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Forum: Children with Special Needs

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  #1  
March 22nd, 2010, 08:54 AM
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I thought it was time I search for some support, more for myself than anything, and say hello here.

My DS (3) has been different from the start. He was very, very quiet as a baby and very lazy. He didn't show interest in even trying to crawl or walk until after he was one, he didn't even have a second tooth until he was after one. A pediatric dentist has said his teeth are delayed by at least a year. He still doesn't have all of his baby teeth. He hated getting dirty when he was younger to a point where he would completely freak out and nothing short of a bath would calm him down. He wanted nothing to do with baby food or solids and choked on most things. We did eventually confirm (after changing pediatricians) that his tonsils were too big and chronically infected. They were removed August 7th, 2009, just 5 days after he turned 3. The ENT said they were so badly scarred that they had fused together. It was so severe that he could have eventually suffocated. That has helped his eating in that he doesn't choke now and he's no longer in pain, but he won't eat. It's like he's terrified of food.

Beyond that his speech isn't right. He can't get some letters out at all and those that he can it's like they blur together. I understand him 99% of the time, but people that don't see him often or are just meeting him can't understand him. He is better about being dirty, but it took a lot of patience to get him there and he still wants a bath as soon as he's done doing whatever resulted in the mess. Usually it's using markers or something along those lines since he doesn't eat. He still hates dirt and he wants things arranged a certain way in the house.

His pediatrician hasn't helped me in figuring out the extent of his problems or how to help him so I'm trying to get him into a new office that has a doctor with more extensive certification. I'm also taking him into the local elementary today to see if I can get him into the 2010-2011 Pre-K class. It's my hope that being around other kids will help nudge him forward and he would have a speech therapist assigned to him there that would work with him daily.

DH has been very pushy about the whole thing and acts like DS should just snap into perfection and have no problems at all. He doesn't think any outside help is needed for his speech problems or eating disorder which makes it really hard. His family acts like I'm neglecting my son and that's why he has these problems. They tell me he's going to die because I won't feed him when he screams at food and has literally run from it at times. It isn't that I'm not trying and I want so badly for him to be healthy. I just don't know what to do anymore beyond looking for outside help in new places. It feels like I'm failing him.

I hope you don't mind my coming here and thank you if you took the time to read such a long post.
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  #2  
March 22nd, 2010, 09:02 AM
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First of all, Welcome to the SN board!

I think it's a great idea to talk to another pediatrician. I'd also ask for a referral to a developmental pedicatrician at your area Childrens Hospital. They specialize in these things and will help you. It sounds like OT and ST are needed to me.

*Hugs* to you, hon.
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  #3  
March 22nd, 2010, 10:15 AM
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Thanks for your response. I really do appreciate it.

What's OT? Occupational sounds work related to me so it's sort of confusing and I learned a long time ago that Google is not my friend.

I just got back from the local school that does Pre-K and we should know within a couple of weeks if he'll be allowed to attend and work with their speech therapist. In our district if they have special needs the therapist is assigned to them and goes with them to all of their classes in addition to individual sessions so I think it would help a lot. It would mean about 4 hours with the specialist a day in addition to whatever they instructed me to do at home to help him further. They have other specialists there as well, but until we know the extent of his needs that's the only certainty.

I'm still waiting to hear back from the pediatrician to see if he's been accepted into the office since they're taking new patients on a case by case basis. If they won't then I have a few others that I'll call. I've been focusing on pediatricians that have done additional studies in developmental and behavioral problems so hopefully they'll be a lot more inclined to help and not just blow things off.
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  #4  
March 22nd, 2010, 10:57 AM
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OT helps with eating issues, sensory problems, etc... My DD takes OT to learn how to eat. I hope this new ped takes him. I really do think he's benefit from therapies! Have you thought of getting him private therapies from childrens hospital?
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  #5  
March 22nd, 2010, 11:04 AM
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Welcome to the board!! I'm sorry it's been such a hard road getting help with your son, that is SO frustrating. I agree that ST and OT are definitely called for... I was the same way when it came to OT, but what it is is basically therapy that works with your child for fine motor, oral motor, and sensory issues. My son's been in OT for nearly a year now, and we've worked through feeding issues (he was refusing anything with more texture than stage 2 baby food at 15 months, now self-feeds table foods!) and it working with him now on things like stacking blocks and pegs and doing 2 handed tasks.

I think it's wonderful that you have been able to find pediatricians that have done extra work in developmental studies, and really hope you get in to the one you're trying for! That completely stinks about your DH's opinion and the lack of support. You have NOT failed, no way no how! Sometimes, there is only so much we parents can do no matter how much we try, you know? That's what specialists are for, to help show us how we can help our kiddos. You are doing the BEST thing you can for your son by being his advocate and looking for help.

I'm Kel, by the way. My son Danny was born with a virus called CMV, and as a result he's got mild global delays, as well as low muscle tone and a profound hearing loss (aka, he is deaf) - plus he's considered "high risk" for behavioral and learning disabilities later in life, but is too young right now to tell if they'll develop or not. He has cochlear implants that are helping him hear and access speech.
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  #6  
March 22nd, 2010, 11:17 AM
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I'm glad that the OT is helping Danny. It sounds like what my DS needs from what you've described. The pediatrician I'm leaving has been treating him almost like an anorexic, but it was when we got to thicker, textured foods that he began having trouble with him. We've finally gotten to where he'll eat thin oatmeal and tomato soup if we make it with milk. Beyond that all he'll do is try things he can lick. For example, he'll lick ketchup off of a fry, but not put the fry in his mouth or he'll lick the jam off of a sandwich, but not put the sandwich in his mouth. We know his tonsils can't choke him anymore because they aren't there, but orally he hasn't moved forward the way that we had hoped. The biggest difference aside from no longer choking has been accepting warm foods. When his tonsils were still in he would only eat cold foods.

