Developmental delays and more....

Dorothea - posted on 03/13/2011

I would ask for a second opinion from the neurologist. Good luck.

Jessica - posted on 03/27/2009

To all the moms that have responded to my original post:

My son Connor has finally been given a diagnosis. The new neurologist we saw in January ordered an MRI of the brain, a test nobody else had ordered!!! I just got the results this past Tuesday. Connor has Partial Agenesis of the Corpus Callosum(ACC, for short). For those of you that may not have heard of this, I will explain. The Corpus Callosum is the part of the brain that connects the left and right hemispheres and allows the 2 side to communicate. With ACC, part of the corpus callosum is missing, so the 2 sides of the brain cannot function together properly. Some people do have complete ACC, which is the complete absence of the corpus callosum. This part of the brain develops during the 5th and 16th weeks of pregnancy and for some reason it doesn't always develop properly. The corpus callosum will not regrow, yet it not diminish. There is no medical treatment for it. The only thing I can do for my son, is already being done. The recommendation is PT, OT, speech therapies, special instruction. He is getting all of these now. I have yet to find out what his prognosis is, or what his future holds. I do know that Connor is a happy, loving, free spirited little man who is doing his best to carry on with his life!! He is the most lovable child I think I have ever seen. Now that we know his diagnosis, my main goal is to get him the best possible educational services I can find. Thank you all so much for all of your imput!!!

Tabetha - posted on 03/25/2009

Hi My name is Tabetha and I have a 5 yr old with Autism. She claps a lot, laughs for no reason and is extremely fond of peoples hair. She has Hypotonia(also wears AFO's) and NO speech at all (she does sign though.) It took a very long time to get her diagnosed. At first she was just globally developmental delayed! The developmental pediatrician is who FINALLY helped us get her diagnosed.

Kathryn - posted on 03/23/2009

hi my name is kathryn..

i have four year old twin boys one of them marcus has the same as your son, i noticed problems with marcus at the age of six months he was as floppy as a new born, he is having the same treatment as conner, he walked at the same age as well. the doctor have said autism but we dont know how bad yet. Does conner clap his hands alot and kick is feet out when he walks he also is very touchey love faces and hair. marcus does speak but not very well somtimes two words at a time. please keep in touch it is nice to know there are other mums going through this. thanks kathryn

Dinorah - posted on 03/22/2009

Hi Jessiac My son was born at 37 weeks and also gets PT,OT and speech (still does he is 9) He also had Hypotonia above the waist and Hypatonia below the waist. He didn't walk until he was 2 years old.He wear AFO to help with the toe walking. We did biotox on his acuillis tenden and he had the tenden cut his legs were casted for 6 weeks It all worked for about a year.The doctors told me He has mild cerebral palsy and ADHA. He is on Methylin for the ADHA and therapy for the CP. He didn't speak clear until he was 5 years old. He has come a long was. Now he speaks almost clear and is making sentences.

the road we are on is long and upsetting, but we are parents to special boy. we are very lucky. hang in there it will get better.

Leah - posted on 03/22/2009

Hey Jessica, just Leah again. Anna-Bellah is 6 with the intellect of a 3and half yr old,m she is still not toilet trained, and still cannot fully dress and undress herself either, make everyone you come in contact with know about Connors special needs and you'd be surprized in how many people will say, I know someone with a child who has......(whatever), and they maybe able to also help point you in another direction, and it makes life for you a little easier if people understand, that you little person, is not just naughty or lazy etc, and they become more helpful and certainly more understanding, Ask, ask and ask, cause no one in any organizations seem to be willing to give out to much information, and ask the same questions over and over again and then finally they will really help!

Leah - posted on 03/22/2009

Hi there Jessica, it's almost a copy of my daughter who will be turning 6 in a few weeks. She found it very hard to copmmunicate even though she understood Most things, and she would bite something terrible, Anna-Bellah attended the local special school for play group, preschool, prep and is now in grade 1. Anna-Bellah and I were both taught signing and verbal communications and with the hard work and more hard work, she is now speaking and signing. I know just how you are feeling, she couldn't tell me she loved me untill she was nearly 4 and half, and I just cried. She also has autism, adha, ataxia (a form of CP), developmental delay, and she wears AFO's for balance. Unfortunatly there is no fast sollutions, just lots of loving and hard constant work. Use the OT's and Speech Therapies everything you can get your hands on, and always remember what works for one little person may not work for little Connor, but within saying that, any and everything is worth ago to someday have your precious little man say : "I LOVE YOU MUMMY". It's hard at times and tiring, but we are here and will suport you in what we can. Take care, and always remember he loves you.

