Bit of a unique situation

[LadyKooKoo]

As a bit of a back story, I went into hospital when I was 13 weeks pregnant with swine flu and pneumonia, I was in an induced coma for 7 weeks, both lungs collapsed, as you can imagine, they gave me a lot of drugs. I was discharged from hospital when I was 24 weeks. I had my 20 week scan in intensive care and everything was looking fine, I had another scan at 26 weeks and they told me baby girl was measuring small (no surprise there, I was on a feeding tube for 2 months) and so after that I had a growth scan weekly until she was delivered by elective c/s last June weighing in at 5lbs 3 ozs at 38 weeks. Baby girl will be 1 in a couple of weeks and is still small, we had her weighed last week and she is now 16lbs 13 ozs so between the 2nd and 9th lines.

She has been going to nursery 3 times a week since January and in March they called DH and I in and said they were concerned about her physical development in that she wasn't sitting unsupported or rolling over and her right hand was clenched a lot of the time. We have been working with them and trying different things and she can now sit unsupported and can roll both ways and has been for about 6 weeks, she has been weight bearing on her feet for a long time but is not crawling though she does lift her bum up and push forward with her hands so she is trying. Her right hand has improved slightly, she can use it but is is like she forgets to, she instinctively uses her left hand to pick things up even if her right hand is closer. If we restrict her left hand then she will just pass things from the right.

Her feeding is also a problem, she is still only on puree as spits out everything solid so feeding can take ages. She struggles with a beaker too but will put finger foods in her mouth, biscuits, carrot sticks, fruit etc.

Cognitively she is doing well, has been smiling since 6/7 weeks, laughing since before Christmas, she knows who we are and understands instructions but babbling is limited.

The referral appointment still hasn't come through and we have been told it will be another 3-5 weeks :(

I am not sure if I am posting on the right forum and I know that my pregnancy is a unique one, I do not know if there is a problem or if my DD is more like a prem baby and things are just taking her longer. I think I just needed to write it all down.

Sorry - I have no experience of this so bumping for you

Thank you.

The nursery have referred us to a pediatrician, we are under the Birmingham NHS so are still waiting for an appointment to come through. We had her 1 year health check last week and the HV said they would have suggested a referral through the GP anyway because of the 'stiffness' in her right hand so were glad the ball was already rolling through the nursery. We have mentioned it to the GP who says she is probably just a bit behind because she is so small. He looked at her tongue and pallet too and said there is no physical reason for her not swallowing her food properly, he thought it was too early to consider a speech therapist (not because of her speech but because of her eating which is what the nursery have also suggested).

When you say she spits out solid food, do you mean off the spoon or do you let her have solids with her hands, baby-led weaning style? Would she feed herself from a plate of bits and bobs? Have you tried all the different textures with her in control?

I's also push for the SALT as they do a lot with feeding with prems (my DS was born at 29 weeks and has cerebral palsy so know far too much about this) I also think you should try a physio referral as the physio will help you and the nursery with what you can do to push her on, as well as keep a general eye out whether for stiffness of motor delay.

For what its worth, My DS was picked up with CP at about 8 months but he was under a specialist. The weight bearing is good, as is the sitting, but does she sit in a "W" position with her legs, or normally legs in front? My DS at 1 corrected could sit (badly) and crawl, but not yet weight bearing. The stiffness and the prem were the key markers for concern not the motor delay.

I would also say however that even though DS does have cp, it is fine

I second the suggestion of asking for a referral to physio as this helped my son lots. With regards to SALT, my son had feeding problems which began when he was a baby and his involvement from SALT started when he was about 6 months old to try to help with this. I recommend you push for that too.

Good luck.

This sounds like very mild cerebral palsy to me. My son has hemiplegia/cerebral palsy. It affects mostly his left hand. He always chose to use his right hand. His CP was picked up earlier than your daughters so is probably a bit more severe. However my son is doing so so well now. He is 5. So please do not go into panic about this.

To give you an example, he can ride a bike without stabilisers, can read and write and goes to mainstream school. Joins in with everyone just as though he didn't have CP. It is just a bit of a weakness specific to him now.

Thank you for all of your messages. I am feeling more positive already. I will speak to the doctor about the SALT referral on Monday. Coming back to the food question, she will eat finger foods no problem but it just dribbles out of her mouth when off a spoon.

Maybe with the food dribbling it is the consistancy that is the problem. If she does have mild cp it could be.

