Son went undiagnosed for too long

Amanda - posted on 05/20/2009 ( 18 moms have responded )

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I have a 5-yr-old son with dyspraxia. When he was 1 he didn't say anything but babble. When he was 2 he still wasn't talking much. By 2-1/2 he said 2 words but left off the first syllable. He started taking food out of his diet around the age of 1 but wouldn't replace it with anything else. He was losing weight. When all of these concerns were repeatedly brought up to his dr. we were told he's a picking eater, he'll eat when he's hungry and he'll talk when he's ready. Finally we got a social worker to listen to us. They set him up with early intervention right before his 3rd b-day. He had the language skills of an 8-12 month old. Speech was started right away but with major setbacks. Shortly after he started speech he got a bad ear infection which led to many more. He finally had tubes placed in both ears after this went on for more than 6 months.



The eating has been slower coming. Funding keeps getting dropped for the nutritionists who deal specifically with his problems. His is stretched so thin and has so many kids to see that my son is lucky if he sees her once a year. He's still eating baby food which is becoming very frustrating as his stomach and body require much more food.



As he's supposed to enter kindergarten in the fall I've opted to keep him home. Kids make fun of him or don't want to be his friend because they can't understand him. He's still pooping his pants because he's so delayed with potty training (which is common with dypraxia.) And too much noise or stimulation gives him sensory overload. Some days can be very challenging for all of us. I see kids his age doing what kids his age are supposed to do developmentally and mine isn't doing it. I try not to compare him but sometimes it's just human nature. Tell me your story, I'd love to hear it.

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Sheena - posted on 06/22/2009

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Hi Ladies

Gosh, my story seems so simple compared to the issues you've all been through.

Son, now 14 was only diagnosed in the last year or so as mildly dyspraxic, although I have been arguing for 7 years that something is not right, and not able to get anybody to listen to me, as he also appears to be of gifted intelligence which hid many of his symptoms for years - he created his own coping skills at school and was top of the class all through primary.

Our problems are really only just starting as he is now suffering huge social issues, depression, melancholy (to the point of very mild self-harm), total lack of confidence or self-worth.

He now has a counsellor he sees each week which appears to be helping, but we have this strange angry alien living in our home who at times reverts to our little angel. He doesn't want to talk to us as he can't verbalise his problems and we can't help him - it's terrible.

It breaks my heart as all I want to do is cuddle him and make everything OK which obviously I can't do

Despite all that, you have got to see him act on the stage to believe how truly awesome he is ... Keep smiling ladies, it will all come good in the end ... it just might take a long time to get there !!

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Amanda - posted on 02/14/2014

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Do you live in the U.S.? The difference between my boys and the ASD was that they were social. They would look at people and make eye contact. And yes, they can be diagnosed before age 5. I would find another pedi neuro, they obviously don't know much about dyspraxia. I would highly suggest you check out this page, dyspraxiausa.org. They also have a facebook page which has been growing by leaps and bounds this year. The founder of the organization has dyspraxia himself. You'll be able to get help with both the medical aspect as well as any schooling issues if you do send her to school.

Julie - posted on 02/14/2014

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Wow! Very similar to my daughter. Abigail is 4 1/2yrs old. she currently has a diagnosis of intellectually disabled..which is incorrect. She has no speech at all but understands everything. She currently only eats PB&J, spaghettios, yogurt, Cheetos and cereal. She is not potty trained but understands the concept of it. She is supposed to go into kindergarten this year as she missed the cut off date by one day.....frustrating because with zero speech she is not ready. I may keep her at home as well. She does not assess risk at all. I have questioned the doctors about Dyspraxia and have only been told that it cannot be diagnosed until a later age...which I know is untrue so my battle continues. She is currently undergoing assessment for ASD. I can hear her try very hard to talk but its just fluctuating noises that come out. She has been hospitalized for Severe hydration 2x now because I cant reason with her to drink when she is sick..she only drinks apple juice in a box to begin with. I often compare with other children as well, don't feel bad about doing it. I like to know what she is supposed to be doing so that I have better ammunition for the doctors..lol

Nicky - posted on 07/06/2009

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well done for sticking it out . if you think she needs to move trust your instinct. you have been right before . the others have not always helped .tell them she will become bored and that will make it worse as she will looseout at a time she can be pushed little by little.

