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Today's Dx: Failure to Thrive UPDATE pg 4 - Page 4

post #61 of 71
My oldest son was 11 lbs from 4 to 8 months old. It was scary. But more scary was what I heard from "good" doctors.

Now, I know, they should have sent me to GI first and foremost.

And most of us have had to jump on to fast moving trains too. So you are not alone.

We aren't trying to confuse you, or scold you. We're just all mamas who are tired and more tired.

post #62 of 71
Thread Starter 
Originally Posted by 3girlmom View Post
HEY! I live in Central Virginia! UVa? My daughter's primary doctor is great, but when things weren't going so well it was way out of their league. Specialists were the way to go, and you need a developmental pediatrician. I'd be happy to talk to you about my experiences with UVa if you want, and we're seeing our second pediatric GI doctor there next month.
Great! I would love to hear more about your experience. All this is so overwheming. I've never been to UVA before.
Originally Posted by lightheart View Post
Have you contacted your state early intervention program? They work birth to 3 years of age. they work more in lines with education.... therapy, is what I think of most, OT, PT, speech... but I think if there is any developmental delays at all they will help you identify them and get your child the help they need. They can work with you too on scheduling drs appointments, making sure the referrals are set up, they can request the office notes and get them to you (will have to sign a waiver for them to do that). It's a real in person face to face type service.
Yes, EI should be coming to our house this week for an evaluation. I am interested to hear their perspective. Also, thanks for all the very practical advice. Very very helpful. I appreciate you writing all that out for me.

Friday we ran another urinalysis which came back normal. Which just confuses me further since his first one came back with ketones and bilirubin. I guess I was nieve to think that we could just run a couple simple tests and get some real clues or answers. I hate that this could be a long process of fighting with doctors to get them to realize something is wrong. I worry that now that the second urinalysis came back normal the ped will just think she was right that there is nothing to worry about and the abnormal results on the bloodtests were just a fluke as well.

Is there anyone else here whose initial tests came back with nothing way out of the ordinary?
post #63 of 71
im sorry, this must be so frustrating for you. I hope that you are able to find answers soon. If the ped does think that, I would go with another opinion. Its better to know for sure, than just go with the better of the two tests. ((hugs))
post #64 of 71
We don't have mito or even suspect it, but all of DD"s testing so far has come back basically normal. We have had a few minor blips, but nothing thats dinged her for an actual diagnosis. Doesn't mean nothing was wrong. I know a mom whose child wasn't having unusual tests, and took a couple years to get her mito and other diagnoses. Hang in there!

And it doesn't always require fighting. Do some serious research ahead of time on forums anywhere you can. I had a horrible GI up until last week...Luckily I found a mom seeing a GI in my state who loved her GI. For the first time, I'm not fighting. He was honest and told me my kid was extremely rare, and was up to date on research and is getting her the needed specialists - including a trip to Cincinnati children's it looks like. Its just a matter of a good dr. and other moms can be a great resource for those!
post #65 of 71
Thread Starter 
Alright, so our ped referred us to the head of pediatrics at UVa who also, according to his website, specializes in:

Clinical Practice: Biochemical genetics, syndrome identification, clinical genetics Children and adults with birth defects, children with suspected biochemical abnormalities

Research Interests: Inborn errors of metabolism, chromosomal disorders

So that sounds promising. We will have an appointment with him in about a month. I am also looking into a GI or developmental specialist. (although I hear the ones at UVa tend to be quite pro-vax and no-so-pro-breastfeeding. )

The PT/OT should also be coming this week as well as a copy of Ezzy's medical records from his surgeon! I really want some clues as to what is going on!

Thank you all for your helpful advice and encouragement.

post #66 of 71
how are things going with him now? Any answers from the drs?
post #67 of 71
any updates?
post #68 of 71
I'd love to hear too. I have a tiny little guy who is just getting into the mid 18 lb range now that he's 15 mos. He grew nicely up until about 6 mos too even though he had heart surgery @ 2 weeks old. I did all I could then reluctantly started pediasure last month. I mix about 2/3 pediasure with 1/3 coconut milk and he's actually gaining! He was in the high 17 lb range last month and he's gained almost a pound in one month.
post #69 of 71
Thread Starter 
Awe, thanks for asking

Things are looking better. He now weighs 17 pounds 14 ounces, so that is 6 ounces in a month!! We went to a geneticist who wants to wait and see how much progress he makes with PT before further testing. He said it looks like something happened around the time of his surgery to cause a major slow down in his growth and regression in muscle control/use... well, duh! So nothing insightful there. DH and I feel that there was most likely a drug reaction to a med used at the time of surgery that has taken his body a while to process and get passed for some unknown reason that we may never find out. DS2 does seem to be heading back toward the growth chart. He has not gained length in three months, but the 6 ounces is promising. His head has also grown some!: He is gaining motor skills, and although he is hypotonic in his trunk and legs, he has begun to pull up to standing! We are so excited despite his wobbles.. it is good to see him using his legs.
He has roseola right now and is also trying to pop out a new tooth, so he's been pretty miserable the last few days. Here are some pics from about a week ago:

Boxes are fun

Getting upset

Fresh cut green grass
post #70 of 71
He is so cute! I love the expressions on his sweet little face! FWIW he doesn't appear overly think to me. A little on the small side but not wasting-away thin. Our cardiologist told us babies typically don't gain for a while after major surgeries. All of their energy goes into healing instead of growing. I also believe that having lots of meds at such a young age can put a beating on their delicate little systems and it takes a while for things to get back to normal. At least that is why I suspect my DS2 has/had malabsorbtion issues for a while.
post #71 of 71
Originally Posted by irangel View Post
Yep. At 18mos when my dd was only 17lbs and her growth chart was looking like this, http://2.bp.blogspot.com/_bTnxe-T8eq...owth+chart.jpg people still were saying it wasn't a concern because she was also only 27in. Turns out she has a severe endocrine deficiency and that's why she was so short. The lack of weight gain we've still yet to figure out. But everyone said it was because she was premature, which she was but she was also making great strides towards getting onto the chart and then she suddenly stopped even heading that direction.
I haven't been concerned about my DD at all until reading this... she is 17 months, 30 inches and 22.5 pounds. She hasn't gained weight or grown in height at all in the past 5 months. We don't go to the doctor often, and she seems perfectly healthy but I'll definitely be looking into this.
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