What is wrong with my daughter?

Krystina - posted on 11/22/2010

if she goes to school have the school psycologist do the ADOS test on her...That can get you some information sooner than Jan. The ADOS is the testing they do for autism and the schools can do it. My son is 3 and in headstart and they are going to be doing that test on him because he is also showing the same signs as your daughter. talk to her OT and see where there the autism screening is done if the school wont do it or she isnt in school yet

Michelle - posted on 11/17/2010

I live in Las Vegas and though Las Vegas is known for many things having great doctors (specialists in particular) is not one of them. There is only ONE developmental pediatrician in Las Vegas and I have not seen very many nice things about her on the internet under patience reviews. We do have a good (from what I heard) pediatric neurologist who has a specialization in Autism. Margaret has an appointment with him in January. I need to find out if Margaret has only Autism or ADHD or maybe both. I am hoping the Neurologist will be able to run tests and tell me.

Cathy - posted on 11/17/2010

Hello,Reading this reminds me of a lot of the symptoms my son had when he was little,and some he still has.She has many symptoms of Autism,the talking you write about is called echolalia,where she repeats what she hears,tv shows,commercials,songs,things you say.There is also what they call delayed echolalia,where the child repeats something they heard at some point then repeats it later. The walking on toes is also a sign,so is not sleeping well.My son is 12,almost 13,and was diagnosed when he was 3,so I've been at this for quite sometime. I'm a nurse and I know that sometimes premies can be Autistic,I've seen that over the yrs too.If I were you,I'd find a good neurologist or Developmental Pediatrician.I live near Baltimore,MD, and the Kennedy Krieger Institute is amazing.It's part of John's Hopkins and they specialize in Autism and other brain disorders.If it is Autism,she needs therapy and services early and often.The sooner you help her the better.You have a window with the Autistic brain and they need intense therapy.My son had ABA therapy and it did wonders for his speach,plus he's on a special diet,gluten/casien free.It helps him and a lot of other children with Autism,but it doesn't work for all of them.You have to do some investigating of her symptoms.I read a few great books,one is Unlocking Autims,I reccommend it. If you have any other questions please post them and we can help.

Michelle - posted on 11/16/2010

I am trying to get a diagnosis so Margaret can keep her SSI and that in turn qualifies her for Medicaid. Margaret just recently had a disability review. I was worried SS would not find her still disabled. Even though Margaret has several problems including her height and weight (50% and 5% respectively) that was not enough for her to keep her disability. The Speech Therapist through Early Intervention did a speech eval on her but the ST apparently was not credentialed enough so SS made me take her to their ST. I was glad I did. The ST from SSI wrote in her evaluation that Margaret was observed to have no functional speech (receptive or expressive). She also noted that Margaret would just pick up toys and did not know how to play with them. She just held them in her hand and ran around the room with them. Keep in mind this is the same child EI decided 60m of ST once a quarter was enough. I want to know why Margaret is having such a hard time communicating. There is no obvious reason why she should be delayed. Even though she was born early she should not have this much of a speech delay.

As for brain bleeds. I was VERY fortunate that all of the babies that survived had no recorded brain bleeds.

Valerie - posted on 11/15/2010

Did she have any intracranial hemorhage due to her prematurity? I have a 6 year old who was born at 25 wks. She had a grade III bleed on one side and a grade IV on the other. Your daughter's behaviors fit my daughter to a T. She has an incredible vocabulary (all stuff she has heard) and rarely forgets what she has heard. With her history of prematurity, it is often difficult to get a physician to commit to a diagnosis of autism or any of the spectrum disorders. They are currently doing research that shows premature babies are exhibiting many of the same behaviors; however, they do not seem willing to give that diagnosis when there is another reason for the delay. My daughter recently had surgery to allow her to walk with her heels touching the ground. A SIGNIFICANT improvement in her gait. She received botox injections prior to that with minimal results. Despite the lack of a definite diagnosis, I have chosen to treat her as if she were autistic and have ensured that her IEP at school reflects interventions that would be used with an autistic child. As a result, she is thriving. Her sensory issues are being addressed and are improving. She is even beginning to answer simple questions appropriately. Sometimes, you just have to look at the behaviors and choose to treat them rather than a diagnosis. You may never get a definite diagnosis but, there are many therapists out there with a lot of experience who can lead you in the right direction. Good Luck.

