Hi everyone,

I'm Lisa, mom to a just turned 4 year old DD. I've known Annika had issues since she was 5 months old, and have been trying to get help but DH & I are usually on our own with this.

Sorry, this will be long...

I had Annika evaluated at my own insistance when she was a toddler because of her eating problems. She gags and vomits on anything is not pureed or crunchy. EI did not dispute that Annika has Oral Sensory Integration, but they labeled her as "functional" and could not help us in any way. The case worker felt so badly about it, that she referred us to our local school system when Annika turned 3, and she has been in speech therapy ever since. EI wasn't concerned with Annika's good days and bad days. Some days the sun is too bright, her legs hurt, her ice cream is too cold, everything is too loud... you get the picture.

DH is not supportive, and he buys into our Ped's advice that since Annika eats BOTH pureed and crunchy food that she does not have SI, and that Annika is just "picky". This leads dinner time to be a living nightmare in my house. I'm nearly at the end of my rope. Annika will only eat fish sticks or chicken nuggets at dinner time, and she is sick of both of them but is not able to eat anything else of protein.

To make matters worse, Annika has Breath Holding (grand mal) Seizures when she is very frightened or hurt. This is involuntary, just like someone who faints at the sight of blood. It happens instantaneously, not like she holds her breath too long and then passes out, and is NOT a behaviour problem. Her Neurologist thinks she'll outgrow this by Kindergarten, but it can't be soon enough for me and all the gray hair I have acquired. Annika is also finally outgrowing debilitating separation anxiety, and has been able to attend private preschool by herself without mom or dad waiting outside the door.

Annika's speech therapist has been promising to get us a consult with an OT in the school system to go over some of these SI issues. This has been months, and nothing is happening. Annika's very dear private preschool teacher has finally confessed that Annika is having problems at school, she is constanting complaining she is being hit by the other kids, and this is not the case. On bad days for Annika, a slight unintentional bump can seem like someone is hitting her. I don't want Annika to lose her place in this fabulous preschool, and I don't know what to do.

Does anyone have any practical ideas for coping with SI, or getting SOMEONE to take me seriously and to get some help? You'd think it would be wonderful to have a "functional" diagnosis, but it is awful when you're nearly completely on your own.

If you're read this far, you're a saint. I really am desperate for practical advice and just feel backed into a corner with no where to go. I'd appreciate any support or advice that can be offered.

thanks,
Lisa

Hi Lisa,

I thank you for your post in the welcome section! I am so thrilled to have Desertmom start this forum for us so that we can help each other out and be supportive.

I don't know anything about the breath holding but you certainly do and I hope others can also help you in that area.

I was thinking about the food and eating. DS only eats things that are red. Steak cooked MR, strawberries, watermelon, Kosher hot dogs with ketchup sometimes. Oh yes, and a brown waffle with tons of butter.

I have noticed a few things. All bites must be extremely small or else it comes out. I don't try games or designs for the food. I just put what I pray he will in front of him and also provide a DVD for sensory. DH gets all kinds of mad when DS won't stay seated or wants to sit with me. It must be the guy thing. My most important goal is to get the food in the little body, whatever it takes.

You know what your DD needs to get the food in so she will feel good. You might examne if she needs a favorite movie while eating or a toy. Check the enviorment. DS will always eat when in the minivan, he likes the sound and vibrations. We try to eat outside in the grass or on the trampoline.

Eating out is very hard and we avoid it at all costs but we are on holiday starting Wed so we will have to eat every meal out. We are packing the DVD and Thomas and then we will the tag team to get through dinners.

Should they sit at the table or go to their room? I don't know the DS really understands why he is going to his room. DH does it and I really don't see any difference.

As for getting the help you need. Please, I know it is hard, you get tired, it is a fight but your DD is counting on you and she needs you to fight for her. Don't ever give up! Take days off for you but go back in. Go to the school and get and IEP if she is old enough and make sure it has OT and speech along with anything else you feel might help your daughter. They even offer counseling for the parents because we need it to survive.

Go to the local early intervention school, like head start, child development center, etc and demand an evaluation. They are free. If they find more they can give you a referral, again they will have to pay the DR. for the referral. It sounds like you have started already.

