Baby suffers from Failure to thrive

[Isabelle]

A young friend of mine is concerned for her boy now 2 1/2 years is only 24 lbs and since he was 6 months failing to grow, he has ear infections and tubes in the ears, severe asthma, vomits, abdominal pain waking him up at night, she breastfed him until he was 17 months stopping when pregnant with third baby. Five doctors are looking at his problems, and endocrinologist, an immuniologist, a pediatrician, etc. his immune system was found "normal", cystic fibrosis was rule out and soon other tests included genetic will follow. He is not showing autism, she used to care for autistic children so she knows.

Any ideas, what else doctors should rule out?

[GinaMarie]

I would look into food allergies, possibly celiac disease or glutton problems with stomach cramps, vomiting and no weight gain.

Gina Marie

[Isabelle]

My first thought was milk allergy, but wouldn't 5 doctors for the last 18 months figure this out?

[ktufte]

Has anyone suggested an MRI to rule out Chiari Malformation? Some of the symptoms listed sound like the ones my son had. Doctors don't think of Chiari so it doesn't surprise me that they haven't figured it out yet.

[lisa6wks]

Severe reflux can cause some of these symptoms, have they checked into that?

Lisa

[Isabelle]

Thanks, Ktufte, Lisa:
I just finish talking to my friend. Here is another clue his bones on his hand have not change, if understand right she told me that doctors x-rayed his hand and the doctor saw bones of a 12 month old and he is 2 1/2 years.
She didn't know anything about chiari. But I think, in Canada has a different name I think "herniate" I don't remember the full name I will look into that new clue too.
Geneticist will follow in a few months.
Lisa they did an Endoscopy and colonoscopy and was normal. Next week he is going for a bariumscopy (?).
Because the baby was losing weight they were suspected of neglecting and were referred to children's aid and investigated :rolleyes:
Doctors did metabolic tests. He is developing normally as normal as anybody. He has the language skills of a 4 years old. His comprehension of language is advanced, no neurologic damage his motor skills are perfect. Physically has a an adorable face, his head size is normal to his body.

He was not born a premie, he is off milk, he takes lacto-free drinks. He was also tested for celiac disease, all clear.

I am going to research that clue about bones. They also tested for hormones, all clear.

[cckids]

When Asthma and Gi problems are seen at the same time...most of the physician's i've worked iwth first condsider GERD-gastroesophageal reflux,..this can be triggered by neurological problems or other reasons...have they done an upperscope or barium study.. Does your child have other health issues.

About milk....lactose intolerance and a milk allergy are different. The milk allergy will be noted on immune or allergy testing. Lactose intolerence can only be diagnosed based on history and improvement of symptoms with avoidance or a breath hydrogen test after consuming lactose products.

Just a thought

[Kristen (ColeysMom)]

I posted this on BT2:

Metabolic Intolerance.

The vomiting, weight issues, sleep issues and abdominal pain all point to food. I'm assuming mechanical/structural issues have been checked like hernia's and blockages etc.

Food intolerances (for those that don't know) will not show as an allergy because they do not trigger an immune response, they are a metabolic incompetence.

Also keep this in mind guys, GERD is NOT a specific condition it is a symptom of something else. And vomiting is not reflux. Reflux is a normal everyday occurance that happens to everyone. We are oblivious to it (most of us) because there is no pain associated with it. When there is pain (or a complication like aperation) then treatment is necessary. When there is pain it means that there is either too much acid or a structural problem. If they have checked with a scope to rule out a structural problem, or a blockage of some sort further down then the problem is excess acid. Excess acid occurs when particles reach the intestine too large to process, so more acid is generated to break the particles down. This occurs for a whole host of reasons, and this is where a specialist comes in.

A GI is like a plummer, he can tell you if your pipes are not functioning, after that you need a better Dr.

Yes acid reflux can trigger vomiting, but vomiting itself should not always be considered GERD. And if the vomiting is occuring with force (projectlie, for example, or in large volumes), versus like a spit-up, then it should be seen as a rejection of food. Given that the child is wasting from the vomiting, It certainly does sound as though it is much more than your spit-up sort of vomit.

Is there diareah or constipation, dehydration, lathargy, body temp issues, seizures, etc?

BTW - have they tried an elimination diet?

ButI see that you've posted more info here....

My question is what type of metabolic testing did they do? Have they actually had a consult with a metabolic specialist?

