Hypotonia/Birth marks a sign of neurological problem - any experiences??

[JoandMax]

Posted in Health too x

Hi all,

I posted a few weeks ago about concern over my 9 week old DS. He had a bad UTI at 6 weeks, problems feeding and very floppy.

Since then he has been put on ranitadine, domperidone and onto Nutramigen milk but is still a nightmare to feed. He will either faff and smile and not be interested at all or will take a few mouthfuls and scream and scream. We are currently only getting around 60 or 70 ml into him 5/6 times in every 24 hours and when weighed yesterday has lost weight after not gaining for last 3 weeks.

We saw consultant yesterday who is referring us to a neurologist as he is still very floppy (although I have noticed a change and he is attempting to hold his head up etc) and also has 3 marks on his right hand side - I just thought these were birth marks but apparently they can indicate a neurological problem. We are also seeing a specialist in feeding problems but not sure when this will be.

To say we are worried is an understatement!! I feel everyday is an uphill battle to get him to feed, I rarely go out as feeding is so stressful so hate doing it in public. I'm worrying and imagining all sorts and not enjoying DS at all - believe me I love him hugely but I feel a neurotic mess. If he sleeps too much I worry, too little I worry. I wake up numerous times a night to check him and then just lie there watching him incase something happens. I'm so tired I am not being a good mother to my DS1, I don't have the energy to play with him how I should be doing. I feel like I'm failing both my beautiful boys and our lives are in limbo whilst we wait on hospital visits and tests. I'm in tears at some point everyday and its just not fair on my children, I want to be strong and positive but its so hard when I'm spending so many hours a day feeding DS2 and dealing with him crying in pain.

My DH is great and does loads but he works long hours and is away 2/3 nights a week.

I don't really know what I expect in replies, I just needed a rant I think. But if anyone has experienced this or has any ideas please let me know xx

im sorry your feeling like this and im not much help. Do you have much supportother than dh?
waiting is hoorible and not nice at all. do you have any idea of how long you could be waiting? Have they told you what they will do if he continues to lose weight?
Is your HV any good?

hope your ok and get the answers soon x

Are you getting any support at all? Having a small baby and an older child is hard enough without all the worry you're having to deal with.

It goes without saying, but you do need to look after you. I don't know if you have a history of PND, but I think you need to talk to your health visitor or GP about how you're feeling. Worrying about our children to the point of shedding tears and losing some sleep in this situation isn't unusual, but it sounds like you're beyond that.

And - rant away. That's what this board is for [tea]

ds2 was tested for 1 of the neuro conditions because he has numerous birthmarks & they didn't wnat to miss somrthing by attributing all his probs to his prematurity.
In ds2's case he does not have the condition they were testing for (although they do still keep looking at his b/marks & I don't think his pae dis convinced that there isn't an underlying condition) but there is a family history of it.

The condition ds2 was tested for has various forms and like many conditions varies to barely noticeable to more severly effected so even if you do start googling please keep that in mind

It is impossible not to worry but try to focus on getting the best support for his feeding.

Thanks all, I don't think I have any PND, just things have got on top of me and I need a break - DH was away 6 days last week and DS1 teething molars so sleep was limited!! He has end of week off so am sure decent sleep will help no end.

My parents and sister are great but all live 2+ hours away and work so nobody locally.

Riven - please tell me your thoughts, I would value your experience.

DS2 currently beaming at me and cooing, apart from feeding he's a happy little boy! He is being reviewed in 2 weeks re weight gain and if still loosing they want to do endoscope, more bloods, barium etc

Hello, I am not going to tell you not to worry, because we are mums and thats what we do.
What I am going to tell you though, is that the best thing you can right now is put all your energy in stimulating your baby.
Lots of massage, get a physio as soon as possible, doctors in the UK will tell you that he is too young to benefit from stimulation and therapy, but that is just not true.
Good luck, it will be fine!!!

Hi, My little boy is 10 months old now and was very floppy when he was born. He has been having a bit of physio and is now doing really well. When he was a newborn we were so worried. Slowly but surely he started to make progress, first of all it was holding his head up, then sitting and now we're trying to help him to start crawling. Every time he makes progress we're so proud of him. He might take a bit longer but each time he seems to get there in the end.

