9 month old severely anaemic

[Ah5337]

Hello, my baby was born IUGR and prem (36+2).

At 9 and half months he was found to be severely anaemic through a blood test. He is very delayed in his development (does not roll or sit and always tired and wants to lie and watch everything from a distance). This explains why he has never been interested in playing however has anyone experienced this with their baby? If so how did it affect their brain development ? Will it leave mental or physical impairment. The fact that they never caught it and the doctors have concluded it is iron deficiency anaemia and chronic as it has happened over a long period of time. I am worried it will have caused some sort of damage effecting my son.

I do have another question. Has anybody that has a baby with anaemia found they cannot hold themselves very well?

My DS is still a bit wobbly and not 100% sturdy in himself. The physiotherapist said it will come with time and she feels it has progressed from the last time she assessed him. But I don't know weather it is the anaemia that has caused this or not?

Does anyone have anymore diagnosis suggestions that I can take to the geneticist while they go through symptoms.

I will try list the symptoms here:

• at birth low set ears (however they are now corrected and at the right level)
• at birth bulging eyes (my husbands side all have large bulging eyes and as DS has put weight on they have now fitted in well with his face)
• narrowing head at the temples. (Doctors have never spoken about this or said its a symptom but I just want to include this incase it may be)
• delayed development (he can sit, roll, move, but he just chooses not to)
• delayed communication (doesn't clap, wave, understand what I am saying I.e. if I ask for a toy)
• severely anaemic (caught at 9.5 months)
• not interested in weaning/food

These are the only symptoms that I can think of so if anyone has suggestions please let me know

Yes, she wasn't that interested in food. She was EBF up to 6 months and was a quick feeder. Never took her long and often she'd only have one side. Compared to DS who was a boob monster. Wasn't that interested in solids either. I guess that is part of the reason why she was so small. She was in 6-9 months clothing at 18 months. But as I said she has caught up now and is a really good eater. She still refuses food if not well though. I guess that your DS will need to build up some of his muscle strength in order to do the things he should be able to do. It sounds like he is getting there though. It's still early days. Or HV flagged up delayed gross motor skills at her 1 year review but covid hit and we ended up not following up further. By then she'd been diagnosed with her kidney disorder so we spent a lot of time in hospitals and with doctors.

@Ah5337

They have no started testing yet so haven't checked into prader willi. But from my knowledge it means the baby over eats and puts a lot of weight on. My son doesn't eat anything and not interested in food so I don't think I will have that issue. Also he is tall for being a prem baby who stopped growing. It says they are short in stature but he definitely isn't a short baby. His height has has the biggest increase.

Prader Willi starts the opposite to what you would expect, poor feeding, low tone (floppy), weak cry, delayed development.

@Ah5337

I do have another question. Has anybody that has a baby with anaemia found they cannot hold themselves very well?

My DS is still a bit wobbly and not 100% sturdy in himself. The physiotherapist said it will come with time and she feels it has progressed from the last time she assessed him. But I don't know weather it is the anaemia that has caused this or not?

Does anyone have anymore diagnosis suggestions that I can take to the geneticist while they go through symptoms.

I will try list the symptoms here:

• at birth low set ears (however they are now corrected and at the right level)
• at birth bulging eyes (my husbands side all have large bulging eyes and as DS has put weight on they have now fitted in well with his face)
• narrowing head at the temples. (Doctors have never spoken about this or said its a symptom but I just want to include this incase it may be)
• delayed development (he can sit, roll, move, but he just chooses not to)
• delayed communication (doesn't clap, wave, understand what I am saying I.e. if I ask for a toy)
• severely anaemic (caught at 9.5 months)
• not interested in weaning/food

These are the only symptoms that I can think of so if anyone has suggestions please let me know

There are many many syndromes

Start with asking for full microarray to look for tiny deletions or duplications on the chromosome

Don't assume he doesn't want to move, it could be harder for him if his muscles tend is low and trunk is weak

Communication is a big one , do signs makaton and visuals to offer choices
Look at what he does like or enjoy to motivate him is it you singing, his dad doing something, a toy or a book?
What makes him smile?