Andi - posted on 03/21/2009

Hi I ave a son who is 8yrs old we live in scotland we ave been ongoing with health visitors doctors speech therapy & occupational therapist but unfortunately after about 6 years of sloggin they ave all abandoned us wiv no diagnosis any ideas who can give us a diagnosis. The only one 2 give him a diagnosis woz the speech therapist n he has finished wiv her n has come on leaps n bounds. I feel my son is stugglin wiv school work he has fine & gross motor skill problems very hard 2 do pen 2 paper work cut using cutlery & scissors can't tie laces can't ride a bike can put on clothe back 2 front & inside out & lots more inabilities please if anyone can help i'm so low n losing my fight 4 my son & would just like some more help wiv school & a DIAGNOSIS!!!!

Darla - posted on 03/20/2009

my daughter will be two next week and we just got a diagnosis of Phelan-McDermid syndrome. She had genetic testing done with the micro-array. It showed a deletion of m.2. From what I have read just today on this it sounds like it is often missed and some have to have the genetic testing done a couple of times. My daughter fits this syndrome soooooo well. Good luck. I know how frustrating it is not knowing.

Laura - posted on 03/20/2009

Dear Tanya,  My 8 yr old sound a great deal like your son.  He walked late and talked at 4.5, & is beginning to dress himself if there are no buttons or zippers & knows now when he needs to go to the bathroom if he doen't get too immersed in an activity.  He is now reading at almost grade 1 level with 90 sight words but con't not print easily due to poor fine motor ability.  His left side of his brain works remarkable well but the right is damaged, he is learning to type and loves computers & is doing well with math.  He is globally develomentally delayed by 3 years with ADHD and NLD.  His special program at school has been a great success he is with his classmate 80 % of the time and has a teacher's aid with him, he is a flight risk(with no stranger awarness and will go with anyone).  Altough is still has poor muscle tone, fine motor skills PT, OT & speech, his balance is not the best with appropriate spatial distance from others (no personal space awareness) , he loves people and participating in sports. The one on one attention he has recieved since he went to a developmental daycare and has continued to present has done wonders.  Signing was the gate way to communication fro my son since he was 3, he stopped using most of his signs when he began speaking but on occasion still uses them.  Best of luck 

Charlene - posted on 03/19/2009

hello my name is charlene corker and my is 4 years old and  he has a speech delay also .He has been to  early on also but I don't know what to do.

Lori - posted on 03/19/2009

I strongly suggest having your son tested for Fragile X Syndrome. This is a simple blood test that your pediatrician can request. I have a seven year old son with this condition, and he is doing well thanks to early intervention services. Please let me know if you need more information!

Amber - posted on 03/19/2009

Jessica,

Our daughters story sounds just like your sons, but Sydney was diagnosed with Spastic Diplegia CP.  I want to share with you that YOU SHOULD NOT JUST LISTEN TO ONE DOCTOR!!!  We were told that Sydney's MRI was normal by doctors at Phoenixs Children and then that it wasn't normal by St. Joses.  Sydney recieves all the same services as your son too.  Hope this helps!!!  They found 3 spots on Sydneys white matter!!!

Tanya - posted on 03/19/2009

Hi, I have a 10yr old son who is Globally Developmentally Delayed of unspecified origin. Which just means they don't know why he is the way he is. He's behind by about 4 yrs. He didn't learn to speak or dress himself until he was 3. And even then he couldn't do buttons or zippers. He still can not tie shoes. He was also diagnosed with by an independent psychologist with ADHD and ODD but his developmental dr said that is bogus and he doesn't have it. He's reading and writing is at an early gr 1 level and he is grade 5. But he is amazing with numbers and computers. He is in speech, physiotherapy, and occupational therapy for poor muscle tone, gross and fine motor skills. He has gotten better as he as gotten older and more therapy. He has also been in a special school program for the last 3 yrs that gives him one on one teaching time and that has done wonders. Signing is a great method for non-verbal children.

