_S
04:50 AM Liked: 0
#9 of 22
07-31-2011 | Posts: 5
Joined: Apr 2008
Hi Jewell,

Two kids with these issues is barrels of fun, LOL, but your second one is SO much easier. Even though we only got our diagnosis weeks ago, we knew symptomatically what we were dealing with. Dd2 has far less pain, even though her bowel is apparently worse. It's definitely genetic!

I'm typing on te iPad with threevsleeping kids around me, so i'll come back with the details if you need them, but briefly:

- we use "osmolax", with 12 month DD I mix it into very dilute juice and offer as much clear fluids (as opposed to BM) as possible. Obviously as your son is still largely breastfed, BM is much more nutritious than juice and FAR less constipating than formula, so you probably don't want to fill him up with too much juice/water!! smile.gif FYI it's really common for kids with these issues to have feeding delays/dysphagia/aversions. DD2 would never tolerate being fed until recently, she needs to self feed, ALWAYS. I know you're dealing with considerably more complex issues, but just wanted to put that out there!
- my three year old spent several hours last night thrashing, jerking, screaming, crying greensad.gif we had a very bad night. Despite daily laxatives (and all the fiber I can put in her diet!!) she hasn't gone in a couple of days= pain! So... No, things are still bad, but we have only about 6 weeks of direct treatment under our belts.
- DDs endoscopies are structurally normal, abdo xrays show "a portion of transverse colon" which would not normally raise red flags. Her rectal biopsy is/was normal... Sigh!! The barium may show up something, but I think they would need to be looking for it specifically. (we haven't had one yet wink1.gif)
- ranitidine/Zantac gives us some coverage when things are good. losec/omeprazole, nexium/esomeprazole offer us very little coverage unless taken with zantac. Somac (can't remember the chemical name, sorry!!) has been our best, best, best coverage by miles. DD2 went from 12nightwakings/BFings per night down to 2-3, without my night weaning her. Our coverage for DD1 is also quite good. If your DS has the gene that metabolizes PPIs cry fast, another option is zontan. Definitely try changing reflux meds!! It takes several weeks to get any clear picture, but the right combo might make life much better for all of you!
- we also used motilium for DD1 temporarily to help with dysmotility issues.
- a very high proportion of people with cows' milk protein allergy are also allergic to soy. If I used to eat either, DD2 would break out in eczema, gut pain, diahorrea, gas etc. Soy is hidden in alot of GF stuff greensad.gif DD2 is far and away better if I am dairy/soy free! Gluten/dairy/soy free is a really hard diet, but I canwalk you through it if you need help smile.gif


Hope you're hanging in there! It's so very hard to have a baby in constant pain, especially when no answers are forthcoming greensad.gif if it helps any, DD1 has been suffering chronically since birth, but she's active, happy, bright and outgoing (and fiery, strong willed and stubborn - she had to be to survive). DD2 has had it much easier, but she has a lot of pain too- but since we can manage it much better with our experience from DD1, she's much happier.

I hope you get your happy baby soon!
hannahgrace's Avatar hannahgrace
08:58 PM Liked: 10
#10 of 22
07-31-2011 | Posts: 247
Joined: May 2004

cyproheptadine (Periactin) may help with his motility issues. Prevacid is much better than Zantac for reflux.


LionessMom's Avatar LionessMom
11:50 AM Liked: 48
#11 of 22
08-02-2011 | Posts: 3,610
Joined: Mar 2008


Quote:
Originally Posted by A.Jewell View Post

 

LionessMom -- Thanks for sharing about your family's conditions, they sound plausible in this case as well--especially since he's tested positive for "bad" bacteria overgrowth and not enough "good" in his stool tests.  The thought never crossed my mind to see a Geneticist but I will definitely pursue that now.  Is that primarily blood testing (other than for FM)?



 

type 3 is only diagnosed by clinical observation and family history. the other types have a genetic test available. we are suppposed to take gerd meds and laxatives but we prefer to treat with diet. DD1 had throwing up issues and thrashed at night too. if i avoid milk (but not cheese or yogurt) i have no heartburn. if i avoid sugar and fructose i have no diarrhea or constipation. if i get constipated it can distend my bowels and make it hard for them to work right. then they can hurt inside till they heal which takes forever. the fructose malabsorption test is a breath test. however, if your ds has eds he can have any number of other food intolerances. food intolerances are so common with eds that i dont know one single person who has eds who does not have an intolerance. both my dd's refused to eat food until at least 20 months. and even then it was for playing with mostly. they lived off of breastmilk alone till they were 2. at least it seemed that way. and most of dd1's symptoms started up when she started actually eating other food.

