Hypotonia, Hypermobility, Developmental Verbal Dyspraxia, social skills issues...

[BlueberryPancake]

Oh dear. I've just been to GP because DS (5 years old) is still struggling to keep up with other children in terms of physical development. I knew he has developmental verbal dyspraxia, and is well looked after by school, Nuffield hospital and local speech therapy team, but now GP (a really good senior GP) strongly suspects that he has hypotonia as well as hypermobility...

Everytime we've had appointments with doctors, peds, speech therapists, etc there are always questions about the birth. Now, I had a c sec, but not because baby was in distress or heart problems, but because of me. However, during a discussion this morning with GP, he probed me a bit further and I remembered one thing that happened and it just made me think a lot about how the birth went.

I was supposed to have scheduled c section (I had a c sec with first child, and overdue with DS2 so I opted for elective) but when I got in hospital I was in labour. So I opted to carry on with labour, and one of the doctors kept on asking me if I wanted the amniotic sac to be broke. I said no twice, but she kept on asking me and in the end I gave in. I was about 4 or 5 cm, still in a communal room, on monitors. When she pocked the sac open, the baby's heart beat was lost. In a matter of seconds, I had a doctor trying to fit a canula in my hand, and a number of doctors/nurses around me pushing me to the c section room for an emergency operation - it was all a bit panic for everyone, not helping me shouting at the doctor that it was all her fault.

Anyway, someone showed up with a portable ultrasound machine and they finally found a heart beat. The 'conclusion' was that the baby's heart beat was lost because he suddenly descended and changed position, and his heart beat remained stable for the rest of labour, and after 12 hours I had a c sec anyway because I pushed for 2 hours and he never descended in the birth canal.

I hope you are still reading!!! After my appointment this morning, I had one of those 'oh shit' moment. Could this be that DS's heart stopped beating for a while? Could it be what is causing his problems?

He has reached milestones late (sitting up, eating, walking...) and has a severe speech delay (disorder), and has low muscle tone generally. Not a major dissability, but nevertheless, some important issues.

I don't know if I'm asking a question, or just thinking outloud, or simply I want to take this off my chest. I have now called the local Patient Advice Liaison Service to see if I could have access to the birth notes. Will this help? Has any of you gone through that process?

Thanks for comments, thoughts, reassurance, anything!

BPxx

Hi blueberrypancake ....It was a good post and i read it to the end !!!!.

My ds3 (7.9 yrs) has all of your ds's "problems" for want of a better word ,but i doubt if it was because his heart stopped or didn't stop so don't beat yourself up about it .

Having said that my ds did need oxygen after his water birth so i do sometimes think maybe I didn't do it right !

But I have H/M in my family so I think one of my ds's was due to get it !

Even though he has reached his mile stones late he has reached them so that is a positive and now you need to work on what help he needs. Thinking back of the birth is not going to help you now ,though i agree sometimes it is nice to know the whys.

Has your GP refered him to physio ?

I am interested in the verbal dyspraxia bit though ...we have SALT but to be honest cant remember if any proper dx was given fo it .....to many things were happening at the same time !!!!

There now mine is nearly as long as yours ...hope you are still reading !!!!!!!

Come back to me and tell me about verbal dxpraxia !!

I will, after school pick up! Thanks for reading the post and replying!

www.dyspraxiafoundation.org.uk/downloads/Developmental_Verbal_Dyspraxia.pdf

I won't try to explain dvd, it's quite specific but the document above explains it very well. My son was seen by specialists at the Nuffield hospital in London, mostly because he was making very, very little and slow progress on traditional speech therapy methods. Hope this helps!

Correct me if I am wrong but I don't think there is any way that hypermobility and hypotonia can be caused by a stopping of the heart during birth: they are going to be due to the structure of the connective tissue which will have been formed long before birth; most likely the cause will be genetic. The speech delay is, I suppose, a possibility (don't know anything about it)- but then again it is often found with hypotonia.

Ds' heartbeat did go down during labour (so I had an emcs) and he is hypermobile but then I know this is genetic because his sister is too and there were never any problems when she was born.

Hypotonia doesn't have to be linked in any way to the structure of your connective tissue - it can be caused by a central nervous system disorder. It is commonly found alongside hypermobility, because if your muscles don't react quickly to being stretched then they will allow joints, ligaments and tendons to be overstretched more easily than normal muscles will before they react (ie low muscle tone is a sort of slow reaction time of the muscles - not the same thing as muscle weakness and not necessarily caused by overly stretchy connective tissue within the body, although often found alongside muscle weakness and/or loose connective tissue or hypermobility). There are literally thousands of possible causes of hypotonia, some with diagnosable causes, but often no obvious cause is ever found. Hypotonia is quite a common finding in children with aspergers, autism and dyspraxia and when it is, it is generally assumed to be a sign of atypical brain development (ie an oddity of the central nervous system and therefore linked to the dyspraxia or autism and thus part of that diagnosis, rather than a new and unexpected finding). Obvious brain damage is very seldom found, so it is more likely an oddity of development than caused by a single event (and if there is brain damage, then it is viewed as a type of cerebral palsy, but cerebral palsy more often causes fluctuating muscle tone, rather than consistenly stable low tone, even hypotonic cerebral palsy).....