Good Luck!

Tonya - posted on 03/19/2009

Obviously there are so many children with the same exact symptoms. I didn't know that until reading all of your posts. Why aren't there any answers? Do any of your children suffer from seizures too? My son has been having seizures since he was 5 months old. Very soon after he received his 4 month vaccinations. Is there any connection? Let me know your thoughts! I'm frustrated to say the least.

Kathi - posted on 03/19/2009

Quoting jessica:

Developmental delays and more....

Hi, my name is Jessica and my son Connor is 4. When he was about a year old, Connor was diagnosed with developmental delays and hypotonia(low muscle tone). He has seen a pediatric neurologist, geneticist and GI. None of those doc's could come up with any diagnosis other than the ones I mentioned earlier. Connor has been getting early intervention services(PT, OT, speech therapy and special instruction since he was about 14 months. He did not walk until he was 2 1/2 and he wears orthotics for support on his feet(he also has pronation of his feet). All of the doc's say he is not Downs or CP or even autistic, but I feel some signs point toward some kind of autism. Connor also does not talk yet. He only babbles like a baby. He seems to be very bright and understands when he is spoken to. He can follow directions and he responds to other people very well. It just gets so hard not having any answers. I would love to hear him speak to me. Anyone else here in a similar situation???? Thanks!

Have they tested for chromosomal abnormalities? My daughter had all thoses problems+ some thing doctors wouldn't recognize...they made me out to be paranoid. I was desperate, I knew something else was going on...they did chromosomal and genetic testing, low and behold, I was not crazy. She has DiGeorge Syndrome...which a high percentage of these children also develop some form of Autism! Yes, now she also has a diagnosis of Autism! The best advice I can give you is research the doctors...find a really good developmental specialist, preferably at a teaching hospital, like All Children's Hospital or one of those and it is worth it to travel to one. God Bless. I'll keep you and your baby in my prayers that God puts his healing hands over him. 

Katrina - posted on 03/19/2009

Hi Jessica my name is Katrina I have a 4yr old name Thomas whom When I delivered him came out heart Stopped for no reason at all,and he had breathing difficulties. He was in the hospital for 51/2 mos he caught a newborn illness called NEC.  He was unable to be fed by mouth so they put a feeding tube in. Since then he prob has had bout 4 major surgies he has had a specialist for every bodypart, and all the answers doctors can give me is we are not really sure he has a dev. delay, breathing wise they fix things with surgery. He has had ot.pt,and speech, feeding clinic. What I learned is to be patient if they are truly not mentally disabled with downs etc. Everything comes with time he walked by age 21/2 I put him in school the PEDD program  at school and by 3 1//2 he began to talk. he's 4 now he can carry on simple conversations and learning his numbers and colors.

Kristy - posted on 03/17/2009

I have read quite a few of the replies and this sounds EXACTLY like my son Jordan....He was originally diagnosed with PDD (within the autism spectrum) but, being an 'overbearing' mother, I fought the diagnosis with 5 years of telling every doctor they were wrong. And lo and behold I was right!! My son was born on time, with SEVERE jaundice...at 6 months I noticed he wasn't babbling like other children.He reached every milestone late. He didn't walk until he was 2 1/2 yrs old( and that was with intensive physiotherapy and 3 different walkers). He still doesn't not speak well, he has about 100 words that are understood by others.He was finally diagnosed 6 yrs ago (at the age of 6) with Creatine Deficiency Syndrome. If you can get referred to a genetic metabolic specialist, it would be a great help!! He was apparently the 9th one in the world diagnosed (although, I do believe it is more common and mis-diagnosed) To finally get the proper diagnosis, my son needed to have an MRS...MRI does not delve deep enough to provide diagnosis. He also had to have a 24 hour urine sample, an EEG and a tissue sample. He is the light of my life....even though I have no idea what the future holds. Everyday is a gift :-) Please feel free to contact me if you have any questions, or if you just want to chat.

Kristy :-)

Stacey - posted on 01/26/2009

Thank you Vanessa for your response. I never give up. I always keep my head up high and strong and just figure as long as he is happy and doing things to expand his knowledge and as long as a stand behind him and fight for him since I'm his advocate then I feel I'm doing the correct thing. I wish everybody out there do the best in all you do. Kids are great no matter what the story is.

