I want to scream - feeding issues - Mothering Forums

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#1 of 10 Old 10-30-2008, 12:31 PM - Thread Starter
 
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This is mainly a venting post more than anything. My DD has been diagnosed FTT for the last few months, a asanine diagnosis, but "slow weight gain" does not have a diagnosis code. Almost everyone, ped & GI included, thinks we are dealing with severe feeding aversions rather than any underlying medical condition, especially since the tests and bloodwork I've agreed to so far aren't turning up anything more severe than anemia.

From day one, I have been pushing for a referral to a speech pathologist for a feeding evaluation. I finally got that, and then had to wait 3 months for an appt. We went to the appt. today, and they had no record of us in their system, and the therapist wasn't even on site. I WANT TO SCREAM! I am now looking at waiting another 3 months for an appt. Sometime in January. Meanwhile, she keeps dropping further and further off of the growth chart.

Added to this, we just realized that our insurance does not have any speech pathologists in our provider list within a 50 mile radius. A 50-mile radius of us includes both Philly and NYC. This is ridiculous, and I just want to cry.

I hate our health care system, and my hubby is a doctor! Preventative care is nonexistent. Go Obama!

 

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#2 of 10 Old 10-30-2008, 12:47 PM
 
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How incredibly frustrating!

Are there any occupational therapists in your area who do feeding therapy? There are a couple of parents on this board who have had their kids in feeding therapy and I'm pretty sure it was done by an OT, not a speech pathologist. (I'd still go ahead for the SLP evaluation, but an OT might be able to get you in faster.)

Have you asked to be put on the cancellation list? You can call weekly and find out if anyone has cancelled an appointment. I would think that since THEY screwed up, they should be willing to look a little harder to get you in.

Finally, do you know about the book "Just Take a Bite"? It might be worth reading to see if there are any things there you can do at home to help.

I'm hoping that some of the parents who have kids with food aversions can chime in and give you some tips too.

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#3 of 10 Old 10-30-2008, 01:16 PM
 
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Welcome to MDC, nyssaneala, and lots of s for you.

I'm one of those moms with a kiddo with food aversions (and when I say food aversion, I mean 100% g-tube fed). Grace was repeatedly diagnosed with FTT before she came to us in April of 2007. I know it's a frustrating dx because it kind of is lumped in there with neglect cases (Grace was a combo of organic and inorganic FTT).

As far as the growth chart: I'd encourage you to toss it out. It is not usually very helpful for those of us with kiddos with special needs.

I didn't see you mention how old she is, or if there are other issues at work that might make feeding difficult. Can you give us some more information so that we can be better supports to you? I'm betting a couple other of the moms will pipe in if you change the title of your thread (in case you don't know, you can do that by going to "edit" and then clicking "go advanced") to reflect the fact that you're dealing with feeding challenges.

I'm so sorry you're dealing with this. I hope we can be a good support for you.

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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#4 of 10 Old 10-30-2008, 02:40 PM
 
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Hi from a fellow mama of a "slow to gain" baby who was once incorrectly diagnosed with FTT

We eventually (at 11 months old) got a diagnosis for Connor, he has a genetic syndrome (link in siggy) but it was HE11 getting him to eat and gain weight and get the drs off my back. They wanted him on a feeding tube from the time he was 4 weeks old...

How old is your daughter? What does her current diet consist of? What have you tried? What were her reactions? (physical and emotional) With Connor nearly all of his problems were caused by physical malformations of his craniofacial area (mouth, jaw, palate, throat, airway) and digestive system. We eventually found ways to help him get the most calories with the least effort (and the "we" I refer to was me and several *angels* from LLL...the drs and therapists all wanted to take the easy way out and just tube feed him) I don't mean to come off as anti-tube, some kids truly do need it, but Connor did not, thanks to the enormous team effort that went into caring for him.

