How did you get a doctor to listen to you? - Autism Spectrum Message Board

taweavmo3 · 05-07-2005, 02:46 PM

Hello all...I was wondering if any of you could share your stories on how your children were diagnosed?

I am worried about my daughter....she is 3 years old, and was recently diagnosed with celiac disease. We have been on a gluten free diet for two months, and physically, she is looking much better. Behaviorally, we have seen some progress too. Her tantrums are much more manageable.

Her speech is still extremely unclear though, and I have noticed that some words she used to say very clearly, are now garbled. She has no interest in potty training at all, and will scream if I put her on the potty chair. I haven't even pushed the issue. She also has small quirks that are odd, but may be nothing. She has a thing with stickers and labels. She has peeled off the labels on all my canned goods. If she sees anything with a sticker, she will pick and pick until it is off. If we go grocery shopping, she'll lean over in the cart to try and peel a sticker off. She also flips out if any kind of dirt or food gets on her, or is near her. If she's in the bathtub, and small piece of dirt is in the water, she completely flips out. She sometimes flips out over loud noises, like the vacuum cleaner or blender. If I'm using the mixer, she'll run and hide until I stop.

We have a new pediatrician, who I like. But, he seems to think that all of this is a result of celiac disease, and that her developmental delay will improve soon. So, he told us to wait 3 more months and see how she is doing. This really aggravates me, because if the progress keeps up at the slow pace it is now, I know there is no way she'll be ready for kindergarten in two years. She can't start most pre-schools because she isn't potty trained. She would have to be with the 2 year olds. I'm worried that the window for improvement is closing fast, and if our doc keeps waiting to see progress, it may be too late. She may not have autism, or anything else for that matter, but I have learned to trust my instincts. My instinct says there is something more going on than just celiac, but I can't get anyone to listen.

Any advice or thoughts??? Thanks in advance!

jeffreys mom · 05-07-2005, 03:14 PM

Hi, My son changed dramatically in three months when I removed dairy from his diet. I can see where you both are coming from. From the Dr. standpoint, it can take up to nine months for Gluten to leave the system but in three months he may be able to tell more as to her development. However, it can take a long time to get an appointment with a Developmental Pediatrician to have her evaluated for Autism so you may want to schedule an appointment for three months from now and if you don't need it cancel it. That may be better than waiting three months then having to wait another three months to get an appointment. Scheduling it now for three months from now puts you in a better position if you need to have her evaluated for Autism. Good Luck

AggieMom · 05-07-2005, 03:25 PM

I don't really know much about celiac disease, but even if her delay is being caused by that I would think she would be eligible to be evaluated by the school district. I would contact them and see if they will. Then she could get into a PreSchool class for kids with disabilities even if she's not potty trained yet and get some help to catch up. If it resolves overtime she might not need the services eventually, but I'd rather have them now than to wait and see.
My son's pediatrician didn't even catch that he had a problem. We had noticed some "funny" things he did, but he was the youngest of 4 and we didn't know that what we were seeing were signs of a problem. He had normal developement until about 20mo so we just thought it was "his way" to be quieter, entertain himself, etc...We were attending a gym that had childcare and actually one of the women who worked there noticed he didn't respond when she called his name and asked if we had had a hearing test. I didn't think there was anything wrong with his hearing, but I started to look at the internet and when I searched for things like "not responding to name", "lines things up", "repeats words", etc...well it led me to a lot of information on Autism. So I started making calls to find out who to talk to and ended up at ECI who came and evaluated him and then helped us transition him into school. When I look back, it all really happened so fast!
Now he's about to be 7yrs old. We still see the same pediatrician when he's sick, but you should have seen her face when I told her I had contacted Early Intervention and the felt had a developemental delay! She acted like I was going to blame her for not noticing -"Well....I would have caught on to it at his last checkup if he hadn't had a fever and we couldn't do his immunizations. I would have been able to tell you if he had come in." Well he did end up getting all his shots before I found out that that "might" be part of the problem, but that's another issue best left alone.
Anyway, go with your instincts. Contact the school in your neighborhood or the administration office before school ends this year and see if you can get some help through them.
Good Luck,
AggieMom

MOM23ANGELS · 05-07-2005, 04:13 PM

you are the expert when it comes to your child. if your instincts are telling you there's something wrong, then go with it. go ahead and schedule an appointment with a pediatric neurologist or developmental pediatrician. my son was evaluated and diagnosed 1 year before his pediatrician would have even referred him to anyone. the earlier the intervention, the better the outcome. good luck.

BetsyAnn · 05-07-2005, 10:06 PM

I agree that you need to have your son evaluated. Set up an appointment with a developmental ped., like another poster mentioned you can always cancel it if you feel you don't need it. Also contact your school district on Monday and have your so evaluated for early intervention. If he is delayed he should qualify for their preschool program.