Vanessa - posted on 01/25/2009

OH I just thought I should add the some children with delays can seem Autistic because they are well...... Kinda bored so they will do self stiming to entertain themselves.

Good Luck all

Vanessa - posted on 01/25/2009

OH I just thought I should add the some children with delays can seem Autistic because they are well...... Kinda bored so they will do self stiming to entertain themselves.

Good Luck all

Vanessa - posted on 01/25/2009

Hi Jessica

I'm in exactly the same boat as you. My son is 3 and a half and walked 10 days before he turned 3.

We also have no answer as yet.

I also asked the Early Intervention about Autism and they didn't seem to think at this point even if we did find out he did have a spectrum of Austism it wouldn't help us or him.

You are doing all the right things and unfortunatly You and I will just have to keep doing what we are doing and try to get some kind of diagnosis.

Beki - posted on 01/22/2009

sorry made a misstake above it should read the doctors do not listen.

my son is 4 in march and is at the developmental age of 18 to 24 months, with speach at less than a year. his bones are also delayed in maturaty at the age of a 18 to 24 month old, lee is reciving OT,PT,S&L THERAPY, and many more. he didnt walk till he was over 2 years old and needs special boots to help him walk. it is nice to know that i am not the only one in this situation. would be good to talk more if you want. leave a message on my wall.

by the way, what country do you live in???

Beki - posted on 01/22/2009

my word!!!!! you r me and my son!!!! i can truthly say i have (and still am) i your situation with my little boy. everything you wrote above is what we have been through and are going through now. this is the first time i have come across someone in the same situation as us. test after test after test and everything comes back normal or very slightly abnormal but not enough to affect my son. still no diagnosis and i am now pursuing doctors to do an autism test. the doctors do seem to listen getting fed up of it now, just got to wait and see what happens next. please do get in touch if you want to chat.

Diane - posted on 01/21/2009

My daughter has been diagnosed by one doctor as being on the Autism Spectrum and then by others as having Sensory Processing Disorder.  We have heard Pervasive Developmental Disorder (PDD-NOS) and Auditory Processing Disorder.  Never anything conclusive.  Unfortunately, it seems as though there is a possiblity we may never have a clear picture but the most important thing you can do you are already doing.  You are receiving services for your son and you are not giving up.  Every opportunity to talk to another parent and placing our situation infront of someone give me an opportunity to find a specialist or get an answer.  If you feel as though we may be autistic have him evaluated.  There is the "gold standard" of Autism evaluation that requires special training by a psychologist.  That is known as the ADOS.  It is expensive but it used five modules and it has been determined to be one of the best diagnostic tools.  You can see what your insurance is willing to cover and you can ask and press hard to have your son evaluated by the school district.  If he is three, at least in the state of Illinois, the school district steps in to pay for evaluation and services.  It is no cost to you and remember, you negotiate with the school the number of minutes and services your son needs.  Your son is entitled to due process if the school district does not comply.  Start with your pediatrican and if you don't like what he says, get rid of him.  Yes, you can "fire" pediatricians and therapists.  Go with your gut instinct.  No one knows your son better than you do!  Good luck!

Melissa - posted on 01/21/2009

My son Tyler now 11 was almost 3 months premature. I was lucky because the things the Doctors expected to happen did not yet Tyler has always been behind and struggles every day with learning. When he was 1 they found out Tyler was not Hearing well at all and he spoke his own language. Most could not understand Tyler and it was even hard for me to as well this would make him very angery. Tyler now speakes much better but years of speech and other programs consumed our lives. It is still hard for Tyler and he struggles every day it has made him more angry the older he has become. We go to specialists,therapy,speech,reading,physical therapy and the list goes on. It is hard and i am doing it alone now but i take each day as it comes. I worry alot about Tyler the older he gets because it has changed his attitude and he is angry alot. He thinks he is stupid etc. kids can be cruel the older they get in a school setting. It is a great challenge and hard work but I feel like him and I are very lucky (Blessed) that things turned out as well as they did because Doctors didnt have as much hope that they would.