Michelle - posted on 11/13/2010

Margaret can see because she will sit and watch TV and I can ask her to identify things and she can. I do think she has either Autism or ADHD. Hopefully I will get some answers soon.

Krystal - posted on 11/12/2010

My oldest daughter would never watch TV but would always repeat the things she heard on TV. She also fell down alot and walked into the walls. It turned out that she was legally blind. She also has problems remembering things from one day to the next for example one day she would know her colors and the next she wouldnt and then they would start coming back to her again after a few days. They also think she might have ADD and OCD. My youngest daughter will do the whole yelling think for hours, just yelling songs and things she learned at school. Its hard to get her attention and keep her focused on one thing. She has been diagnosed with ADHD but I wont let them put her on meds because shes too young. One of those or a mixture of them could be your problem.

Lanna - posted on 11/12/2010

How old is she now? Sounds a little like adhd, something my son has and takes a while to diagnos. I knew myson had it at a early age of 2, if not younger, He is 9 now and has to be on medication to sleep or he still wouldnt be sleeping through the night,,, Good luck to you.

Heidi - posted on 11/12/2010

You can get melatonin tablets at Wal-mart

Michelle - posted on 11/11/2010

I will have to look into the Melatonin! Is that a powder you get from a drugstore or vitamin shop?

Margaret has not had genetic testing done but that might be something the neurologist will decide to do.

I don't think Margaret has MD but I will make sure that is ruled out.

Margaret has been getting for the last 6 months PT, OT, and she is just now getting speech. The Speech Therapist though is NOT very good at all.

Heidi - posted on 11/11/2010

My son has Down's Syndrome and a friend of mine has a son who has Autism. Actually, many of the symptoms cross into another disorder's spectrum. Because all of these developmental disorders, disturb the brain's path of processing, children will often have symptoms of other disorders without actually having the disorder itself. I recommend doing a thorough medical physical where medical tests can quickly rule out inner ear or eyesight problems, and then going from there. Pediatric specialists will also have other child specialists you contact if they suspect it is autism or another developmental disorder.

Dana - posted on 11/11/2010

I would like to tell you there is an easy answer. Instead, what I can tell you from my experience, she reminds me very much of my oldest child. Dylan spoke early, walked early, then just stopped progressing. He also did not sleep, look at us, was very good at parroting tv, but not using his own imagination for play. When we took him through early intervention, they diagnosed him on the autistic spectrum and begun intervention. I hated the term, but what I loved was the help he received. I got to realize it didn't matter if they were right or not, what they were doing was helping. Today, he is 12 and very few people would ever guess he has anything about him that is different. I would ask for a behavioral pediatrician to see her and evaluate her for learning delays. It is a place to start. We used ABA and the TEACH method isn't important, the early intervention is. Good luck.

Dena - posted on 11/11/2010

My oldest chld has severe ADHD and his doc suggested Melatonin as well. He does so much better with it. He's on 3 mg, 70 lbs.

Dena - posted on 11/11/2010

Michelle, I think you need to observe and take notes of her reactions, maybe video it if possible. What type of therapists does she have, SLT, PT, OT? If you have a Chldren's hospital in your area, you may call and set up appointments with different doctors to see if there is a issue and get a baseline and find out how quickly she is meeting milestones. I am getting my masters in special education and something definitely seems to be off. She may be developmentally delayed or she may have sensory issues. My youngest son was 3 and half when he came to live with me and could only say cocaine. His birth family caused a lot of damage. I worked very hard to help him, but many people said to give him time, he'll catch up. I finally got people to listen, but it took years of effort. He has a short term memory in the 5th percentile and has ADHD and a severe sensory developmental issue. He is on a 1st grade level (which we worked HARD for) and is almost 9. I kept him in special needs preschool instead of Kindergarten, so he is a year behind his peers his age. If I had gotten the help I needed sooner, I think he would have been fine. I have been told that if he'd been taken from his birth family at birth he would have been an average child. I can only say follow your instincts. No one knows Margaret better than you.

