Sensory Integration Dysfunction And Gluten Intolerance

[Eeyorific]

I started this thread more as a "quasai-study" for myself to see if anyone else with SID and ADD had Celiac Disease or Gluten Intolerance. I'm so glad several people responded!

I personally thank you for doing so. we are facing *something* with my son.. but unsure at this point as to ***WHAT*** His pediatrician suspects PDD, and is having him sent to a specialist. I am now awaiting the paper work before given the appt time/date.

Matthew has been Casein free his entire life (4 years) and has been gluten free for the past 2. I often wondered myself what kind of connection his celiac disease has to what we are now dealing with. I also wonder had he not been gluten-free/CF... how much worse would they be compared to what we're now dealing with. (which at times is overwhelming!)

Thanks again... I haven't been able to visit this board in awhile, but this is an interesting read.

Kristie

[Eeyorific]

I want to add that it is suspicious that your son only wants to eat gluten containing foods. It might mean that he is addicted to them, and when you're addicted to something you're also intolerant/allergic to it.

Would the same go for Ketchup? My ds (the one I mentioned in previous post, who is gluten-free/CF&corn free) LOVES LOVES LOVES (safe) Ketchup.. he insists that it goes on EVERYTHING!! In fact, he won't eat vegetables without it. We have to specially order a bottle every week, and he's the ONLY one who eats from that bottle!

Kristie

[Fiddle-Faddle]

Ketchup could go either way. He might be intolerant to it--but more likely, he's just a normal kid. Most kids would eat ANYTHING if you let them dip itin ketchup first!

I just wanted to add a suggestion on the PDD. A colleague of mine had a brilliant idea on how to help her son, who had been diagnosed with PDD and apraxia of speech.

For babysitters (she works outside the home), she hired college students who were getting their degrees in things like speech therapy and special education. I think some of the kids were able to use the experience as class credit, and the mom was basically able to make sure that there wasn't a moment wasted on getting him back on track. (She also brought him to all the special speech therapy classes and whatever other developmental aid that he needed to catch up.)

Hope that helps!

[wonkabar]

I personally thank you for doing so. we are facing *something* with my son.. but unsure at this point as to ***WHAT*** His pediatrician suspects PDD, and is having him sent to a specialist. I am now awaiting the paper work before given the appt time/date.

Kristie

Do you know what type of specialist your ped is sending you to? I would recommend a neurodevelopmental pediatrician, specifically one who specializes in PDD.

I truly do understand that "dealing with *something*" and ***WHAT*** question. I, too, suspected PDD-NOS due to the sensory issues and language delay when Zachary was about 18 months old, but he just didn't seem to fit the profile as I knew it. He in fact had language, social and play skills. But, I couldn't pinpoint what would be causing the sensory issues. I was looking too far out of the box.

I never even thought of SID alone as the kids in my class were significantly involved and had multiple issues to deal with. *I hope this goes without saying, but I'm certainly not minimizing SID in any way.* We took him for a private eval at a premier school who exclusively services children on the spectrum, and it was determined that he was not on the Spectrum but rather had a significant planning and processing delay. A couple months later he was Dx with Sensory Modulation Function. Zachary was a 32-week preemie and at that point everything made sense to me both as a mom and teacher....whew!! It's an incredibly emotional process, though. Nothing hurts more than seeing your child struggle --I don't care how minimal that struggle may appear.

Also, have you contacted your local school district's Special Services Dept.? If you haven't you really should as your son may very well be entitled to special education services as well as related services (ie., speech, PT, OT).

Ketchup could go either way. He might be intolerant to it--but more likely, he's just a normal kid. Most kids would eat ANYTHING if you let them dip itin ketchup first!

I just wanted to add a suggestion on the PDD. A colleague of mine had a brilliant idea on how to help her son, who had been diagnosed with PDD and apraxia of speech.

For babysitters (she works outside the home), she hired college students who were getting their degrees in things like speech therapy and special education. I think some of the kids were able to use the experience as class credit, and the mom was basically able to make sure that there wasn't a moment wasted on getting him back on track. (She also brought him to all the special speech therapy classes and whatever other developmental aid that he needed to catch up.)

