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MrsB612
LIF Adolescent
Member since 12/12 784 total posts
Name:
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Severe Delays
Asking for a family member. Their DD is 26 months old. She’s still not talking or walking. She’s been evaluated by EI and is getting all the services she can get for almost a year now. Mom has also had her evaluated by a neuro and seen 2 different peds. No one has any explanation/diagnosis and has only been able to tell her she is about 15 months delayed. She has only recently started to cruise and will walk if you give her a finger/stick. Will also stand for short periods of times. She used to get around by scooting but now has mastered crawling. She does babble and say mama/dada/nono but we don’t think she’s using it appropriately. She makes good eye contact as well. Her mom thinks it’s a sensory issue so is going to attempt to get more OT – even though she’s already receiving the max (she gets about 3 hours of therapy a day). I was thinking a bad case of low muscle tone – she also gives them a hard time with eating and prefers to only eat soft foods. Looking to see if anyone has experienced anything similar. Any suggestions. She is completely overwhelmed and frustrated and I feel so terrible that she still doesn’t have any answers. TIA
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Posted 5/2/18 11:20 AM  |
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MrsT809
LIF Adult
Member since 9/09 12167 total posts
Name:
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Severe Delays
Maybe a developmental ped or geneticist? If she's on fb tell her to look for groups for global developmental delays. There are groups for everything these days and I've found parents are so knowledgeable and supportive.
It never hurts to push for more services. We did a mommy and me group at dd's pt agency through ei and I believe there may be something with swimming she can look into. Also, I wonder if she can look into a special needs preschool. I know she's still young but I believe some schools do strart before 3. Could be worth bringing up with ei.
Eta- there is a fb group called hypotonia parents connect that I found helpful.
Message edited 5/2/2018 1:59:54 PM.
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| Posted 5/2/18 1:35 PM |
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lightblue
LIF Adult
Member since 1/17 2249 total posts
Name:
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Re: Severe Delays
What about a developmental ped? Although the wait for a developmental ped is probably 6-7 months. I'm surprised the neuro didn't find anything.
My son has autism and is globally delayed. He was diagnosed through EI and then at 2 I put him in a center based EI program and he continued there for pre-school.
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| Posted 5/2/18 2:23 PM |
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babyfever24
LIF Adult
Member since 1/11 3340 total posts
Name:
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Re: Severe Delays
Definitely look into a geneticist. There are many rare disorders out there that aren’t visible (appearance wise). It sounds like they are moving in the right direction with the services however a true DX may help them get more. Good luck!
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| Posted 5/2/18 3:02 PM |
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BargainMama
LIF Adult
Member since 5/09 15660 total posts
Name:
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Re: Severe Delays
Reading your post, I was thinking mild form of CP maybe? I agree with the others, she should see a dev. ped, maybe a new neuro
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| Posted 5/2/18 3:33 PM |
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Dolphinsbaby
My 3 little guys!
Member since 12/10 2943 total posts
Name:
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Re: Severe Delays
Posted by lightblue
What about a developmental ped? Although the wait for a developmental ped is probably 6-7 months. I'm surprised the neuro didn't find anything.
My son has autism and is globally delayed. He was diagnosed through EI and then at 2 I put him in a center based EI program and he continued there for pre-school.
same for me. I would look into a developmental pediatrician.
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| Posted 5/2/18 4:13 PM |
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mnmsoinlove
Mommy to 2 sweet girls!
Member since 3/09 8585 total posts
Name:
Melissa
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Re: Severe Delays
I would tell her to call around to several dev. peds and get on the schedule and than call back daily and ask if there has been any cancellation. I was able to get my dd a cancellation appointment about 2 months after I made her 1st appointment.
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| Posted 5/2/18 5:55 PM |
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MrsB612
LIF Adolescent
Member since 12/12 784 total posts
Name:
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Re: Severe Delays
Posted by Dolphinsbaby
Posted by lightblue
What about a developmental ped? Although the wait for a developmental ped is probably 6-7 months. I'm surprised the neuro didn't find anything.
My son has autism and is globally delayed. He was diagnosed through EI and then at 2 I put him in a center based EI program and he continued there for pre-school.
same for me. I would look into a developmental pediatrician.
She asked about center based EI. They won’t take her bc she’s not walking she said.
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| Posted 5/2/18 6:45 PM |
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LuckyStar
LIF Adult
Member since 7/14 7274 total posts
Name:
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Re: Severe Delays
Posted by mnmsoinlove
I would tell her to call around to several dev. peds and get on the schedule and than call back daily and ask if there has been any cancellation. I was able to get my dd a cancellation appointment about 2 months after I made her 1st appointment.