Heather - posted on 11/11/2010

A lot of what you discribed sounds a lot like my son. He is on the Autistic spectrum. My thought would be to have her assessed for Autism. I had the same problem with my son and we have determend that he 1 has a milk allergy, which since I have taken him off of milk he is a lot calmer. He still runs around a lot but not near as much. I also had the same problem with his sleeping. His nutritionist suggested to try Melatonin on him and it has worked wonders. It is a natual sleep aid that relaxes him and allows him to fall asleep in about 30 minutes now. I started him on 1/2 mg and went up from there until I found out how much he needed to go to sleep in a reasonable amount of time. He take 2 mg each night just before bed and is usually asleep in 20 - 30 minutes. These are just a couple of suggestions that you may want to inquire about. They have worked for me. Hope this has helped you some.

Maria - posted on 11/11/2010

Hi It sound like she might have ASD (Autistic Syndrome Disorder) and/or ADHD my son has them and is under assesment at the moment to find out how severe he has them. But he is the same as your daughter practically apart from he was walking by the time he was 5 months and he speaks alot batter but he does have some speach problems, he started to stamer all of a sudden at 2 1/2 - 3. But she could have other problems as well but its a start. Hope this helps.

Christine - posted on 11/11/2010

It sounds like autshusm.My daughter also has many of the same issues your does she is now 12 not a mutipul.She is currently experancing behavreal issues due to Purburity that are just aful.She has just now started on medacation to help her focous and not wind up.Iv noticed the head shaking starts and gets vigrous thein the emoshional stuff starts fallowed by the loud singing /talking getting intothings she knows she not supposed to, fallowed up by extream anger and fit throwing.She has never gone threw this untell resently and the DR say its due to her going threw purburity.But back to your kid.Has she had an MRI? To rule out any brain defects?Kaila has been dignosed with dandy walker (LIKE) syndrome. Meaning she dosent hit all the markers for that dignosis.She didnt walk tell she was 28 months and thein it was wt a walker, didnt talk tell she was 3 ( Cant shut her up now) and is devolmently 7 yr old.She was a preemie and had to do some catching up and that sounds like wt your daughter may be going threw.A combnation of premie, devolmental delay and possably autisum?I would sugest you stary with a MRI and testing for autisum. The sooner you get treatment for autisum the beetter off she will be if infact that is wt is going on.Also their may be ADHD going on and their is medacation to help her calm down and focous more wt out being all druged out.Its missrable for a child who has to go go go all the time and cant sleep. Her body needs rest to grow and catch up. My Daughter was put on benidrel at bead time so she can sleep threw the night.Simple fix that worked well.

Marcia - posted on 11/11/2010

Take her to a Developmental/Behavioral Doctor. Explain your concerns and they will observe her, maybe do some tests. They should be able to give you answers. Be assertive, Sometimes you have to be pushy to get the answers you need. God bless you.

Jody - posted on 11/11/2010

I am not totaaly sure but it sounds like she can possibly have a form of Muscular Dystrophy...there are 40 nuro muscular diseases. I hope you find the right help that is needed for her.

Iridescent - posted on 11/10/2010

All the replies are excellent. While walking on tip-toes can be from hypertonia, spasms, CP, and autism, it needs to be evaluated by an orthopedic doctor initially. The base cause is either physical or neurological, and since you state her hamstrings are tight, and you're already having everything else checked, getting an ortho visit and treatment (AFOs are typical, or muscle relaxers) would help.

Karmin - posted on 11/10/2010

I was thinking aspergers or sensory perception disorder.

Jennifer - posted on 11/10/2010

I completely understand the Medicaid thing. My son has down syndrome and we were at a conference at the Children s Hospital of Philadelphia and I remember one of the discussions we sat in on was doctors talking about the significance of a child who walks on their tippy toes. I know it is not down syndrome but it is 100% a genetic disability and I would call CHOP (the hospital) and have her looked at there. They are in the forefront of hospitals in the US for children with special needs and would be worth your trip there.

Michelle - posted on 11/10/2010

Margaret will have some diagnostic testing done for Autism through Early Intervention on November 29th. They told me that they could not give her an official diagnosis but they could write up their recommendations and I can take it to her pediatrician and HE can make the official diagnosis.Margaret has not been to a doctor in about 8 month because of moving and Medicaid issues. I am sad that the therapists who have been seeing margaret for the last 8 months through EI NEVER once mentioned testing Margaret for Autism.

