Prem Baby, Possible CP. Botox Help/Advice Needed!

[chinchi]

My DS was born at 29+5 and at birth developed a cyst on the right hand side of his brain due to being starved of oxygen during delivery.

We were told that only time would tell as to how he would be affected by this, and it has become apparent that it is affecting the left side of his body. He needed physio last year due to constantly clenching his left fist, but thankfully that problem has been resolved.

The main issue now lies with his walking. He is able to put his right foot flat when standing holding onto something, yet is unable to put his left foot flat without help. As soon as he walks using his walker, or cruises, both feet are raised onto tip-toes.

He was given AFO splints in January and Piedro Boots in March, yet unfortunately the problem is still there. Serial casting failed.

We are waiting for an appointment for him to have botox injections into his leg, but as chance would have it, the doctor who ran the clinic at the hospital where DS is being seen, retired a couple of months back and so we are still waiting for a new clinic to get up and running.

I just wondered if anybody knew of anywhere private we could possibly try? DS is 21 months (19 corrected), and Im prepared to do all I can to get him to take his first steps.

Many thanks.

chinchi - dd had the same issue but both sides. it has improved a lot over time (she's 5 now) due to the stretching from the increased weight bearing as she got older (which reduced the need for manual stretching lol). she still has tightening, but more intention tightening now, in that she does tend to use her toes for walking/ trying to run.
there is often quite a wait for botox, so although i would be ringing the secretary regularly to both ask when the new clinic will be set up/ request a referral to somewhere else, i wouldn't necessarily worry for a month or two yet. (we've been on a waiting list for botox for something else for over a year now)
fwiw, dd2 didn't take her first independent steps until past three, but walks independently now (although we do use a chair for distance/ speed. ds sounds like he's doing very well!

Thankyou so much for your replies!

It was just lastnight when DH looked at DS and said ' I wonder if he will ever walk', that made me want to wave a magic wand and wish it would all get better!

He crawls at the speed of lightning and has so much confidence cruising, but just cant get his balance due to the tip-toes.

He is having physio every week and she is very impressed with him, but as his Mother, I always try to push for more!

ds2 is 6 & has mild CP (prem 28 wks).
His feet are much flatter now he still wears DAFO'S & has also had piedro's when smaller.
We still do stretches in the bath each morning & physio monitors his tightness & range of movement, but it is so much better now.
He walked at about 2, very wobbly & on his toes, but the more he walked the better he has got.
He still tends to stiffen & go up on his toes with growth spurts.

Does your ds have night splints too?

I'm a massive fan of Botox. My DS also born at 29 +2 with diplegia CP. He is 4.3 years old and has just had his 3rd lot of Botox, each time it's been about 6 months apart and we have seen huge, noticeable and lasting improvement.

The Botox itself does wear off and the spasticity returns but for us what DS has learnt in the time free from it has stayed with him. It is often in unexpected ways, the first time it was as if he had just discovered he had legs and that they were under his control. The second was not such a success but we still managed to stop almost all scissoring of legs, which has stayed away.

The last time was followed by 2 weeks of casting and we have got his heels down! it's not permanent by any means but for the first time he has some real understanding of what flat feet means. While in his casts he took his first independent steps. He does not walk independently and while he takes about 4 or 5 steps daily it will be a long time before he moves on from that and I don't know if it will continue once the Botox wears off, we are now 7 weeks past botox so have a little while longer to consolidate it I hope.

What I would say though is make sure that you, and he, are in a good state and there is nothing like major building works happening soon after (this was what happened after out second bout!) The botox is useless in itself without therapy afterwards, the physio will probably do some 'intensive' work of say once a week but it's the things that you do at home even as part of his day rather than therapy that make a difference at this time.

I hope this helps, feel free to ask anything else!

Oh god, just read your OP properly, you were asking for private orthopods, sorry, will back out now as I know none!

Thankyou so much again. Your replies have been very reassuring!

HairyMaclary- thankyou for sharing your experiences with me. We are on the waiting list withthe NHS, but me being the impatient pushy Mum wondered about going private!

How long did you wait for the initial appointment for your son? Which hospital did you attend? We are being seen in Calderdale- the consultant doesnt want to refer us to Leeds as he thinks the wait there will be much longer.