Today's Dx: Failure to Thrive UPDATE pg 4

[suprgrl]

DS2 (11mo) was diagnosed Failure to Thrive today as well as Developmental Coordination Disorder. He also has craniosynostosis for which he had surgery in February.. that is the time his growth pretty much flat lined. We will have some bloodwork done next week. I really want to figure out what is causing this. It is so scary, FFT.

Ronna

[sbgrace]

What types of testing are being done to find out the cause? You mention bloodwork--genetics?

[suprgrl]

Here is the list of tests on the order:

Automated urinalysis
Chem 14 (Comprehensive Metabolic Panel)
Serum thyroid stimulating hormone
Plasma ammonia
Blood lactate and pyruvate
CBC with diff and platelet count

She said he cannot eat or nurse for 6 hours prior to testing.

Ronna

[2boyzmama]

I know the feeling...Connor was FTT at 4 weeks old, then did okay for a little while (not good, but enough to lose the diagnosis). He finally doubled birthweight at 8 months, then got sick and it took him until 10 months to reach double birth weight again. Now at 16 months (almost 17!) he's finally on the growth charts for height (5th percentile) but still well below the chart for weight.

Oh well. I don't let the drs get me too upset about it. I know that he and I are doing our best, I know that he's still developing normally for kids with his syndrome, so I try not to let it get to me. But it's hard!!!! I refuse to supplement with anything special, in his case, it wouldn't help much anyway.

[suprgrl]

Yeah, DS2 is 11 months and has not yet doubled his birth weight.

[UptownZoo]

My youngest DS was FTT when he was a toddler, and is now again (he turned 6 yesterday). I hope you find some answers very soon!

[irangel]

Good luck to you guys. I hope you can figure out what's going on. My second was FTT for a while due to reflux and my youngest is severely FTT at 2.5yrs and only 19lbs. It's tough feeling like you're doing everything you can and seeing no growth.

[2 in August]

My little guy was thisclose to being diagnosed with ftt. I know how hard it is to even hear that when you are trying so hard and doing your best. s

[suprgrl]

Thank you all for the hugs and support. It's true I really don't know what else to do to get his weight up. I have increased the fat in my diet, he nurses every three hours throughout the day and twice during the night. He did have swallowing issues until about a month ago, but now he eats mashed foods pretty well so we feed him egg yolks, veggies&potatoes with butter or coconut oil, homemade bone broth based soups, avocados, whole homemade yogurt and raw organic milk. I really can't think of what else we could do? Any suggestions? I really feel like there must be some underlyinig problem or the high fat diet would make a difference, right?

How likely is it for him to have a metabolic or mitochondrial disorder given the fact that he was growing normally for his first 6 months and then slowed way down? Wouldn't we be able to tell from the beginning if that were the case? He was a big healthy baby.. 9 pounds, 21 inches. At 6 months he was 16.4 pounds and now at 11 months he is 17.2 pounds.

[RoadWorkAhead]

DD has a malabsorprtive condition as well as undiagnosed gastro issues (EGE, something else, who knows?!) She grew normally for 6 weeks, slowed a bit but still within range to 6ish months, slowed a bit more to 9 months. AT 9 months she was 17 lb. 6ish ounces. At 12 months, she was 17 lbs. 6ish ounces (Might have been 8ish ounces...). Thats when she got her official FTT diagnosis. The condition was there, her body just didn't respond as violently to start as it did at a year. Now she's no longer FTT (I'm hoping for official from ped removal of diagnosis next week!) but she's tube fed a medical formula to 1152 cals a day. At 9-12 months, she was getting already nutrient dense BM to a total of like 1400 cals a day (she was getting well over 60 ounces a day) and not growing. Its how we knew something was really, really up. So yes, he could have been growing normally and slowed over time until he suddenly slowed drastically.

