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Thread: Can't catch a break here...

  1. #1
    danellsar is offline INCIIDer - A Community Creator
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    Default Can't catch a break here...

    Ds was evaluated by EI today. The folks who came out all agreed that he DID have a feeding issue, definately delayed in that area, but not ENOUGH of a delay to qualify for any services. Argh!!!! So now we're stuck with paying for private OT or else nothing. How small does a kid have to be to get some help? How many times does he have to get sick before someone somewhere will do something about it? The medical insurance says it's NOT a medical issue, that it's behavioral and they won't cover it. EI says it IS a medical issue and that he SHOULD be covered under our medical insurance for low muscle tone and also for his overbite. Either way, NO HELP FROM ANYONE.
    Ellen

  2. #2
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    I just went back and looked for a prior post to obtain some more information on your son's issues.

    Your son did eat baby food so he is able to swallow food, which is good. Your son is very much like my son Jack. He only ate baby food until last August when he was also 2.5 years old (gagged on anything with texture). I took him to a feeding clinic and they ruled out Jack having a physical reason for his refusal to eat solids. (He too started to push us away when offering baby food, but I held his hands and fed him anyway). The nutritionist told us that as long as he gets two carnation instant breakfasts a day that will meet his nutritional needs. They advised to obtain the services of an ABA and OT (as Jack demonstrated he was orally sensory defensive). I have to tell you that the OT that we had did absolutely nothing for Jack. He still refused to eat. The ABA worked in no time though, so if you are going to spend money you may want to look there first.

    The ABA behaviorist developed an intense feeding program for Jack, which started on day one with her presenting to Jack over and over again a spoon full of diced fruit (gerber baby food kind) for one hour. Jack would refuse over and over again. After one hour Jack's hands were held and he was forced to eat it, which he did. Day two Jack protested less and willingly took the spoon full after one hour time. The next day he ate half the jar. One week later he was readily accepting the entire jar of a variety of diced fruits. They moved on to yogurts (all different flavors and textures) and Jack now eats finger foods (cheese puffs, chex mix, etc.) on his own.

    ABA protocols are different for each child, so an ABA may very well start out with using vibration toys or tooth brush around your son's mouth to desensitive him etc. My oldest son Jimmy who is autistic, and has low muscle tone around his mouth started to use a straw by drinking yogurt (regular yogurt, not the drink) through the straw. The consistency of the yogurt was thinned out over a period of time and he now drinks a Danimal yogurt daily. The muscle tone in his face has dramatically improved -- that was done via an ABA protocol in conjuction with an OT consultative model. Jimmy has always been a great eater though, so that was never an issue.

    As your son's weight is very concerning I think your plan of action should include his pediatrician getting on the phone to your insurance carrier to advise that your son's weight dictates he needs treatment asap. The idea is to avoid the very costly and invasive feeding tube. It also helps if your pediatrician can give your son a diagnosis -- EI will do very little without one on their own. They actually wanted me to "ask" my son Jack's pediatrician to say Jack "may have PDD" so they could provide him with services. Jack's pediatrician had no problem writing whatever they wanted because he knew Jack needed ABA therapy to get him to eat and if this was the way he could secure him those services then why not.

    ABA worked for my son -- definitely worth looking into, it may be an appropriate therapy for your son's situation also.

    Good luck!

    - Julie

  3. #3
    danellsar is offline INCIIDer - A Community Creator
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    Julie- Thank you so much. What a hopeful and helpful post! Our ped is very on board. He started all of this by referring us to a ST and to the OT for the initial evals. All say that ds is SID and orally hypOsensitive and low tone in his face and mouth. The catch is that ds is also considerably ADVANCED in his speech and language (at least 1 year advanced). Therefore he doesn't qualify for a speech (ST) based feeding program. The insurance company turned down the OT because they are trying to say that this is not a medical problem, it's a behavioral problem and they don't cover that type of therapy. The reason we were having EI come out was because the insurance won't pay and we were TOLD that EI would. Unfortunately they say he's not enough of a delay to qualify (6-9 mos delayed and he'd need to be at least 12 mos delayed). Whatever they say, he still needs help.

    Ds is now 2 years and 6 mos. He weighs 24 lbs. and is about 3rd %ile for weight. He's around 10th%ile for height. He has been below 0%ile and has never been higher than 5th%ile in weight since 2 mos old (normal birth weight). He catches every bug that goes around and is sicker longer than any other kid. He will eat finger foods but only if they are room temperature and only if they melt in his mouth, no chewing needed. He eats no veggies and almost no meats, a few fruits. He has an extremely limited diet and will not readily try new foods.

    Ugh.
    Ellen

  4. #4
    trek is offline INCIIDer - A Community Creator
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    ELLEN~just sending hugs. ugh.

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    Default Oh I hear you

    We have had issues where people acknowledge that there is a delay in a certain area, but not so much of a delay that they are going to do back flips to get her help.

    frustrating. good luck!

    Leslie M.






    Quote Originally Posted by danellsar
    Ds was evaluated by EI today. The folks who came out all agreed that he DID have a feeding issue, definately delayed in that area, but not ENOUGH of a delay to qualify for any services. Argh!!!! So now we're stuck with paying for private OT or else nothing. How small does a kid have to be to get some help? How many times does he have to get sick before someone somewhere will do something about it? The medical insurance says it's NOT a medical issue, that it's behavioral and they won't cover it. EI says it IS a medical issue and that he SHOULD be covered under our medical insurance for low muscle tone and also for his overbite. Either way, NO HELP FROM ANYONE.
    Ellen

  6. #6
    Join Date
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    What state are you in?
    Each state should have a federally-funded Parent Training and information center that should be able to help you fight EI, if you would choose to do that. if you tell me what state I will look yours up.

    many states EI programs are not well funded so they may just be trying to avoid him qualifing if he is boarderline. You should also be able to fight your insurance comany becuase at 3% weight the feeding should become a medical issue. is your ped willing to help you fight the insurance company on it?

    denice

  7. #7
    jeninnc is offline INCIIDer - A Community Creator
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    Can you appeal their ruling? In our county, if you disagree with an evaluation, you can have them pay for a private 2nd opinion, which they have to consider. Read your handbook and see if you have anything that applies to you like that.

    Hugs, I know it is SO frustrating.

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