BellaOnline Forums Family Special Needs Children Undiagnosed special needs child

Hi everyone,

I have a son named Logan who is 7 1/2 yrs old. Ever since he was approximately 9 mos old we (doctors and my husband and i) have been searching for a reason for his delays. During my pregnancy i had a great deal of trouble gaining weight (ultimately only 12 lbs total) which was a huge difference from my pregnancy gain of 50 lbs 3 yrs prior. My first child weighed 9 lbs 3 oz, was 22", then Logan weighed only 7 lbs 2 oz, 19" (not a small baby but small for me. I am almost 6'). He failed to gain weight and was diagnosed early on (8 wks) with failure to thrive, then pyloric stenosis which was corrected surgically. They assured me he'd catch up and all would be well. He continued to stay very small (about half the typical size for his age) up until the age of 5. Now he is overweight. There is a syndrome called Prader Willi that this is a main symptom of, but he tested negative for that. He sees genetics, neurology, endocrinology, GI, and every type of therapist you can name. He has sensori needs and has sensori integration therapy. He has significant delays in speech and is not fully potty trained. He has had all of his chromosomes counted and looked over numerous times. He has had all of his organs biopsied. He's had cameras put into his stomach and lungs (chronic cough but no asthma, no cystic fibrosis).He has had bone growth x-rays, full body scans, MRI's and cat scans. He has had seizures. He cannot read, write, count or do colors, but he can dress himself including shoes, ride a 2-wheeler, and take apart and put together anything. He can play any video game you put in front of him. They ruled out autism because he is extremely outgoing and friendly. He currently has an IEP in place in school and recieves outside services, but without a diagnosis it's getting harder to find programs to suit him. The other kids are getting older and doing sports, after school activities etc, and i cant include him because the kids get frustrated at him for not following the rules/directions. I cant enroll him into a general population camp because he may wander away and lacks the verbal skills to tell anyone his name/phone number. If anyone anywhere has ever heard of another child like Logan, I would love to hear from you. It's been a long road with no answers, and i am hoping the net will be the key to unlock this door. Thank you.

Hi
I have No IDEA at all what to suggest but I felt like I really just wanted to give you some support! I have 2 sons that have a Fragile X Syndrome...to long to explain .....but because of the Fragile X Syndrome they each have different "special needs". The only advice I can give is to NOT give up! IF one Doctor cannot give you an answer then demand another doctor! I did! The doctors kept telling me my sons were autistic but like yours did NOT fit the criteria! So I went to too many doctors to count until one FINALLY gave me an answer! As for school No matter what state you are in..you are his MOM, that means, YOU DECIDE what is best for your son and you FIGHT for what he needs! Diagnosis or NOT the School HAS TO provide him with an APPROPRIATE EDUCATION and you have the right and so DOES YOUR son to be provided with whatever his needs are even if theat is One on One teaching. Period. That is FEDERAL law. Look into getting a copy of the federal IDEA. If you need someone to talk to..my yahoo ID is jacobsmom30
Take care and Good Luck!

Sincerely
Keri

My son is very friendly and outgoing, yet was diagnosed as a high functioning Autistic PDD-NOS about 2 years ago. I'd get a second opinion on that diagnosis, preferrably at an institution that specializes in such with all day evaluations by a Pediatric neurologist and psychologist. Being able to take things apart and put them together very well, combined with the speech delay, wandering away, not following rules of a game, etc. sounds like it could very well fall under the Autistic spectrum.

Best wishes!

Hi Allyson,

Thanks so much for writing!

Boy, lady, you sound like you've got your hands full with the famous frustration of 'not knowing' and believe me, I feel for you because I remember that feeling all too well and it's a pain.

Both readers that replied touched on some good things: first and foremost, never! give up. I can't say that enough. The second is that your child does show quite a bit of signs of Autism and it is a great idea to get in touch with an Autism Chapter near you and ask about testing again. I know it seems like a pain but could be well worth it.

In the meantime, let me check around to some 'professionals' I have known for years and am glad to call my friends. Suggestions never hurt anyone right?

As far as sports go, have you considered getting him into your local Special Olympics or a Challenger Baseball League near you. Both are great opportunities for our kids and tons of fun for them. They feel like all the other kids, laugh, have tons of fun, and it's something they can do like their siblings but their siblings can't, lol. My son loves that. About the Challenger Baseball League, it might be called something else depending on where you live. If you'd like more information about any of these, don't hesitate to ask.

Take care and hang in there!

