Update of 3YO dr’s appt | ADHD Information

I went GFCF for my son (PDD-NOS, sensory processing disorder, anxiety, adhd).  The diet didn't make much of a difference for his behavior, but it made a tremendous difference for my younger son who is developing normally but is extremely irritable.  The most important lesson I've taken away from going GFCF is getting in the habit of eating foods in their natural forms and avoiding additives and artifical ingredients. 

 

Well, my ds had his appointment with the Behavioral/Developmental pediatrician on Friday.  It was interesting and informational, to say the least.  She didn't diagnosis him with ADHD, although she did say he displayed impulsivity and inattentiveness.  She did diagnosis him with Coordination Disorder, Language Disorder, Regulatory Disorder, and Sensory Integration.  It was such an information overload, I was exhausted at the end.  Unfortunately (pregnancy brain) I don't remember what a lot of these disorders mean, thankfully she'll be sending a full report within a couple weeks.  He was so well behaved at the appointment, I was rather pleased with that, except she saw none of the hyperactivity that I see on a daily basis.  I guess I was a little disappointed, I feel like she 'missed' something, and besides the diet, she really didn't tell us where to go from here.  I feel like I have more questions now than I did before we went to see her, and I'm disappointed because I thought we'd leave with more answers.  Plus, she didn't diagnosis him with ADHD, but then handed me a handout all about ADHD, books etc, so now I'm doubly confused.  Now I wonder if I should still be posting on this board, or try and find a forum for these other disorders.  Let me know if that is the case, I don't want to offend, or overstep my boundaries. 

She first wants to start with a dietary change, because she thinks that maybe he's allergic to gluten and casein.  She wants to see if there is any change in behavior off those (as well as sugar and additives).  So my question to anyone out there, how do you transition to a GFCF diet???  I feel so overwhelmed with this!  Not so much with Casein, since we don't eat a lot of dairy anyway, except cheese on pizza, but gluten-free???  I grind my own wheat and use it as flour.  Can I just buy rice and use that instead?  How do people afford going gluten-free?  All of the pre-ground flours out there are so expensive compared to regular flour.  If anyone has any tips, I'd greatly appreciate it.

Thanks!

Carrie

Hi Carrie,

First of all, don't ever feel badly that you are confused!! We all were in your shoes at the beginning of our journeys, and many of us (me!) still often are! Unfortunately, there is no "one size fits all" answer to what we are all dealing with. It is not at all uncommon to not diagnose ADHD at your son's age. Our son was initially diagnosed as language delayed, and PDD nos (pervasive developmental disorder not otherwise specified...talk about confusing!). We were told he displayed traits of ADHD but it was too early to confirm at the age of 3. It's surprising but refreshing to me that you saw a medical doctor that actually gives credence to dietary intervention because most of the medical professionals we have seen, which are many, don't. There are laboratory tests that can confirm gluten/casein intolerance and I would ask your doctor about them. I know Great Plains Laboratories is one of the better known ones. The problem with these tests though is that if your son tests negatiive, it still could mean he has a sensitivity and the diet could still help him. But if he tests positive, it means you're on the right path! There is a terrific website, gfcfdiet.com which will give you a complete product information guide, recipes, and just about everything else you need to know about this diet. Yes, it is a big undertaking, but if it works it's well worth it. There's also the Feingold Association, and they have an absolutely wonderful group of parents on their message board who are so supportive and knowlegable. Alot of those parents have put their kids on gfcf as well as Feingold. We tried it with Kendal for several months and did see some improvement but not enough for him to be successful in school. If you are like me, if you do eventually get to the point of using medicine, at least you will be content in the knowledge that you have explored all the other options.

And, lastly, please don't ever think you are offending or overstepping your boundaries on this board or any other! All we are is a group of loving parents who are trying to do the best we can for our precious children, and reaching out for support and advice to others who walk in our shoes.

Good luck,

Kathy

Carrie,

I'm sorry that you left your appoinment with more questions than answers.  I think that happens quite frequently, though.  I always suspected that my son was ADHD, but waited until his 7th well care visit to have him "evaluated" by our pediatrician (whom I love).  The doctor spoke with me privately, read the forms completed by his teachers, and then spoke with Matt privately.  I was SURE that this would provide me with the answer I needed................not so much.  When the door opened, Matt and the doctor were laughing and talking about the Pgh. Penguins!!  Like good buddies. He did not see the child that we saw at home.   When it came time to discuss his eval., I was told that he a just a typical boy and that he was very similar to his own three sons.  I remember my head spinning, just like yours is right now.  It wasn't until I kept pushing and found a psychologist who told me within a 10 minute interview that he suspected adhd.  Thank goodness!

I guess what I'm trying to say (sorry so long winded), is don't stop with just one doctor.  You are his mother and you know him better than anyone who just sees him for a doctor visit.  And don't apologize for coming here.............the girls on this board have been  wonderful and want to help in you any way possible. One more thing................I think that it's great that you are having him evaluated at this age.  Although they say it's hard to diagnose so young, moms know.  I wish that I didn't wait so long with my ds........his grades haven't suffered (thankfully) but his whole socialization and our home life would have been so much better, sooner.   

Take care,

Andrea

PS  We tried the Feingold Diet since we would do anything to avoid medication.  Saw a few improvements but not enough to not medicate. 

Thanks for the support, it's good to know I'm not the only one confused with this.  I'm going to look into Feingold and see if that's something I want to do or just GFCF.  As well as see if I can get him tested for allergies, although I think I'll still do the diet for right now to see if his behavior changes at all.  I found a psychologist, last week when I was looking for a doctor, who would be willing to evaluate him at this age, as well as do behavior therapy if she thinks he needs it.  I think I'll call her tomorrow and see if I can get ds in for an eval with her as well.  I feel better about getting a second opinion after hearing others did as well.

Carrie

Hi Carrie and welcome to the board!  My son was diagnosed with Sensory Processing Disorder at 2 yrs old and everyone kept saying "you'll want to have him evaluated for ADHD when he gets older".  He was showing the ADHD signs back then but he was only 2!  So we started Occupational Therapy for his Sensory problems and it really helped us see which behaviors were caused by SPD and which one's were the ADHD.  By the time he was 3 the SPD symptoms were getting better but the ADHD symptoms were getting worse (hyyyyyyyperactivity/impulsivness). Everyone kept saying "they won't diagnose him before 6 yrs old" 

But we were very lucky.  Our doctor was willing to diagnose him even at 3!  I think it was because his self-esteem was really suffering-that and luckily Logan was having a really hyper day when we went to the doc!  The doctor said "Some hyperactivity is normal for kids that age but that (he said pointing at my hyper spaz son) is not normal!  I feel for you.  I know how frustrating it can be if your child is on their best behavior on the one occasion that you need him to act out!  This was the one time my son actually did what I needed him to do!

I agree with Matt's mom, you don't have to stop with just one doctor.  Trust your gut! Even if you can't find another doctor, I would suggest seeking treatment for the things that he's already been diagnosed with and it may help pinpoint the symptoms. 

I also agree with Kathleen0515. It's worth your time (and $) to take the food sensitivity test.  It may be something you want to do before you go through the trouble of going completely gfcf. Good luck and hang in there!