 

whether or not this is your ds's problem, it would be good to ask to rule it out. all of the sypmtoms really point to eds. but eds has so many symptoms that only a geneticst can say for sure.


cww's Avatar cww
10:54 AM Liked: 15
#12 of 22
09-08-2011 | Posts: 200
Joined: Jun 2010

I don't know that I have any specific tips for your exact situation, but I wanted to offer support and encouragement!  I haven't dealt with baby gastro issues, but I myself had a bad intestinal illness that lasted years, and I did eventually manage to find a solution and now I'm all better.  In my case, it turns out that I had an intestinal parasite (probably unlikely in your baby's case) and mercury poisoning, and once those two things were solved, I gradually got completely better.  Along the way I tested a huge number of theories (blood tests for stuff like celiac, endoscopy, colonoscopy, SIBO testing, fructose/lactose intolerance testing, gluten-free diets, treatments for GI yeast, sugar-free diets, IBS drugs to treat symptoms, etc). 

 

For me, some things that helped ease symptoms while I was still finding the root cause included the following:

 

1)  probiotics (it matters which kind you take - I was in Germany when I first had tests done, and they actually tested to see which bacteria were low or high, and prescribed probiotics based on which good ones were low or which bad ones were high).  Also, one really needs to take ones with a high enough count of live bacteria.  I found that Mutaflor (a German brand that's been tested for years - I think it's only available in Europe though, but if you get desperate, you could try getting it shipped from abroad) helped a great deal (no where near a cure, but made symptoms more manageable) for me.  Bifidobacteria live in the colon, whereas Lactobacteria live in the small intestine, so if you know there are issues in the colon for example, you can try a Bifidobacteria probiotic.  Here are some of the ones I used at different times: Activia yogurt (actually has a high enough level of bacteria to be effective), Florajen bifidoblend (one of the few I found that has only bifidobacteria), Culturelle (lots of good studies on this one, but for me it didn't seem to do much), Florastor (actually a probiotic yeast, but helped with some symptoms - you can also get cheaper generic versions of the same yeast). 

 

2)  digestive enzymes and HCl:  I found that my symptoms were worse when things moved more slowly, so when I took these (I still take small doses w/ every meal), it limited the bad intestinal reactions to things. 

 

3)  Fixing my thyroid - turns out it was too low (and that can slow down the digestive system). 

 

4)  Limiting sugar intake.  I did actually test positive for fructose intolerance (but so does up to 80% of the population).  My understanding was that if one is fructose intolerant, it can help if you limit sugar intake because for people with some other compounding problem the fructose intolerance makes it worse, but that it is not really in and of itself a disease. 

 

I don't know if any of these things are either appropriate for a baby or if they would do any good, but I thought I would just share my experience.  The main thing I wanted to say is that you probably can find a solution.  I went to dozens of doctors on two continents until I found my solutions, and endured a lot of "It's just irritable bowel syndrome - just relax and it will go away, and in the meantime you can also take these drugs to manage symptoms."  I originally got sick in summer 2004, starting pursuing a solution pretty full time in fall 2007, got the parasite diagnosed and treated around Xmas 2008, got the mercury diagnosed in mid-2009, and finished all treatment by the end of that year.  I started to really feel better by early 2010, got gradually better that year (while pregnant) and feel pretty much back to my normal self now.  So it took a long time, and there was a lot of one-step-forward-two-steps-back, but I did get solutions eventually.  I credit my success with my unwillingness to stick with any doctors who wrote me off (most doctors, I've found, have two things they know to try, and then they give up, so I would just go from one person to the next, to the next, letting them each try their two things).  I also read a ton of research articles online (I am a professor, so I have access to a university library with it's online databases, which can be helpful).  It sounds like you are already on that path if you found a naturopathic doctor - I really like doctors that are MDs who specialize in naturopathic medicine - if they are competent, they can really use the best of both areas. 

 

Good luck - I really hope you find solutions soon!


voca's Avatar voca
12:06 PM Liked: 13
#13 of 22
09-13-2011 | Posts: 65
Joined: Jul 2010

You've gotten tons of good advice about medical and diet interventions here, so I won't repeat them. I just wanted to add that as an adult with chronic intestinal problems, including the first four symptoms on your list (chronic constipation, abdominal pain upon lying down, extreme gas pains, bloating), one thing that has really helped me is a regular yoga practice. If you can borrow a copy of Itsy Bitsy Yoga from the library there is a yoga routine for better digestion that is safe for babies. It might help only a little, but given his chronic pain issues even a little help might be worth while.