My DN who has cp struggles with some smooth foods, she just doesnt quite have enough control over her mouth to keep them in. She does well with mashed potato type consistency though.

If she can manage finger foods, i would try intoducing more of them and let het self feed where possible. Just cut everything into little bits and put it on the tray of her chair.
My. Dd3 was exclusively finger fed from 12 months because she hated the spoon in her mouth.

Good luck

Lady, there are SALTs who specialise in feeding issues. Some SALTs work with children, some with adults after strokes etc and not every SALT is an expert on every aspect. I would be asking to be referred to a SALT who specialises in feeding issues as well as a physio as others have recommended.

I did have a prem baby (26 weeks) and the issues that you describe (apart from size) are completely different.
Providing that she is maintaining her growth between the same centile lines, then being between the 2nd and 9th centile does not always affect development or mean that there is anything wrong. At this stage dd was at 2nd centile but still sat unsupported, rolled over and crawled within the normal limits.

Another vote for similar to mild cp, I'm afraid.

Issues with 'thin' textures v common. Dd2 did the reaching for the opposite side rather than use the hand closest thang (that's really easy to encourage btw, and the physio will suggest you gently hold the 'good' hand and distract whilst encouraging her to use to the one she avoids. Dd2 spent a lot of time with fists clenched (thumb in palm) and we spent many hours gently stimulating the back of her hands to get her fists to unclench. You can be doing this whilst waiting for referral, as well as playing games that involve moving both arms/ hands (with you moving them to encourage use of the ignored side - we loved lying on our backs and playing 'the grand old duke of York' and moving arms up and down with the words - all the way to floor above the head, and all the way down to the legs... You can do it with lightweight elc wrist rattles at first, and then cheapo dollar store majorette batons held in both hands, hand over hand, or the flashy pen sized light toys. None are suitable for under 3 years alone, but provide great ideas for physio - check out Hawkins bazaar for those squashy toys, too. Same age regs apply.)

SLT will probably recommend 'bite and dissolve' foods, and slts love quavers. I couldn't believe a health professional was trying to get my baby to eat quavers, tbh, but it did provide the transition she needed. I also found that mixing the purses to increasingly firmer consistencies (with Heinz baby porridge lol) worked a treat. It was the difference in consistencies between lumps and thin sauces that was impossible for dd2. We just skipped that stage and went for v firm puréed and then bite and dissolve solids, and then solids. (I'm not suggesting you try this route - dd2 was a choker as well, and we didn't think she would ever eat a normal diet, but she does. ) dd2 had her SLT from birth.

Physio will be the best help. Our consultant told us when dd2 was discharged from hospital that the physio would be the most important person in our life for some time, and he was right. The physio will work on her core strength and stability (a lot of dd2's issues with fine motor are caused by low trunk tone - which sounds weird, but does make sense ultimately) and also keep working on those limbs. (getting them to be used together functionally, as well as separately).

The earlier you get intervention, the better the outcome will be for dd.

Dd2 here at 8 is completely unrecognisable to how she was at 1. None of her therapists would imagine how far she has come. the sooner you get into the system, the better the outcome.

Thank you all for your comments. It is lovely to hear you all sounding so positive about your experiences. I called up the NHS number I was given today when the referral form was sent off and we have our paediatrician appointment now (thanks to the verbal bashing I gave them) and will be meeting with them on the 21st June. She will be 1 year and 2 weeks by then. I have spoken with the GP about physio and SALT referrals and that process has now started though he said it could be sped up by the paediatrician if they think it is necessary.

We had our meeting with the paediatrician yesterday and as DH and I were thinking, they suspect very mild CP. We are being referred to B'ham childrens hospital for an MRI and also to a physio. The MRI appointment could be 2 months but the physio a couple of weeks at most. The paediatrician said we should go back for another meeting in October.

The paediatrician did say that the stiffness in her right arm is not too bad and just needs lots of encouragement but that is something we have really concentrated on over the last few months. Also, she said that DD's hips are fine and her muscle tone seems good too so all encouraging things. We just need the physio to work on her strength.

Roll on chapter two!

Great news for getting a referral. B'ham Children's hosp is a great place to go for help.

My niece has many medical and physical issues and they have not only looked after her really well but saved her life on numerous occasions.

Good luck

Great! well done! Hope it all goes well and you get loads of support and advice there :)