Down's/Down Syndrome and Early Intervention

[Caezzybe]

I know there are other mums on here with children with Down's/Down Syndome and I just wondered what your experiences are with early intervention. Logan's paediatric appointment is next week (he will be 12 weeks old) and I'm just wondering what I should be expecting, what I should be asking for (if it's not offered) and what questions I should be asking.

My husband & I have been doing what we can with physio exercises from books, counting, language and taking Logan everywhere for as much mental stimulation as possible (he loves lights, colours and music). Physically he is doing really well apart from his forward head control being delayed (ironic as he can hold his head up straight on his own from a forward position!). We are signed up for baby massage and baby Makaton (and have been practicing some Makaton signs with Logan already from what we have learnt watching Something Special on CBeebies)

Is there anything else "unofficial" that we could be doing for him, along with what we are already doing and what the paediatrician might refer us for?

 

[Lottie86]

Findlay's is a totally different chromosome issue but on top of all his medical consultants and specialist nurses he has:

-A development consultant who reviews him every 3 months as he is severely delayed
-A speech and language therapist who is teaching us makaton (he doesn't understand anything said to him and cannot speak but we hope he will at some stage in the future) and helping with his feeding issues.
-A physio to work on his muscle issues (he has low tone)
-2 occupational therapists (one is his 'own' OT and the other is the social work OT who deals with him) who help sort out specialist equipment he needs to help with his day to day needs (ie specialist seating and bath chairs) and give us advice on dealing with his sensory issues.

I'm not sure how relevent this is as I am not exactly sure what issues Down Syndrome causes with things like development, muscle tone etc but thought it might be of some use. Sorry if it isn't.

P.S: That pic of Logan is absolutely adorable!!

 

[Caezzybe]

Findlay's is a totally different chromosome issue but on top of all his medical consultants and specialist nurses he has:

-A development consultant who reviews him every 3 months as he is severely delayed
-A speech and language therapist who is teaching us makaton (he doesn't understand anything said to him and cannot speak but we hope he will at some stage in the future) and helping with his feeding issues.
-A physio to work on his muscle issues (he has low tone)
-2 occupational therapists (one is his 'own' OT and the other is the social work OT who deals with him) who help sort out specialist equipment he needs to help with his day to day needs (ie specialist seating and bath chairs) and give us advice on dealing with his sensory issues.

I'm not sure how relevent this is as I am not exactly sure what issues Down Syndrome causes with things like development, muscle tone etc but thought it might be of some use. Sorry if it isn't.

P.S: That pic of Logan is absolutely adorable!!

Hi Lottie and thanks for your reply. A lot of chromosomal problems have similar issues, so your post is very helpful. Logan has hypotonia in his neck and possibly back, which is the main thing that alerted the doctors to his condition (apart from the tell tale almond shaped eyes and gap between his toes). I am hoping that we can get a good physio routine going for him to help improve his tone. I'm sure that he will need speech/language therapy and (thankfully) the Down's Syndrome group that I am part of offer this, along with Makaton signing sessions for children from them being babies onwards. Looking at other children in the DS group, he will probably have other delays as well in mobility, teething, head control, bowel control and learning.

I was actually saying to my husband yesterday that looking back at the time Logan was diagnosed with Trisomy 21, we were very fortunate because if the test had come back negative we now realise that in all likelihood there would almost certainly have been a different chromosomal problem instead and some trisomies or monosomies have a more profound effect than others on physical, learning and emotional development.

Of course, you know all this first hand as you know that we are all forced to very quickly read up and become chromosomal "experts" when we find out our child has genetic difficulties.

I've been reading your Parenting Journal about Findlay, he is a lovely boy and has a brilliant Mummy I've been keeping a diary of Logan's development (paper and pencil, scribbled in the small amount of free time I have) but have considered starting a blog if I could only figure out how

 

[Lottie86]

That's definately a good idea to keep a note of his development, it really helps at appts when your brain can become a bit overwhelmed by everything.

Does Logan look like he has a squint because of the shape of his eyes? Findlay was referred to opthamology in the summer as it looked like he had a squint but we were told he doesn't it just looks that way because of the epicanthal folds (the technical term for the way the skin folds go at the corners of their eyes that makes their eyes the lovely almond shape) mean that his eye partly 'disappears' behind the fold. Apparently it is quite common to varying degrees with a lot of chromosome abnormalities which I had no idea of. The things we learn lol!

 

[ZubZub]

I think you're doing great - and you've got such a positive attitude, which is amazing! Paige has OT every so often, and I'm going to be taking her to the speech therapist soon. We haven't done any signing with her, partly because we don't have ready access to facilities like you have here in SA and partly because I'm still in denial that she won't speak as readily as "normal" kiddies. She's done so well - she's 14 months and can walk if she's holding on to furniture / your fingers. I don't know how much she understands, but is pretty good at making her needs known. We give her omega oils to support brain development and I'm busy looking at nutrient intervention. Basically (I'm sure you know), the extra chromosome produces extra chemicals that aren't meant to be there in such big quantities. Some of these extra chemicals are good for prevention of some kinds of cancer, but others damage the brain (DS babies have brain densities / weights similar to normal newborns but it decreases with age as the damage is done) and increase the risk of leukaemia. Also, DS kiddies may have abnormal folate metabolism, so the folate in their diet is not as effective as it should be. An ex-colleague is a biochemist and he's looking into all that chemistry for me to make some recommendations. www.einstein-syndrome.com makes for interesting reading.

