My 19 month old boy has hypotonia

[Sonya26]

After 12 months of tests and much coming and going from hospital, we are told that our 19 month old baby has hypotonia.
To be honest the health professionals haven't been very supportive or reassuring.
He's sitting fine, no crawling or walking. We've been given a standing frame from the physio. He very alert and communicates well, but doesn't have any speech yet.
The hardest thing is not knowing what to expect in the future, so we don't know what to prepare for.
I'd love to hear about anyone elses stories/cases.
Basically I'd like to hear from some real people, rather than just hospital bods.

Hi Sonya,
What tests has he had? Has he had a brain scan?

Thanks for the reply Grace
He's had tests for muscular dystrophy and many others all of which came back negative.
We went to see a nurologist who suggested a brain scan, we were reluctant to proceed with this as it meant a general aneasthetic. Do you think a brain scan would be benefical?

hi sonya,

hope all is ok.

My ds has hypotonia, global development delay and ataxia.

We found out when he was 14 months old and i can back up the fact that the health pro's wern't that great to start with.

ds is now 3.5 and is at a special needs school full time.

he is unable to talk and has difficulty with walking as very unstable, but to try and assure you in a way, we were told that ds may never walk, but he surprised everyone and he does get around in his own way.

There are plenty of people on here with experience of hypotonia and they all give good advise.

Take care.

Butty.xxx

Sonya, my DS sounds similar to yours. We haven't any dx just GDD, but he had to have a standing frame and a lot of physio. Although he sat at 10 months he didn't even pull himself up onto furniture or move until he was 2. He started crawling at 2, walked independantely at 3 and now runs around like a lunatic, climbing onto stuff like sofas and chairs and is very stable - hardly ever falls over. He still needs both hands held to walk upstairs and down and when on very uneven surfaces and can't climb up slides and things independently but just to let you know things do change, slowly. It sounds like it will all happen for your DS - be patient and keep the physio exercises going. DS was very floppy when small. Has your DS got piedros?

Btw my DS still has no speech at nearly 4, but like yours is very communicative. Nobody has suggested he won't ever talk.

Hi Sonya, me again.
Well, my DS (19 months) has mild hypotonia. But after physio he is SO SO much better! You couldn't believe it.
I was really concerned about his general development at about 10 months (not crawling, not pulling himself up, dribling too much, etc, etc). He was sitting though, but he was not interested in toys, although he looked really alert (I think that is why nobody took me seriously to start with).
To cut a very very long story short, when he was 12 months we saw a pediatric neurologist who suggested a brain scan. And this was a revelation. It was thanks to this scan that we got a DX, I am sure that without this scan we would have never known what the real problem was and we would have probably been told he has "global development delay", which frankly to me doesn't tell you what the actual problem is.

They didn't give DS a general aneasthetic though, they gave him a drink (sorry cannot remember the name), that puts him to sleep for about 1 hour. I CAN really understand why you didn't want to go for the general aneasthetic. Could you maybe ask them is there is another alternative? (ie the drink I meantion).

Don't know if this helps you but, to help with the hypotonia I have given DS massage every day for the last 7 months, first little taps all over his body starting from below and going upwards. Then pinching him very very slightly (not painfully) all over, to stimulate the circulation. I am now giving him a massage with an electric massager every day all over the body.

The brain scan may not answer your questions, every case is different. But in my case, it was definitely worthed.

Good luck xxx let us know how you get on.

I agree with gracej about the physio. I did around 3 hours a day with DS and it made a real difference. He was discharged from physio 6 months ago but it was a big part of our day for a long time.

hello sonya, I dont have much time to post tonight but my little girl is 7 with a dx of GDD and is hypotonic. She sounded very similar to your ds at 19 months. Physio really helped.

I would just say dont look too far to the future as none of us know what it holds. Just concentrate on him and how much you love him and dont be too hard on yourself. Accept all the help the nhs will give you.

We will all be here if you need to talk

Well put Fio! Btw in answer to your other question Sonya, my DS had a CT brain scan at 9 months and an MRI at 15 months (he had to as there were other concerns at the time which were unfounded) and both came back clear. I have heard that scans don't always show up something wrong, so perhaps aren't conclusive for more subtle problems but the anaesthetic they give them is only a minute dose and they are only out for a very short time. It's a personal choice really, but in answer to my fears the paed said we had risked more statistically driving to the hospital.

Hi Sonya
My ds is 14 months and was dx with hypotonia and GDD at 8 months. He has physio and sees the OT once a month. We are currently awaiting blood test results to see if they can find a cause. He has just learnt to sit alone and is making some sounds. Reaching and grasping for objects now and eating lumpier food. Know what you mean about wanting to know what's in the future. Lots of support, advice and experience on mn. All the best hon. Will look out for you on sn threads.

Thanks to everyone who replied, I was touched and overwhelmed by your kind responses.
It just shows how each case is so different, but all positive, all the children are making progress at their own pace.
In response to Grace: re Brain Scans, another reason we've not get one is that we're not sure that a diagnosis will make any difference to his treatment. What was your childs dx and how has that effected the treatment? We've been told that our child is likely to have a genetic myopathy and that wouldn't change his current treatment.
Also the massage you're doing sounds good, who advised you about this?

Hello Sonya and welcome. My DD is much older (7) but has hypotonia and GDD as part of her syndrome/condition. However, I well remember how overwhelming it all was at 19 months and how little we knew ........wish Mumsnet had been around for me then.

I'd second Ruby's comments on rebound therapy plus recommend hydrotherapy as it really helped here. I found it takes a while for the health professionals to get their act together but we now have a great team and excellent support from school.

Look forward to 'chatting' to you.

my dd has cerebral palsy and we did have a brain scan but it was mainly to see if it was something genetic

me and dh also had brain scans

it was because we wanted to try for another baby so we wanted to know what the risks were (turned out it was not genetic)

tbh it was a bit stressful at the time but in retrospect I'm glad we went ahead and got the diagnosis since it is better to know as much about your child's condition as possible

Hi Sonya,
Sorry to have taken to long to reply.
Re brain scans: I guess our situations are very different. In my case, DS was being seen by two specialists. One skin specialist thought that DS's problem could be tuberous sclerosis because of a depigmentation mark he has. BUT she didn't offer a brain scan, all she said is to come back in six months to see progress.
The other doctor (a developmental pediatrician) told me that yes he is delayed, sent me many blood tests, and said to come back in 5 months to see progress, she didn't offer a brain scan either.
I went to my home country to get another opinion and that is where I saw the neurologist who suggested the brain scan.
So ultimately, the brain scan clarified that DS's problem was not tuberous sclerosis, and what they found is that he has a brain atrophee caused most likely by lack of oxygen at some point.

In short, if I wouldn't have had the brain scan I would have waited for who knows how many months to have blood tests that would not have rendered any answers.

Your case is different because it appears that the doctors have some idea of what the DX might be, but I think they are not sure, right?. Whether or not to have the scan is a very personal decision, but I do agree with cappuccino, the more you know about your child's condition the better.

Re the massage: The physio is who showed me how to give DS his massage (but she is not in the UK). The other people I visited where BIBIC (www.bibic.org.uk), they suggested the massage with the electric massager.

Let me know if I can help with any other info. I know how hard it is at times not knowing what to expect in the future, but what I have learned in these months I have been giving DS his therapy, is that the time and effort you put into their recovery is really well worthed. Children like ours do learn, they do improve, just simply don't give up.
(BTW is the physio teaching your DS to crawl?)
Sorry for such a long post!!!
Take care.