ETA: I should add that we've been told to flat out take away the foods that he eats to force him to turn to table food. Obviously I haven't done that because I'm not going to let my son starve, but you have me wondering if I should let him move back to the baby food that he ate previously? The pediatrician said no, but I would think it would provide more nutrition than oatmeal and tomato soup.
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Last edited by MamaAnna; March 22nd, 2010 at 11:26 AM.
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  #7  
March 22nd, 2010, 11:35 AM
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Ugh! I can't believe you were told to take away the foods he eats to force him into table foods. I'd see if you can slowly introduce some new tastes to him through what he's already eating. I'd be hesitant to say go back to baby food, but if you have to, it might not hurt for the time being. What about drinking Pediasure or something similar to get him some more nutrition too? Or what about mixing some of the baby food into oatmeal ... and will he eat any other kind of broth soup, maybe make a vegetable soup and strain out the veggies?

I'm no professional, but it sounds to me like he's definitely got some sensory issues, and combined with the memory of how it was eating with his tonsils, that's probably a huge block for him right now. Danny went through a phase where he wouldn't put good into his mouth either, and OT was amazing in getting him to work past that. Will he put toys in his mouth at all? You might try starting with something soft and see if he'll get used to that in his mouth, and then work up to harder things, before you go with solid food. I know our OT was about to order some specific rubber toys of varied softness that we were going to use to help Danny work on putting things in his mouth. (Then he took off and we didn't need them - however, his aversion was muscle tone related, not sensory.)
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  #8  
March 22nd, 2010, 12:07 PM
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He will put some toys in his mouth, but not past his teeth. Like he'll bite the arm of his favorite stuffed toy and walk around being goofy, but he doesn't bite it so far down that it goes past his teeth. He barely has a grip on it.

I'll have to try to add some things to hit oatmeal to see if I can sneak it past him. It'd definitely be an improvement from straight oatmeal. With soups though he's really difficult to work with. The only reason he started eating tomato soup was he realized it looks like ketchup. He actually calls it ketchup soup. I've tried straining soups and other cream soups and he wanted nothing to do with them. Maybe it's the salt content? Or maybe I just need to dye everything red so it looks like ketchup.

Pediasure is something I've considered, but I'm really nervous about. When he was on formula the extra iron that they put in it caused him a lot of dietary problems. He never got over being sick and was horribly constipated all the time so he was weaned off of it early and given extra stage 1 food and vitamins to make up for it. Since then I've tried Carnation breakfast shakes at the recommendation of the pediatrician and they give him horrible diarrhea. He's fine with milk, it's something in the mixes that are getting to him. I've wanted to try the Pediasure, but at the same time I haven't wanted to make him sick and make backwards progress. Know what I mean?

ETA: The nearest Children's Hospital is almost two hours away and requires referrals from a pediatrician before they'll see us so I'm at a dead end on that until I can get a referral. The most the office I'm leaving would do is give us their phone number which they obviously don't consider a referral.
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Last edited by MamaAnna; March 22nd, 2010 at 12:10 PM.
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  #9  
March 22nd, 2010, 12:19 PM
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I definitely understand what you mean about the Pediasure in that case! I'd be really hesitant too. What about mixing in a liquid vitamin into a drink or food instead maybe? Just tossing out possibilities until you're able to get some OT help.
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  #10  
March 22nd, 2010, 01:21 PM
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I have an OTC dietary supplement that he takes for me once a day. It smells foul so I'm sure it tastes bad, but he got used to constantly being on antibiotics, Tylenol and Motrin (alternating every 3 hours) almost non-stop for two years that I've told him it's his medicine so he takes it for me. I had to get the one without the added iron which I don't like, but he still can't digest it. I haven't seen any liquid iron supplements that are supposed to be gentle on the system. It's another thing I'm hoping a new pediatrician may be able to help with. I know he can't be the only child that has trouble with iron like that.

I did come out of the day with at least some good news. I'd never heard of an occupational therapist before so I called the insurance company to see if he needs one (or any kind of specialist) if it would be covered at all and it would. They would cover it 80/20 like anything else up to 52 visits a year which will definitely help.
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  #11  
March 22nd, 2010, 01:58 PM
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I didn't read this whole thing, just to be totally honest. But from what I did read, I'm wondering if maybe it's Sensory Processing Disorder or something of the like? My daughter will only touch a few very bland untextured foods, and she has Asperger's Syndrome and Sensory Processing Disorder.
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  #12  
March 22nd, 2010, 02:34 PM
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That's okay, I realize it got a bit long.

I broke my no Googling rule and looked up SPD. I found something on Oral Input Dysfunction and aside from toothpaste it fits him perfectly. It took a LONG time to get him to cooperate for toothpaste though. It's only been a year or so that he's been willing to let me brush his teeth and it's only with a specific toothpaste. If I do it wrong at all then he flips out and won't let me near him for the rest of the night.

Thanks for pointing that out. Whatever they end up diagnosing him with I just want us to start getting the help we need to move him forward.
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  #13  
March 22nd, 2010, 04:19 PM
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That's GREAT news about your insurance!!
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  #14  
March 22nd, 2010, 08:15 PM
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sounds like Sensory to me too. NOt that I have a ton of experience there but I have 2 friends with kdis that are sensory babies, One was sensory seeking the other was sensory avoiding (sounds like your son)
I hope you are able to get some help for him. I would also call your school and tell them you want him evaluated. ECI handles under 3 years and the school system takes ov er 3
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  #15  
March 23rd, 2010, 03:48 AM
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Thanks, I'll call the school and see if I can get him in for an evaluation. Hopefully it's something they could do soon.
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