Reason I ask is that along our trek to a metabolic disorder with Coley, after he was diagnosed with LKS and before PDD, a very experienced & respected neurologist told us in a consult that in his opinion Coley did not have LKS, he did not have epilepsy and that his seizures were most likely caused by a metabolic condition. He sent word back to our treating Neuro who did a metabolic work-up. All came back normal.

Later we were referred to the specialist who looked at his symptoms and behaviors and diagnosed him. We altered his diet and he has not lost weight since, he just had his first spurt in height since he was an infant. He is no longer failure to thrive, he's sleeping normally (WE are sleeping normally) his development and everthing else is on track...

They retest him & retest him, and there are no major differences in his labs. But all the Drs (and his teachers/therapists) agree...something that has been removed frm his diet was f'ing with his body & mind.

We test him now and then with small samples, and the reaction is always the same...horrible sleep for several days, terrible behavior, very sleepy child, change in his coloring, loss of appetite.........

But the thing to know about metabolics too is that it's generally not a single test kind of thing, it's a collection of results combined, and usually you need to catch those results when the body is in metabolic stress. It can be weak from not being able to metabolize componenets of food, but metabolic crisis is different, and it can easily be mistaken for a bad flu or even a severe reaction to vaccines or meds or environmental allergies, etc....

Looking back on it, and after having it explained to us better, we now know that a lot of those not so typical reactions to things was really his body super stressed out...so as long as we keep him restricted he won't show those 'metabolic stressors'...it's like the EEG that way, you gotta catch it at the right time to 'see' it. But just like our neuro knew from describing his behavior that he was having seizures, so too did the metabolic specialist know from his behavior that he had an intolerance...we didn't catch a seizure on the EEG (there was other evidence though) and we did not catch metabolic crisis in his labs....

Does that make ssense?

KJ

[Isabelle]

I wrote a lengthy answer and was not accepted because I was told I didn't logged in when I did.

[Carly'sMa]

Isabelle,

If he is seeing and endocrinologist, have they checked growth hormone?

And, don't bet that the docs are going to get it right. Sorry for my inability to put all my faith in the docs, but Carly is also failure to thrive (still at age 15). For years we went to GI specialists all who wanted to give her a g-tube. The child eats plenty. In fact, she ate more than her younger brother!

Through Shriners we started seeing an endocrinologist because of concerns about osteopenic bone. At age 12, when the endo asked about her showing signs of puberty, we said we werent' seeing it. He then suspected growth hormone insufficiency. We had her tested, and sure enough that was it. Not one GI specialist even suspected this or checked for this! Since starting growth hormone therapy she has put on 8 1/2 inches and 16 lbs (in 2 1/2 years).

Also, Carly had a kidney condition which is triggered by an immune system problems. We went to a seminar where one doctor mentioned milk. We took her off milk and she hasn't had the kidney condition in 6 years! They won't say it's the milk, but they also are telling us to keep doing what we are doing.

Gluten free has not produced many results.

But, there is nothing that says you have to eat gluten or milk. There are plenty of substitues.

Have they checked for Chrones disease as well? (Did I spell that right?)

[Isabelle]

Thanks Carly'sMa. I found online a site called Magic Foundation in which describes two conditions related to failing to grow. One is Gestational and the other Constitutional and fits pretty close this baby's case, according to his mother, doctors x-rayed his hand and found the bones were the age of a 12 months baby and he is 2 1/2.

http://www.magicfoundation.org/www/docs/113.1068/

The rest of the symptoms looks to me food sensitivity. I am going to ask her if doctors have suggested to do an elimination diet.

About growth hormones, I believe he was tested.
Next week she'll call again after teh barium test.
We will see.

[Carly'sMa]

I'm glad you found Magic. I've been invovled with them and there is a Yahoo Group for them. In fact, they published our story in their last newsletter.

What I forgot to mention in my last post was that at age 14 Carly's bone age was 8 yrs. 10 mos. Now at age 15 she is 11 years. That is a lot of growth in one year, but still enough room for more growth to occur.

[Lara]

Isabelle, I hope the results of the barium meal give some clues. I had a problem with my gastroesophageal valve. It basically didn't work to keep the contents of my stomach in my stomach. It's between the oesophagus and the stomach. Structural abnormalities like that can cause vomiting and weight loss because you're not getting the nutrition from the food in the digestive system if it keeps coming back up.

You mentioned "ear infections and tubes in the ears, severe asthma, vomits, abdominal pain".