Vicki - posted on 01/21/2009

hiya, my daughter is 7 years old , She was late in walking and talking, she has had speech therapy since she was around three years old.

She was given a statement of special educational needs a year ago, she has moderate development needs and now gets 15 hours support at school, we are now considering

her going to a school that will cater for her needs.



Good luck with your little one

Heather - posted on 01/20/2009

I went thru the same thing with my son who is now 10. His original diagnosis was hypotonic cerebral palsy, then they thought he was somewhere on the autism spectrum, but all his doctors said he just didn't quite fit into any of the diagnosis really.He did not walk til he was 4 & he still is mostly non verbal, but does say a few words. He also is very bright & seems to understand all that is said to him!!He also wears orthotics on both feet & wears glasses & hearing aids.We wenth thru all the doctors, like you, trying to find a correct diagnosis for years & we finally have a diagnosis for him (received 2 years ago),that he has a rare chromosome disorder,9q34.3 Deletion Syndrome. We tested him several times thru the years & all the tests came back with him having normal chromosomes, but now there is testing called chromosome microarray available that is able to detect problems that were previously unable to be detected with the older testing methods. His geneticist suggested this to us when it became available , and low & behold we have a definitive diagnosis. You may want to ask you geneticist or doctors about this.

Charlotte - posted on 01/20/2009

hi my name is charlotte and i have a son with developmental delays and hypotonia aswell rhys turned five october 2008 and is unable to walk unaided and only babbles. i must stress to you the importance of pressuring your consulant to provide your child with a brain scan we had to fight for two and a half years for one and it has turned out that rhys has brain damage whislt in the womb caused by our genes. it is a weight off our shoulders that after 4 years we now have a diagnosis although it doesnt change the way we bring up rhys as hes our big boy and always will be its just nice to no what is wrong with him as hes never been a text book child.

pressurise them for the brain scan as they wont offer it to you if they say no keep asking never give up.

Michelle - posted on 01/20/2009

wow, it does seem like there are so many similar issues. our dd was dx with chromosomal tetrasomy 18p.  prior to reading that you'd had b/w done, I'd have sworn that was it.  it was like reading my journal.  i'm sure you're blood work would have shown you that, if it was the case.  i'd too rec looking into the spd. although dd doesn't formally have the dx of spd yet, she's not quite 2, her ot is pretty well convinced and we've had some good success with sensory therapies.  good luck and hang in there.

Laura - posted on 01/20/2009

Hey Jessica, Glad to be of help.  The best bit of advice I have been given is never stop learning and asking for help. no one can do it alone.  My son started with early invervention group and a developmental daycare.  It was the best thing that I coudl have done.  Such a resource and knowledge for me they guided me  though many mazes and put me in touch with others.  Not certain if or what is available in your area, we are in Canada and have been very perisitant in getting what we need.   Enjoy your day Laura

Lisa - posted on 01/20/2009

Hi Jessica - Has anyone mentioned mitochondrial myopathy to you? My daughter has "mito" - its a disorder where the mitochondria in the cells do not make energy properly nor use it properly throughout the body. You can find out more at www.umdf.org . My daughter has had seizures since she was 4 weeks old and started showing developmental delays at about 5 to 6 months of age. She is nonverbal (just starting to say mom) and regresses when she gets sick. She also has oral motor problems and motor planning issues globally. Kids with mito can display a ton of different problems and issues - seizures, GI problems, pulmonary issues, cardiac issues, fatigue, developmental delays, etc. Since every system in the body needs energy to function, any of them can be affected. Let me know if I can help any more. Good luck. Most doctors dont know about or how to diagnose mitochondrial disorders since it is pretty rare and the research in this area is pretty new. Hope that helps! Lisa

Stacey - posted on 01/19/2009

Hello Jessica. I have a son 7 years old that didn't walk till he was 2. The doctor diagnosed him with a developmental delay and low muscle tone at waist area. I looked into the BCIU program (not all states offer). My son receives PT, OT, and speech therapy along with special education within the district for schooling. It seems like he is achieving so much but there's times I wonder if there is more going on. Danny also shows signs of autistic, however they keep ruling it out because he's very effectionale and wants to be touched all the time along with all of that he also shows signs of ADHD. His tension time is very short unless it's with any type of computer. He specializes in that. I also have another son Zane that's 5 which has a speech delay and sometimes very hard to understand. The BCIU offered him a speech device, however he doesn't want to use in fromt of his classmates. Since he is behind on the speech part now it's affecting his fine motor skills with writing letters and determining the sounds each letter makes. When I bring the information up with the doctors about my two boys they tell me there's nothing wrong with either one. I'm sorry I didn't mean to babble.

