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severe developmental delay with no diagnosis!

Celane - posted on 04/30/2009 ( 20 moms have responded )

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Talk about frustrating! The only diagnosis I have been able to get thus far is "severe developmental delay". My son is almost 5 and just started walking in September. He doesn't talk at all. Babbles and hollers like a 9-12 month old. He is attending a special needs school. I live in Iowa and am considering taking him out of state for evaluation. Anyone point me to an exceptional childrens hospital? He's been to both Mayo and Iowa City. Also any info on any programs that might be available for financial or other assistance. I have been unable to work full time due to his illnesses and issues. Financial situation is becoming dire!

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Rachel - posted on 03/19/2011

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Hi,my name is Rachel.I feel your pain.I have 5 year old little boy,he will be 6 on the 7th of April.He has a seizure disorder,severe global developmental delays,cerebral paly,{and i only have that diagnosis because low muscle tone.}He is not able to be potty trained,he is non mobile,non verbal,he is tube fed,he has chronic lung disease,.Those are the only things that we have been told is wrong with him.We have not recieved an actual diagnosis.When i am asked what his diagnosis is i have to say,seizure disorder,severe global developmental delays,cerebral palsy.I know how frustrateing it is not be told your child has something,but not get a diagnosis.My son began having seizures 24 hours after he was born,he was sent to Arkansas childrens hospital and was kept their in th NICU for the first 2 months of his life,being put on Phenobarbital for seizures,they tried to tell us that it wasnt seizures,it was reflux,cause they had ENT come in and scope him and they said he had refulx.After being there for 2 months they discharged us after him still haveing mutiple seizures a day,even having one 30 mintues before they discharged us,they still insisted that it was reflux,being new parents,we were like ok,and went home.Figured they were the doctors and knew what they were talking about.Got home and he immidiately began having seizure after seizure.I kept track of how many seizures he had night we were home from the hospital.....within the first 24 to 48 hours i had counted at 200 seizures in a 24 to 48 hour period.....he was having them back to back,he would have a seizure and start to come out of it and he would end up starting to have another one.It was very hard to see your newborn having a seizure and knowing theres nothing that you could do for him.It was months before the docs were able to get his seizures under control.He ended up back in the hospital at about the age of 3 or 4 months old due to him having a seizure at home and him turning blue on me and the face and mouth.Got him to chidlrens hospitla,nurses and staff were in the room during there admitting process and the docs came in and he went into a seizure,even though that what we were told,we didnt believe that what he was having,we had seen someone have a seizure before and what our son was doing was nothing what we have seen before.Well he had one while the docs were in the hospital room and they confirmed it...he was having seizures.To make this long story short,he was diagnosed with a seizure disorder.then at the age of 6 months old he was diagnosed as having severe global developmental delays.then just recently we go a diagnosis of cerebal palsy,but only got that because of his developmental delays and low muscle tone.He is non moble,non verbal,not potty trained,tube fed,low muscle tone,chronic lung disease.He had some minor feeding issues.After the second hospitalization and getting confirmation that he had a seizure disorder,i bet you we were back and forth being admitted into childrens hospital probably every month,once to twice a month for at least 2 weeks at a time.That went on for the first 2 years of his life,then the docs were able to get his seizures under control.In december of 2005 he was admitted back in to childrens hospital for his seizures acting up again.He at this time was feeding normally,takeing a bottle.He ended up having a 30 minutes seizure.....they gave him ativan which is used for alztimers and dementia patients.they had to give him to shot of ativan to bring him out of the seizure and it still didnt work.So after him having that 30 minute seizure and being knocked out cold due to the ativan shots to stop the seizure...thats when he stopped eating by mouth,and he was sent home with a tube in his nose til the surgery was scheduled to put in a Peg tube/Gtube{feeding tube into his stomach.But that wasnt the end of our hell or our sons hell.He has been through alot,but he just keeps on trucking by like nothing has ever happened.He still everyones heart he meets.He is always very happy 99% of the time.He is a very sweet and loving little boy.After all hes been through you would figure he would have just given up.But nope....he just keeps trucking on by like he has no issues or problems.We have never recieved a diagnosis as to what causing his delays.No answers or anything at all and it very frustrating.My son is on medicaid,so i dont know what advice to give you how to help on that part.I've been lucky and medicaid has paid for most of everything he needs.I am at a constant fight and battle trying to get him the services that he needs.He is unable to care for himself,so mommy and daddy have to do it.But im not giving up.Here is the only thing that i can think of that may help.Call your local DHS office and aske to speak with someone with DDS childrens services.they will know more on how to get you more help.I hope this helps.Sorry i typed you a book.but i have been looking for other parents who have children with the same or similiar issues as mine.I hope the info i gave you helps.good luck.if you have any other questions please dont hesistate to ask.