I'm so sorry that you're hitting road blocks. As far as appointments, get yourself on a cancellation list, call daily if needed to try to get a sooner appointment. Get your name on the appointment list at as many facilities as your insurance will cover (at one time we were on the feeding therapy list at three different children's hospital, two of them quite a drive from us. Just recently he was on the speech therapy waiting list at three different locations, two public and one private) Whoever calls first is who you go see and you cancel at the other locations.

You can also get your dr to call, they often have "back doors" to getting earlier appointments. Each clinic or therapy team keeps a certain number of appointments reserved for acute/emergency cases and sometimes a dr can get you one of those appointments. You calling the central appointment line won't know it's available.

GOod luck and keep us posted!!!

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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#5 of 10 Old 10-30-2008, 08:38 PM
 
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All of the kids I know who have feeding therapy had it done by Occupational Therapists. I know a few ST do it too but mostly OTs because of the sensory nature of it, rather than the mouth formation (for many children.)

Early intervention specialist and parent consultant since 2002.
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#6 of 10 Old 10-30-2008, 11:24 PM
 
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DS had an OT thru the EI program do feeding therapy. That was a waste of 1 year of time, she had no clue. And their speech therapist was no help either. She decided her services were not necessary after a couple visits. (what?! - he's still not eating and you're done?!) Then I finally got fed up, called around to all kinds of therapists. Turns out that none of the good, recommended ones were "in plan" (we have PPO) and any non-recommendeds who were "in plan" were months backed up on their waiting lists. I finally found an SLP (speech language pathologist) who was highly recommended, had no waiting list, and came to the house for therapy, but she was not on our insurance plan. Whatever. We paid the upfront costs and got minimally reimbursed (flexed the rest). It was so very worth the money. She knew her stuff and more! She addressed the sensory and oral motor issues, as well as some minor speech issues. She also knew a little bit of general OT for other issues. We used her services for 8 months, when I was able to take over from there.

I found that the SLP was way more knowledgeable than the OT in identifying and treating DS's oral issues. I had suspected he had oral motor issues as well as the sensory stuff that was already obvious. If you suspect anything in addition to sensory issues, then an SLP could be more helpful. If it's just sensory related, then an OT should be able to take care of it.

In looking for a good therapist, what I found was that feeding is an additional field of study for OTs and SLPs. It's apparently not covered in either regular curriculum. Apparently the studying OT or SLP has to go out of their way to learn it. So, not all OTs and SLPs know how to do feeding therapy, much less how to do it well. You really have to call around and ask other therapists who they recommend. Ask any physical therapists or doctors you know.

Some other thoughts... Is there some way you could find a good out of plan therapist for now, while you are waiting for the one that's in your plan? Do you have any reimbursement for out of plan costs? Can you set aside some flex medical plan funds for next year for this purpose?

(Yes, DO change the title of your post to reflect feeding issues.)

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#7 of 10 Old 10-30-2008, 11:31 PM
 
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We got an SLP and an OT for feeding issues (among others). His were combined with the fact that he just wouldn't open his mouth. They helped a lot. Now he's weaned (my own health issues required that) but he's doing very well on a 100% solid meal. He's now gaining weight (1lb! but it's better than what he had be doing which was staying even at 19lbs for 8 months) and sleeping a lot better!

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#8 of 10 Old 10-30-2008, 11:53 PM - Thread Starter
 
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There is such great advice here!

For more info: DD is 11 months old, and still largely breastfed. I've noticed more recently that she *wants* to eat more table food, she just physically can't seem to do it. It breaks my heart watching her try to eat. And then frustrates me unbelievably when a few minutes later she gives up and refuses the purees that she can eat. But, totally understandable.