The child seems to have had a lot of tests which have all come back negative. That's good of course, but doesn't answer the question as to why the child is not thriving. I didn't see any mention of diarrhoea, so would think that would rule out a number of things that could cause FTT. It's not uncommon to see infants here with giardiasis when the water levels are very low. These days much less common 'cause most of us drink bottled water. Tuberculosis (TB) also appears to be something that they rule out when a child isn't thriving esp. when presenting with - fever, weight loss, coughing.

No mention of renal problems.

Has the Mum tried using a food diary at all? Writing down what he's actually consuming on a daily basis. That'd probably be really helpful for the doctors, but I would imagine by now she'd have done all that. Well, hopefully the barium test will have some answers, but from reading what the other mums have written here, it doesn't always seem there is an answer.

[peglem]

I know this sounds kinda stupid, because its overly simple. Has anyone done a strep test? They don't usually look for it in very young children, but it can cause a TON of problems beyond the sore throat.

[Isabelle]

Sorry, guys, she hasn't call me yet. The last time I talked to her I asked if she had a computer she does but is used mostly by her husband and she is busy with the 4 months old baby, the 2 1/2 boy and a 4 year old girl.

If she doesn't phone me by Wednesday I'll call her...

[Isabelle]

BARIUM TEST BACK NORMAL...ooopsie capital key got stuck...fecal test for the 4th of december to see what he can assimilate. no metabolic or IEM tested. the baby 2 1/2 has the cognitive, speech of a 4 year old, very advance mentally for his age. so far he is doing great one pound gained in a year.....

[Lara]

Isabelle, one pound in a year???

[Isabelle]

Yes, Lara, that what she said "we are happy,the doctors are happy, he has gained a pound in a year". He is 2 1/2 , they x-rayed his hand the growth is of a year old!!!!. He had many ear infections, stomach problems. I asked her if dwarfism has been ruled out, yes. Metabolic disorders? No. He is on a diet. No problem with his motor skills, cognitive skills, intellect, speaks in full sentence, etc. On Dec 4th fecal test to see what is he processing, she'll let me know.

Funny disorder, eh? I know his mother since she was 3, she was trained to care for autistic children, she is very a dedicated, smart young lady. Her 2 dds are normal and growing normally.

I am curious too, so we will see what is the final dx.

[Mayzoo]

My daughter is 4.5 yrs old and just hit a whopping 32 lbs, and 36". Not to say this normal--it is just normal for my daughter. We did the full chromosone analysis, the MRI's (did pick up the chiari), tons of blood work, orthopedic exams, etc.....
Her daddy was 29lbs at 5 yrs old, so hers is genetic with the twists of her diagnosis.

I would recommend a chromosone analysis, since his hands aren't proportional. My daughter was always proportional. Just to rule out any dwarfisms etc...which do come with there own complete list of medical complications.

Good luck

OOOppss, just saw dwarfism ruled out---good. Glad to hear that

mayzoo

[mtsm4]

My first thoughts when reading your initial post was milk allergy too.

Has the boy always been failure to thrive, or was there a specific time that problems started?
I ask because my son has a milk allergy. I breastfed him (I'm not a milk drinker) until the age of 13 months and we switched over to whole milk then. Between the ages of 1-2 my son struggled with failure to thrive; he also had chronic diarrhea issues, his sleep was totally messed up, his behavior changed, skin broke out etc. My son also struggled with anemia----and iron drops and later iron tablets was not helping his anemia. His doctor put two and two together and had me totally stop all dairy products. Within just a short time, things started changing for the best....the chronic diarrhea stopped, the sleeping improved, his iron level came up to an appropriate level, his behavior mellowed out, etc. It was obvious that the problems with my son began after he stopped breastfeeding and was switched to whole milk, but since removing all dairy he has improved greatly.

My son has been totally dairy free for 7 years now. He's still on the small side both in height as well as weight, but he's growing at a consistent level now and hasn't struggled with FTT since he was around 2. If my son slips up and ends up eating something with dairy the first signs are skin breaking out, horrible stomache ache, diarrhea.

[Isabelle]

Peglem, I forgot to ask her if he was tested for strep, but I will.

Mayzoo, yes, chromosome analysis makes sense. I'll mention it to her.

Mtsm4, he is off milk and he stopped thriving after switching from breast milk to regular milk at about a year of age, she became pregnant and stopped. I did asked her if she drank cow's milk while nursing and says no.

We will see.

[mpsgirl]

I do not think it is this but one thing to look into might be typing in mucopolysaccharidoses it is a genetic enzyme deficency disorder.

[Isabelle]

i will pass it on to her, this genetic enzyme deficiency disorder. i will look it up too.