After he was born I was just consumed by worry and endlessly searched the internet, desparatly trying to find the possible cause of his floppyness. It was awful, as he got older he started to make progress, smiling and taking an interest in his toys etc I started to worry less.

He is reviewed by a consultant every few months, they've said its benign congenital hypotonia. He also has metopic synostosis, which means that one of his sutures fused prematurely.

Don't feel bad about the way you're feeling your a mum with a new baby. I remember feeling exactly the same way.

x

DD (no overall diagnosis, but thought to have some kind of genetic issue) was very floppy, also had UTIs and hard to feed in her first six months. She was diagnosed with reflux, but none of the meds worked for her--she was too floppy to breastfeed and so I had to express, which was a nightmare, and it was a big relief when i gave up after 6 months, and she ended up on SMA energy plus (can't remember the exact name)

I really empathise with all the guilt about your other child and the constant waiting and worrying re tests. Is there someone you can talk to when DH isn't around?

I remember in DD's first few weeks I got sick to death of people telling me 'it'll be alright, i'm sure she'll be fine...' whenever I tried to share my fears. So I used to feel quite isolated. The best thing was to post on here, so please do keep in touch and let us know how you are doing.

Thanks everyone, your posts have helped. I'm just sorry others have been through this too.

Had a good nights sleep last night so things always feel better after that! DS2 has not fed much today but has been happily smiling and kicking on his playmat and now fast asleep, think this heat is exhausting us all as DS1 has been napping for 2 hours and normally only has an hour.

I've decided to just try and enjoy my lovely boy, he's so smiley and gorgeous and I don't want this time to pass in a haze of stress and upset - yes, I'm worried but things will be resolved and if he's happy then the best thing I can do for him day to day is to be happy too. And if I have bad days will rant on here!

Will let you all know how things progress and thank you x

Hi there JoandMax and the other posters.

I saw this post and my heart jumped as I hoped I may get some answers too.

My DD2 was born with multiple birth marks and has very slight hypermobility. She is now 2years and 9 months and is the most amazing child. She is bright, chatty and very funny. However she still isn't walking which is really frustrating. But it is only frustrating for me and my DH. She still doesn't really realise that it's that unusual! And it is the only problem she has at the moment.It is likely to be a genetic disorder and we are just about to have genetic tests. So hopefully we will have a diagnosis soon. Riven I am really interested in the two conditions you mention as we haven't been given any potential names yet.

Jo please do take every day at a time and enjoy your son. We try not to get hung up with Madeleine. She is at the same pre school as her sister and thoroughly enjoys life and interacts well with other children.

If anyone can offer me any advice etc on what she may have
I owuld appreciate it.

Thanks

Sx

DD had hypotonia as a baby and has hypermobility now and now I come to think of it she has a birth mark on her vagina lip. She also had plagiocephaly. Not sure if I can help though.

madlet, I think there are a number of syndromes that come with skin markings. There are different categories of skin markings, also characterised by whether they have always been the same, have changed over time and whether they were at any point lessions. Dd3 for example has hypopigmented streaks and whorls that follow the lines of blaschko.

I know it's much easier said than done and natural curiosity is very strong but there is a good chance that googling will really scare you, it certainly did me. Bear in mind that if you do google you will find lots of very medicalised articles and of course doctors are interested in the most serious cases, the children that are affected to a smaller degree don't get a mention. Everything comes in degrees iyswim

as bigcar says, there are quite a few. sometimes the marks are referred to as 'cafe au lait' spots, which may help if you do take the drastic action of consulting dr google.

fwiw, i worked as an LSA with a teen with nf who was taking his gcses (and have a daughter with low tone due to cp, have lots ot say on feeding problems...) - way too many potential causes to second-guess, and still the possibility that he's just taking time to recover from the uti.

do you have the date for your next appointment?

Hi there
Yes we were at Alder Hey last week to see the Motor nuerologist and we are now waiting for an MRI scan, EMG tests and micro array testing. We are trying every avenue but I guess I'd just like to give it a name!

We have also made contact with the Brainwaves charity - has anyone worked with these?

Thanks

Sxx

Hi all,

Thanks for everyones posts. Madlet - your little girl sounds lovely, and your advice to just enjoy my little boy is very true, he has no idea anything could be wrong and has been so happy this weekend. I hope all your dd's scans give some more information and you get to find out whats wrong - I think the not knowing is so hard. I feel if I just knew what was swrong then we could deal with it and accept it rather than the mind wandering!!