Tracie - posted on 07/06/2009

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Hi

My daughter was diagnosed this past fall. I am so blessed to have a pediatrician who listens to me. I knew something was wrong, but there was always something else to blame it on. She has severe allergies. Was hospitalized when she was 6 weeks old and has since had asthma. First set of tubes at 9 months, by a quack! Don't want to offend anyone, but we have since learned that the wrong tubes were put in. Ear infections were worse, but kept seeing ENT. Did not even start trying to walk till 14 months. Could say 10 words by the time she was 2. I pushed on my own to start speech therapy! Wasn't making hardly any progress. Went back and complained to pediatrician of all her delays and knew something was wrong. He knew her ears were bad and sent me back to ENT to see what he wanted to do about it. Went to ENT and he said she was fine and would catch up in her own time. That same night her ear was bleeding due to her ear infection causing her ear to rupture. Called pediatrician and was immeasurably upset. Sent me to new ENT and this one said tubes too small, plugged, and sent her for hearing test. She had no hearing in right ear and very little in left ear. Performed surgery asap and she recovered hearing as of 37 months! Speech progress started showing. But there were still things that were not right. Pediatrician sent me to a doctor almost 3 hours away (closest one). The dr tested her and new right off she had dyspraxia. I can't say I was relieved, but comforted to know I can get info to try and help her. Her quick response was what triggered me. We lived in the country in Texas, where rattlesnakes are prevalant. I was training her to be quick responding in case of snake in yard. There was never a quick response and never will be. She struggles with following directions, social interaction, and unfamiliarity. The school wants her to repeat 4 yr preschool. We (Dad, Mom, Speech Therapist, Occupational therapist, and pediatrician) are pushing for kindergarten. She has been with these same kids for 2 years already. She knows her work (alphabet, counting, penmanship is good, rhyming). Following directions is improving. What do you ladies think I should do?

Nicky - posted on 06/23/2009

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well done for getting the diagnosis .. lol can you get mine done too ... i wish..

my sones pain seem to be getting worse but dr not taking any flipping noticew . even though a recent blood test shows underactive thyroide aswell as mucle waistage estramly bad which proves the pains aparently . but guess what nothing still given to support him.

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hi Sheena , my son is 13 and has just been diagnosed this week with dyspraxia . I also have a 5yo with it but more severe. My 13yo is at a selective high school and was dux at primary school so like your son is bright but learnt how to hide it well . Till March this year when he got into serious trouble at school for the 1st time ever. He suffers socially and has mild depression and is also seeing councelling which has done him good . Its hard to know what to do sometimes isnt it . Im with you all we can do is be there for them and show them we understand and love them .

Nicky - posted on 06/07/2009

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so im told it can be hereditory. in last couple of years ive found more out. my eldest son is almost 16 and younger one is 12. looking back and looking at stuff on net it seems likely that we all share it but.... eldest is now the pian in backside sisde of it , younger one is the quiete wont tell anyone any thing. i will also say weve all had a tough 8 years so that doesnt help.

a friends family have found out that twins and elder sister have it and they grew up near me . only got diagnosed when one twin went to uni.

yes i think the more friends we can all get the beter understanding we can have and share.

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thanks for the advice Nicky i hadnt thought of that .We are in the process of having my 13yo tested as well is this hereditory ??? If youd be interested in becoming friends let me know i could certainly do with some that understand

Nicky - posted on 06/07/2009

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hi sharlene. your son seems very like my son when he was little. big hug to you.

i know what you meen about sitters. as a singlemum it was hard for me aswell as my youngest could only go with people that knew him realy well and my older son had to talk for him to others due to the speech problems. im here for you too. you are lucky to have the physical dyspraxia diagnosed so younge as know one told me about that and im still fighting for that to be recognised. one word of advice is get him chewing as much as possible even chewy sweets as since my sons speach therapy ended ive notice that more and more he avoides chewy foods. people forget asa soon as kids do get talking the mouth muscles still need exercicse to keep them strong or its back to square one.

Amanda - posted on 06/06/2009

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Hey Sharlene, thanks for joining. I too understand that lonely feeling. Having two children with severe speech delays and a child with diabetes we don't often get to enjoy time with others. Our life is a constant whirlwind of drs appointments and speech therapy. My husband and I don't even know what a night out is together anymore because we can't find anyone, even in our own families, who feel comfortable enough taking on the task of our childrens' needs even for a couple of hours. I have been very fortunate to have gotten involved in a Mom's group at my local church which has allowed me to make some very close friendships as well a good support group, although I have had some issues with the daycare there as they have not allowed my two-yr-old to continue playing until he's said he was sorry for something that he did wrong. Kind of hard to say your sorry when you can't speak. As for your dr situation keep perservering and asking around. Tell anyone you can about your situation and it just might lead to some answers.

Amanda - posted on 05/29/2009

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I was able to get him diagnosed last year when I told his pediatrician that I was concerned he may be on the autism spectrum w/ mild autism. She gave me some #'s to call. There was a four month wait to get him in and that was a good waiting time. Usually it's six months. Only 2 places in our whole state even did those evaluations. I was told to choose the one that could get me in the soonest. If your dr won't help you you may want to switch drs and you may want to find out who evaluates children in your area for autism. They would be able to give the diagnosis of dyspraxia.

Nicky - posted on 05/27/2009

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will give a brefe outline. 12 year old son dyagnosed speach dyspraxic at 3. im still fighting for him to be fully diagnosed haas all the early symptoms and its getting worse. this month they diagnosed underactive thyroide , but wont look at dyspraxia still. in my area there all concentrating on unders fives so its a real struggle . finaly though the bloods have hve shown sever muscle waistage. which they all said i was making up until now. i only managed to get that test done as i pulled him out of school that wasnt believing he was ill and they caused alot of problems because i choose to start home ed so i could see what was going on.