Hope that helps!

I'm still that "ketchup kid!" I LOVE ketchup!

What a fabulous idea your friend had!!!!!!!!! Having a background has cetainly helped us help Zachary. But, boy do I LOVE the idea of getting college students in related degree programs to help out.

[Eeyorific]

Do you know what type of specialist your ped is sending you to? I would recommend a neurodevelopmental pediatrician, specifically one who specializes in PDD.

Here are his credentials...

Specialty: Developmental/Behavioral Pediatrics , Pediatrics

Certification:

General Pediatrics, 1984

Developmental and Behavioral Pediatrics, 2002

Scholastics:

BA, University of San Francisco, San Francisco, CA, 1976

MD, Georgetown University School of Medicine, Washington, DC, 1980

Residency:

Pediatrics, Children's Hospital of San Francisco, San Francisco, CA, 1980-1983

Fellowship:

Developmental and behavioral pediatrics at William Beaumont Army Medical Center in El Paso, TX; 1987-1989

Professional Societies:

American Academy of Pediatrics

Society for Developmental and Behavioral Pediatrics

American Academy of Developmental Medicine and Child Neurology

Medical/Research Interests:

Autism

ADHD

Behavior Disorders

Chronic developmental disorders such as cerebral palsy and mental retardation

Kristie

[Eeyorific]

Also, have you contacted your local school district's Special Services Dept.? If you haven't you really should as your son may very well be entitled to special education services as well as related services (ie., speech, PT, OT).

Right now, he's home with me, I guess you could say, I sort of home (pre)-School him. He just turned 4. I am at this point in time, I am planning on homeschooling him up to 1st grade. Hopefully by then, we'll have a dx of some sorts. Thank you very much for your help! Some times I feel so lost!!

Kristie

[wonkabar]

Here are his credentials...

BINGO! This is exactly who you want to see. It looks like your little guy will be in good hands! Lots of luck!

Right now, he's home with me, I guess you could say, I sort of home (pre)-School him. He just turned 4. I am at this point in time, I am planning on homeschooling him up to 1st grade. Hopefully by then, we'll have a dx of some sorts. Thank you very much for your help! Some times I feel so lost!!

Kristie

This entire process can be very overwhelming and emotional especially when you're in the ***what?*** stage. I truly do think you'll have some type of answer/Dx long before your son starts first grade.

In order to be considered eligible for and receive any type of services through your district, you'll still need to go through the eval process even if you're homeschooling. I honestly don't know a whole lot about the home-schooling process as I've had no experience with it. Carla B homeschooled her kids and would be a far better resource in that area.

Also, certain doctor visits and evals to address your son's issues are covered by the district while you're going through the eval process so you don't have to pay out of pocket. (It can get very pricey! ) You don't' have a choice as to who you go to though. Regardless what you decided to do in terms of your school district, I'd definitely keep your appointment with the neurodevelopmental ped. He is gonna be chock-full of information and answer most, if not all, of your questions. I recommended a neurodevelopmental ped. to my best friend to address the issues that her daughter had. It took her awhile to finally agree to go but she's happy she finally did. She was absolutely blown away by the amount of info she was given and prompt Dx.

I apologize if I'm coming across as being "pushy"; that's certainly not my intention. I've just encountered so many parents who weren't aware of what they/their children were entitled to. So if I can pass along some helpful info to make things a little less stressful for someone else, I'd like to be able to do that!

[Eeyorific]

I apologize if I'm coming across as being "pushy"; that's certainly not my intention. I've just encountered so many parents who weren't aware of what they/their children were entitled to. So if I can pass along some helpful info to make things a little less stressful for someone else, I'd like to be able to do that!

On the contrary, I fully appreciate any and all suggestions. You are exactly right.. the "What?" stage is overwhelming and scary at times.. I know once we fully understand what we're dealing with, and how we can properaly help our little guy, I'll feel much better about everything.

In order to be considered eligible for and receive any type of services through your district, you'll still need to go through the eval process even if you're homeschooling.

