Tongue Tie Experts - I need your advice again!

[tacal]

Hello

Some of you have given me great advice about tongue ties a couple of times already. I am really grateful for all the advice you have given me so far. The professionals I have spoken to think ds's tongue tie is not the problem and his eating problems are Autism related. I have posted the following in the special needs section and would be grateful to hear your thoughts on this.

My ds (4) who has a dx of Autism has always had a difficult relationship with food. Breastfeeding did not go well. He managed bottle feeding ok but was often sick afterwards and would cry. Moving onto solids was a nightmare for me. The constant gagging and me thinking he was going to choke was awful. I will never forget how scared I felt when trying to feed him. Even now he can gag on certain textures and be sick. I still watch him closely when he is eating apples and carrots (things that are not soft foods).

His diet is very restricted. He eats the same things every day and will not accept new foods. He likes his food to be cut up quite small. He eats fast and does not chew things very well. When he tried eating chewy haribo type sweets he swallowed them whole.

He freaks out when anyone offers him crisps, he cries and is angry. He refuses to be around crisps.

Does all this sound like eating problems caused by sensory issues and/or because he has autism?

DS also has a tongue tie and many of these problems can be caused by having a tongue tie. The doctors/speech and language therapists who have seen ds are saying that his tongue tie will not be causing these problems.

I really dont know whether to push for the tongue tie to be cut or accept his eating problems are not caused by the tongue tie.

I would be grateful to hear other peoples thoughts on this. I want to do what is best for DS and cannot make up my mind about the tongue tie.

What if I put him through the tongue tie operation and it made things worse? Maybe it would be difficult for him to accept the change to his tongue.

Any thoughts on this would be very much appreciated. Thank you

Hi Bigfingers, thank you for sharing your thoughts regarding my ds. I really appreciate you taking the time to post a reply to my op.

I think what you are saying is correct. I was saying the exact same thing today to the Manager of Speech and Language Therapy at the clinic where my ds was diagnosed. I am sure the breast feeding and weaning was tongue tie related but I can see that all his problems now do seem to be sensory and autism related.

I am sure he had a problem eating crisps at some point and this has caused his crisp phobia. I think you have described the situation very well!

Ds is being referred to an 'eating specialist'. While I am waiting on the appointment I will try to make contact with Dr Levinkind.

Mawbroon, I wasnt very good at checking ds for posterier tie. I think it could be a possibility.

Good to hear you are still going to contact Dr L. Don't underestimate how much of this could be related to the tie(s)

Hi Mawbroon, I have emailed Dr L. and also arranged for another assessment to be done on DS's eating at the clinic he attends. They have promised me help with introducing new foods and how to deal with his food phobia. We are also seeing a dietitian in December. So I will just have to wait and see what happens.

Hi all,

I'm also looking for some advice on this. My 17month isn't making the full range of sounds but I can't find anyone to take me seriously.

He has posterior tongue tie and upper lip tie though no professional is agreeing they need to be addressed.

Breastfeeding has continued but has always had to be restricted due to my pain and now the teeth are in even more so.

Hi starlight, my experience was that nhs docs were much less concerned with speech than with feeding problems. When we had dd assessed around age 2, consultant said he wouldn't have recommended the surgery if her speech was our only concern. E.g. we were aware of things like yeyyow instead of yellow. Too difficult I suppose to know how much is due to tongue tie and how much is 'normal' toddler speak.

But because of dd's subtle difficulties with food/eating she was referred urgently for the surgery (had her op within a few weeks rather than the few months wait we expected). Has your dd/dd got any problems with solid food? If so worth emphasising these in my experience.