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Forum: Children with Developmental Delays and Disorders


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February 2nd, 2012, 07:53 PM
Join Date: Dec 2010
Posts: 11
Hi! I'm Tracie. I was on JM for years a few years ago under a different screen name, and though I have been lurking in on you girls for a while, I haven't posted. I am hoping to become a regular member here as I desperately need to talk to people that understand what my husband and I are going through.

I won't hammer you with all the details about my son right now, but I did want to ask a question. Did anyone else have an extreme amount of trouble getting a diagnosis for their child? My son just turned 2 and his issues really began at 7 months of age and so far no one can offer an explanation as to what is wrong. In fact, no one has really tried.

When he was 16 months old, his doc suggested he be tested for autism, but didn't offer us any clues as to how to go about getting this done. We searched and searched and finally this pediactric NP has us on a waiting list to be evaluated. (Probably won't be till this summer.) Under my insistance he was tested for fragile x yesterday but the results won't be back for 2-4 weeks. We even had him tested for diabetes months ago because he can not put his drink down hardly and drinks more than any human I have ever seen. At 2 years old, he will wake up 4-10 times a night thirsty and drink a total of 18-30 ounces a night. (Of course the doctor laughed at us and made me feel like a complete idiot and then laughed again when the results came back and he was not a diabetic.)

I just feel like we shouldn't be the one's demanding tests and scouring the internet to try and figure out what is wrong with our son. I don't understand why the docs didn't take more of a roll in this. (We have been through 3 different doctors and it's been the same with all of them.)

Has anyone had these problems? Does anyone else not have a diagnosis for their child?
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February 2nd, 2012, 07:58 PM
BensMom's Avatar Ephesians 4:29
Join Date: Apr 2005
Location: The Lonestar State
Posts: 50,214
I had the same experience... being laughed at, I mean... but it wasn't in relation to autism. My younger son had a constant fever, got sick all the time, etc. The doc kept blowing me off, told me to keep a detailed record of illnesses and temps, laughed when I brought in a spreadsheet of everything, and finally told me I just had a kid who got colds more often than other kids. I found another doc who diagnosed him with IgG deficiency and neutropenia. Shortly after that, he had intussusseption, RSV twice, and a host of other things that probably would've killed him if I'd complained to the first doc about his symptoms.

If you're not getting answers, keep looking. Doctors are hired contractors just like electricians or plumbers. If they're not doing their job, fire them and find someone else.
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February 2nd, 2012, 08:33 PM
AlexKatieAiden Mommy's Avatar Linda
Join Date: Apr 2009
Location: Wisconsin
Posts: 3,009
First off I want to say Welcome. Please feel free to join in the discussions at any time. This is really a great bunch of ladies.
I have to agree. One of the docs that my kids went to was a complete idiot (he really was or I wouldn't say that), but I am very fortunate now that they have an awesome doctor who listens to what I have to say and concerns that I have. It took a while and asking others in my area who have children with special needs before I found her, but the searching was worth it.
I am also fortunate to live in an area that has between 3-6 different autism centers in this area that can evaluate and diagnose autism and provide therapy. So when it came time to have Alex (my 7 year old) evaluated all I had to do was call one of them up and find out what was the next step.
Sorry you are having issues with the doctor and not getting any guidance but I do look forward to getting to know you better.

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February 2nd, 2012, 10:20 PM
Adriana's Mommy's Avatar I <3 my kids
Join Date: Jul 2007
Location: Inland Northwest
Posts: 7,977
Hello and welcome..

I'm so sorry your going through all of this.. I too have been down that road.. Not with autism but with my son's allergy issues. My son had allergy issues since he was 2 months old.. My son is a classic case, severe eczema, asthma (diagnosed at 8 months old but started at 4 months old), food/environmental allergies, and Hayfever (diagnosed at 18 months old). I had to do the research on my own and even paid out of pocket for an allergy test. In the end my son was severely allergic to cat dander, at the time we had one cat. I'm glad I did what I did because if I was not proactive about it, he would have been suffering for a very long time..

As for my son's Autism diagnosis. I'm blessed that I have a family member who works with autistic children and she is helping me through everything. I always thought A.J was behind due to him being sick so much as an infant but one day I asked for her opinion. That's when it all began. I didn't want to play the game with the Pediatrician nor did I want to rely on the state for help. I went strait to a child Psychologist in my area. My son's symptoms are subtle to a untrained eye but to a trained eye he stands out. So if I relied on a Pediatrician, I think he would have been over looked just like his asthma. In the end, my family member was correct and my son has Autism Disorder.

I would say, do what you think you have to do for your son. If you don't like the answer you get from one doctor, try another.. Keep going until you find one that will listen to you.

Last edited by Adriana's Mommy; February 2nd, 2012 at 10:36 PM.
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February 3rd, 2012, 06:35 AM
Carwen*Angel's Avatar Fly away on my zephyr
Join Date: Feb 2006
Location: Manchester, UK
Posts: 66,539
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Welcome to the board, Tracie. I really hope you stick around and become a regular part of this strong and supportive community of mums.

It did take a bit of a road to get to Daniel's diagnosis of autism spectrum disorder, yes. Though in the UK that's more because there are numerous agencies who need to be involved, including the pediatrician, any therapists involved with the child, the GP, the school, the educational psychologist, any local authority inclusion team involved via the school, and the school doctor. That's a lot of people to be meeting up / corresponding about one child and reaching an agreed diagnosis. I didn't feel the time it took was unreasonable.

I definitely agree about being persistent and following your own intuition, though. My son used to constantly get every bug and virus going around at school. He spent tons of time off in nursery and reception class. I was convinced it was because he was so rigid with his food, and wouldn't eat what I would consider to be a healthy balanced diet, though we do try. I believed his immune system was low. I asked his GP about a vitamin supplement and whether she would recommend one, and she didn't recommend it for a child his age, and said he must be getting what he needs or he'd be sicker - Daniel's original pediatrician for his developmental delay also pooh-poohed the idea and said the amount of bugs/viruses he had had was not unusual.

However his original pediatrician left our authority, and in our first meeting with the new one, I asked her the same question, and she said I could be right, and recommended which vitamins to get. Daniel has been taking them daily ever since and rarely comes down with bugs and viruses now - his time off school due to low-level illness has reduced by at least half, and it also means he gets cranky far less often. I think after a time you get a hard shell to people ridiculing/laughing/pooh-poohing you. At the end of the day, it's your child and you want the best for them - and sometimes the only way to get that is to keep shouting.

I do hope you get some answers soon!

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February 4th, 2012, 10:13 AM
Join Date: Dec 2010
Posts: 11
Thanks so much for the responses ladies. It's good to talk to people that understand my frustrations.
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