I will ask about the seizures too. Thanks for the advice.

I have not tried medicine or anything to help Margaret sleep. Last night was a typical example of her behavior though. I put the babies (I have triplets) down to sleep at 8pm. The boys are asleep by 8:30p. I heard Margaret in her room (in the dark because they do not have a night light) until 10:30pm.

Margaret does have tightness in her legs but it is in her hamstrings. It is not a typical place for a child to be tight in their legs apparently. As soon as Margaret was able to stand upright she was standing on her tip-toes and I can't get her to walk flat-footed unless I put shoes on her feet. Her PT is not sure what to make of her wakling on her tip-toes since she can walk flat-footed on occasion and with her shoes on. The PT is working to loosen up her hamstrings but I need to make sure it is not a sensory thing or some other problem and not just physical.

Shannon - posted on 11/10/2010

Have you seen a geneticist?

Jennifer - posted on 11/10/2010

I would have her tested IMMEDIATELY by a different medical professional ( a little strange none of your current doctors or therapists thought about autism - although I imagine the obvious has already been ruled out). The earlier you get her the proper therapies the better!

Sherri - posted on 11/10/2010

Have the neurologist look into seizures also. They can be so slight you would never notice them but they can cause just as much damage to the brain as a grand mal. Also, seizures tend to occur when they are sleeping and noone would ever notice. They have a test they can run to check for seizure activity. I can't remember the name of it right now but the neurologist should be familiar with it. Brain damage caused by seizures could also cause all the symptoms you have mentioned.

Kasey - posted on 11/10/2010

The repeating of things shes heard on tv or labels and avoiding eye contact sounds like autism. For sleep issues have u tried melatonin or any meds? My neice who has autism is now on a med for adhd (which she doesnt have) but is helps her alot. For the walking on tip toes, does she have tightness in her calves? My special needs son does, causing him to point his toes making it hard to get him in his braces, get his shoes on, ect... Right now he is on 20 mls baclofen 3 times a day for tightness. Next week we go to a spastisity clinic to discuss botox shots. To see if it would benefit him. Hope u find some of this info helpful, raising our kids keeps us thinking! Good luck!

Nicole - posted on 11/09/2010

Michelle, It sounds like to me She has A.D.D with the focus problems...Her repeating everything she hears could be also Autism.. But i can tell you for sure because my son does have autism, the not looking at you, walking on her tippie toes and screaming is alll autism,, but what level she would be at, that i cant answer she will have to be tested.

Michelle - posted on 11/09/2010

Thanks for all the replies! Margaret has an appointment with a peditratic neurologist on Jan 7. I will ask about the dyspraxia, CP, Autism, ADHD and Asperger. These were all great ideas! This was the kind of help I was looking for. I am a mom of 5 children and I know her behavior is NOT normal! Waiting for Doctors to tell me anything is useless. It has been me and ONLY me in pushing the medical people to make decisions on what is wrong with my children (Margaret is one child that is having problems and I have one more child whose problems are more severe.), I want Margaret to get the help she needs as soon as possible (what ever that is) so that hopefully one day she can functionally normally in society.

Cheryl - posted on 11/09/2010

well, we wanted to believe that hannah was just slow in maturing, and we actually convinced ourselves this was all it was.........you will know in your heart if you think there is something really wrong. No one in the world ever wants to go down the track of having a child with autism, but after many years of denial and many tears, we just get on with our lives now.

Gina - posted on 11/09/2010

It sound like autism to me....there are very many ranges of it. My niece has it. What comes along with it is ADHD. That explains the no eye contact, the bad balance, the climbing, the no touching and repeating things heard on TV. I am not a doctor buy my niece had all of these same things. Good luck and God Bless.

Sheena - posted on 11/09/2010

If she is under 3 yrs old...see if your county has birth to 3 program, ask your doctor they would know. my son has been working with them for a yr now and they have done some amazing things with him, and they will give you more and more ideas of what to ask your doctor.

Donna - posted on 11/09/2010

There could be multiple reasons that your daughter does these things, and since she is a premie and one of a multiple her risks of having some type of disability are large. I would begin by asking the doctors if they believe you should be concerned. I would also ask about the possibilities of cerebral palsy and/or autism. Good Luck!

