Botox Injections - In Babies

jaattrill

Hi

Our daughter is beginning a possible series of botox injections into her legs to try and help improve muscle tone and reduce the curvature/rigidity of her legs? She has diplegic spastic CP and is only a few weeks old.

Has anyone experience of this treatment?

Thanks

J and R

sarahpratten

Hi,
I am no expert and have not experienced botox, but I wouldn't want to inject toxins into my baby except as a last resort. It is important to start therapy young but I would probably opt for something less invasive. I would also want to know if many other very young babies have had botox and with what effects (Obviously you are asking that here, but what do the botox people say?)
I would recommend looking at less invasive therapies like The Scotson Technique and hyperbaric oxygen - both of which are offered by Advance (www.advancecentres.com).
As I said, I am not an expert and if her spacticity is severe and causing her pain or other problems it may be worthwhile, but do consider the other options too.
Best wishes,
Sarah

jaattrill

Hi Sarah
Thanks for your thoughts. I know what you mean re toxins. Our daughter's legs have been rigid for weeks and physio alone is not improving her muscle tone so we have decided to try the botox in one of her legs alongside increased physio and positioning. One of the registrars at our hospital took part in research in this area when the procedure was first introduced in the mid 1990's and continues to have an interest in this area. We have quizzed him rigourously. Will let you know if the stress of intervention has been worth it in a few weeks. Thanks for the advice re Scotson Technique. So much to get your head around.

Take care

Jacqui and Rob

sarahpratten

I agree with mafala that it is well worth seeing a cranial osteopath - it can make such a difference - Sorry I didn't mention this in my earlier post.

Best wishes,
Sarah

jennyh

There may indeed be a lawsuit in the US re Botox and CP but I feel a bit more info would have been useful and perhaps a little less alarming: many, many kids have had botox (babies I do not know about) with very successful outcomes.
We have not gone down that route, mainly cos my son has athetoid CP and so not nearly so many problems with tight muscles - but it is true to say that how he was as a baby (lots of arching and very tight thigh muscles in particular that seemed to interfere with sleep) is not quite how he is now at 12.
Personally I would not consider anything like Botox on a baby or very young child unless there were exceptional circumstances, mainly becuase as others have said, quite a lot of significant developmental changes occur in the first few months - and it can be very hard to ascertain the severity of CP in the early months or even years...
Similarly having read, on a number of occasions, about the effectiveness of G therapy (mainly by the above poster it must be said; I assume that there are very few kids in the UK who have actually done it?) I have looked at the web site and can't really find enough evidence to convince me to embark on it.....
Not sure what I am actually saying here excpet - try not to rush into anything before exploring all the options you can - however I know how hard it can be in those early months whan any straw seems worth grasping.
Good luck

mafala

Hi there,

Just wondering if the registrar is neurology or orthopaedics? Reason for asking is that a neurologist would most likely wait with botox as your baby's brain injury is fairly recent and it takes a while for muscle tone to settle. It takes weeks for the brain swelling to subside and you might find that along with it the muscle tone will relax. There are also muscle relaxant drugs like baclofen that they can give. It has a more general effect on the whole body. My son was stiff as a board for the first few months after he suffered his HIE and he gradually relaxed. I did take him to the Osteopathic Centre for Children straight after he came out of hospital, not knowing what to expect. Whatever they did was like turning off a switch because he relaxed immediately after that first treatment. It was quite extraordinary.

Val

Hi there is currently a lawsuit in the USA against the manufacturers of botox with regard to cerebral palsy. If you Google it I think you can find out further information.
The specialkids in the UK website has also had a discussion on this very topic during the last week. I myself have chosen a natural therapy G-Therapy for my own daughter who has CP spastic quadriplegia. Toxicology tests have been done on G-Therapy in both the UK and USA. The G-Therapy the website is:
http://www.g-therapy.org
Dr. Oswal is treating patients from all over the world and of all ages and with varied neurological conditions, including UK, Canada, USA, Germany, Australia and many other countries. There is currently a discussion about a clinical trial of G-Therapy in Asia on the group:
http://health.groups.yahoo.com/group/g-therapy/ message 3563
Videos of patients on G-Therapy are on http://www.g-therapy.org site There will be further videos later and more from the western world.
There is so much research to look into if you have a child with CP, all the very best of luck with which ever route you choose.

Kind regards,
Val mother of CP spastic quadriplegic daughter who has shown both cognitive and physical changes on G-Therapy.

[quote name='jaattrill' date='Feb 28 2010, 12:29 AM' post='34477']
Hi

Our daughter is beginning a possible series of botox injections into her legs to try and help improve muscle tone and reduce the curvature/rigidity of her legs? She has diplegic spastic CP and is only a few weeks old.

Has anyone experience of this treatment?