Kim - posted on 05/07/2009

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I will say the same about Boston Children's Hospital....very good team over there.

Jenny - posted on 05/15/2009

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Wow feal your frustrating...went throught the same with our son who is now 6 yrs old (has a gross developmental delay with mild CP & low muscle tone which has lead to a delay in his walking). Doctors seem hesitant to give one a diagnosis for fear of getting a wrong. So difficult to plan ahead and work out a long term plan for your child. Pieced together our son's diagnosis from reading doctors letters etc but found the most useful chatting to his therapists. Realised that all one can do is help them reach their best potential. Also find it useful to chat to other special needs Moms and find out what interventions have worked for their children.

Heather - posted on 05/13/2009

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I also have a 5 yr old severely dev delayed child. We live in Mass- Boston Children's is great! We don't have a diagnosis. He has a small brain, although we don't know why. We did tests, MRI's, genetic tests, the whole gamut. We finally decided to stop looking. We talked long and hard about it and decided that having a diagnosis isn't going to change who our son is, how much we love him or what kind of therapies he is currently receiving. I am not a religious person per se, but I believe that God gave us our son with his different abilities for a reason, and our job is to support our son as best we can. Hang in there.

I also had to cut down to part time hours. We signed up w the Dept of Mental Retardation which got us hooked up w the United Arc. We get $1000/yr from them for equipment and svcs. We also have a program thru Masshealth/medicaid that reimburses us the cost of our primary insurance plan. We have great school systems- we had early intervention until 3yrs old, and then the school system takes over. He's been in pre-school with able-bodied kids ever since. He starts kindergarten in the fall. He's also in a summer program through the school so he doens't loose any skills he's gained.

Emily - posted on 05/01/2009

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hi celane, i know how you feel not having a diagnosis. my daughter freya is 3 1/2 and has global developmental delay along with other problems that are all very general. we live in the uk and freya has undergone tests at great ormond street hospital in london but everything has come back normal other than underdevelopment of the white matter, which they say does not account for the extent of her problems. freya is currently not walking or talking or even standing she is still on mashed baby food as she cannot eat lumps as she chokes. we are desperate for some kind of answers as to what the future may hold for freya but everyone (other than myself and my husband) have given up on finding a diagnosis. i know how frustrating it is not having answers. so im sorry i cant help on advice for hospitals and specialists but i understand how you feel.

xx

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Sherri - posted on 03/19/2011

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I know how you feel it took me 10 years to get a doctor to tell me whats wrong with my son we had test after test an the said he was just slow then we went to a hospital called CHKD in norfolk va. there an only there did a doctor tell me whats wrong my son has fragile X an autism see he cant read or anything he is still in pull ups an cant talk right they put him in a special needs class an now he is getting the help he needs so don't give up ok there is help out there.

Rachel - posted on 03/19/2011

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I forgot to mention this also.When you call your loccal DHS office and talk tot the DDS childrens services person,tell them you want an application for Respite.They will tell you all about it.Is a service that they give you money to pay someone to come in and give the parents a break everyone once in a while and to pay for someone to come in and help you with your child.The amount you get depends on their budget and funds and its only once a year you get these funds,but anything is better than none.hope this helps also.good luck.let me know if there is anything esle i may be of help with.

Rachel - posted on 03/19/2011

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When my son was first born...all he had for a diagnosis was a seizure disorder and developmental dealys.Not sure if your state offers it.but Call your local DHS office and ask to speak to the person with DDS childrens services.There is this program that is Called Medicaid Waiver for special services.....at first i was told that he couldnt get this service beacause all he had for a diagnosis was a seizure disorder and developemental delays....so called my local DHS office and spoke with the person in DDS childrens services and told them what i was told.They told me they dont know why i was told that he would even qualify,because they have kids that,thats all they have and they are getting personal care....that what personal care is for is for someone to come in and help you with your child or help you child with personal care.Also ask for an application for Respite,they give you money depending on their available funds and budget,but its money once a year to pay someone to come in and give the parents a break and to help you care for you child.I just sent my application in cause my son is out of school for the summer and i am having to take off during the summer months to care for him.but anyways.try those things i mentioned and tell them that you need help and need to apply for what ever services your child is eligeable for and can qualify for.i hope this helps.

Mandy - posted on 07/12/2010

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Try Children's hospital in cincinnati, oh. They was really wonderful to my daughter. She was there for the 1st 13 months of her life. Then on and off for years. The social worker at the hospital helped me with many things. Maybe they can be of assistance to you. Also, try a school that is partial special needs and partial reg education. It is a wonderful transition. My daughters special needs pediatrician was Dr. Ron Levin. He is a bit arrogant and not so sweet at times. However, if I over looked that he helped us out so much. The hospital # is 513-636-3000. They will give you his extension. My daughter diagnosis is severely developmentally delayed. So aggravating. You will get the help you need in cincinnati. God Bless and you are in my prayers. My daughter is now 16 and pretty healthy. Still delayed but generally healthy thanks to cincinnati childrens and all her home care!