His b-day is just short of the Sept 1st cut off, meaning even though he's now 4yrs old, he won't even start Kindergarten for another 2 years. When would you suggest contacting the district?

Also.. I'm feeling a bit nervous about the eval process. Right now, we are awaiting a questionnaire packet to fill out and return.. why am I feeling so intimidated by this??? Also the nurse said that at the eval visit, we'll be there literally all day, which, don't get me wrong, I fully understand all of this is necessary... I guess a small part of me feels that my parenting skills will be equally evaluated, and we'll walk away with them saying, he's fine.. you're the problem I know this is far fetched and silly... but honetly, I do feel I'm failing my little guy in some way. I have worked with small children for nearly 15 years now, and have had an in-home childcare for 11 of those years. With all of my experience with small, and at times difficult children, how is it that I can help and reach them, but not my guy...

Sorry for the vent.

Kristie

[mythreesuns]

His b-day is just short of the Sept 1st cut off, meaning even though he's now 4yrs old, he won't even start Kindergarten for another 2 years. When would you suggest contacting the district?

Once a special needs child turns 3 they are eligible for services through the school district. I would call them, or better yet, send them a certified letter, as soon as you can get to it. Once you send a letter they are required to look into it.

[Eeyorific]

Once a special needs child turns 3 they are eligible for services through the school district. I would call them, or better yet, send them a certified letter, as soon as you can get to it. Once you send a letter they are required to look into it.

This would be after his eval and dx... correct?

Now forgive me for asking, but his celiac disease alone doesn't qualify him as "special needs" does it?

Kristie

[Nic]

This would be after his eval and dx... correct?

Now forgive me for asking, but his celiac disease alone doesn't qualify him as "special needs" does it?

Kristie

The school district will do an evaluation even without a formal dx and determine if he is entitled to any services. We never got a diagnosis for my son other than hypotonia and developmental delays which is more of a symptom than a disorder in itself. He was evaluated by the school (psycologist, social worker, speech therapist, occupational therapist, and physical therapist all on the child study team) right before his 3rd birthday. They entered him into their handicapped pre k program as soon as he turned 3 which was April 28th of that school year. He goes extended program so he goes to school through August. He receives physical therapy, speech therapy, occupational therapy and also feeding therapy all during his school day and he is getting a great pre K education at the same time. While he was in the 3 year old class of this program, my older son was in the 4 year old class of a private pre k. I had to work on the older one to keep him up with the little one . So it was great help and a great program and he is doing much better.

Nicole

[Fiddle-Faddle]

For what it's worth, my experience was that I basically home-schooled my son in addition to his going to school.

Part of this is just because of the nature of our school district. For some reason, they thought that children would learn multiplication better if they threw out the old multiplication tables and made them do "mad minutes" instead.

My son simply could not cope with this--until I sat down with him and taught him the multiplication tables (I wrote one out for him, then handed him a blank one every night and told him to copy it from the first one--he learned them very quickly and painlessly that way).

This was typical of how they teach in our school districe, and probably many school districts. They have ONE WAY in which they teach, and if the kid doesn't get it that way, too bad.

Another example was social studies, where they used the world's most boring textbook to teach American history (Columbus, the Vikings, etc). I read aloud the tesxtbook at home, and threw in my own interjections ("what if our family were on the Mayflower?", took him to the computer to look up Viking ships, etc.

What it comes down to is this: unless you are spectacularly lucky, YOU will kow how your son learns better than any of the teachers, and you will be able to "translate" in a way that makes sense to him. He may or may not need that--but my son did, and none of the aides or specialists came close to what I was able to do, not because I had any more training or experience tan they did, but because I am his mother and I know how he thinks.

the good news: this year, he started 6th grade--and suddenly doesn't need me to translate for him any more. It all sort of clicked for him this year.

[wonkabar]

On the contrary, I fully appreciate any and all suggestions. You are exactly right.. the "What?" stage is overwhelming and scary at times.. I know once we fully understand what we're dealing with, and how we can properaly help our little guy, I'll feel much better about everything.