Thanks

J and R
[/quote]

umbro

Hello,

I would not consider Botox on my child who is 3 - and most certainly not on a baby.

Please look into hyperbaric oxygen therapy. It will help far more, especially if done early, than Botox. There is a centre in Walthamstow, nearly London that offers each session for

Val

Jenny Hulet Smith a professional in the USA, has done an article in Advance for Occupational Therapy magazine about his view of G-Therapy. His own daughter whose mother is a physical therapist has had changes on G-Therapy. He has also written his clinical impressions on the yahoo group. Parents have a lot of research to do. Hulet Smith has put more info on his site
http://huletsmith.com
There was recently an article in the Financial Times how this country is falling behind with clinical trials.
If parents don't speak up nothing changes.

Haylie

Hi my daughter had botox when she was 1 yrs old i felt it did help at the time as her legs had been very tight and the hip/ leg bones had come out of place she only had it one time and it lasted for about 6months then she had to have her tendants cut then major surgery to fix them back in place..

jaattrill

Thanks for your reply. My daughter is responding well to Baclofen.. so far :-)

Andrea0607

really wish i hadn't read all your posts! now i'm completely confused!
my 3 year old is due to have Botox under general anaesthetic on Friday!!! (which i am already stressing about!)he has hemiplegic cp which was finally diagnosed in Nov 2009, after our local hospital originally told us 18 months earlier that he had flat feet and there was nothing to worry about!!!

he saw a cranial oesteopath when he was a tiny baby and we've been down the physio route and he sleeps in a splint.

does anyone have any positives to say regarding Botox?

Thank you

Andrea (a confused and stressed mum!)

bloggergirl

Hi
Well we are waiting for our 5th or may be 6th (lost track) lot of Botox for my 12 yr old. For us it has been helpful. My son is not keen on the GA bit - always makes him very sick for 12 hrs.
Hope that helps. Everything we do for our children has pro's and con's and all we can do as parents is take what we feel is the best course of action.
Louise

LynneV

Hi Andrea,
My daughter has just had her umpteenth Botox treatment, started at about 3yrs old, is now 10 and has been treated about every 6 months.
She has it under GA as she has about 20 injections each time, including her neck.
The only side effects we've experienced is a slight rash occuring the once - probably due to the alcohol swab used to clean the area, and the fact that it was a hot day so she was a bit sweaty!
Or if she hadn't slept well the night before she's had a LONG sleep after the GA.


As Louise writes, there are a lot of factors, both +ve and -ve to be taken into consideration.
Go with your gut feeling.
Botox has definitely helped to keep our daughter as supple as possible.
E.g. I suspect that without the treatment she'd have more problems with her hips dislocating; it's definitely helped her eating/ swallowing by not having her head spasming to the side.


I know a few kids who walked on tip toe pre-Botox, and after treatment were able to keep their heel down and stretch their lower leg muscles so that they "stretched" as the bones grew longer and kept the ability to walk.

It's never nice going in for a GA. But if possible, take a deep breath and try and be as positive as possible.
If your neuro/ ortho allows parents into the treatment room/OR , it's very interesting to feel the muscles when the child is under, so that you can have a feel of how stiff they are and how much of the "stiffness" when they're awake is caused by the nerve impulses tensing them.

BJMing

would like to ask Jacqui and Rob who diagnosed their daughter with CPSD at such a young age. Was it following a brain MRI?

I ask that because my elder son has CPSD and when my daughter was 8 weeks old, I was convinced that she also had CP because her tone was high and and she rarely moved. She didn't lift up her head till she was 10 weeks old, had ankle clonus, brisk reflexes and kept fisting her hands. My son did all those things when he was a baby. I was sure she had CP and even convinced our pediatrician, two neurologists, a developmental specialist, my son's PT and a Chinese doctor. They ran many tests and even suggested a brain MRI for her. I spent the first months of her life feeling miserable. Now she's 9 months and is crawling and cruising everywhere. She shows absolutely no signs of CP.

My point is that ALL babies are born with high muscle tone. Our current pediatrician says that all neonates are essentially like brain-injured children because their brains are not yet fully developed.

I'm sure as parents, you want the best for your child, and I don't doubt that you've done all the due diligence to make sure whatever you'r doing is for the benefit of your child. I urge you to get a second opinion from another doctor concerning the treatment and the diagnosis of your baby. I hope everything turns out well.

jaattrill

Hi
Thanks for your post. Our daughter was given an approx diagnosis from as early as two weeks old when she didn't meet her developmental markers. She stopped breathing about 40 mins after birth and needed resusitation. She suffered a hypoxia (lack of oxygen to the brain, both sides) and over her initial weeks her muscle tone became very rigid n her legs, her hands remained as fists and she had more general problems with muscle control including her eyes and needed oxygen to breathe amongst other problems. She also has problems swallowing and only has a partial gag meaning she requires suction of her oral and nasal secretions 24/7.