Brenda - posted on 11/09/2010

I think all of the replies are very valid...one thing that no one has touched on is her walking on her tippy toes. My son didn't start walking until he was almost 3 and when he did it was always on his tippy toes. He was diagnosed with cerebral palsy 3 months after his 3rd birthday. He is now 10 (will be 11 in a few weeks.) He does show symptoms of autism. This could also be why her balance is so off. My son was the same way. If you need any other advice or just need to vent don't hesitate to get a hold of me on here. Good luck!!!! ((((HUGS))))

Kristiana - posted on 11/09/2010

It sounds like Autisum..or something in the spectrum. You should look into an eval soon. Talk to her pediatrican. You said she has therapists? Mom son is on the spectrum and he had some of these symtoms as a young child. He is now 10 and has come very far with therapy(PT, OT and speech) Good luck

Jess - posted on 11/09/2010

Autism

Charlene - posted on 11/09/2010

My daughter was a premi. She didn't do things until late but that is normal with premi's. Log needed speech, pt and ot. I wouldn't worry about it. Ask them to re eveluate her. It could just be muscal tone is poor also common in premi. I would not go with the Autism. I am a special education teacher and it takes a doc and test to decide that. If your ped hasn't said anything like that than don't worry. My son who was born at 40 weeks walked on his knees till he was 18 months all kids are different.

Cheryl - posted on 11/09/2010

Definitely autism i would say. My daughter always toe walked and before that she slid on her backside and never crawled, no eye contact etc. i would ask your doc for a referral to a psychologist, they are usually amazing people who will diagnose far better than any GP.

Alicia - posted on 11/09/2010

Start out with her going to see a pediatric neurologist. From there they can get her scheduled for all of the test that she needs. Make sure that you tell them everything that is going on with her, if you have to take notes so you don't leave out anything. God Bless you & your daughter.

Kimberly - posted on 11/09/2010

Yes, tests, tests and more tests are definately the answer. My youngest son was diagnosed with Global Developemental Delays, ADHD, and ODD which all run hand in hand. Thank goodness I kept on the doctors.....it wasn't until he was 3 when we finally got a diagnosis. He has been receiving OT, PT (which my son was also falling down a lot) and speech therapy along with seeing a child psychiatrist and psychologist. It is very important to get all sorts of tests done and if you have to ask to see a developmental pediatrician because they seem to take you more seriously about these things than a normal MD. I wish you luck in finding out a diagnosis for your daughter...the sooner the diagnosis the sooner you can get her the help she needs.

Jenn - posted on 11/09/2010

I agree with the thoughts about Autism. It may be time to request a complete Psychological Evaluation to start the process of eliminating autism as an option or to begin receiving services and therapies. The sooner you have a diagnosis and therapies/treatments start the better.

Good luck.

Izzy - posted on 11/09/2010

Its easy to see why therapists can't give you a definitive answer:) So many "symptoms" overlap into so diff. many diagnosis...frustrating I know. My daughter presented kind of all over the place around 3..her in coordination around the time of walking (18 mo) and frequent fall turned out to be Dyspraxia..motor planning issue and her loss of speech around 15 mo was related..called apraxia..oral motor issue.when kids arent aware of their body in space also they can be louder not aware of that either. Ot has helped her with body awareness coupled with speech therapy. Our MRI came back normal, any tests they ran when she was young came back normal. I almost wish we hadnt put her through it but it was hard not to have answers. Sometimes you end up with an "umbrella" term diagnosis just to get services started for your child. Originally my daughter had a clinical diagnosis of CP just for services..(clinical only because there was no evidence on MRI)then later she ran into her ot appt in high heels! The diagnosis was changed to better describe what she actually had after she recieved great therapy to help us get her to a point where they could see. Sometimes as they mature things will change and paint a clearer picture. Hang in there..wishing you peace of mind..it's what we all want.

Laura - posted on 11/09/2010

Have you had her checked for Asperger's syndrome ??? If you have those Asperger tendencies it can come with a hole host of associated conditions. I would check into that if autism is ruled out. No matter what, It can add to all the wonderful things that are right about her...