Amanda - posted on 05/22/2009

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I know that helplessness, Sheryl. My oldest son has type-1 diabetes and he feels different when he can't participate in a classmate's birthday party at school or he has to go to the nurse before and after meals as well as have a nurse tag along on every field trip. It is very hard for kids that have special needs in school. That has a lot to do with my decision to home school. That decision doesn't come easily either. Many feel that I'm doing my son an injustice by not letting him spend all day socializing with peers. A few times a week with his friends isn't enough many people think. But will he do any better socially if he's stressed out by trying to fit in all day or being made fun of for how he talks?

Amanda - posted on 05/22/2009

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My son also suffered from reflux when he was a baby. I thought it was because I'd changed his formula, because it happened all of a sudden. He finally had to be put on reflux medication until he was one. It wasn't until I found out that he had dyspraxia that I learned that may have been the cause. He also had difficulty sleeping when he was a baby, only sleeping for about 45 min. at a time. I thought that he was just a fussy baby. There were signs there from the moment he was little that we thought we're just a part of his personality.

Sheryl - posted on 05/22/2009

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My daughter, Madelyn, was diagnosed with dyspraxia when she was 2 1/2. She was a late crawler-10 mos and late walker - 1 1/2. When she was 3 yrs. old she was only saying a handful of words and a couple of 2 word sentences. She also didn't get potty trained till she was 4. She also didn't like crowds or loud noises. If we were in a room full of people, she couldn't figure out how to walk around people to get from one side of the room to the other-it totally stressed her! She was in a program 3 mornings a wk.for speech, occupational and physical therapy. She started Kindergarten when she was 5 but we had her repeat it the next year. Best decision letting her do it twice. She had tested out of occupational and physical therapy at this point but had speech therapy 3 times a wk. during school. By 1st grade her speech was great.
She just turned 11 and finished the 4th grade. She still has speech 3 times a week but they work on social situations and processing info. She has one on one help in math and reading but she is on her grade level with every subject. She can read anything you put in front of her but her biggest problem is processing information. It's very hard for her to read something then answer questions about it or apply the info, which affects every subject in school. She has all her tests read aloud to her and they limit her choices on matching tests to 2 or 3 . I have to work every night with her on schoolwork because it takes her longer to learn things but she is doing great. She just got her report card and made one "B" and the rest are "A"s.
At this age though, she is aware that she is different from other kids in school and doesn't like that she has to leave a class to go to another room to take a test or have a different math class. She asks often how long she will have to do this. This year has been the hardest for her socially and I don't know what I can do to help her. I feel really helpless.

User - posted on 05/22/2009

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hi amanda gosh my daughter was very simular to your son, she started life a very healthy happy baby then when i t was time to move on to solidsshe was great until she moved onto the lumpy solids she would choke on the lumps and be sick she continued to eat 3mths smooth baby food right up till she was almost 3, i couldnt get her to eat anything, she was very late coming out of nappies about 3 1/2 , she had problems with the joints and muscles in her feet causing them to role to the sides , i went to the drs numerous times and was told she was just a fussy eater and would grow out of it , but she didnt,

she started school and still wasnt eating from the age of 3 all she eats is marmite sandwich and cheese and a packet of chrisps thats basically all she has in the day time , in themean time like your son she started suffering ear infections and this lead to reduced hearing so she had to have grommets fitted which helped her hearing for a while but not anymore although it did stop the ear infections,

she was refered to a specialised unit in london but no help they blamed her gagging and choking on food on reflux as a baby,

it was only 6 mths ago that i asked her school teacher for help because her behaviour was getting worse and after i explained everything the teacher was sure she had dyspraxia, they arranged a test at the school and concluded she was , she now does something called gym trial where they do excersises to help her motor skills its mainly her large skills that are affected she cannot swim , ride a bike run very well balance ect my daughter will be 9 at the end of the year,

unlike your son my daughter talked quite early and she now talks non stop lol

User - posted on 05/22/2009

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hi amanda gosh my daughter was very simular to your son, she started life a very healthy happy baby then when i t was time to move on to solidsshe was great until she moved onto the lumpy solids she would choke on the lumps and be sick she continued to eat 3mths smooth baby food right up till she was almost 3, i couldnt get her to eat anything, she was very late coming out of nappies about 3 1/2 , she had problems with the joints and muscles in her feet causing them to role to the sides , i went to the drs numerous times and was told she was just a fussy eater and would grow out of it , but she didnt,

she started school and still wasnt eating from the age of 3 all she eats is marmite sandwich and cheese and a packet of chrisps thats basically all she has in the day time , in themean time like your son she started suffering ear infections and this lead to reduced hearing so she had to have grommets fitted which helped her hearing for a while but not anymore although it did stop the ear infections,

she was refered to a specialised unit in london but no help they blamed her gagging and choking on food on reflux as a baby,

it was only 6 mths ago that i asked her school teacher for help because her behaviour was getting worse and after i explained everything the teacher was sure she had dyspraxia, they arranged a test at the school and concluded she was , she now does something called gym trial where they do excersises to help her motor skills its mainly her large skills that are affected she cannot swim , ride a bike run very well balance ect my daughter will be 9 at the end of the year,

unlike your son my daughter talked quite early and she now talks non stop lol

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