We did push for an MRI at approx 5/6 weeks old which showed abnomalities in the primary motor cortex and more importantly the basal ganglia, the latter are important for helping to regulate muscle control amongst other functions. The MRI was pretty damning for us and very difficult to deal with as it took away our hope for a less serious diagnosis. We would dearly love our little girl to be crawling at 9 or even 19 months but have been told this is very unlikely. We continue with physio and positioning to try and help her with her stiffness but at this early point we are just grateful to still have her with us given two extended visits to intensive care. We eventually got her home at 12 weeks old only a few days ago which is daunting and have at last a little more time to start looking into treatments and therapies for her.

Glad to hear that your daughter is moving around by herself.

Take care

J and R

mafala

I hope that they told you that a bad MRI does not always reflect how affected your child will be. Some children who are severely affected have completely normal MRI's while some children who show severe brain injury show no visible problems.

I know from experience that the first few months after a hypoxic episode are frightening and you think your child will never recover. My son had to be resuscitated at 6 months old and was literally dead for 13 minutes. He was stiff as an ironing board, was blind and he cried day and night. We could hardly get any milk down him and he was tube fed for a couple of months. His little hands were in fists and I couldn't even open them up to clean them. He is 7 now and would you believe that he has started to play the piano?. He is never going to be a virtuoso, because his dexterity is not that good, but he is loving learning to play. I never thought in those early days that I would enjoy seeing my little boy grow up to be happy, have friends and go to school. He gets around in a powered wheelchair and needs help with most things. He is one of the brightest in his class.

Your daughter will recover. She will likely be disabled to a degree, but that's not the end of the world for neither you or her. It hurts like hell at first because you don't want this for your child, but life will be good for her one day. Right at the moment she probably has the worst headache in the world due to her brain swelling. Her body is in total shock from the hypoxia. I don't like to sound evangelical about osteopathy, but I will say that osteopathic treatment was the turning point for my son. It was recommended to me by a paediatric physiotherapist. It was the best advice because my son improved massively from the shock and years later I became an osteopath myself.

I wish you all the strength in the world to get through this difficult patch.

xm

jaattrill

New user name. Thanks for taking the trouble to reply. Our daughter is still struggling but we are beginning to see signs that she is trying. to respond to us and has started holding eye contact with us which is a start. We still only have 2-3 hours sleep a night and are desparately attempting to get some respite care in place ASAP. She is now 18 weeks old and although the 'normal' development book went out the window shortly after diagnosis she continues to surprise us and does things in her own way and time.  Glad that your boy is having a full life and enjoys music.

take care

J and R

renacahill

Hello j&r

My DGS needed full resuscitation at birth following placental abruption. He went on to fit big time and it was all so stressful as you know. His MRI at 2 1/2 weeks showed patchy damage to the basal ganglia. The disability doctor diagnosed him with quad spastic cp, but the neurologist said the only spasticity he detected when testing reflexes was  in his legs and mild, and advised botox in a few months time when he expects him to walk! (think bit optomistic myself, but he is doing brilliantly) Elli is 19 months old, can sit very wobbly, has poor balance. Trunk and neck low tone but can hold his head up well unless tired. Hand/eye co ordination isn't brilliant as shoulders and arms weak, but legs look good with a very good crawling action.   

To get back to your query regarding botox, we know of children who have it regularly and do very well. Never heard of such a young baby tho.  The point I'm slowly making is that Elli wasn't expected to make it out of the hospital, his back and neck control were (apparently) brilliant when he came home at 3 weeks. But the physio said it was spasticity that  wore off and he became quite low tone.  The tightness in his left arm has worn off as he has used it more - his right one is loosening up and not fisting unless he is concentrating intently, The arching back which precedes each movement is then relaxed out of as he relaxes and bends forward, and our physio assures us he will grow out of this baby reflex.  If he himself is totally relaxed - watching Night Garden - his arms and legs can be moved in all directions they are so loose.  Basal ganglia damage does not usually cause spasticity (tightness), but is more balance and coordination and muscle tone.

Since the diagnosis I have read and researched extensively, my daughter and I are both nurses and her husband an OT, and we have had masses of input via the NHS, so Elli landed in the right house!   We have seen massive improvements in Elli and can see that, although he will take much longer, he will hopefully be able to lead a fairly normal life with some restrictions.  His physical movements seem to be evolving all the time, so although your baby is tight now it may change with time.  Hope she does well with the botox if it allows better stretching exercises then it should be good for her.

The case in america with a child suffering from botox usage I think had to do with a severely disabled girl receiving multiple simultaneous doses?. Though there may be others.