Stacey Zbarsky

Ursula - posted on 01/19/2009

Hi Jessica!  Your story sounds very similar to mine.  My son Ethan, who is turning 12 next month was a late walker, he didn't walk until around 19 months.  That is when we had a formal assessment of him done by our school district Birth-3 team.  He had always been delayed with his milestones, but did meet them eventually.  I wasn't prepared when the team shared their results with us that our first born son was not only delayed in gross motor skills and speech, but he was also cognitively delayed.  We received services from a speech therapist, OT/PT,and a cognitive teacher as well.  It has been a long journey.  We had to fight the school district when they wanted to label him educationally austistic.  We did another round of tests that ruled out autism--I knew he wasn't because he was so loving and creative.  Today Ethan is in a DCD (Developmental Cogitive Disorder) classroom at school.  He is diagnosed as Moderately Mentally Impaired.  He also has epilepsy (which has vastly improved over the years) and sensory issues.  That is the point I wanted you to consider.  I am pretty confident Ethan has a Sensory Processing Disorder.  Many autistic children have major and  minor issues with sensory input-hypo and hyper.  Children don't have to be autistic to have this disorder.  Because of this, these children are often seen as austistic because of the similarities, but they are not.  For example, my son hates crowds, loud noises, alarms due to hyper sense of hearing.   There are some great websites out there about SPD with checklists and everthing.  It is important to know that children don't need to exhibit all of the characteristics to have a sensory processing disorder.  It is an occuapational therapist that would assess to determine a diagnosis.  I hope this helps.  Ethan is the oldest of 4 now in our family and we everyday he makes us smile.

Jennifer - posted on 01/19/2009

hi my name is jen and i also have a dev delayed 8 year old son an i thought at onr point he had pdd too.

Lisa - posted on 01/19/2009

Hi Jessica,

I'm Lisa and my daughter Arielle (who will be 18 in March!) seems to have followed the same progression as your son Connnor. Even down to the orthotics for pronation and flat feet. I'm looking back now at all my memories of the time when she was first diagnosed as developmentally delayed and got her orthotic braces and got into all the early intervention services. She was my third child, and I knew from day one that she was different than her brothers, but no one would listen to me until she was about 14 months old. She babbled and moved her hands as if she were talking, but did not have truly understandable language until she was 6. She needed help in dressing until she was almost 10. She is very verbal, but does not completely get non-verbal communication cues from others. Until she was about 12 years old, I went from doctor to doctor, She had test after test after test, because I NEEDED to know, WHAT EXACTLY IS WRONG? Well, for some of our kids, all the tests come out negative, and there is no answer and no cure. They are who they are, and we need to come to an understanding that as long as they are getting all the services they need to address their delays, and as long as they are happy and doing the best they can do, we can eventually stop looking for that magic answer to EXACTLY WHAT IS WRONG? That was the hardest thing for me to get past, trying to find out what was wrong so I could FIX IT. At around 6 years old she was given the diagnosis of PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified) because she did do a lot of things that an autistic child would do, but didn't quite fit the label because she is very verbal. I think that a lot of kids with this diagnosis fall into that category because no one can really figure out where else to place them after all the tests have been done and no answer can be found. But, in spite of her therapists earlier predictions that she would probably never be able to tie her own shoes or read higher than a pre-school level, or have one on one friendships that were give and take and not just side by side play, she has proven them wrong and now reads at a 2nd or 3rd grade level, understands sarcasm and teasing, and at 16 years old developed a few very close, personal friendships with girls a lot like herself, and it makes my heart glad to hear her whispering about boys on the phone to her "best friend" and tying her own shoes! Believe in the power of love and believe in the good in others and always tell Connor the truth about his differences and ways to overcome them, and he will be okay. Always advocate for him in school when teachers or therapists tell you he will probably never be able to do something, tell them you'd still like to try teaching him. Our kids are so sensitive and so loving and sometimes so EXASPERATING, but they can and will learn-just on their timetables, not ours. Don't ever give up on him learning to do something, but please DO finally give up that search for the answer to what is wrong-for some of our kids, it's just not going to be known. And who says it's wrong?