If his muscle tone is low

I will bring it up to my paedtrician.

Again I don't think it is as his muscle tone is normal and he has taken time building it due to always being lethargic. He never had any feeding issues when it came to his milk in the hospital. He has taken bottle and breast from the get go and has done well in terms of reflux/feeding/swallowing. He drinks sips of water which he pulls the glass to his own mouth to drink. He has tried food but just doesn't like the taste so I don't see how it is prader willi but thank you anyway

My DS is still a bit wobbly and not 100% sturdy in himself

This says to me low muscle tone
But ask physio
To reassess
And tell you exactly what she sees and writes down as the assessment /diagnosis
And give you ideas for exercises

Get in touch with speech therapist about eating feeding and communication

"Delayed development " doesn't mean lot really it just says not meeting milestone but doesn't tell you why or what to do...
Assess what he can do
What he likes
What motivates him
How to get food into him
And what are the delays in

My dd has been constantly tested for various issues, with no clear cause. Then at 15 was found to have very low iron levels..subsequent testing Showed she had coeliacs disease, which is hereditary, although no one in the family has it. Interestingly 50% of people get silent coeliac so don’t know they have it and chase lots of dead ends for their odd symptoms of what is mineral deficiency.

No gluten, she looks and feels better. Looking back at old photos I can’t believe doctors couldn’t see how pale she was. Bit cross really, she had soooo many Negative tests at the time.

@Embracelife

My DS is still a bit wobbly and not 100% sturdy in himself

This says to me low muscle tone
But ask physio
To reassess
And tell you exactly what she sees and writes down as the assessment /diagnosis
And give you ideas for exercises

Get in touch with speech therapist about eating feeding and communication

"Delayed development " doesn't mean lot really it just says not meeting milestone but doesn't tell you why or what to do...
Assess what he can do
What he likes
What motivates him
How to get food into him
And what are the delays in

I have been reassed 3 times and each time the physio has said he has normal tone. If he has low muscle tone it would have also shown in his legs and arms but they are absolutely fine.

Also he has already had a full microarray when he was born as he was small so they were checking to see what caused it.

It all came back fine and they said all his chromosomes were there and fine and they didn't find any abnormalities. So again I am looking for more specific things that we can check against rather than a full check again.

Good they done micro array
What does SLT say about eating and communication?
He needs more than milk now

Most babies are naturally inquisitive
But certainly anaemia could make them less responsive
See how it hoes with the supplements
But get referral to SLT already
Communication and engagement responsiveness is hoping to be way more important than gross motor skills

He is on the waiting list to see an SLT. From what the health visitors seen, they don't think it's a swallowing problem at all as he is able to chew and move his toungue around well. It's more not wanting to try things that's the issue.

I'm hoping the progress continues in the right direction.

"Not wanting" in a baby is communicating something
Whether pain or dislike or sensory issues or whatever

Hello, thought I would put an update and also ask a few more questions.

3 weeks on and my DS has come such a long way. Progress has been amazing and he is now doing things I never imagined.

• sits up for 5 minutes minimum
• started rolling over
• constantly reaching and grabbing toys
• WEANING! finally. As you know he never ate anything for so long and now he grabs everything and shoves it in his mouth. He still has a few off days but for the most part he Eats 4 times a day
• put on so much weight so now where he should be
• no longer has a weak cry
• always alert and active

I may have forgot some but he us doing really well so far. There are a few things I'm still worrying about.

• he doesnt use any arm stregnth. Doesnt push up when on tummy. He can hold heavy things but he doesn't like pushing up against anything

• he is still a bit wobbly (not sure if this is because he has no upper body stregnth)

• he doesnt bounce when standing. He just stands with full strength in his legs straight

• he doesnt clap or wave or point. He does hand toys over when asked and if I open my mouth he will try to put food in it

If anyone has any experience please let me know.