His b-day is just short of the Sept 1st cut off, meaning even though he's now 4yrs old, he won't even start Kindergarten for another 2 years. When would you suggest contacting the district?

Also.. I'm feeling a bit nervous about the eval process. Right now, we are awaiting a questionnaire packet to fill out and return.. why am I feeling so intimidated by this??? Also the nurse said that at the eval visit, we'll be there literally all day, which, don't get me wrong, I fully understand all of this is necessary... I guess a small part of me feels that my parenting skills will be equally evaluated, and we'll walk away with them saying, he's fine.. you're the problem I know this is far fetched and silly... but honetly, I do feel I'm failing my little guy in some way. I have worked with small children for nearly 15 years now, and have had an in-home childcare for 11 of those years. With all of my experience with small, and at times difficult children, how is it that I can help and reach them, but not my guy...

Sorry for the vent.

Kristie

Don't apologize for venting........God knows we all need to!

As per federal code, children between the ages of 3 and 5 years-old who are found to be elibigible for special education services can begin the PreSchool Handicapped class. NOT all kids who have "issues" are found to be eligible to receive services. You do not need a specific Dx to be found eligible as all 3-5 year-olds who require services are classifed as Preschool Disabled regardless of their primary Dx. However most kids in the PSH class do in fact have some type of Dx.

I would recommend submitting a letter to your school district ASAP and, I agree, send it certified to the attention of the Director of Special Services if you don't have his/her name. In the letter you need to indicated that you are requesting a full Child Study Team Evaluation to address the cognitive and functional concerns you have for your son. Upon receipt of this letter, the CST has 20 days to contact you and have an Evaluation Planning Meeting with you. At this meeting, you'll meet with a CST member, teacher, often a related services provider (OT, PT, speech) and discuss your concerns about your son. At this point it will be determined if it is necessary to conduct an evaluation and what these will be. The standard evals are a Psychological Eval, Educational Eval, Social Eval and evals for related services as necessary. Other evals may be requested (ie., neurological) and covered by the district.

The district has 90 days from the date of this meeting to test, score, write reports and meet with you to discuss the results and your son's eligibility status; this is called the Eligiblity Meeting. If your son is found eligible for services, and you agree, you'd move onto the Initial IEP Meeting. An IEP (Individualized Educational Plan) is created to meet your son's specific needs and will be implemented by all teachers/therapists involved with your son. An IEP is a legal document and the district/teachers are obligated to follow the specific program outlined to address your son's needs. His IEP would then be reviewed annually to ensure that the program the district has in place is still appropriate in regards to meeting his specific needs.

Preschool Handicapped programs truly are wonderful programs. I did my student teaching in PSH and my son currently attends one in our district. He also receives OT to address the sensory issues and speech. He's doing great...we couldn't be happier. You can ask to visit the different programs your school offers while you're going through the district evaluation process. If your son were found to be eligible even at the age of 4, he still could be placed in the PSH class until he was ready to age out for kindergarten. If he still required serviceswhen he aged out of PSH, his IEP would be reviewed and carried over into kindergarten.

As far as the appointment with the neurodeveopmental ped goes...try not to be too nervous or intimidated. The package you'll receive is going to be rather lengthy and ask for tons of developemental, health, pregnancy and family history. I'd photocopy it for your records so you can use the information again if there's other packets you may need to fill out. They'll want to know everything. Honestly, the more developmental information you can provide them with the better it will be. You should expect them to conduct some evaluations that your son has to participate in, observation and lots of "parent interview/input". No one is going to question your parenting skills or you personally. They may ask you questions regarding his behavior, how you intervene and what his responses are to that, but no one is going to point a finger at you and blame you and tell you it's all in your mind. If for some bizzare reason something as crazy as that happens, you can simply leave and find another doctor.

I understand how hard it is to watch your little guy struggle...isn't "Mother Guilt" a wonderful thing?!?! By virtue of the fact that you are reaching out to people and having him evaluated is in fact helping him. This is going to give you the answers, information and resources you need to support him.