Oscar is being weighed on Wednesday so have everything crossed he has gained some, if he has then he will just continue to be monitored but if no gain will go in for further tests. I feel he has really improved the last few weeks though, he is having moments where he's holding his head up for a good 30 seconds (bit wobbly but still up!!) and is really kicking his legs around. I also found him rolled onto his side in his cot last night.

Will keep you all updated x

Well Oscar was weighed today and hasn't gained anything but equally hasn't lost anything either. He nows weighs the same as he did when he was 9 weeks and is now 15 weeks..

I am a bit disappointed as was really hoping he would have gained a few ounces. We've been given another 2 weeks to see if he gains anything (although unlikely unless we have a miraculous recovery overnight!!) and are back at the hospital on the 13th July - DS1s 2nd birthday but nevermind!

Had a good chat with the HV though, she was very supportive and helpful.

Anyway off to do the chaos of bathing x

hi
I've been following your posts. It must be such a scary time for you. Our situation is slightly different, in that we know what the diagnosis is. Obviously we had the period before when we didn't know. It's really hard, I sympathise/empathise. My youngest has been diagnosed with Tuberous Sclerosis. He's just over 5 months old, but seems to be doing okay on meds currently (fingers crossed, etc.).

It's great that Oscar has maintained his weight. It's hard but try and roll with the positives.

It's hard work with a new baby and toddler. My two boys are about two years apart. Sleep deprivation contributes massively to my moods and how I deal with things (and people), also talking to people helps a lot. It sounds like you have a great support system.

Take care

Hello
I have been reading this thread and remembering when my first child was born. He had dropped more than 2 centiles by 15 weeks. He was floppy, wasn't interested in feeding, didn't walk till 19 months and so it goes on. It wasn't until he was over a year old that I actually really noticed the marks he had on his body - and when we went to the gp that started a couple of years of genetic testing.

Anyway, I just wanted to tell you that he is now a thriving, fantastic child who is a world away from when he was a baby. Also that imagination is a powerful thing - nothing is as bad as the unknown.I literally almost went mad with worry at times when he was a baby. Your post on the 23rd is spot on - so re-read it when you are having a bad moment.

Your baby ds sounds ace and a very happy little baby so enjoy the good times and post here when it feels too much.

I know a little about brainwave as an ex local but Riven has attended with ehr DD if you can find her on here.

All mine had failure to thrive as babies and severe weight loss; all but one has cafe au lait marks; only 2 have a signifcant dx and special requirements (I have 4)

So it could work out

And NF varies so hugely

So just that, and some hugs.

Thank you everyone, it always makes me feel better when I get some kindness from strangers, there are some lovely peeople on here! It does help to get all my thoughts out.

FnD - that's very positive to hear about your DS, I'm so pleased all is ok.

simplysurreal - I really hope your DS continues to do well and am sorry you and he are having to go through thus.

It is good he maintained his weight, they also measured his length and head circumference which are both growing well so at least he's growing, albeit getting a bit slimmer! He was a big baby, 10lb 15oz, so had some extra padding to tide him over!

10lb 15oz Jeepers Joand Max. Please stay as positive as possible. I know it's difficult but fingers crossed he'll have a growth spurt in the next two weeks.

SanctiMoanyArse I'll try and get in touch with Riven about brainwaves - thanks

Sx

Just thought i would update this postm it's really helpful to write it all down!

Oscar has had a good week, not feeding well but very smiley and happy. He's been making lots of noises and gurgling, very cute. We had his older brothers 2nd birthday party and he loved watching all the toddlers.

Off to see the paed again tomorrow so slightly nervous he won't have put on any weight..... He's getting longer but looking a bit skinny now, after being a chubber of a newborn!

But best of all, he rolled over from back to front this morning, I was so proud I cried!! Still hasn't got great head control and doesn't do much whilst on his tummy but its a great sign he's getting stronger.

Hope everyone is well and enjoying the sunshine xx

Thats great he rolled over toda it does make you feel so much better when they do something new.
Know how your feeling my dd stopped gaining weight when she went on to solids used to dread getting her weighed still do and she is 4 now. Hope ds has put on some weight when you next go x