Please or to access all these features

SN children

Here are some suggested organisations that offer expert advice on special needs.

Daughter has a small head

4 replies

ParrotK · 25/08/2025 22:19

Hello. So my daughter is 8 and has newly been diagnosed with ADHD and learning difficulties but because the pediatrician checks physically too they discovered my daughters head and height is very small for her age. She is on the 0.4th percentile for both her weight is the 2nd percentile. Before this her head was only measured when she was born and it was a normal size.

this led to blood tests and urine tests checking for celiac, growth problems and genetic tests. All came back fine.

at the last appointment her head was still on the 0.4th percentile her head is measuring 49cm. I also mentioned her hair is still like baby hair and girls her age have very long hair and thick I actually haven’t seen a child her age with short fine hair. So the pediatrician mentioned that they can do genetic testing targeted at conditions on her head and growth and so we said yeah ok.

We are currently waiting for the results. I had a phone call on the 31st July from the secretary saying she can’t tell me if anything has come back on the bloods as the dr needs to review it first and so she will flag it for the dr to review the results but the dr was on holiday and when the dr comes back the secretary will be on holiday. She said we will send you a letter. So now I am wondering if it’s found anything or not. I know it won’t be anything severe as would have let me know promptly but I’m still just waiting 🥴
my only real concern is her learning as she is behind in her education.

I am just wondering has anyone else had this before their child very small in height and head. Did results come back normal or shown something on them? Anyone had a similar experience. Thank you

OP posts:
flawlessflipper · 26/08/2025 11:32

Different reasons but we have had genetic testing (looking at mutations for a specific condition, array CGH, WGS). For us, when they found something, we got appointments.

Genetics can be a long process. Some never get answers. Some get them years down the line.

LocoCoco13 · 26/08/2025 19:17

ParrotK · 25/08/2025 22:19

Hello. So my daughter is 8 and has newly been diagnosed with ADHD and learning difficulties but because the pediatrician checks physically too they discovered my daughters head and height is very small for her age. She is on the 0.4th percentile for both her weight is the 2nd percentile. Before this her head was only measured when she was born and it was a normal size.

this led to blood tests and urine tests checking for celiac, growth problems and genetic tests. All came back fine.

at the last appointment her head was still on the 0.4th percentile her head is measuring 49cm. I also mentioned her hair is still like baby hair and girls her age have very long hair and thick I actually haven’t seen a child her age with short fine hair. So the pediatrician mentioned that they can do genetic testing targeted at conditions on her head and growth and so we said yeah ok.

We are currently waiting for the results. I had a phone call on the 31st July from the secretary saying she can’t tell me if anything has come back on the bloods as the dr needs to review it first and so she will flag it for the dr to review the results but the dr was on holiday and when the dr comes back the secretary will be on holiday. She said we will send you a letter. So now I am wondering if it’s found anything or not. I know it won’t be anything severe as would have let me know promptly but I’m still just waiting 🥴
my only real concern is her learning as she is behind in her education.

I am just wondering has anyone else had this before their child very small in height and head. Did results come back normal or shown something on them? Anyone had a similar experience. Thank you

My daughter is very small for her age and has a tiny head and it is connected with her genetic condition. I think the average wait time for WES testing is 9-12 months and some just never get answers. For us they only tested 1 specific thing so it only took around 6 weeks for results.

Did the dr tell you if they thought anything specifically? We were told there and then what he thought the issue was so it helped my anxiety slightly

ParrotK · 26/08/2025 23:35

LocoCoco13 · 26/08/2025 19:17

My daughter is very small for her age and has a tiny head and it is connected with her genetic condition. I think the average wait time for WES testing is 9-12 months and some just never get answers. For us they only tested 1 specific thing so it only took around 6 weeks for results.

Did the dr tell you if they thought anything specifically? We were told there and then what he thought the issue was so it helped my anxiety slightly

Hi she has had the genetic testing pretty quick tbh it’s just the results that are taking the longest. They didn’t tell me what they were testing for but I researched the letter I got with the test names and I think they are testing for microcephaly and shox deficiency. It sounds like they do have the results it’s just the drs have to review them first 😏

the dr did keep asking me if I had alcohol or drugs when pregnant which I was very shocked by the questions and it was a big no! They also asked if I was ill or had an infection during pregnancy which to my knowledge was a no.

Since researching I think them questions are linked to environmental reasons for microcephaly. I have researched a lot about it myself. But my daughter isn’t badly impaired. She can talk good but she did take a long time to talk properly when younger, she has bad behaviour issues sometimes for example she will be ok one minute then chucking things at strangers whilst we are waiting for a bus, trying to run into roads and try to get out of my grip like she doesn’t care who’s watching (embarrassing for me with a queue of people watching 🥲) and she is very hyper and very picky with foods (hardly eats unless she likes it which can be something different all the time) She is also behind in her work and struggles academically. The dr has wrote she has no dysmorphic features. So I ain’t too sure i am just waiting to see maybe it’s mild microcephaly?

OP posts:
LocoCoco13 · 27/08/2025 00:27

ParrotK · 26/08/2025 23:35

Hi she has had the genetic testing pretty quick tbh it’s just the results that are taking the longest. They didn’t tell me what they were testing for but I researched the letter I got with the test names and I think they are testing for microcephaly and shox deficiency. It sounds like they do have the results it’s just the drs have to review them first 😏

the dr did keep asking me if I had alcohol or drugs when pregnant which I was very shocked by the questions and it was a big no! They also asked if I was ill or had an infection during pregnancy which to my knowledge was a no.

Since researching I think them questions are linked to environmental reasons for microcephaly. I have researched a lot about it myself. But my daughter isn’t badly impaired. She can talk good but she did take a long time to talk properly when younger, she has bad behaviour issues sometimes for example she will be ok one minute then chucking things at strangers whilst we are waiting for a bus, trying to run into roads and try to get out of my grip like she doesn’t care who’s watching (embarrassing for me with a queue of people watching 🥲) and she is very hyper and very picky with foods (hardly eats unless she likes it which can be something different all the time) She is also behind in her work and struggles academically. The dr has wrote she has no dysmorphic features. So I ain’t too sure i am just waiting to see maybe it’s mild microcephaly?

Edited

Ah yes results can take a while as the geneticist needs to look over and report on it and if hes on holidays then obviously cant really do that. Id try not to stress yourself out over it to much as you'll just drive yourself sick, I know thats easier said than done.

I found putting all my daughters symptoms ect into chatgpt when I was researching really helped, and the first condition it spat out is what she has so maybe worth a shot and you can then bring that up with her drs if something hasnt been found?

New posts on this thread. Refresh page