 

The other low tech thing that really helps me with chronic constipation is making sure I always use a stool when sitting on the toilet, one big enough to raise my knees to my diaphragm. At 12 months it might be difficult to intervene in how he poops, but if you can get him to squat really low it might make things easier to pass.


beenmum's Avatar beenmum
09:45 AM Liked: 55
#14 of 22
09-14-2011 | Posts: 271
Joined: Nov 2010

IS he on any Motility meds such as Domperidone or Maxerian? (sp?)


mamandedeux's Avatar mamandedeux
10:44 AM Liked: 27
#15 of 22
09-14-2011 | Posts: 139
Joined: Jan 2010

I just found this thread after looking up domperidone. My DS1's dr. wants us to try it for his gastric issues. OP, he was exactly like your DS as an infant. He was misdiagnosed as having Hirschsprungs, and spent some time in the hospital because they couldn't get his bowels moving. He's just turned 5, and we still don't know what's up with him. We've tried everything. Literally. So now we're considering drugs (we did try Zantac a while ago). If it's any relief, most of his symptoms have resolved (extreme reflux, pain, screaming for hours, could only sleep upright for the first year of his life, gas, diarrhea and constipation, vomiting...). The only thing we're still struggling with is vomiting. He'll often vomit his meals right up, no warning. He can be happily eating, them bam! He cannot control it, it is not a gagging issue, it just seems like his body sends the food right back up. Thankfully it doesn't happen very often. His GI team seems to think that he might be a candidate for surgery as well if the drugs don't work (I'm still not sure whether we should try them, though.)

 

Good luck.


A.Jewell's Avatar A.Jewell (TS)
04:55 PM Liked: 0
#16 of 22
09-16-2011 | Posts: 13
Joined: Mar 2010

We just got back from an abdominal ultrasound today and are considering a CT scan, which we are not thrilled about since he's already had imaging radiation as well as intravenous radiation for his Meckel's Scan.  Does anyone have an opinion on CT Scan's in small children like this (he's 14.5 months now)?  I'm trying to weigh the benefits v. risks, but definitely don't love the idea of so much radiation exposure unless we are positive it will yield results.

 

Thank you all for your input and encouragement--I am so grateful to have a space to put questions like this out there.

 

CWW -  Wow, you have been through a lot yourself!  The crazy thing is I have a similar story, it took me about 4 years to find a doctor willing to look at all of the pieces and put a treatment plan together.  It turns out I have Celiac Disease, Gastroparesis, had parasites (we did some 3rd world travel while I basically had no immune system), and also had elevated levels of mercury.  I too have benefited from some of the things you suggested, although my thyroid is okay, and we've discussed or do most of these things with my son thinking he inherited my gut.  But there just seems to be something more going on with him that we can't figure out.  I'm so glad you are well now and that you have such a great success story--it pays to keep searching!  It helps keep me going.

 

Voca -  Thank you for your suggestion, we got the Itsy Bitsy Yoga book and will get on it!  I was an avid yogini before all of this happened, I think it will help both of us.  I also think your second suggestion is right on.  We used to practice EC with him before he could crawl or walk (now he just gets up off the potty), and the squatting/knees raised position was literally the only way he could have a bowel movement for the first 8 months of his life.  He can poop standing up now but it's definitely difficult, I think I'll try the potty again, or put him on the toilet while elevating his legs a bit.

 

Beenmum -  We've discussed motility medications like with Domperidone his GI doctor but she said his gut is not slow enough to warrant it, and because he doesn't experience much vomiting.

 

Mamandedeux  -  Oh boy, still struggling at 5 YEARS!  I cannot imagine keeping much for of this up.  I'm glad most of your LO's symptoms have subsided, the vomiting must be difficult though.  If my DS had vomiting we would probably try the motility medications.  With my gastroparesis (lack of gut movement), I've found success using a Sine Machine (it provides a light electrical pulse that causes the gut to contract artificially) when I'm feeling like my food isn't going to stay down.  Some Naturopathic doctors have experience with them and use them as an alternative treatment.

 


A.Jewell's Avatar A.Jewell (TS)
01:30 PM Liked: 0
#17 of 22
03-19-2012 | Posts: 13
Joined: Mar 2010

**Update**

 

We opted to go for an MRI with contrast instead of a CT scan to avoid the radiation.  He had that in November and it showed no visible physical abnormalities other than a slightly enlarged heart (which seems unrelated to his digestive issues but hints at other health issues) and that his intestines were completely full of stool.  Since his MRI (he had to undergo full sedation) he has not been the same.  He broke out in hives that lasted about 3 weeks.  His eczema also flared up and he had a respiratory infection for 3 months.  I'm not sure if it was related to the MRI specifically, but perhaps to the concoction of meds that he had through an IV (and gas to put him to sleep).  He was also intubated.  Somehow his immune system took a hit.  His lymph nodes swell often as well.  We had no idea that was coming from something that seemed so routine!  He's finally recovered from all of the that except that he is extremely emotional and clingy, acting very insecure ever since.  Makes me so sad, we've worked so hard at attachment parenting but some of the stuff he's gone through we just can't control.

