15 month old with undiagnosed special needs!

Casey - posted on 09/22/2009 ( 11 moms have responded )

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My 15 month old son has many problmes throughout his life. We have been to about 6 or 7 different specialists and now we have been referred to 2 more. Right now we have no diagnosis, however genetics is looking at a few rare syndroms, and neuromuscular is looking at some other stuff. Its very stressful and at this point you just want answers. Alittle history; sensory issues to food, clubbed feet, possible Sandifer Syndrome, delayed stomach emptying, hyper and hypotonic, global developmental delays, no speech, list goes on. Has anyone else been through this and do you have any advice?

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Dorothea - posted on 03/13/2011

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My son Mike, he's 6, has CP. He is hyper tonic, and has global delays in all areas. I understand the frustration, the pain of not knowing what to do or how to do it.

My first suggestion is to find a developmental pediatrician. Start with the closest children s hospital. They are very helpful. I agree totally that you label jars not kids, but having that label can be a starting place. Are you seeking therapies for your sons delays. Even if you don't have a DX if he has global delays therapy is a must. Your standard pediatrician can help you get this in order.

Secondly, find a good support group. They are helpful in SO many ways. Your pediatrician again, or community health department should be able to point you in the right direction.

The most important thing you can do as a mother is love your child. It sounds easy I know, but I mean LOVE your child. He's unique, and try (as hard as you can) to not compare him to other children. Enjoy him for who he is. It's a lot harder than it sounds. Never stop fighting. (Actually, you don't have quiting as an option as a mother of a special needs child.)

Mike is 6 physically but 4 developmentally, and I'm ok with it. We celebrate EVERY thing. It's not easy, I want to compare him to my friends children who are 6, but I have to remind myself that that's not Mike. That's so and so...

When things get tough, take a couple of deep breaths and remember that although it's hard, it's a journey that YOU are on, and you can't really get off so you might as well enjoy it. Make the most of it.

Good luck!

Melanie - posted on 09/25/2009

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yeah hi my name is mel and I have a 15 year old boy with an intellectual disability the road is so hard at the beginning but with time it should get easier just be positive and if you need any help or positivness I am here for you. Love mel.

Renee - posted on 09/24/2009

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In the disability Rights/People First movement Label Jars not people.What He needs most is love and affection..Advocate for Him get him in school with spec ed services.God knew you can parent Him My son has Osteogenesis Imperefecta,a rare genetic dirsorder commonly known as Brittle bone disease.We adopted him knowing this my late DH had the severe form of the disorder.We saw genetics alot because they thought Nigel might have had another disorder rare than OI that also caused Fractures.Get involved with groups like Parent to Parent,FOCUS and other parent groups/advocates.

Sabrina - posted on 09/23/2009

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hi,
i think my best input for you...

is something that i was told when my son was awaiting diagnosis,
it took 7 years.
i wanted to claim him into something, so i could be a good mom and read and google every fact and history i could find. i wanted to know whom was to blame? how did this happen? what his prognosis in later life would be...

finally, his therapist and neurologist told me...
in some way, the "diagnosis wont change his treatment."
so i thought....well,
no matter what we could find on an MRI..we know he cant properly eat, brush, shower, digest,comprehend, socialize,cope with anxiety and sensory shifts.
thats a fact.
so the treatment really was the same.
physical therapy,
speech therapy
play therapy
tutoring
adaptive aids
alternate forms of communication
modified home schedule...
u get the point, im sure your living through it

basically, i gave me room to refocus on treatment goals and let the pro's do what they do
allowing me to trust the process a little more
go with the flow and just take it one day at a time

Annette - posted on 09/23/2009

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Hi Casey,

My daughter had an "undiagnosed syndrome" for 17 years. Her first 2 years of life were spent in ICU at the Childrens Hospital. After heart surgery my daughter was referred to a pediatrician who specialized with children with special needs. He never understood what "undiagnosed syndrome" meant either. When she was 17 she ended up back at Childrens' Hospital with pneumonia. Our pediatrician refused to send her home until her syndrome had a name put to it. She was very developmentally delayed, still is. Genetics finally found a new test called a "fish test", and our daughter was diagnosed with Smith-Maginnis Syndrome.

Regardless of who says what, stand your ground and refuse to accept "I don't know". Had I done that our daughter would have received the PROPER care and help with education. It is only b/c she was not diagnosed that even the Board of Education didn't know how to help effectively.

[deleted account]

My daughter is 7 and we still dont have a diagnosis. Shes seen several orthopedic specialists, and even had a developmental assessment done before school. They cant tell me why she cant walk properly but they can tell me she has short term memory issues that may eventually effect her schoolwork. She only had slight delays in fine motor development but I knew as soon as she started walking there was something amiss!

Tina - posted on 09/23/2009

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Well I am going through some things with my son. I dont think they are as major as your son, but he has developmental delays, scoliosis, his nerves in his brain didnt migrate where they were suppose to when I was pregnant, they dont have a diagnosis for him either. He will be 2 in December and he doesnt walk yet, he has a physical therapist once a month to come see him. I know that the circumstances are completly different in our children but I know how stressful it is and frustrating it can get when they are delayed. Every milestone was delayed for my son and I thought he would never get there and he didnt show interest in wanting to do anything. Like now with walking he gets mad at his self when he falls and gives up and it tears me up to watch him just give up. My advice is to just keep working with him and pray for him. All the doctors are suprised at how well my son is doing, I believe it is all the prayers for him that have got him this far. We have talked to a Geneticist and he was looking for a diagnosis or something in our genes but he didnt find anything, we decided to quit trying to find out what and why and just enjoy him. Finding out what and why doesnt make it go away and sure wont make you love him any less. So just keep working with him and praying.

IF GOD BRINGS YOU TO IT HE WILL BRING YOU THROUGH IT!!

Casey - posted on 09/23/2009

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i am so gald that you guys have responded to this. it is very diffucult on the parents and the child and siblings going through it. we love our little man and wouldnt change him for the world! we will be having a care conference today with all of the head honcho drs so we can all get on the same page. im hoping somehting will come out of it. its just that time to be patient and be your childs advocate!

Laura - posted on 09/23/2009

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I have a 2 yr old with no diagnosis...we have had extensive genetic testing with no diagnosis......seizure disorder...severe developmental delay ( newborn development)....cortical blindness...nissen...100% g-tube fed....trachial malaysia.....nonverbal....pulmonary issues.....doesn't respond to our family at all........I am now looking into going to our 4th major medical center for analysis.........It used to really bother me that no one could tell me what is wrong with him......It would be nice to have a name to what possesses him.....I have to remind myself to enjoy every day and not worry about the future:)

Nitza - posted on 09/22/2009

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Just think that god don't give people loads that can't support. Just don't giveup and go where you have until a diagnose is given. Your son is an angel that God send to your family. Love, take careof him and God will do the rest.

PATRICIA - posted on 09/22/2009

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Well if it makes you feel any better I have a disabled child that also had clubbed feet, rare unknown seizure disorder, EXTREMELY rare everything...."I just don't know" is a saying I have grown accustomed too and I have had the most up-to-date neurogentic testing done on her, including contacts with Doctors in Austrailia......I COMPLETELY UNDERSTAND.....No answers EVER......do yourself a favor and enjoy your child.....been there done that...trust me...I know what you are dealing with

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