Blessings and Hugs {{{{{ }}}}}}
Lisa

Jessica - posted on 01/19/2009

Hi Laura. What you have described is pretty much what my son has been dealing with. The doc's have always said he is not autistic but I have had so many people ask me if he is. I see some autistic traits in him and he is also so happy and social and outgoing. He enjoys being around other people. He has also had many blood tests for many chromosomal disorders and all were negative. He also saw a pediatric GI who was sure he had celiac disease. The doc told me that celiac could possibly be the reason for his global developmenta delays, failure to thrive and he also had stomach problems at that time. But that test was also negative. I'm really hoping when he sees the neurologist next month, I can have the doc order a ct scan or mri. I would just like to rule out anything in the brain. Thank you for all your info!!!

Jennifer - posted on 01/19/2009

To the Mom of Melissa,

I too have a beautiful 14 yr. old daughter with CP. She on the other hand is verbal (very) but cant walk independantly. She has Spastic Deplisia (high muscle tone). I was just interested in how Melissa is today. Is she independant? I'm struggling with how to make the big leap into adulthood and not depending on mommy for everything. Any advice would be greatly appreciated. Thanks and God Bless. Jennifer

Laura - posted on 01/19/2009

Hello Jessica,  I was actually lead in this path by people who though my son was austic.  What I knew of autism I felt he was way too social and friendly but did have a few traits.  Doctors reassured me he was not austic but globally developmentally delayed.  Then someone gave me an article on Aspergers and there seemed to me more identifying traits, so when we had our visit to his developmental pediatrician she again siad he was way too social, did have austic traits but was more like to have NLD.  She arranged another apt with the physchologist ( we saw 2 years before) and after 4 hrs of testing, this time he was able to do most of the tests to some degree. ( 2 years ago he could not complete the tests due developmental delay) it was confirmed. He has also had genetic tests for  Velofacialcardio symdrome, Downs, Prader Willie Symdrome all negative, had CAT scans, MRI, blood work etc. I have spend the last 4 years ruling out what is not occuring in his brain.  Hope this helps. Laura

Juliet - posted on 01/18/2009

My son was born with hypotonia, and had some problems with constipation during his first year of life. I started taking him to the pediatric neurologist and she kept tabs on him, suggesting this test and that. They took blood, tested the urine (oh that was a fun experience getting that from a non-potty trained child.) and so forth. Nothing. So we decided to do a muscle biopsy as a last resort, to find out what was really going on. He was found to have mitochondrial myopathy, which in his case is a primary co-Q 10 deficiency. Thankfully his type is the kind that can be treated with supplementation. Take care, hope this helps you. --Juliet

Betsy - posted on 01/18/2009

Hi Jessica,

My son is 28 years old now and he is developmentally delayed. He was 20 months before he walked. I potty trained him when he was 3 1/2 and he talked when he was 5. I was told to institutionalize him but I fought with everyone and he was educated. He does well now. He did have speech therapy all through school. He is involved with special olympics still. My suggestion is to build on what successes you have. No matter what they are. Success leads to more success. Hang in there.

Teresa - posted on 01/18/2009

i have a 6 yrs old daughter that have same thing what ur child have and she did not start walking til she was 2 yrs old and she also have OT, Speech therapist and physical therapist and she also wear braces on her feet and she start wear braces when she was a baby and she is trying to talk and use sign language too and she understand what ppl was saying but it was hard try to figure it out what she is trying to tell me so that is all thks

Jessica - posted on 01/18/2009

Hi Jennifer, no he has not benn tested for that yet. I have just spent the afternoon looking up all kinds of disorders online and I can't seem to find anything that fits my son. He does have some autistic symptoms, but I'm not too sure that's what it is. I'm hoping when I take him to the neurologist next month, I can get some kind of answer. He is due to start kindergarten in September and I'm scared for him. I know that he is nowhere near ready for that. He is not potty trained, he can't talk yet, he can't get dressed by himself, he can't feed himself without assistance...there is more and I just want to know what it is.