Michelle - posted on 11/09/2010

my daughter has dyspraxia, she still has some slight problems making eye contact, is clumsy etc. It is worth asking to be referred to a good paediatrician who will be able to conduct various tests etc to give you a true diagnosis. I wish you all luck in getting the help you need.

Florida - posted on 11/04/2010

How old is your girl ? I feel that depending on her age, the running around and singing might be normal, as I have a 3 year old that likes to do that. It feels like she has a little motor in there. My son had and still has some speech issues, due to a stroke when he was a baby. I've tried to read p a lot on various subjects to figure out what caused the stroke and how to help the brain compensate, and I'm reading about autism spectrum, because as I've learned recently, there is a link between hemiperesis and autism.

In a way, I was fortunate to even find out that my boy had a stroke, as he had seizures for a little 12 hours after birth. I read somewhere (in one of the studies on neonatal strokes) that some babies that are born early, if they have strokes, it is more difficult to notice. So maybe that's a thought.

I'd read up on sensory disorders- just in case, because of her balance.

PS my son, when he was first learning to talk (a little later than average), was very good at remembering melodies- and the words to them, but it was clear that he was listening for the sounds of those words and that the meaning escaped him- and he learned whole sentences from the tv, repeated commercials etc, and then tried to put them in appropriate places in conversation, or sometimes just blurted them out seemingly at random. He's almost 5 and now he's starting to be able to express his own thoughts with full sentences, and he pays attention more too. I feel he just reached his milestones in language a little later than most- he still has a ways to go, as some concepts still escape him (like the "why"). I feel he had to really work hard at rewiring his brain to achieve the same results (eventually, I think) as other children without a brain injury.

So brain injury, strokes, autism spectrum, sensory disorders... Also, did you have a chance to get her ears looked at ? You never know, maybe fluid would impair her balance and affect her hearing, in turn affecting her speech ? I'm asking since she sings loudly and runs around, and falls when she walks, and because I went through all that as a process of elimination for my child.

Good luck,

Florida.

PS: Oh and a CAT scan/ MRI is a great idea: that's how they figured out my JB had a stroke, and they could also see what areas where affected and take guesses (that's really all they can do- and they will give you the worse case scenarios so you are prepared, when they make their guesses, but mine turned out super, an anomaly, really for that kind of injury, and I feel he may even catch up with the other children eventually, or not be too far behind anyways). Best courage.

Michelle - posted on 11/04/2010

Thank you for the comments. Margaret is scheduled for an appointment with a neurologist. I will ask him about the MRI or CAT scan when I go.

Amy - posted on 11/04/2010

My first thought was Autism spectrum. However, I also have a daughter that was born prematurely, weighing 1 pound 5 ounces. She is on the spectrum AND has CVI. Not all opthamologist will acknoledge that CVI is real. Make sure you get one that understands the problem and will direct you appropriately. Did your daughter have an Intravetricular hemmorage? This is a common cause for CVI, and for walking on her toes. How is her muscle tone? Any othe signs of cerebral palsy? I would also ask for an MRI or Cat scan of her brain to look for periventricular leukomalasia. That can cause all sorts of problems.

Anita - posted on 11/03/2010

HAve you worked with an occupational therapist? Many children who are on the autism spectrum as your daughter seems to be, receive alot of help and insight from an OT. ALso the eyes, They gave my daughter glasses with prisms in them to help with her perception of where she was in space. She doesn't fall and run into things so much any more. It sounds as if you probably have more than one issue

Michelle - posted on 11/03/2010

Thanks for the information. These are things I want to investigate. I have had concerns that Margaret may be somewhere on the ASD.

The CVI was interesting. I had to look it up. Margaret does have some eye issues from being born prematurely (ROP). I do not think she has CVI but maybe something relates. I will have her evaluated though. Thanks! These have been helpful and maybe I can get some more feedback.

Leslie - posted on 11/03/2010

I agree with both suggestions that have been given thus far... I think having a reputible ear nose and throat doctor check her ears to make sure their isn't an inner ear issue where the balance is concerned. I also very much question as to wether she might be on the autism spectrum. My daughter has been diagnosed with aspergers which is a form of autism. Many of the issues you described we also have. if you have specific questions you can email me. I would love to help in any way.