In the 2 years that Jonathan has been home he has grown taller and he did gain weight in the beginning, but he is still SO skinny! Right now he weighs around 28lbs. He needs a 3-4T clothing to fit him length Wise but they fall off of him unless I buy the adjustable waist pants and pull them as tight as possible! He does have eating issues (gagging, vomiting, refusing to eat), but we do manage to get food in him. I have talked to our pediatrician, but he always assures me that he will be fine. My concern with this group of pediatricians is that they are not familiar with everything that goes along with IA kids!
A little background on Jonathan - for those that do not know the full story: He was born at 25 weeks gestation. He weighed 14 oz at birth and had a grade 4 brain bleed! He was hospitalized in Kaz for the first 6 months of his life - nobody thought he would live. He was then move to the Baby House. The premature birth and severe brain bleed is believed to be the cause of his brain damage and Cerebral Palsy. When we met him he was 20 months old. We were told that they had recently weighed him and at that time he weighed 12 lbs!!! We started feeding him at our visits 2x per day and he immediately started to gain weight. By the time we brought him home 7 weeks later, he weighed around 18 lbs. We had been feeding him a lot of peanut butter (we took a 6 lbs jar with us to Kaz), bread, cookies, juice, noodles and beans. When we first got him, it was like a feeding a wild animal! We could not get the food to his mouth fast enough! Now he turns his nose up to food! He will say "I'm hungry" but when I serve him his food he will take a few bite then push the plate away. I tell him no - he needs to eat. I don't know if that is the right thing to do, but my gosh - I don't want him to loose any more weight! Oh and then there is the gagging and vomiting... while both have gotten much better - he still does it! I don't know if this is all just a control thing with him or if really has issues!?!
Another thing I have worried about is parasites. I asked the Dr to test him for them, but he said no - it is not necessary! I stood firm and explained that I came home with a nasty parasite from Kaz - and I never drank the water or brushed my teeth with the tap water! But he again said no - because Jon was not suffering with diarrhea.
Here are the things I have tried:
*I gave him a natural parasite cleanse for children that I purchased at a local health food store. I have completed the process 3x, and it did produce "results" the first time.
*I do feed him foods that should help him gain weight, but this has not helped.
*He has been receiving OT, PT, ST and play therapy since we brought him home. OT does work with him on the gagging/vomiting issues. And like I said, those have gotten better, but still happen every now and then.
I am at a loss and wondering if any of you have suggestions????
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9 comments:
You must get him tested for parasites. Our son did not have diarrhea either but did have Giardia which accounted for some of his malnutrition. I would seek out an IA doc if you can. At least get him tested for O&P. Good luck, keep us posted! Oh and if he tests positive for parasites, make sure to get retested after treatment, sometimes it takes more than one treatment.
I agree that he should be tested. I'd consider seeing another doctor if they won't. It's no sweat off their back, you are the one that will have to do the "dirty work."
Regardless, I sympathize. I have a 3 year old son from Uralsk who is still struggling to reach 30lbs. He's been 28-30 lbs for almost a year. He also had eating issues much like you described, but is doing much better after a year of speech and occupational therapy.
I'm curious to see what comments you get since I also feel the need to get some weight on my kiddo. Along with his doctor, I do feel he is healthy. But I freaked out a little when I found him in a pair of my daughter's 9mth shorts. Thank goodness 3T/4T pants have waist adjustment!
Take care,
Angela
Mom to Izaak and Aaliya
Holly,
Try another doctor or a natural healthcare practitioner. You could try feeding him Pediasure instead of milk or as a snack to get calories in him. But you need to have him checked for the parasites. It is possible to have them with out the D****. Give him the full fat version of food. Make sure he gets things like butter with his potatoes. Not necessary for all of us but for those with low weight issues it is a good idea. He may just be a skinny guy. You could try girls pants in boy colors. They are cut slimmer. Some of our boys have had to wear slims but in toddler sizes that isn't possible. Find a good belt or adjustable waist pants. Try taking in the elastic a bit with a safety pin or a few stitches if you sew. Overalls are nice. No need for hips to keep them up. Suspenders can be cute.
Tracey
www.delrosarioadoptionsaga.spaces.live.com
I would insist that you have him tested for parasites. Bring him the recommendation from an IA doctor and tell your dr. that it is the protocal or take him to an IA specialist. At the very least voice your concern over his low weight and ask to have him seen by a gastro. They would most likely agree to run tests for parasites.
If you son is throwing up while eating, you should really look into the sensory side of the issue. An OT or SLP could screen for and treat food aversions.
My youngest has been home from Kaz for 14 months. She was 15 lbs at 10 months when we came home and now is 22 lbs. She is tiny but healthy and we celebrated finally making the growth scale for weight this time. When she doesn't want to each which is often, she is still usually willing to drink kefir or yougurt from a cup. I use full fat versions. Her peds also kept her on whole milk for another year. My daughter likes pasta so I give in and get it but opt for the protein added versions.
Another big thing for us that helped tons in the beginning was to add a probiotic. We still go back to it anytime she is on antibiotics or seems to have a weak stomach. It works wonders.
My daughter was negative for all parasites and has never been malnourished she is just a preemie who is probably always going to be a petite little thing. Don't worry about the weight if you have ruled out the parasites etc. and he is healthy and developing normally.
Shanna
mom to Tamar from Pavlodar
and Libby from Semey
I just realized you are in GA. We have seen fantastic OT and SLPs over the last 5 years and have a great peds practice in Atlanta as well as a good gastro group. Feel free to email me if you want contact info.
Shanna
wilisons@joimail.com
He has been receiving OT since we brought him home. The OT works with him on his feeding issues and they have gotten better, but there not completely gone. I am looking for an IA Dr in ATL or I may go to the one in Alabama.
of course, I have no experience in this at all-but i did have a skinny kid cuz Sean was a preemie-but not nearly as small as Jonathan-wow-
I had to go thru all these tests with him when he was about 18 months because they were not happy with his weight gain (not enough)
Now, he is a big stocky kid with a huge rootbeer belly and i have to really have him watch his carbs.
we also did not have any gagging issues-but we just did things to add calories-like carnation instant breakfast to his milk, tried ensure (but he hated it) and just tried to make sure everybite he got was extra calories.
I would defintely take him to an ia doctor. I think it's rather annoying that your dr won't test him for parasites...but i guess some dr's just don't understand and they say "a kid will never starve" but if he's that skinny -he could have them!
you are smart to post on your blog with so many people with so much experience.
I am so glad that he is doing so much better now too. I can't imagine how small he was at birth and that he did survive and is now thriving under your care.
I am always so amazed at how the right kids end up with the right families!
I would definitely get him tested for parasites. And don't hesitate to find another doctor with IA experience for at least a 2nd opinion. Calvin was malnourished when we brought him home and we used a lot of pedia sure - he loved it! Maybe you've done that. If not, Wal-mart has their own brand and it's cheaper.
That's tough. It's great you have him receiving the various therapies. Sounds like you are doing a wonderful job advocating for him. He's so cute!
I think you've received a lot of great advice here. (I love how everyone is so supportive.) Garrett also came home with parasites and showed no signs of diarrhea. He was tested in May and put on antibiotics. We will see Dr. Johnson in Dec. and wants to retest him again.
I don't know about the gagging problem, but that must be very frightening to watch.
I also don't understand why doctors have to make things so difficult. Maybe they don't like being questioned by skeptical patients, who knows? But we all need to be advocates for our children and I know you're doing just that for Jonathan.
Keep up the great work Holly.
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