[sbgrace]

Actually, my son with the metabolic issues dropped off the scale at 6 months and his twin (who had been over 2 pounds smaller) passed him up. He started off at 6 lb. 9 oz. compared to his twin who was 5 lb. 4 oz. Meaning for my size and their twin gestation he was a good size baby.

I will also say that I greatly increased Andrew's fat. He was eating way more calories than he needed and still not growing well. (He did grow some).
Turns out he can't metabolize fat. He also lost skills over time.

My point is that with unknown issues that could be metabolic in nature I think you want to keep the diet not heavy in any thing--fat, protein, carbs. You want balance.
Yes, I think there is an underlying issue or it would make a difference. I wish I knew what it is.
One thing: is there a family history of short/tiny people? Because kids can go to their genetic predisposition around 6 months too.

[3girlmom]

I have an FTT daughter, 19 pounds at 21 months. We know that she has an endocrine disorder which makes it difficult for her to grow, but we still don't have a handle on why she won't gain any weight, and we've had this diagnosis for about a year now.

We've been through the tests you'll have. The 6-hour thing was rough, especially since they hadn't ordered the correct lab apparatus and we had to wait another hour and a half for it to arrive. You will definitely want someone else there to hold your LO before the test because it will be very hard for you not to nurse. Also, make sure the nurse or whoever is performing the tests is really top-notch. They are very, very easy to mess up.

FTT is such a hard diagnosis (is it even a diagnosis or just a description?), for a couple of reasons. Every time I see those letters scrawled across something my heart skips a beat, it's just so harsh! I think doctors look to the parents to increase foods, supplement with formula, etc., and these things may or may not be helpful, and it can devolve pretty quickly into a kind of blame game. If it were an issue of providing more food, it would be so simple to solve! I hope your doctors are supportive and helpful.

Here are some of the things we've done: acupuncture to increase appetite and absorption, hemp oil and omega oils (my primary concern is brain development), getting on a schedule of meals and snacks so that she's not snacking all day, which is not a great pattern for weight gain (but I don't know that I'd introduce that kind of schedule at 11 months). I also ignored everything they told me about breastfeeding, especially since the doctors all contradicted each other all the time. I did try a SNS when she was about a year old to increase calories, and it was a bad idea. Not only was it a total pain (and mothers of newborns who do it have my total admiration), but it just meant my daughter nursed for shorter periods of time because she got full faster.

Please feel free to PM me if I can be of any help. Good luck!

[suprgrl]

Originally Posted by sbgrace

One thing: is there a family history of short/tiny people? Because kids can go to their genetic predisposition around 6 months too.

No history of short/small people. Most of our family is in the 5'5"-6'2" range.

And it is not just his growth. His skin hangs on his torso and although he has chubby cheeks and legs he has old-lady-like arm flab and thin wrinkly skin on his abdomen. His legs are even starting to look like that up at his hip joints. His muscle tone is low and he has the gross motor skills of a 7-8 month old.

I really hope these blood tests show something. What exactly do I need to do to make sure these tests are done right the first time? Do you think they could do the one(s) he needs to fast for first so he can nurse while they do the rest? I can't imagine how light headed you'd get with a blood draw after not eating for 6 hours!

Thank you all so much for your help and understanding.

Ronna

[3girlmom]

We scheduled the testing for first thing in the morning, so I nursed at about 2:00 and then not again. If they'll "let" you nurse depends on the technician, I imagine...if you've had tests done before, and there's one you like, I would request that person. I assume to get to this point you've been to the dr's a lot before, and now is the time to call in any favors for that first appointment and the good technician. DO NOT GO ALONE. It is too difficult to deal with a baby you can't soothe by yourself.

I might schedule the urinalysis at a different time. How is he supposed to pee when he'll be a little dehydrated? That test is tricky as well, unless they are going to hook him up to a catheter.

[sbgrace]

Originally Posted by suprgrl

No history of short/small people. Most of our family is in the 5'5"-6'2" range.

