update on my 3yo- APO on toddler reflux

[Anonymous]

My 3yo saw our pedi yesterday. She is very very good with sensory issues in kids and Kaden has been “unofficially” diagnosed with sensory processing disorder. Mainly with MAJOR hypersensitivity with oral input (and oral defensiveness) and tactile sensory issues (issues with clothing, socks not straight, etc. He is eating less and less and throwing more and more tantrums at meal time. He is also at the point that if someone is eating something he will run and hide in another room while gagging. He is THAT sensitive to food and food smells. We are being referred to Kennedy Kreiger Institute in Baltimore for a complete eval. and to get the help he needs, but the ped is pretty sure that we are dealing with sensory issues and that we can get them fixed. She warned me though, that Kade would get a complete eval for autism spectrum disorders as well. I’ve heard that some kids with sensory issues are incorrectly dx with autism b/c they become so frustrated at the table or with whatever sensory probs they have (that are unresolved) that they develop tics. For example, my son with cover his ears and repeat things over and over (songs he knows, etc) until you remove food from in front of him, then he is fine.

I just wanted to update everyone and hope that this post helps someone. I thought for the loooongest time that kade was “just picky” and heard for the longest time from friends, relatives, our old pedi that he will outgrow it. He is over 3 years old and lives on milk and crunchy food (crackers). My Dh and I offer him foods from all food groups daily and have every day of his life. It is only now that I realize he cannot help it and it’s not mine or DH’s or his fault.

Here is a good checklist that I found on SPD and SID:

http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html

[Anonymous]

Thanks for sharing the info. Ben has SPD issues too – mostly food related as well. He’s improved dramatically on a gluten and casein free diet though. Not saying that is needed for all SPD kids, but it helped us a lot. Ben was limiting his diet to only carbs and milk too, and then we discovered that those were the foods affecting him the most negatively!

Hopefully you all get some great help from Kennedy Kreiger!

[Anonymous]

Thanks so much for your reply! I am sorry you are dealing with sensory problems but it helps to know that I am not alone. I am eager to get to KKI and get some help. I know about the gfcf diet helping, but the problem is, he won’t eat anything. He will eat Lay’s chips and welch’s fruit snacks (both gfcf) but how healthy is that all the time? lol. I have the list from the TACA website of gfcf foods to give and have been pushing Boar’s head meats and things for lunch but he won’t touch it. Tantrum hell…

I hope that we can get some help soon. I am waiting for KKI to call to set up our eval. I’ll keep you posted.

jilly782008-03-25 15:35:26

[Anonymous]

Hi Jill, I hope you get the answers you need at KKI. It looks like Seth and Kaden are almost exactly the same age. I can’t imagine how hard that is for you. Seth still has reflux and sometimes I worry that he has some underlying issue too. Not to make light of your situation but Seth would live off of Ritz crackers, cheese and chips if I would let him. I think even at this age they sure know what they like.

Definitely keep us posted!

[Anonymous]

Sorry to hear. That’s great that you’re going to KKI- they really are among the best as far as feeding issues. One thing to keep in mind is that reflux and sensory issues and feeding issues often go hand in hand. When the feeding issues continue it becomes a viscious cycle with the sensory issues- they each make each other worse. I know that KKI is a team apporach, but you can also get him evaluated with an OT for the sensory issues. The problem with diagnosing autistic spectrum disorders at such a young age, from what I’ve read, is the high incidence of false positives. Hailey was going to see a developmental ped because of similar issues at age 2- She definitely would have fallen within the spectrum because of her other issues, but it is clear now that she does not fit this diagnosis, though she certainly has some severe sensory issues and persistent feeding issues. I think that the feeding stuff and sensory issues linked to reflux and persistent GI problems are often minimized. They really do need a targeted treatment approach IMO. Good luck.

s&h’s mum2008-03-25 16:32:10

[Anonymous]

Thanks ladies.

Lori, any advice on how to approach them with his history? he is a previous refluxer with milk intolerance and who knows what else he may be allergic to, he’s never been tested. I’m not sure how to approach a team of experts and I am scared they’ll ask what his behaviors are and automatically label him as autistic b/c he covers his ears and sings, etc. I want them to know that it is isolated to food only! He has hit all milestones on target, is verbal, social, etc. All of his tics are around food or during a conversation around food or in a restraunt. Today I had some dried fruit (washington apples by Sunmaid) and he didn’t want to try them. He’ll eat the Gerber baby dried fruit though. But b/c the sunmaid ones were “moist” he threw a tantrum and started yelling “I don’t want it I don’t want it” and ran from the table singing his ABC’s as loud as he could and left the rest of his lunch at the table. About half an hour later, I got him to come back to his lunch and he sat there and started eating it again but was tapping his hands nervously and anxiously on the table between bites.