 

He is 20.5 months now and still struggling with all of the GI symptoms from my original post, although there have been some improvements and some things have worsened.  His most recent weight check showed that he has not really grown or gained weight in 6 months.  His ND had him get some blood work done the other day to see if that revealed any nutritional deficiencies or anymore blood abnormalities, we're still awaiting results.

 

Since the MRI he has been on prescription laxatives (due to the large amount of stool that needed to get out, despite dietary efforts) and magnesium to keep his stool soft.  He still gets constipated though, especially if we dare miss a dose (he takes it twice a day for the last 6 months, if we try to wean him the pain becomes unbearable).  He alternates between painful constipation and painful diarrhea.  He's also seen an Allergist since my last post, which revealed he is quite allergic to dairy (no surprise), eggs and dogs.  We've also held off on gluten since I have celiac and his GI tract is clearly not mature enough to experiment with it.  We actually had to give him prescription allergy meds similar to Benadryl to get his hives down (they were supposed to make him drowsy too, which we thought might help him sleep through the pain, but it had no effect).

 

Some good news is that he "graduated" from feeding therapy and is able to eat solids regularly now (aside from the occasional gagging & vomiting).  Some days when his tummy hurts he won't eat anything, but then there are days where he'll eat pretty well (still less than the average toddler, but we're happy with the progress).  It gives us a lot more freedom to utilize dietary sources of iron and fibers to help his gut.  Although he seems to be malnourished at this point.  He went from nursing every few hours around the clock at 14 months to nursing 2 times in a 24 hour period now and is completely night-weaned.  I had to make that choice for my own personal failing health, he probably could still use it though :-(  

 

Right now we're awaiting his most recent blood results and considering testing for SIBO now that he is a bit older.  Do any of you have experience with testing such a young child for SIBO?  It sounds challenging.  How about treatment at this age?  Also, now that he is able to take supplements orally, we're exploring digestive enzymes like HCL and others.  Anyone with experience giving their little ones enzymes?  Or any other suggestions we should look into based on the above info?  His insurance just approved acupuncture, we may try that again now that he is a bit older.

 

Thank you so much for reading and for your support, it's been a very long and painful journey.


LionessMom's Avatar LionessMom
06:12 PM Liked: 48
#18 of 22
03-19-2012 | Posts: 3,610
Joined: Mar 2008

my daughter was 3 when she did the breath test for fructose malabsorption and SIBO. with the breath test he will have to blow into a balloon like thing to be tested. wasnt too bad. not sure if that would be the same test but that is how she was dxd with SIBO. instead of giving her the abx though, they just treated her with the elimination diet. 


A.Jewell's Avatar A.Jewell (TS)
12:41 PM Liked: 0
#19 of 22
04-09-2012 | Posts: 13
Joined: Mar 2010

Is anyone familiar with the blood or urine test for SIBO as an alternative to the breath test?

 

Thanks LionessMom, I wish he was old enough to be able to do the breath test!  What did her elimination diet consist of?  He already doesn't consume dairy, gluten and eggs due to allergies.


orlakelly's Avatar orlakelly
04:22 PM Liked: 0
#20 of 22
04-09-2012 | Posts: 37
Joined: Mar 2012

Hi I am at a bit of a loss but just wondering if its worth you getting your milk tested? You said you breast feed your child, maybe there may be something in it that your child is reacting to? Hoping this gets sorted-you came to the right place x Orla


fiddlefern's Avatar fiddlefern
11:49 PM Liked: 5
#21 of 22
04-11-2012 | Posts: 899
Joined: Nov 2003

Whew!  I am exhausted just reading your posts!  You are an amazing mom.

 

My son had failure to thrive, acid reflux, two years of a feeding tube, and some other stuff.  While my son's pain never was as bad as what your kid is going through (he just chose not to eat so it wouldn't hurt), I just want to say that some things do get better with time.  One of the best things is the ability to talk.  My son can tell me when he's experiencing reflux, which helps a bunch in figuring things out before they get bad enough that the reflux is visible to the outside observer.  He's 7 now.

 

I really hope you get some good answers soon and/or that things start to resolve.


