Desperately need help with 3 year old who drinks only formula and pediasure. Any good therapists?
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Anonymous
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We've been going for OT and FT for about two years, but only thing we got accomplished is drinking reduced amount from a cup and kissing/licking snacks (not yet consuming). We just took him to his pediatrician and he has lost weight since last year. So we allow him to drink through bottle again in the morning and in the evening so he can gain weight (hopefully).
He seems to have SPD (sensory processing disorder) as he is reluctant to touch unfamily taxtures and will cry if he goes to the beach because he hates walking on the sand. His pediatrician mentioned someone who went to denver for similar case came back with some good progress. But isn't there anything closer? I hate to have my family live separately for couple of months. Are any of you familiar with a therapist who has dealt with kids who have extreme feeding issue with SPD? |
Anonymous
| We tried the Language Experience. They did have good therapists but my son never progressed. Still I think they were good and I have a very difficult child. He didn't start regularly eating food until he was 11. Good luck OP. |
Anonymous
| We take DC to Anne Reynolds at ITS for sensory feeding issues. DC has always been willing to eat a little, so we aren't in the same boat, but we have made some progress. Our pediatrician thinks she's a miracle worker. http://www.its-dts.com/ourstaff.html |
Anonymous
| Kennedy Krieger Feeding Clinic. |
Anonymous
| would a gtube help take some of the pressure off so your DC could put on weight and get nutrients (there was just a WaPo article about a kid like yours who wound up with scurvy, and others who get rickets) and just work on eating for pleasure? |
Anonymous
PP here. I asked this question many times. Prevalent thinking was that if you could keep your kid alive without it, that was best. My child was weightless down to the hundredth of a percentile because his weight was so low. But I kept it consistent. Thing with these conditions is there is no eating for pleasure because there is nothing pleasurable about it. |
Anonymous
I don't have personal experience, but I listened to a workshop with a speaker from Kennedy Krieger and they spoke about the very thing you're inquiring about. It might be a great fit. They even have inpatient. |
Anonymous
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My daughter was close to her third birthday and only eating two flavors of purees and 24 is of formula a day. I had tried everything. I finally got her enrolled in a PPEC daycare center. Google that and see if there is one in your area. Easter Seals may be able to help.
My daughter's issue was strictly behavioral and was control issue. No one knows why. It took putting her in a different environment with a CNA who had experience with feeding issues. They had her feeding herself three meals a day in a matter of weeks. After four months they got her drinking regularly from a cup so that I could get her off the bottle at home too. It is such a huge relief for our family. Children's National also has a feeding program but you have to drive them there for every meal for weeks. Good luck to you, I know how hard this struggle is!! |
Anonymous
| I see others mention KK feeding clinic. I may have got my wires crossed when I thought it was at Children's. |
Anonymous
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KKI has different levels at their feeding clinic. Some kids do inpatient, some outpatient. Some in outpatient are there everyday, some once a week. It depends on how much support you need and request.
My DD was very underweight and eating only a few foods and had significant motoric issues that impacted her chewing and swallowing. They did heavily recommend a feeding tube but respected our decision to try alternatives first. We went twice a week for six weeks and worked with an OT on feeding techniques for us and food repertoire for her with intensive rewards program. We were able to avoid the tube (not saying that's not a good option, but we wanted to avoid another surgery for this kid). |
Anonymous
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Thank you all for the reply. Fortunately, with the bottle, we realize he can drink 2x 3x what he would drink from a cup. So we are going to buy a good scale and measure his progress. However, we will still have to treat his SPD. My wife is looking into going to STAR institute in Colorado and I've been looking into yourkidstable.com to figure out what to do. The person who runs that website replied to our comment to try the sensory bins, so we are trying that right now. But our son would only use his finger, not his whole hand. So I am playing find the toy game where I bury it deep enough so he would have to dig deeper.
We've taken our son to the Kriegers for evaluation. It was simply in a room with many "specialists and doctors" who observed him and after costing few grand just for that evaluation, we felt we didn't get anywhere. We had planned to enroll him in their intense therapy sessions, but the therapists and doctor's feedback on Krieger's was negative. In fact, the mother with the similar situation I had mentioned had gone to Kriegers as well, but she was not happy with them (we are trying to get her number from the doctor so we can get more feedback of the both places). I had thought our situation was desperate, but hearing others with worse situation overcoming their obstacles gives me hope. |
Anonymous
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Our friends took their child to John Hopkins and he was finally eating some solid foods by age 5.
FWIW, my son did eat some foods, but stayed on formula until age 5 and ate pureed baby food fruit until 9. We have managed to keep him at 50th percentile for 10 years, but even as a teen, he has issues with food and SPD. He jokes that my fall back lunch for him is yogurt, applesauce and juice. I joke that he has only moved on to chicken nuggets! But his eating is actually better than our jokes. Hope it gets better sooner, OP. |
Anonymous
| Sorry, that's the Florida link above, but poke around since our friends went to Baltimore. |
Anonymous
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In terms of sensory integration issues, does the OT work with your child's overall body at all with such things as deep compression in rolling up in different fabrics, "brushing" with a particular kind of brush, jumping in a sensory box of balls etc. Have you also ever been encouraged at all to use a soft brush in terms of any special oral mouth stimuli on gums, tongue, inner cheek to help desensitize the oral motor cavity? I know one of my nephews had very limited eating choices until peer pressure sort of hit in an suddenly he liked pizza etc., and now as a young adult he is quite "a foodie" and can order with a very refined taste, but a lot of it was definitely the social aspect of eating that came with peers as he got older and moved out beyond just the family circle. In one sense, I do wonder if there is ever "a peer group modeling" program of just letting little kids be together say for play time which would just overlap into eating time when one could sort of just pick up what is on a table to see if there might not be "an inquiring eye" or some tasting done when not at the family table with Mom and Dad "watching and counting the bites or sips. |