Please keep us posted as to how your cutie-pie is doing!

 

[midori1999]

My son has a speech therapist from 4 weeks old. (I kid you not!) and then portage from about 6 months. Also physio from a few months old.

All in all, I found that although it was helpful, the number of visits was tiring, both for my son and myself, and not really beneficial.

I have taken the standpoint from very early on that I want to encourage my son, but am happy for him to develop at his own pace, providing he is happy, which is the most important thing. He is not 'normal' and there is no point in trying to make him normal. There's absolutely nothing wrong with him as he is. At one point the physio's wanted him to use a standing frame to help him walk and I refused. He hated physio anyway and he would have hated the standing frame and become frustrated and I felt that he would walk when he was ready. He did.

Some people find assistance hard to get, some find the amount offered overwhelming. It seems to depend hugely on which ares you are in and what resources there are at the time.

 

[Floralaura]

That's definately a good idea to keep a note of his development, it really helps at appts when your brain can become a bit overwhelmed by everything.

Does Logan look like he has a squint because of the shape of his eyes? Findlay was referred to opthamology in the summer as it looked like he had a squint but we were told he doesn't it just looks that way because of the epicanthal folds (the technical term for the way the skin folds go at the corners of their eyes that makes their eyes the lovely almond shape) mean that his eye partly 'disappears' behind the fold. Apparently it is quite common to varying degrees with a lot of chromosome abnormalities which I had no idea of. The things we learn lol!

Hi, just wanted to say that although my LO has no chromosome problems he does have epicanthic folds and he too looks like he has a squint, when we saw our eye DR he warned me that Babies with epicanthic fold can be seen to have a squint and its called a Pseudo squint and that its nothing to worry about..personally I love the way his and other Babies who have it eyes look x

 

[mom22boys]

I think you guys are doing great. My little guy is 9 years old and we started early intervention as soon as possible, now speech, ot and Pt took a while to get started and believe it or not my son did not qualify for pt untill he was nearly 15 months old. He started walking when he was 18 months! Everyone suggested that I put him in some sort of daycare for special needs but I just could not do it untill he was 3 and it was really good for him and he made lots of friends! We did lots of signs with him too and we still do he just now starting to try to make new sounds. He does say the usual mom dad bub ect. If you have any questions please feel free to message me! I LOVE to talk about my little guy!!!!

 

[Caezzybe]

Despite the lack of NHS early intervention therapy so far, Logan is doing really well. We piggy-backed onto the local DS group's baby Makaton course as I have already said and he has already done a few signs (he signed "milk - hungry" when I asked him if he was hungry). He is also babbling for England and says "Alan" (his dad's name) every time he wants his nappy changing, along with a whole host of other stuff that he "shouldn't" be saying. His head control is getting much better now. He has hypotonia in his neck, but his back is very straight and his arms and legs are strong.

It looks like all the hard work we have put in at home is paying off - I'll let Logan have the last word (you may need to turn the sound up, this was about 4 weeks ago when he was 15 weeks old):

https://www.youtube.com/watch?v=Yauj8IigdJc

 

[Lottie86]

Wow he's so advanced!! You must be so so proud of him

 

[Caezzybe]

Wow he's so advanced!! You must be so so proud of him

Yes I am awfully proud of him, he is doing so much better than I ever imagined

 

[faun]

Logan is gorgeous and so clever saying thank you already! I work with adults with downs syndrome and they never fail to bring happiness and laughter to my day i just hope i bring them as much pleasure as they do me.

 

[lottie77]

hello I just watched the clip of your beautiful boy Logan and he is sooooo adorable and its really encouraging to me to watch all his movements and listen to him babbling and also interacting with his daddy
It is also amazing at how he is picking up the Makaton signing no wonder you are so proud he is doing great
my baby has down syndrome but is only 6 weeks old and she wont look at us when we speak or try to interract with her infact she makes a point of looking away so im hoping that will come soon and after seeing Logan doing it im filled with a bit more hope

 

[Nathyrra]

Logan is absolutely precious, I think him and my son would get on like a house on fire babbling to eachother lol!

Lottie77- At 6 weeks my son wouldn't do eye contact either, I was so worried about it that I googled and googled (bad idea!) Turns out he was absolutely fine, and by the time he was 10 weeks old, he was staring at people, following them around the room with his eyes, and smiling. So she's being very normal for her age! It will melt your heart when it does come though. x

 

[capel]

About early interventions, the best we had was a group physio session. It worked more or less like a nursery rhymes session at a library but with the movements to the songs being designed by the physio team. Then we went to the physio pool for more exercise. All supervised by two therapist, some students and two technitians (? spelling). It was great because now I know most of the parents with special needs children at the same age of my child in my area. There was coffe and socialising before the sessions. It was great for the children because they had fun and exercised at the same time and great for the parents because we got to know other people in the same situation in our area. And the therapist would advise you what to do at home.

 

[LunaBean]

awww I love Logans video! Hes so clever!!!

 

[purplerose]

Haven't been on this thread in a while but just wanted to say this morning I was at the local supermarket when I saw a Down's teen. Who had a tag reading "Dr Frank" and a sticker underneath which said "BOSS". I smiled and said "Hello Dr Frankenfurter" to which she smiled a huge smile and said "Hello". As if she was excited to know what I was refering to.

It made my morning