Shaunamom's Avatar Shaunamom
12:41 AM Liked: 5
#22 of 22
04-17-2012 | Posts: 7
Joined: Apr 2012

Hi,

I honestly don't know if this will be of help, but with some of the health history you mentioned for both you and your little one, I figured it at least wouldn't hurt! Some of this may be something you already know, so apologies if it's not useful. :-)

 

There might be a possibility that the low levels of allergens you come into contact with may be enough to affect your child, if he is extremely sensitive to gluten, or the dairy, etc...  Have you investigated a lot of the processing and/or farming in your food supply and other products? Or joined any groups that keep any lists of products and places the allergen might be found? 

 

My family has numerous issues with various foods as well, with an extreme sensitivity to a few of them. With this high sensitivity, we were remaining sick and couldn't figure out why until we got some help from some folks on the internet with the same issue who helped us find safe foods.  http://www.glutenzap.com/forum/index.php is one that's good for super-sensitive celiacs, which helped me ferret out many sources of gluten cc in my diet that I'd never even thought of before, but I don't know of a good place for super-sensitive dairy or soy allergies, I'm afraid.

 

Examples of some of the crazy places we've run into allergies:

1. A wax that is frequently used on organic apples and citrus (shellac or lac wax, based on an insect) has soy or casein added to it for texture. Even cutting off the peel hasn't worked for us, because enough sticks to the knife as it cuts through that it contaminates the inside flesh and made us sick. Some other fruits may use this too, but I'm not certain, but many waxes and coatings have various ingredients that could be an issue.

2. Maple syrup - all in the USA are required to have a defoamer added that is rarely listed on the label. I found a small, local maple syrup that was using half-n-half as their defoaming agent without adding the required dairy warning to their label. :-(

3. Wheat was used in some of the glue-type agents in some older particle board products so can be a touching hazard for those with wheat allergies.

4. A locust/grasshopper pest killer called nosema locustae is sprayed on wheat bran and sprinkled all over the vegetable field and the produce - for something like, say, broccoli, it can be impossible to completely wash off. It can be used on both organic and conventional fields, depending on the brand.

 

These are not levels of contaminants that are enough to make many people react. However, for those who are extremely sensitive, they can still cause a reaction. A celiac friend of mine with a breast-fed 12 week old has had her baby react twice already, really badly, to gluten levels that didn't bother the mom. She's had to alter her diet to be even more gluten free than usual, now.

 

Re: gluten. Gluten free food actually has gluten allowed in it, even though the amount is very low (you probably already knew that, yeah?). However, in studies, they've found that some people react to low enough levels of gluten that they WILL react to the gluten levels allowed in GF food. The FDA in the USA even mentioned in their huge, 96 page assessment on the safety of gluten and gluten free food that if they were going to create a safety standard that would make food safe for everybody, even the really sensitive ones, they would have to have a <1 ppm standard. Most gluten free food allows 20 ppm.

 

Two celiacs in my family need <5 ppm of gluten or we stay sick. Avoiding this level of gluten has required more research to figure out than avoiding our other allergens. Some examples: many farms use mulch that has gluten containing straw on it that can contaminate produce (like some brands of strawberries and some types of mushrooms) and may not be able to be washed off. Some soaps and rinse-aids to wash our dishes in the dishwasher tested positive at over 5 ppm (I tested some, and some acquaintances also tested some). They've also recently discovered that gluten tests that are usually used to determine if foods are gluten free are underestimating gluten levels in foods with hydrolyzed gluten, such as GF soy sauce.

 

If your little boy is extremely sensitive, these types of things might be enough to make him quite ill, yeah? One of the reasons that the gluten occurred to me was the similarity in symptoms for your little one and some children I know of who get gluten cc. The constipation was a big one, along with the eczema. But also the pseudo obstruction rang a bell. I know of two celiacs, one adult and one child, who have an intussusception as their reaction to gluten. It just seemed to me that if this could be caused by gluten, perhaps a pseudo obstruction could be, too.

 

EDIT: also, the getting sick when the little one had the contrast, too, made me think of this possibility - I had that as well and I was SO sick off of it!  Many medications are terrible at testing for gluten and other allergens, if they test at all. However, if your little one was very ill after having the contrast, you might want to get the manufacturer name of the constrast and find out every ingredient in it - it might help narrow down a possibility for any substances that are an issue, you know? If you haven't already done that, that is.

 

Just a wild shot in the dark, from someone with no medical background, but again, I figured it wouldn't hurt to share as the only way to test it would simply be for you to examine your diet and do some research, you know?

 

Very much hope that you are able to find the answer soon. So awful when our babies are sick and we haven't discovered the reason yet. :-(


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