Thanks for the encouragement and support. On my own, I'm contacting OT's in my area that deal with SPD to try an arrange a consult. I'm just tired of waiting months on end for our school system to even retest Annika. So far none of my calls with these OT's have been returned. Just one more bump in the long winding road.

Lisa

I know, and am constantly told, how busy the OTs are, and I understand that. However, I go through my son's resource teacher with the principal as backup to ensure he's on their radar. His resource teacher has been awesome, which is why, when there is an issue, I approach it with full respect for her and his teacher. They aren't perfect, but I really feel they are doing all they can to help. They are good allies.

Hi Lisa,

I'm Christy, I am new here and just posted about my son Justin, 5 who has a seizure disorder and also sensory issues namely feeding problems. I don't know if I have any words of wisdom but I know just how you feel!!!

Justin has also had breath-holding episodes. He hasn't had them all along but especially when he was 3-4. They usually happen when he is very physically hurt. It is very scary to watch! I didn't get much answers from his doctors, only that he would grow out of them, however I read somethings online. One thing that was interesting was some people believe that it can be due to low blood iron levels. In his case that could be true because he always has been borderline anemic. I try to give him a good multi-vitamin with 18mg iron not only for that but because of his diet.

Justin does see a speech therapist/oral motor specialist 3 x a week. He definitely has low tone in his tongue, cheeks, etc. She knows that my biggest headache is feeding him. She spends one day a week working his muscles, building up his gag reflex, etc. She has spent a month straight (3 days a week) trying to work on the feeding. He is stronger, but he has the sensory issues. He does like soft foods (eggs, cheese, yogurt and he LIVES on milk!) but he also like crunchy crackers, cookies, nuts, cereal (and that is about the extent of his preferences except for sweets. He has diminished taste buds (she said the sweet is the last to go). He doesn't fit a cookie cutter mold but we know he has sensory issues.

We just recently got into a private OT and she is very up on SPD. He also does get it one day a week at school (ESE pre-k at public) but I know last year it took 5 months for him to receive services and that was one day a week and just for fine motor problems related to school (cutting, writing etc.)

I am thankful that we received a diagnosis for him when he was 13 months(epilepsy), because any kind of developmental delay is taken seriously and we are referred no questions asked. He does have private insurance but we also medicaid as a secondary. I THANK GOD for it because we would be bankrupt without it! His private ins. is very limited. He has 7 private therapies a week and that does not include what he recieves in school. All I can say is we are doing everything in our power to try to catch him up. I just take it one day at a time.

I'm sorry I don't have any great advice, but I just wanted to let you know that you are not alone!!!!

My thoughts exactly, My ds was diagnosed with autism and SI. The lights, the textures of food, taps that feels like hits, all of it is what my ds goes through. I don't understand the testing for SI though. My ds will eat pasta and pizza and a few choice other foods. I went through him living on mac and cheese and nuggets. As he gets older he tries new things to please us. Some stay down, others don't. It is my belief that SI can show themselves in different ways with different children. Just because they are diagnosed with SI, doesn't mean they are all the same. I would recommend a new neurologist. I fired mine after I realized she had no experience with Autism or SI her speciality was epilepsy. They all have areas of expertise.

You can also ask your pediatrician for a referral to a developmental pediatrician (if you need a referral).

A developmental pediatrician can give you the diagnosis and works is trained to work in all neurological developmet areas (some specialize and some don't). The evaluation intself can give you great insight and the diagnosis can help with the schools and insurance.

As for the school system - you have to understand where they are coming from. They are not required to provided services in general. They provide services so for any issues that are effecting the child's ability to learn. They are specifically focused on education. So if you are aiming at services that way - put your thinking cap on and sell the issue in a way that relates to education and the ability to learn. They have no legal obligation to provide general services that don't pertain to education. However, once they are in the system the child often gets more out of it!

Keep advocating for your child! You are their voice and you know them best. Don't be afraid to ask questions and ask for ideas!!!!

I am right there with you going through the same process.

amy

__________________
Amy B.

Have you ever had a swallow study done. IT maybe something in his throat. My duaghter had the same issues. Though there was nothing wrong wither hers it was the first thing done when she started in therapy. But IT all has to do with textures.. what texture you can tolerate. For a child who is sesory it can be tramatic to eat certain food. why isn't he is some form of speech therapy that includes feeding? My duaghter didn't have to go see tons of speacialist they took care of everything through her therapy. It took a while but she is great now...