GDD diagnosis but no known causes

[upwardsandonwards33]

DD who is 22 mo was last year diagnosed as having GDD but all the tests - MRI, genetics, bloods showed as normal. I didn't have a traumatic birth and there were no real problems in the pregnancy. There is no one on either side of the families who has any time of GDD.
Has anyone been in this situation. How is your dc doing?
My dd is such a cute, giggly girl and is progressing but is delayed in her motor progress and her speech development.
I just sometimes wonder where it all came from too.

No experience of a diagnosis, but have known kids be extremely "behind" and catch up. How delayed is she?

We've come at the same problem from the opposite direction. My daughter (33m) had a GDD diagnosis resulting from Infantile Spasms which is a type of epilepsy that causes regression and brain damage. Her main problem areas were gross motor and speech. She has had every test known to man to try and find an underlying cause and they are all normal. Whilst this is frustrating it's a good thing - none of the things they are looking for/ruling out are things you want your child to have.
What help are you getting? It varies by area and is patchy at best, but worth getting enrolled in as much as possible as early as possible. We go to a group at the children's centre and one run by local parents/careers association, also Portage which if you can get it is fab. We haven't had speech therapy as there is almost zero provision in my area but worth asking about it. We did 18months of a program of home exercises from a Snowdrop for brain injured children (GDD would qualify, you don't need to have an 'injury' you can see on a scan) which was very helpful. My daughter has made great progress and is almost caught up - still behind on gross motor but is walking/running/jumping/climbing, so the fact she can't stand on one leg is not a big deal. Let me know if you want suggestions of websites etc.

That's good news Tessie

Yes please do send me info on any websites - you can post here or inbox me Milo

Copied from the info files on a group for IS I help run, so you may need to filter out what is relevant

Resources for assisting development, as recommended by parents

Assessment
• The ASQ questionnaires for assessing development are all available online (google ASQ and an even numbered month) and may help you get an idea where your child is up to. Think carefully before doing this if the information will be useful or demotivating!
• If your child has a development delay you should ask to be referred to a community paediatrician, who will carry out an assessment and refer you to other services (speech, physio, occupational therapy, Portage) as appropriate.
• In some areas (or dependent on severity of needs?) your child will be assessed by a multidisciplinary team, sometimes called a MAISEY assessment. (Multiagency, Assessment and Intervention Service in the Early Years)

Speech and language, social communication

• Talking Point www.talkingpoint.org.uk/ A really helpful website with progress checker for various ages and lots of tips.
• Small Talk by Nicola Lathey – useful book with tips for each stage of language development.
• Makaton – a simple communication system developed for use by anyone with language delay or learning difficulties. It consists of sign language and symbols that accompany spoken English. Lots of crossover with British sign language but is much easier to learn and emphasizes the important words in a sentence www.makaton.org/aboutMakaton/
• Baby signing classes – often using makaton, help with early communication e.g. Sing and Sign www.singandsign.co.uk/
• Sound therapy e.g. The Listening Program which helps with attuning the ears to speech frequencies. a.advancedbrain.com/tlp/the_listening_program.jsp

Gross Motor, fine motor, problem solving

• Physiotherapy
• Occupational therapy
• MamaOT website – blog with loads of useful information about developing skills, good toys to use, milestones mamaot.com/
• Portage – portage is a home visiting early education service for children with additional needs. You need to be referred by your HV or paediatrician. The Portage model of learning is characterised by the following attributes:

1. regular home visiting;
2. supporting the development of play, communication, relationships, and learning for young children within the family;
3. supporting the child and family’s participation and inclusion in the community in their own right;
4. working together with parents within the family, with them taking the leading role in the partnership that is established;
5. helping parents to identify what is important to them and their child and plan goals for learning and participation;
6. keeping a shared record of the child’s progress and other issues raised by the family;
7. responding flexibly to the needs of the child and family when providing support;

• www.portage.org.uk/ • Swimming • Small Steps Forward by Sarah Newman – book with clear explanation of normal development stages and lots of games to help your child with the next step. • Teaching Motor Skills to children with cerebral palsy and movement disorders by Sieglind Martin (useful guide to physio type exercises for children without CP also)

Neuroplasticity (the idea that the brain can change itself in response to different inputs and can form new pathways to overcome injury)

• Kids beyond Limits by Anat Baniel, founder of the Anat Baniel Method (ABM)
• The Brain’s Way of Healing/The Brain that Changes itself by Normal Doidge – inspirational accounts of brain healing.
• Snowdrop – charity to help brain injured children fulfill their potential www.snowdrop.cc Snowdrop is a small charity based in Devon that carries out developmental assessments and designs programs of home exercises. Founder Andrew Brereton’s book ‘Brain Inured Children- tapping the potential within’ is a good place to start.
• Bibic www.bibic.org.uk/ and Cerebra w3.cerebra.org.uk/ are other charities working with brain injured children that are worth checking out.

Other therapies parents have used to assist development

Craniosacral therapy/chiropractic - Therapists work on the skeletal/nervous system relationship and cranium to release tension and in the case of treating children who had IS, work on under-developed reflexes assisting in building strength and developing gross motor skills. Treatment can also help with 'low tone' issues which in turn can hinder gross motor development.

• Bowen therapy – Bowen is a gentle manipulative treatment that aims to rebalance the body

Have you been offered entry to the 100,000 genomes project? It's a whole genome mapping project for people who haven't yet had the cause of their problem identified.

How far behind is your DD? You might be able to get portage, which would be a good help.

Thanks Milo. Will have a read through.

Iougle- will contact paediatrician about that project. Thank you.

Hi All,

I just wanted to add you might also want to look up the charity SWAN UK where you can meet lots of other parents of children with no overall diagnosis/reason for their difficulties. They have a geat closed Facebook group. Our son is now 8 and we still do not have a defining diagnosis for him but the help from SWAN and the support of other parents in similar situations has been invaluable.

Thanks hanbee. Will look into SWAN