Carla - posted on 07/12/2010

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hi i think im having the same kids of problem my son was 2 and half when he started walking and he still can not talk but in england they do no see that there is a problem my son is staying in class r for another year as he is still at a baby stage of life. im getting so frustrated as no one seems to want to help or what to tell me whats going on with my son i really hope you will get the answers you need and good luck i can only pray that ill get a answer i need

Kimberly - posted on 05/13/2009

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My son is 7 now. We've been to 3 neurologists, 3 genetic docs, not to mention all the other doctors that make up the more than 30 in total... and NO DIAGNOSIS! He's had SO many tests done, we've decided it's enough... however, he's soon to have his 3rd MRI, to see if there are any changes.
I grew up in Iowa... NW corner... and went to Univ. of Iowa for the first 4 years of my education. Where do you live?

Lisa - posted on 05/06/2009

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Well I can give you a name of a great Childrens hospital in California.. its Loma Linda University Childrens Hospital. My daughter just spent 6 days there for obsevation as she has developmental delay and we are still getting answers but as of right now she has Colpocephaly. Its a cephalic disorder. But I totally understand your frustration, so Im here to talk if you need it bc I am going through the same frustration. If you need more info on the hospital let me know. Is your son seeing a neurologist? The benefit of Loma Linda is its a teaching hospital so your child has a TEAM of doctors to care for and work with him.

Kim - posted on 05/05/2009

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I agree with everyone else. An MRI, genteic testing. Does he have an OT & a PT, does your state have early intervention and if so did you use it? I would demand testing from the doctors. what does your pediatrician think?? You should definately apply for SSI

Sandra - posted on 05/05/2009

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I agree w/ getting a MRI done and also a psycological evaluation from an experienced psycologist. My son was diagnosed w/ autism spectrum disorder otherwise known as PDD. He currently receives home therapy and is in a special school. The diagnosis is important so the state can help fund for services.

Jessica - posted on 05/03/2009

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Hello, I am so sorry you are dealing with all of this. There are some occasions where they say there is no medical reason for developmental delay. But I do agree with other posters here who said that you should get all the tests you can get. A sedated MRI seems like the most logical thing, genetic bloodwork, hearing test, etc. Also, have his thyroid hormone checked. My daughter had all of these tests and everything is normal but she has a lot of delays. She does have hypothyroidism and thyroid function can absolutely affect brain function. For financial assistance someone mentioned SSI, you go to the social security office and apply for that. We were denied because we apparently make too much money (which is crazy). Then there is a gov't office called DSHS and you can apply for assistance through them as well I believe. I hope you get some help and some answers as soon as possible. Take care.

Donna - posted on 05/02/2009

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I dont know how far you live but I live close to Omaha and they have a great health care system here. You can have an MRI done that is sedated and it works quite well. I am an RN and I have a couple of special need kids that I have adopted. One was developmentally delayed, he as been diagnosed as Autistic. I do think you need to really press your doctors because it appears to me there are significant symptoms that are affecting his way of life. Financial situation with his severe delayments you are looking at disabilty, check out SSI there is an application requirements and form for children. The more doctors involved the better. I hope this helps.
Donna

Amy - posted on 05/01/2009

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The Childrens Hospital and the University of Cincinnati in Cincinnati has a wonderful

testing site from what I have been told altho, I myself have not used it. Try the mayo

clinic also. You have to push for your child and be an advocate for them, no one else will. I know it is depressing and each day is different--the only thing you can do is

try for them--you yourself will go thru the stages of death & dying (denial, depression,

etc...) and you can go thru it daily or several times a day just know there are others

in the same situation even tho it isn't easy. But definitely get medical help--also go thru

social service agencies, and school systems in your area for help!!!

[deleted account]

It sounds like you need to press your doctor to get a medical diagnosis. Your child should have had a slew of tests to determine if he had any type of genetic syndromes, brain abnormalities, etc. Until you feel like you have been tested to death, I would keep at it. There is a certain power in having a medical diagnosis. At least you can research the prognosis and know what to expect long term!

Celane - posted on 04/30/2009

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Josh had an MRI years ago and they said it was noisy. When he was about a year it showed slow brain development. The neurologist I saw then was the one that said, "why can't we just call it delayed development and leave it at that!?" He was lucky to walk out of that room alive! I'm frustrated and depressed from all the worry and everything else associated with my "special needs child"

[deleted account]

You don't say if you have seen a neurologist or had an MRI or other testing. Most states require the school system to give intervention therapy, is the school run by your school system?

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