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Undiagnosed Mild Aspergers, Many Questions--What to do now??

Hope - posted on 01/02/2011 ( 8 moms have responded )

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I'm wondering if any of the biomedical treatments might work on my son. He is not diagnosed mild aspergers, but in my heart I know he is. I have had him tested by psychologists and psychiatrists numerous times only to be brushed off. ADHD (inattentive) is all they came up with and this is after I bugged them to no end. I've been doing much research and I know in my heart he has a mild case of aspergers. Perhaps too little to be detected on their scales. He also has eosinophilic disorders that we are not treating at this time. We tried and 7 endoscopies later came up with nil. But that is a gut thing and delayed onset food allergy that never goes away until you remove the culprit so that sounds like it would be related to autism. So I have a strong hunch it is what it is. Would any of these treatments help a mild asperger's case such as him? I am having major battles with him at home daily. It is unbearable. We cannot go on like this. His father has had it also and finally agrees that it is something more. Many times I feel like just leaving. I love my kids but I can't deal with it anymore. That is how bad it has gotten. I can't even stop thinking about him and what his future will be like for a second. I don't want to be around people or take him out anymore. He will not behave out in public--it's horrible. He used to be a straight a student in kindg. and 1st, but now just one a and the rest c's and c-'s and one d. I think his teacher is just more precise now and the others were just overlooking a lot. this is 2nd grade and you have to do more now. Anyway, we had his blood tested ELISA. He came up high on Wheat-4, Milk-4 and eggs-3. He was a 2 on soy and 1's for chicken, and a few other stuff. Well, I about had a breakdown this week trying to cook for the family with all of this stuff. We cleaned out the kitchen and started reading recipies shopping, you name it. It's impossible to do. I even started rotating. Again, Breakdown! It's only been a week! He goes back to school Monday and I have no idea what to give him. Would it be ok if I just did Wheat, milk and eggs free? Do I have to do it all or nothing? I mean no soy, no rice, he came up with quite a few 1's.

Also, do you think HBOT would work for him, being mild asperger's at worst? If we get a diagnosis? Or do you have to be more on the other end of the spectrum in order for improvements to show? If I could just get him to change his behavior and be a little more aware of his environment.

Also, do you think I should look into a DAN dr? Would they help someone barely on the spectrum?

I'm so confused. I don't know what to do. I have been up until the wee hours of the night, almost every night just getting info. I'm really getting myself sick over this. I just keep thinking about the window of opportunity shutting on us--he's 8 yrs old what if it's too late? Early intervention is key. I tried and the doctors just brushed me off, even my husband was not on board until recently. Please let me know what you think, even if you think I don't want to hear it. Be honest. Anything to help? Treatment wise?

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8 Comments

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Sara - posted on 04/10/2012

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Hi Hope,

My son is 7 and has been diagnosed with ADHD. I know, however, that he is mild aspergers. He had horrible digestive problems when he was younger...I attributed these to lack of normal flora in his gut brought on by so many antibiotics when he was little and an allergy to dairy (which showed up negative) but I still believe he has the allergy. I took him off dairy completely 3 years ago. his constant rash went away, his behavior calmed, and his asthma went away (took him off 2 meds and an inhaler). He stopped getting sick, so no more antibiotics..and I put him on probiotics to cure his guts for almost 2 years. His digestive problems are gone now. I think he has problems with gluten (as we all do) so I am slowly removing that. His father and I have seperated and he has never been on board so unfortunately my son is fed all kinds of things he isn't supposed to have while with him...and sure enough his rash comes back, cough, and poor behavior.

I am going to try again for a diagnosis through a TEACCH center here, but who knows if he is severe enough for them to see it. The poor kid hates the meds he is on, hates school with a passion, sometimes can't stand being in his own skin..I am actually thinking of home schooling if I cant' get him any help.

do take him off milk. my son loves rice milk and coconut milk. I give him soy cheese sometimes and use soy for some of my baking and it doesnt' seem to bother him at all.

Try to take the foods your son eats the most (bread, cereal, etc) and find alternatives to those so you can convert a large portion of his diet to gluten free.

mostly talk to him about why you are changing his diet. I told my son that the dairy was making him sick and it helps keep him compliant when he has to make his own choices.

Get a small trampoline for him to jump on (the kind with the handle bar). it calms my son to do this. Look for a weighted blanket to help calm him or help him go to sleep. you can find them online. Look for an Occupational Therapist in your area that specializes in childhood sensory processing disorder. If your son has aspergers then he certainly has sensory issues. My son was diagnosed with spd 3 years ago and has been getting OT ever since...it has helped a great deal with his frustration levels and self calming issues.

spend time with him just you and him and listen to him. make sure he knows that he has an advocate in you, that will make the biggest difference with his anxiety. stop arguing with your husband over it...you are the mom. you know what is wrong with your boy. you know him better than he knows himself at this point. stop wasting precious energy...your husband will begin to see for himself when what you do makes a difference or he won't (like mine)...either way, you are doing it for your boy, no one else.

hang in there and peace be with you. email me if you need an ear.

saramparsons@yahoo.com

check out this site spdfoundation.net

Julie - posted on 01/05/2011

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Thyroid problems also have GI symptoms as well as other symptoms that are routinely passed off as allergies or some other illness, which is why many people are not diagnosed with hypo/hyperthyroidism until they are much older. Thyroid disorders affect mood, appetite, sleep, skin, cardiac, eyes, neuro, hair, metabolism, GI system, temperature sensitivity, concentration, hormones, growth, bone density, etc., etc....