[Anonymous]

Are you talking about how to approach a development ped or the feeding team? The feeding team will likely have had experience with this kind of thing, KKI sees really persistent cases so they should be up on how to handle things. As for a developmental ped, if they assess him first in the absence of food, ie in other interactions, then they would get an idea of what his typical behaviour is in a non-eating situation. From our experience, I just found that everyone was quick to label with some behavioural/psychological problem, but totally denied the reflux related issues. The psychiatrist we saw thought Hailey’s feeding problems were due to an attachement issue and my parenting! It wasn’t until I got hold of a really really amazing feeding therapist who saw tons of refluxers, that I found someone who was on my side. She believed that the feeding behaviour came from the reflux issues and felt that we needed to look at the whole picture. She used an approach, I think Toomey’s and also someone else who I can’t remember, that I really liked… it was gentle and started with a series of rewards for interactions with food. But Hailey started at 8 months old, and we still have food issues, especially food jags. Anyhow, after I saw her progress with this therapist I refused to be involved with anyone who minimized Hailey’s reflux and situation. Every professional we were involved with after that had to understand our history and consider it in Hailey’s treatment. We did get OT for sensory issues as well b/c they often go hand in hand with the feeding issues.

I really feel for you. It’s so hard to go through this. For what it’s worth Hailey wouldn’t eat any dried fruit if it was the only food in the universe… definitely texture. I’ve learned what she will and won’t eat and never force things, but try to progress her to at least allow other items on her plate and to touch or smell them.

Thais took Matthew to KKI, and I know she’s really busy but might be able to help if you pm her. Alternately, there’s another great forum for kids with more severe feeding issues, most tube fed and often with other issues, but it’s great as well: http://www.parent-2-parent.com/forum

Good luck.

[Anonymous]

Thank you!

I wonder if Kaden would benefit from being on a PPI for a while. When he was a baby he had reflux really bad and his pedi kept brushing me off and kept telling me to use Maalox. Somehow I got through his reflux using Maalox. He would not eat any textured foods until he was around 17 months old, only purees. Lately he’s been telling me he’s had dreams that he is choking on bananas (or whatever food it is) and I wonder if he’s refluxing! So much to wonder..

thanks for the advice!!

[Anonymous]

-Just an update- we go to KKI on 5/1 to the feeding clinic. We are also on a waiting list to see a dev. ped. I’ll keep you posted.

[Anonymous]

Jill…

I smiled while I was reading about Kaden running from the table singing his ABC’s because as a child I remember running from the table and singing a song I made up every single time my mother would put hotdogs down for dinner. I still can’t tell you WHY I couldn’t handle it, but I just couldn’t, I couldn’t be around them…even the smell just sent something off inside me.

The good news is that as I got older I was able to at least have them around me and now, as an adult, I can eat one every so often though they’re still not something I eat routinely! LOL

I’m glad to hear you’re getting set to go to the eval. If you’re concerned about how to go about making sure that they’re not jumping to conclusions (though I doubt that it will happen) tell them just what you told us…stress that it is only around food or food conversations. They’ll see the link just as well as we do, though, I think.

Good luck and let us know how it goes!!!

[Anonymous]

Thanks so much for your kind words! I am really hoping that we can get somewhere with his eating soon. It is so hard to watch and I dread mealtime with him! I will keep you all posted. 🙂

[Anonymous]

My Kaiden too has sensory issues around almost any kind of food. Does your son get occupational therapy? My Kaiden is strictily a G-tube baby. I used to feel that he somehow knew that when he swallows food or drink, it makes him very sick. He shut down completely to all food and drinks for such a long time. The developemental team he sees have me put him in his high chair periodically for “tastes” of different kinds of food. The only things my Kaiden will attempt are pudding, yogurt, and applesauce. He hates texture of any kind. I understand how frustrating this is. My Kaiden is being referred to Cinncinatti Children’s Hospital. God Bless you and your family. Hopefully you will some answers at his evaluation.

[Anonymous]

Taylor has sensory issues and servere speech delays as well. She is actually on the opposite side where she is hyposenstive, she is always putting things in her mouth, and loves to chew hard foods, she hates mushy wet foods. She cannot concentrate on anything for very long (much less than a typical attention span of a 2 y/o) since all she wants to do is chew on something. She still does not walk very stable and tends to trip and fall alot since she most likely due to all the GI issues does not have a sense of connection to the rest of her body. Anyways, working with an OT and a Speech therapy currently. Alexis was the direct opposite, where she was orally defensive and at that time I just thought she too was a picky eater. I’m glad there is so many people that are out there that completely understand and are willing to help!

[Anonymous]

Thank you both for sharing your experiences.

For the longest time I believed everyone around me that it was just “picky eating” and even our old pedi in FL told me he would grow out of it. Here we are almost 3.5 years old (this has gotten progressively worse since age 15-18 mos) and thankfully, this site helped me to start putting the peices together. Kade has tactile defensiveness too that really interferes with every day life. I can never keep socks on him and if he is wearing jeans, he is constanly pulling on the legs of the jeans and saying OUCH. He is so sensitive to clothing rubbing his skin that it feels like pain to him.

he will be getting OT when we go to KKI for feeding therapy.

[Anonymous]

Hey Jill, love Landen’s pic… he is a cutie pie. I was just reading this updated posted and saw how you talked about jeans making Kade say ouch. I have found some Levi’s at Cost-co that are woven and soft.. Cooper will take a good nap even when wearing them. I would give you my 24 month size if they would fit Kade but I am pretty sure they are too small for him. But if you have a cost-co close by maybe check it out. I bought Cooper 2 larger sizes after my mom got him his 12 month ones in Dec b/c they are so soft. I will be near where I got mine next week as we are visiting my mom and if you tell me Kade’s size I can see if I can get you some. I think for the jeans and shirt (it is a combo) it was like $13 or something really cheap like that. Cooper’s have held up great and they are pretty light weight so they could be worn in the summer too. Just a thought.

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