 

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#9 of 10 Old 10-31-2008, 09:41 AM
 
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this my sound obviose but has she been cheaked for a tounge tie, a tie will prevent her from being able to move the solid foods back properly. It would also posibly cause some problems with nursing as well.
If she is not dealing well with solids is there any way that you can increase the amount of liquid feeds she is getting , ie more nursing, increasing your supply or supplementing with donor BM or Formula.
Most solid foods are lower in calories and take more effort to eat. At 11 months she is still completly OK to be EBF or suplumented with formula to get rid of the FTT.
My youngest was well over 1 before she ate much solids and was BF and formula supplemented untill she was 2.
I consider any solids under 18 months to be experimenting and that the calories for growth should be comming from the liquids.
I would certainly keep trying to get into a OT or SLP but even some of them really have no idea.
We did alot of trial and error to get Megan onto solids - but in the meantime we increased the amount of calories that she got from liquid sorces, so the solids where for play and there was no preassure to eat them.
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#10 of 10 Old 10-31-2008, 09:44 AM
 
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If she seems to not physically be able to do it, then I would look for an SLP (one who also does feeding issues) rather than an OT. This sounds very much like my DS, who had some oral motor issues and hypotonia in the mouth. The EI folks didn't even notice these issues and so they did no work inside his mouth - with no results. I suspected there was something wrong with his mouth (for eating) as early as 8 months. He pretty much gagged and threw up anything he would even try. Then he stopped trying. I started looking for help at 10 months, and EI took 2 months to even get here. In hindsight if I had it to do again, I would go directly to an outside therapist. The EI program in your area may be better and faster than the one here. Some ladies on this board have had success with their EI program. You can also try that in parallel with any other therapy you get privately. It's worth trying anyway.

BTW, my DS also had trouble BF-ing from birth. He did lots of chewing on me as a defensive thing against something being in his mouth.

In any case, listen to your momma instincts. If you think she can't physically eat, then try to find a reason for it, even if you get some "nothing wrong" answers at first.

If she is getting frustrated trying the purees, I would not force them. In fact, forcing any food has always led to backward progress for us. But - since she seems to be wanting to eat, try to get a therapist soon so you can work using that desire to eat, but only when she can physically do it. No sense trying until any physical issues are being worked on. Otherwise she'll just get frustrated and quit wanting to eat.

Keep doing what is working and supplement if you have to any way you can, until you get help. Can she take a bottle? If not, can you try working toward a cup? That way you can pump or give formula for supplementation if she's not BFing well. Perhaps LLL can help a little here.

Get yourself strengthened any way you can - it's a long hard road ahead of you. The good news is the sooner you can address this properly, the easier it will be in the long run for her to eat. If this is your first child, don't let anyone tell you that "you're doing it wrong" or "your BFing is causing her problems", or even worse "she'll eat when she gets hungry". I had plenty of that kind of attitude from others, particularly family, and it's all wrong. You know what's best for her.

I just read some of your other posts. The sippy is good for giving pumped milk. Before he was a year old, I only had a manual pump and was doing a lot of pumping. I felt weird buying a real pump when he was already a year old, but you know what, it was the best thing. I was able to add a tiny tiny bit of either baby rice or baby oatmeal cereal to the milk and feed it to him by spoon, as he wouldn't take pumped milk in a bottle or sippy. Then, I started thickening up the oatmeal -excruciatingly slowly, over many months-. I think that helped him ease into texture a bit. However, I stopped and eased up on texture if he ever seemed like he was having trouble.

One thing that helped my DS gain weight was getting him on full fat, smooth textured yogurt. I started him on it at 18 months, though I probably should have done it sooner. Just be sure it's very very smooth. I gave yogurt to DS twice a day, morning and night. It actually didn't slow down his BFing at all to get all that yogurt. He was hungry, he just couldn't eat many things. At 18 months, he was BFing a lot, eating the yogurt, and eating the tiny bit of cereal in my pumped milk. Occasionally he would eat watered down and very smooth sweet potato puree, just for variety. That was it. Anything else and it was gag-city.

You may find that you have to give up lot of preconceived notions about feeding. At some point you will just want her to eat anything, rather than some ideal set of food you think would be great for her.

Kim sewmachine.gif mama to DS autismribbon.gifreading.gifblahblah.gif12/2005, Pepper kitty cat.gif, and angel1.gif 10/03, angel1.gif 1/05; homeschool.gif

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