Last, trust your gut. If you don't feel you have the proper DX then keep going, get what you need for your dear daughter.

Let me know if I can help in any way and good luck, April

We aren't experts, just moms with the same issues. My son has some sensory integration issues, also. My suggestion, in addition to April's, is to check with your insurance company. Mine covers a psychotherapist. I was lucky to find one who specializes in these issues and Aspergers. Also, check out the autism resources in your state. Many states now have state run agencies on autism, and sensory integration disorders often go hand in hand. I would definitely get something as an adjunct to the schools. My son's ped didn't think he had a problem, either, until he was five and diagnosed by another!! Sorry, I have to run - crying baby. Will check back. We take you seriously!!

Boy do I feel for you! My oldest also has SPD. We noticed at about 6 months when certain baby foods would make him vomit. Like you, we were told he was just picky. They claimed he was going through the "toddler 5" and would outgrow it. It has now been 8 years, we are still waiting for him to grow out of it.

When you said you had Annika evaluated, was it done by your private dr or was it done by EI? We were able to get help, but our school system refused to assist us. When our son turned 3, we started with private therapy and have been doing it ever since. SPD IS something that deserves services, but it can be a battle. You may want to check with your insurance company to see if you can get it covered. Often, as long as your dr writes a script for the eval, you can at least get that covered. Then you can bring it to the school as some evidence that your concerns are valid.

FYI.. Just because she can eat pureed and crunchy foods does not mean she does not have SPD. My youngest is able to eat both as well. He cannot put both in his mouth at the same time. The problem is not with the individual texture, but the inablity to separate them once they are in the mouth. Over the past few months I have learned a great deal about how important your tongue is to eating! lol. Obvious enough, but I never really thought about it. He has been in feeding therapy for it, and we are making amazing progress. I so wish they knew this much about it when my 8 year old started!

I hope you are able to get some help. This is such a frustrating issue. Too often if the disability is not physically obvious, the powers that be tend to assume it is not significant. Very best of luck!

What is it with our dhs that they are not supportive and are so in denial? I know they want to have perfect little soldiers from their genes; that something not "perfect" could come from their little swimmers, but if they loved us, they should support us, no matter what!!!

As a parent of a kid with SPD, Sensory Processing Disorder, for those of you who are not familiar with this jargon tossed about, it really does sound like that is exactly what you're facing (I am not a doctor, and don't even get to play one on television or in my bank account ). My son is 6 and if he eats something he doesn't like, (he loved peas as a baby and now throws up if he has to eat even one), he literally gets sick. Gagging is normal as a baby, but where do you draw the line? Why, oh why, with the prevalence of this and autism, are not our pediatricians taking the initiative to find out more? Where are the Pediatric's Society and the AMA? Early intervention is so important! A kid with sensory difficulties may find it hard to sit in class with flickering, flourescent lights, or with a teacher who paces during a test (not just distracting, obsessively and downright major mental blockage!), or a class that has papers shuffling, or is too quiet. Some schools, such as ours, know this and will accommodate such a child. I saw one child in the resource room taking a test with rock and roll music on (yes, heavy metal). That's what worked for him, and they were smart enough to work with that. THAT is not a behavior issue. This kid will probably have a career where he does brilliant work in noisy atmospheres that would drive someone else crazy. Anyway, I agree with the other poster who told you to check with your insurance company for coverage - it's often hidden or you actually do have to fight for it.

For reference, check out the website for melmedcenter.com. This is the place where we take our son. They did the diagnosis. Read this over and see if there is something in your area like it. Also, I'm sure you can contact them and they can help refer you. They are highly regarded in this area. Perhaps a pediatrician switch or addition is necessary? Just an idea. Good luck. Put on your armor and uphill climbing shoes. We're here to bounce ideas off of, too.

Hi All,
I have a 6 y/o son who ALSO has SPD/eating issues. We've been blessed to have 4 yrs of occupational therapy, so many of his sensory issues have resolved, but not the eating. I'm so sorry to hear that pediatricians are still not clued into the fact that this is a real problem! Like someone else mentioned, my son would also eat almost anything until he was about 14 months old. Then, suddenly nothing but a few bland foods (loves bread, won't touch pizza or pasta; likes fried potatoes but not mashed??) He now gags at the sight of meat and throws up if a texture or smell isn't just right. He did have pretty severe reflux until he was 4, so that might be something to check with your Dr, especially if she has frequent vomitting, night coughing, and poor sleeping.