And it is not just his growth. His skin hangs on his torso and although he has chubby cheeks and legs he has old-lady-like arm flab and thin wrinkly skin on his abdomen. His legs are even starting to look like that up at his hip joints. His muscle tone is low and he has the gross motor skills of a 7-8 month old.

I really hope these blood tests show something. What exactly do I need to do to make sure these tests are done right the first time? Do you think they could do the one(s) he needs to fast for first so he can nurse while they do the rest? I can't imagine how light headed you'd get with a blood draw after not eating for 6 hours!

Thank you all so much for your help and understanding.

Ronna

Another thing to look into would be genetic issues. You have a lot of markers for genetics and/or metabolics. The best way to make sure they are done right the first time is go somewhere where they do them a lot. Where are you located? Maybe someone can recommend a good doctor near you.

Lactate needs to be taken with the tourniquet off or before the tourniquet is placed if I remember right. I think it is an on ice one too. Ammonia draw has to be put on ice. The lactate is the one most often messed up. But if you go to a place where they run a lot of them it should be fine. http://www.labcorp.com/datasets/labc...o/sc014500.htm

http://www.umdf.org/site/c.dnJEKLNqF.../Diagnosis.htm My son had the blood/urine tests recommended for all patients for his initial testing and they were all fasting tests. This was for metabolics. Genetics is less involved in terms of just blood tests and fasting wouldn't be needed. I don't know as much about genetics as we're metabolic stuff but I mention because of the craniosynostosis along with the other things.

Did you notice any other changes after the surgery other than growth? Did he have the low tone and developmental coordination disorder (what is that?) before that point to the same degree?
I ask because my son went under anesthesia and after that things went downhill fast. There were issues before but they became worse after. Turns out he had a metabolic condition and the anesthesia or something else connected to the surgery was hard on him metabolically.

[suprgrl]

No, I have never been to this lab. I'll try to find someone to go with me. I also need help with my older son.

So if I have never been to this lab before, how do I make sure the tests are done right (ie one of them is s'posed to go on ice and has to be done just right for the results to be accurate). I do not want to have to repeat these labs.

[suprgrl]

Thank you sbgrace for the links and info. Very helpful.

We have decided to travel out of town for the labs since I have little trust in the hospital system in our small town. So we will go to where they know what they are doing. I talked to a very nice woman from there tonight. She was very nice and patient with all my questions and took the time to look up anything she didn't know off the top of her head. I feel good now going to that lab to get the tests done. She said it would be about 10cc's of blood. That sounds like a lot! And after not eating for about 6 hours! Poor baby. I'm afraid he'll pass out. I'm glad I called, though cause they have to make sure they have the right equipment for the lactate and pyruvate test.
Sorry to just barge in this forum with all my questions. I'm so worried this will be something that might shorten his life or he'll need meds forever. Or that we will have to go through tons of testing before we figure this out. I just want my baby to be okay. I want him to start growing and being able to chase his big brother around like he wants to.
Alright. I've got to stop my obsessive googling and get some sleep.

Ronna

[mamaof5boys]

I couldn't read this and not post. Just wanted you to know that I said a prayer for you and your LO tonight. Hugs!

[suprgrl]

So we have an appointment tomorrow morning for bloodwork. We will have to drive an hour to get there. Please send your comforting thoughts to our baby, Ezzy that he won't feel too hungry and the phlebotomist, Mary, will be good at what she does.
Thank you all. I know our experience pales in comparison to the difficult things some of you amazing mamas have been through with your children. Thankyou for your understanding and comforting words. It is nice to hear that I should trust my instincts. IRL people seem to just want to tell me to not worry, they're sure he's okay... it's probably nothing.. That totally makes me question my gut and wonder if I'm a hypochondriac

[2 in August]

Momma's intuition is given to us for a reason. It's good that you are following yours. Even if these tests don't come back the way you are expecting them too, they will rule out these things and lead to a better understanding of what is going on. Let us know how things go tomorrow!