Chele
specialneedschildren@bellaonline.com
Special Needs Children

thank you so much for replying, i feel like the answer is getting farther and farther away with each passing day. Logan is such a joy that honestly, i have to admit, finding an answer to what his condition may be tends to find it's way to the back burner. Seeing him smiling and laughing and playing is so wonderful, considering when he was a baby i wasnt sure what he'd be able to do at this age. i was told me may never walk or talk to the point he is talking. I think i will order another communications evaluation for him, and since my last posting he has had another EEG, with results not yet in. I would like to get him re-tested for autism, but my pediatrician seems to think that because he is so social it can't possibly be autism. the thing is, is he only lets us (immediate family members) touch and hug him. the teacher made a comment about him not wanting to be touched and i was surprised by that. so maybe it could be autism? not that i want him to be 'labeled' but it would make it so much easier if i just knew. WHen he was born, the cord was also wrapped around his neck twice and his hands and feet were blue. the doctor cut the cord off of his neck while only his head was born, leaving the shoulders in the birth canal while he struggled to untangle him. I have this all on video, and he didnt draw a breath until the very second the 1 minute apgar beeped. No doctor i have come across is willing to say that this is what caused his problems, but its always been a question in my own mind. The thing is, he got decent apgar's and once a doctor hears this, they say 'oh, no way, it wasnt the birth'. Now, i am no doctor, but i have had 2 kids, and 2 very different deliveries. My daughter got the identical apgar's to Logans. She was born and came out crying. they put her on my stomach,and my husband cut the cord. she was pink and writhing around. they weighed her and then gave her right to me. she got an 8 at 1 minute and a 9 at 5 minutes. Logan came out and they wisked him to the other side of the room. he was discolored in the appendages and didnt cry. they had cut the cord from his neck and gave him oxygen with a mask. i didnt hold him for 45 minutes. how can these 2 babies get the same scores? it's always confused me. i worry that they may have been covering thier own mistake because they had seen that the cord was around his neck in an ultrasound 2 days prior (i was 10 days overdue). they sent me home for 2 more days before inducing even though they were well aware of the cord. i asked for a c-section, but was told there was no need. I just want to know what is the cause of my son's problems. If its genetics, so be it. he's happy, he's healthy currently and i love him and my daughter more than anything. it wont change anything to know, but it will help him later in life. I appreciate you all listening, it gets very lonely sometimes talking to my friends with 'typically developing' kids, they just cant understand what it's like. i just want him to have the fullest life possible. i will check out all the suggestions you have made, and thank you again for being here.

I'm Shari, new to the boards, actually as part of my job right now! I am a mom with 5 children. 2 of my kids are special needs. My 14 yo son was finally diagnosed with a miriad of issues. It took over 10 years to finally get down to the bottom of things, and even now, there aren't many answers.
We were involved in a head-on collision when Andrew was 2. He stopped talking, then started back up, but was delayed about 8 months. My search for answers began. The teacher said "ADHD" the doctor said "BOY". The teacher said hold him back, I said NO WAY!
A little over a year ago I had a complete neurological study done on him. He had the MRI, which showed no abnormalities. He went through 2 solid days of testing and at the end, we had a piece of paper we could take to the schools and say "This is what he has" Ready for the list?!
ADHD (inattentive type)
PDD-NOS mild
encephalopathy (brain injury unknown origin)
encopresis & enurisis
Hypotonia
and I think there's a couple more I can't remember

with all that said, he also, this past month or so, had the genetic testing for Prader Willi Syndrome - it came back normal, but the nurse said there is a chance (though very slim) that he could have that syndrome. The only 'symptom' he lacks is that chromosone abnormality.

allyson - if there is any way you can have a complete nuero - neuro/psych evaluation, I would say it is worth every cent of the cost - even if insurance won't cover it.

I hope you can find some complete answers regarding Logan.

Hi Silly Goose !
Just want to extend some support to you . I have seen how frustrating it is not to have a diagnosis . There were times when my daughter was a baby ,and we were inducted into the "Special Needs" world, I almost felt "Lucky" that she obviously had Down syndrome and I didn't have to WRANGLE support services for her as hard as some other families I met.It is very frustrating for you I am sure, and I wish you good luck.
As far as activities go:
I wonder if you are a client of any programs , such as the Regional Center system that we have in our state? I don't know where you live but our Regional Centers help to place and pay for special camps for kids like ours.Not just kids but adults with special needs too..( As well as other services such as behavior help , respite care..)
There are two really awesome camps in the Los Angeles area , and I am sure there are more to find out about.
My daughter also plays little league in the spring, Challenger Division like someone else mentioned. It is FUN for her and ME ! She also loves to play soccer in the fall with AYSO in the VIP Division.(She even had the coolest action picture in the newspaper once!)
Another place to look into is your local parks and recs, they are starting to have activities for special needs kids . Sports and social stuff! If yours doesn't ..hey ..lean on them to get with the program. As well as Special Olympics .
My kid is way more involved with stuff than I was as a kid.
Best of luck to you , Monie

When my son was a baby, I met some great families in parent support groups sponsored by the local Arc - there was a great variety of diagnoses and some children didn't have a diagnosis, but we had so much in common in our hopes for them, their need for a little extra support and encouragement, and how proud we could feel for small accomplishments, and amazed at their talents and abilities we didn't expect for one reason or another.

Sometimes friends who have mainstream babies just don't feel comfortable talking about their troubles and concerns for their children with one another. I have a group of friends who don't have that problem at all! I don't know if that's a good thing or not, but we have stayed friends for many years, and I treasure them as much as moms I have met in the support groups for families of children with special needs.

I hope you find kindred spirits of both kinds in your own community, and I'm glad you have found us here.

Pam