Here are some links to check out for information.

www.allthyroid.org www.MyThyroid.com

www.thyroid-fed.org www.ngdf.org

www.cdc.gov

Gifted and talented people also share some common traits with people diagnosed with asperger syndrome. If you go to the gifted and talented community on this site there is a posting with a bunch of links of resources. Good luck.

Sarah - posted on 01/04/2011

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Hi Hope - I'm sorry to hear how overwhelmed you are. I really do understand. You are completely overloaded both emotionally as well as with information right now. I agree w/ an earlier post, if your gut tells you something is wrong then it probably is. Can you find a Neurodevelopmental Pediatrician? We have one at our local hospital & they are who diagnosed my son. He's moved back & forth from Asperger's to PDD/NOS & back again, but they've kept him tacked to the spectrum since he was 5. That being said, a diagnosis won't change what you're dealing with right NOW. I like to also suggest you try to find an ABA therapist if you can, Applied Behavioral Analysis. It doesn't matter what the diagnosis is, they can help you identify causes for the behaviors & develop a plan to target them specifially. Out of everything we've done for our son for the past 3 yrs., this has had the biggest impact on us all. Set your family up for some wins, get the therapist to help you target some easy things to change in your family's routine that will ease things for your son. The impact of a few easier gains will give you the strength & reinforcement you need so badly right now.

As for diet, definitely scale back & start slowly. We did because the thought of doing it any other way made me break out in a sweat. I agree w/dairy first too, you can't lose by trying it this way. I'm not sure you'll be able to keep it up the way you're going now.

You're instincts are good. It's so hard to step back & see where you might back off when you feel like your floundering, but it really will be ok and I think you'll get farther in the long run.

We're in a marathon baby, can't sprint your way through it. Be well & my best wishes to you & your family.

Lisa - posted on 01/03/2011

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Hi Hope, I hope i can give you some "Hope" My son sounds ALOT like your son. We started having some issues in K. It wasn't anything like it is now! In kinder he was having problems with rhyming and sequences (patterns). In 1st grade he was one of the smartest kids, then we moved and again focusing issues from then on. We try the meds prescribed by the drs. Which only made the situation WORSE! So BAD! I beleive that many kids have many issues going on and most Drs. don't even have proper tests to diagnose. I did try nerofeedback and I did have some success. My friend and I were just on the phone for 2 hrs. cuz she is studying to be a ONe on One tutor and her son has issues as well. She fully believes in nerofeedback. her son had 8 sessions. I think that all of us need to take more vitamins and eat better. There is so much junk food out there. My husband isn't on the same page, and I am really frustrated and want to sometimes throw in the towel. My son is 10 and I homeschool, the school was making him psychotic as well as the Drs. I'm going to research an OT. I'll let you know what happens. here's my email artinme.me@gmail.com if you want to talk more or have questions. Also what is a DAN DR.?
Lisa

Katherine - posted on 01/02/2011

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@ Stacy: That is extremely helpful information. I am trying to get off of these things myself because I have GI problems. So thank you for the valuable info.

Julianne - posted on 01/02/2011

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i have a aspergers child as well. the first few months are hard and take so much of your time and energy but the pay off is SO SO SO worth it. if his high ones are wheat and dairy stop those first. there are a ton of gluten free things and replacing dairy while it seems super overwhelming is easily done as well once you figure out what works for your family. if you want to chat more just send me a message.

Stacy - posted on 01/02/2011

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If you know in your heart that there is something up, then keep pushing for it. Find other doctors who can help. It only takes one who believes in you and can offer guidance.

Until you know the exact nature of what you're dealing with, I don't know what therapies would work for your son. What are the exact problems you're having with him? What are the problems he's having at school?

Change of diet will probably help your DS immensely if he's having GI issues. I'm not familiar with the ELISA testing, but we are doing the GFCFSF diet, in addition to Feingold. You have to start SLOW. First eliminate casein - mostly dairy, sometimes found in meat products, etc. It's the easiest to find replacements for (rice milk, almond milk, etc) and it leaves the body within a week. During this time, start experimenting with gluten subs - find a GF bread he might like, new muffins, new pretzels, etc. This will make the change less traumatic. We went about 4 weeks between going CF and going GFSF (you WILL need to remove soy because it mimics casein, so don't replace dairy products with soy products). Soy will be the last to go, just because soy lecithin is in almost everything. You don't have to revamp the entire family meal plan either. I make DS a version of what we're having (ie, if it's chicken enchiladas, I just use corn tortillas for him with Daiya cheese, the rest of us eat normally with flour tortillas and regular cheese - prepared in a separate pan, of course). He's fine with being different. And it's much easier to do during the school year if you pack his lunch - one less thing for him to be picky about! There are a lot of good resources and message boards out there about GFCFSF, it is a big change but it's not overly hard to do.

Katherine - posted on 01/02/2011

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It is so hard trying to change an entire diet. He may not BE Aspbergers. He may have wheat or gluten issues.

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