In other words, the chances of all your ds's problems being caused by a possible stopping of the heartbeat, rather than being part of his make-up from before he was born are relatively low and worrying about whether that is the cause of his dyspraxia and hypotonia is something you are unlikely ever to be able to answer and will just be a cause of you looking back and wondering what might have been, rather than looking at the situation in the present and looking to the future. I've been there and done that myself and have been a much happier person since I stopped trying to imagine a single event causing all my ds1's issues and wondering how it might have been if that event hadn't happened.

Thanks Biueberry... I will check that later when the "babies" have gone to bed !

cory ...I think you are right H/M and H/T are more genetic than problems at birth ...but you always think what if .. ?

rabbitstew....so glad to have you on board wonderful information...you are so helpful....I think I definitly need to go down the dyspraxic root now on what you have said .BTW x posted earlier

WOW, thanks rabbitstew that is a brilliant reply. The issue is that DS's symptoms are quite mild. He has (probably) hypotonia. And DVD, and he has a delay in development of social skills. He took ages to respond to his name, turn his head to look at things around him, is often now in a world of his own. He is a loner at school, although he is very very happy to play with other children that he knows when at home, including his big brother. But from about 3, there were concerned raised by me and his little pre-school that he was not interacting well with other adults and children. Anyway, we'll have to see what comes out of next appointment, with pediatrician and hope that we will get more answers. Thanks!

realised after I typed that I was wrong about hypotonia and that can be caused by all sorts of things

hypermobility is different though

Dd2 has low tone and hypermobility because of her cp (she also used the nuffield verbal dyspraxia programme for speech) and had a lot of issues with sensory stuff (touch and sound, but also lights). Her cp was caused by hypoxia during birth (when she was born her hr was 28bpm) but there was a period of 45 minutes where no trace was available for the fhr.

So, theoretically, yes, it is possible, but there are likely to be markers evident on brain MRI for birth hypoxia. And most instances where hypoxia occurs for a matter of minutes (ie pinched cord etc) the baby recovers with no ill effects. Sudden change of position can cause the trace to be lost or difficult to find, but it doesn't mean that the heart stopped. In fact, it is extremely unlikely that the heart stopped, and then spontaneously restarted some time later, with no abnormalities evident in trace and the labour allowed to continue as normal. With dd2 when they eventually located the fhr, it was all systems go to get the baby out as fast as possible because she was in severe danger.

I had a debrief with consultant, and do understand how you replay stuff over and over to get clues. I think it is unlikely that this has anything to do with current concerns, but I understand that you are searching for answers. Sometimes there just aren't any.

What you are saying is making a lot of sense, madwoman.

Yesterday was a bit of a shock because it was the first time that someone ever mentioned hypotonia to us. DS had a string of (some minor) problems since he was born - to name a few, problems breastfeeding, late sitting up, late crawling (but not too late) and late-ish walking, didn't turn when he was called, was very much 'in his own little world' as a baby, very quiet, problems weaning (couldn't eat some textures), problems with socialising (taking absolutely no account of adult and other children around); and very late talking. He still walks with his upper legs and knees and feet pointing inwards, he gets tired very easily, he prefers to lie down instead of sitting up to play, his face is droopy (mouth open with tongue sticking out a bit) and half-shut eyes. He struggles a bit with fine motor skills but he is so determined to draw and write that he does it anyway. He is better with social relationship now at 5 years old but still behind by about a year I think.

The Nuffield diagnosed him with Developmental Verbal Dyspraxia, with some physical issues related to dyspraxia (except that he has very good balance). Yesterday the GP came up with hypotonia and hypermobility.

We will have another appointment with pediatrician soon I hope and I will ask a lot of questions about the possibility that he may have very mild cp, which would explain most of his physical development issues.

Blue, I would also ask if they have completely ruled out all possible genetic causes (in terms of deletions or whatever rather than looking for an inherited condition such as EDS). I think it would be sensible to rule out. Has he ever had a brain MRI? A lot of people don't want one, as it usually means GA for littlies, and won't change support package, but some people prefer to know as much as possible wrt causation. Cp is tricksy, as you can't always 'see' much on an MRI and sometimes dx is just by clinical presentation, but sometimes a brain MRI gives a totally unexpected clue. Something to think about, anyway.

Yes madwoman, very good suggestions. I don't know what my opinion is with regards to MRI scan, I don't know enough about it to have an opinion. I will research and ask for sure. Thanks!

Hi, have a look at the EDS thread and you will see that a lot of the issues there relate to what you are looking at. It may be helpful - its a huge thread but our children have many co-morbid conditions/syndromes and the jury is mostly still out on causes/reasons etc.
We have had genetics and years of diagnosis and still they tell us its a 'many people have one of these conditions, some have a few more and only few have many - its not related, just unfortunate' - even if we don't all believe this to be true!!