Jennifer - posted on 01/18/2009

HAS HE BEEN TESTED FOR LEUKODYSTROPHY?

Jessica - posted on 01/18/2009

Hi Laura. Your information is very helpful. I would like to ask you, how was your son diagnosed with NLD? My son will be seeing a neurologist in a few weeks, so I'm hoping the doctor will shed some light on his disability. Thank you so much for your input.

Laura - posted on 01/14/2009

Hi Jessica,  Has he been tested for NLD - Non verbal Learning Disorder,  It is on the other end of the spectrum that autism is on.  NLD children have some similarities with Autism, Aspergers and can tie in with ADHD, OCD etc.  NLD is when the right half of the brain doesn't communitcate well with the left. Speech is effected, balance fine motor skills, these children are visual learners and have great difficulty with non verbal learning, navigating spaces( they are the bulls in the china shop)What they learn one day they may not be able to repeat the next day.  Many children with NLD are often called lazy in school because of learning difficulties and remembring. Routine is very critical for them and changing their schedule can cause great turmoil. My 8 yr old son is globally develomentally delayed with NLD, OCD & ADHD.  He walked when he was 2 talked when he was 4.5, has had OT, PT, teeth were late almost potty trained and anxieties to name a few. He has vision difficulties and are awaiting his second surgery.  He has an educational assistant at school with an IPP and stays with his class, grade 2 as much as possible, reading, writing & math are difficult but he is having many great strides.  Very bright in many areas and a winning personality.  I hope this helps.

Catherine - posted on 11/14/2008

hi my name is cat and i av a 4 year old with celebral palsy. he does not walk yet and is quite heavy to carry around. but he can bum shuffle and has just started coping words and 2 to 3 word sentences. but for the longest time he has been able to hum every nursery rhyme from listening to c.ds and musical toys.he would sit pressing a button over and over again until he had learnt a new tune. he can even take turns singing a line then i would sing abit then he would carry on. im sure this helped him to start talking as he kind of hummed words before but now its more like talking. maybe this could work for you.

Arleena - posted on 11/13/2008

Hi Jessica, my name is Arleena. My son Jayden is 4, he was born 3 and half months early. So I truly can relate to your frustration with developmental delays. My son has always trailed behind his peers. He started walking at 18months and said his first word 'ma ma' at 2 and half years. Thank God my son has overcome many set backs and challenges relating to his health, however he does have a severe communication delay. He was assessed recently and the outcome found him to have a speech and language age of a 18months - 2 year old. Jayden finds it difficult to pronounce certain letters so he will substitute it with another letter or miss it out all together, this completely alters his speech. My son is now in primary school and gets special needs help. He is very enthusiastic about learning and participating in all school activities. His school peers and teachers sometimes struggle to understand him but Jayden uses makaton signs, other actions while he repeats himself. My main worry for Jayden is that the older he gets he will realise his delay and it may alter his loving, caring and easy going personality.

Tonya - posted on 11/13/2008

Hi, my name is Tonya and my son will be 4 on Valentine's Day. Since he was about 5 months old he started having seizures. After 2 MRIs, 3 EEGs, & an inhospital EEG. Still no answers. He has a Pediatric Neurologist and he has seen a Geneticist. Nobody seems to know why he is having these seizures. He is on two medications and they are somewhat under control at this time. He has been walking for about a year but his balance is not good. He attends a special education school now where he receives PT,OT,Speech and whatever else they can give him. He has just started babbleing but now words yet. He loves playing with others and for the most part is a happy boy. He does have some strange repetitive behaviors though. I hate when people ask you what is wrong with your son & you have no answers. They look at you like you are an awful parent because you don't have answers. Trust me I would love to know. It makes me feel a little bit better to know that their are others out there dealing with similar issues. Thanks!

Debbie - posted on 11/12/2008

Hi Jessica, My daughter Melissa is 27 yrs old diagnosed with cp and developmental delays'She walks but is non verbal..We learned to sign,use gestures and a Macaw talker. I can tell you it has not been easy but we have received sooo many blessings throughout her life..She did develop a few words such as mama, yeah, bye bye papa and a couple more..Never give up trying for the verbal but use every tool for communicating that you can ..May God bless you and your family!!! Debbie