I will mention, too, if you can't get private OT there are at least some good books you can read yourself. A few goods ones are: The Out-of-Sync Child, Raising a Sensory Smart Child, and Just Take A Bite. (the last title is written by an OT on eating challenges). Unfortunately, in my experience, school OTs are mostly interested in fine motor skills (writing, scissors), and not always able to address sensory issues.

Good luck, tho, to everyone! Glad to see this section of the board open up!!!
Tammy
bryan's mom in Ohio

Thank you all so much for your replies!

For those of you whose child received an oral SI diagnosis, did your child have to have a swallow test? Our Ped wants Annika to swallow a barrium liquid and then have an xray that would show her swallowing a pureed and a crunchy food, which would supposedly show SI. I don't see the point since Annika eats these textures without any problems, so how exactly would that show a problem? Now rice or pasta... that would be a whole different story!

And IF she was dx'd then what? Would that change protocol of treatment, especially considering I already have her in ST? If I thought the test would grant us OT treatment I'd do it in heartbeat. However, this is an expensive test, and could also be traumatic for Annika and could result in seizures. I just can't justify it at this point. What are your thoughts?

thanks,
Lisa

Definately get a referral from your primary care physician (probably your peds doc) to see an Occupational therapist who deals with sensory intergation. You need to call and make sure the OT deals with SPD. There are alot of OTs out there that have never been trained, preferably you will find one that works with children. Our 15yr old actually got a referral from her psychiatrist for the OT, only because I was bouncing ideas off of him as to different things that we could try to deal with her bipolar issues. When you get a private evaluation make sure you get a copy of that evaluation to have as ammunition that your DD needs services and deserves them.

My 16 month old DD is currently in OT paid for by our insurance company. At each weekly session we work a few minutes on her oral defensiveness with a Nuk brush. Originally DD could not tolerate sweet things especially fruit or juices. We finally found that she would drink mango juice which helped open up her world to sugar.:D We moved on to and finally found she would eat vanilla pudding. So at OT we use a Nuk brush with pudding on it to brush the insides of her cheeks, the roof of her mouth and the front part of her tongue and are gradually working on getting further back on her tongue. It's been very rough going with the brush barely touching the inside of her cheek before she would gag and throw up until now we can get throough most of her mouth with only slight gags and no vomiting. We are also trying cotton candy and colored sugar on the brush but we do best with pudding.

Also very teeny tiny pieces of food are tolerated best instead of a child size bite. I just rotate different things I try with DD somedays we get a bite swallowed and I look at that as a success. Also the OT suggested that we give DD shock candies, pop rocks, sour patch kids to help desensitize DD mouth. DD also has several Jigglers that she mouthes now, originally we would just rub them along her cheeks to help desensitize her mouth. Progress with the mouth is very slow and I find heart wrenching some days but it is possible.

I am so sorry for what you and your dd are going through. When I was reading your post it made me think of my austic son. SI goes with austim. The textures of food, the loud noises, the soft touches feeling like hits. I would suggest finding a doctor in your area that dx's austim. Not that your daughter has it, but as a step to find someone who can test for the SI and to rule out austim. Usually a nerologist can dx. They see so many kids that they would know what to do next and get you the referalls you need. It doesn't sound like your doc is willing to help.

Good luck!

saxton&djsmommy: You brought up a good point that I don't think we've touched on before: the soft touches that feel like hits. That was a huge thing for me when my son was young, and it really hurts the bonding for mother and child. Each hug would be an exercise in goofing off and defending ourselves. He wouldn't kiss, he'd crush. He wouldn't cuddle in our laps, he would jump on them. I would teach him soft touch, but he always needed more of a sensory experience. Only now that I have a second child do I see that it wasn't the way I was teaching, it's just that he needed more of a touch. This is also one reason simple time outs and spankings don't work effectively. They actually crave touching, and a light touch can actually drive them crazy. My son hated being massaged. Thanks for bringing that up.