This.
I know this is far from the norm, but according to my in laws, DH didn't walk until he was 2 and didn't speak at all until he was 3 and not in sentences until shortly before kindergarten. He never received a diagnosis or therapy.
He is a fully functioning adult now and one of the smartest people I know.
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| Posted 5/2/18 7:40 PM |
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Rosie0613
LIF Adolescent
Member since 8/10 875 total posts
Name:
Rosie
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Re: Severe Delays
Your family member's DD is my son to a T. He has a sensory processing disorder. He becomes so fixated on whatever is bothering him that he stops and won't speak. He didn't crawl at all and took his first steps at 15 months. He didn't fully walk on his own until he was 18 months old and started getting therapy. He is almost 3 now and still will sometimes only want soft foods. I have to keep jar foods in my pantry because he won't eat otherwise sometimes.
My advice - find new therapists. She sounds like a classic sensory processing disorder kid. My son had a set of therapists he worked with for 9 months and nothing. At the recommendation of another mom at a playgroup, I changed his therapists and he was dealing with his sensory processing disorder within 6 weeks and speaking within 2 months.
If I hadn't changed his therapists, my belief is that he wouldn't be where he is now. He has progressed so well that I can send him to school now in Sept. for Pre-K and I know he'll be ok.
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| Posted 5/2/18 11:36 PM |
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Hopefulmama
LIF Adult
Member since 4/14 1014 total posts
Name:
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Re: Severe Delays
Posted by BargainMama
Reading your post, I was thinking mild form of CP maybe? I agree with the others, she should see a dev. ped, maybe a new neuro
I thought that too, but a neuro should be able to spot even mild CP from a mile away (I have a son with mild CP). Would def look into geneticist. A dev ped is more going to make recommendations for services. They don’t do much with neuromuscular or genetic disorders. Wouldn’t hurt, but I would def see another neurologist at a major academic medical center (Claudia Chiraboga is the big neuromuscular person at Columbia. Also Emma Lauretta at lij) and genetics.
Message edited 5/3/2018 12:07:13 AM.
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| Posted 5/3/18 12:06 AM |
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iluvmynutty
Mom to E&M
Member since 12/08 1762 total posts
Name:
D
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Re: Severe Delays
She could also try a Pediatric Physiatrist. Dr Semel from St Charles is amazing. A Physiatrist is a Rehab Medicine Dr. they look at the whole picture (neuro, ortho, development...) Dr Semel also happens to be a great diagnostician and wonderful with kids.
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| Posted 5/3/18 6:25 AM |
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LInMI
LIF Adult
Member since 7/10 1801 total posts
Name:
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Re: Severe Delays
Posted by Rosie0613
Your family member's DD is my son to a T. He has a sensory processing disorder. He becomes so fixated on whatever is bothering him that he stops and won't speak. He didn't crawl at all and took his first steps at 15 months. He didn't fully walk on his own until he was 18 months old and started getting therapy. He is almost 3 now and still will sometimes only want soft foods. I have to keep jar foods in my pantry because he won't eat otherwise sometimes.
My advice - find new therapists. She sounds like a classic sensory processing disorder kid. My son had a set of therapists he worked with for 9 months and nothing. At the recommendation of another mom at a playgroup, I changed his therapists and he was dealing with his sensory processing disorder within 6 weeks and speaking within 2 months.
If I hadn't changed his therapists, my belief is that he wouldn't be where he is now. He has progressed so well that I can send him to school now in Sept. for Pre-K and I know he'll be ok.
I agree. I would definitely look for another therapist and neurologist. Also, please have her checked for retained primitive reflexes. When babies pass/miss milestones (IE: crawling, sucking, etc) there reflexes do not integrate. It can cause all senses to go into overload. IE: sensory, visual, audio, etc.
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| Posted 5/3/18 1:06 PM |
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jamnmore
LIF Adult
Member since 6/16 989 total posts
Name:
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Re: Severe Delays
Posted by MrsB612
Posted by Dolphinsbaby
Posted by lightblue
What about a developmental ped? Although the wait for a developmental ped is probably 6-7 months. I'm surprised the neuro didn't find anything.
My son has autism and is globally delayed. He was diagnosed through EI and then at 2 I put him in a center based EI program and he continued there for pre-school.
same for me. I would look into a developmental pediatrician.
She asked about center based EI. They won’t take her bc she’s not walking she said.
My son was not walking at 2 and attended center based services. I would tell her to push for it with EI.
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| Posted 5/7/18 2:28 PM |
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