My Teenager is Suffering - Can anyone help?

SueKat

My 14 year old daughter has mild right sided hemiplegia but for the past six months has been suffering chronic pain in the joint of her right ankle and we cannot get control of this.  Its affecting everything her school attendance, concentration, mental health. We have support from physio's but we have done everything we can on stretches and splints, bottox injections and normal pain relief such as paracetamol and ibuprofen.  The GP will not assist, flatly refused to give any solutions.  If anyone out there can suggest anything that they have done it would be really helpful. Thank you. Mum is at her wits end too!

Cher_Alumni

Hello @SueKat and a warm welcome to our online community, how are you and your daughter today?

Oh, I can only imagine how this is impacting you both. It sounds like you have exhausted lots of options already, and to not have your GP's support going forward is frustrating. Have you tried speaking with another GP at your surgery or considered swapping doctors altogether if you're unhappy with the service you receive?

I'm going to tag in @Richard_Scope, Scope's Specialist information Officer and Cerebral Palsy Programme Lead, as he is knowledgeable about hemiplegia. I'll pass on a message for when he's next on shift to flag up your question and I'm sure he'll pop along with some information. 

Lastly, are school being understanding about her attendance?  And also, have you both got support around the emotional impact this is having?

Thanks for telling us about your current situation and I hope you have a lovely Sunday 

durhamjaide2001

I'm so sorry your teenager is suffering just please reassure her that this pain won't last forever I had back surgery and I didn't believe I would be in no pain and now I'm pain free. 

Richard_Scope

Hi @SueKat
Thanks for your post and I'm sorry to read that your daughter is experiencing so much pain. Can I ask if the ankle on your daughter's affected side? 
If it isn't, it is possible that the pain is due to the stronger side overcompensating and taking most of the strain when moving. Also, has your daughter changed her style of footwear at all within the last 6 months?

To help get a clearer picture of what is going on, your daughter should have been offered x-rays and scans. Has that happened? It is really important to try and identify the underlying cause of the pain.

SueKat

Hi @Richard_Scope not the pain is in her affected side at the ankle joint.  She has hurt her other leg over compensating but we have done everything we know.  We have changed her footwear on the advice of the consultant last December and she has some custom made orthotic insole and a resting splint for night time use to help her get the foot in a better position but we just can't carry on like this.  The prospect of surgery is looming but they won't do that until she is 16 they have said and so we need to get through this period and GSCE's.
The school have been fantastic this year I have to say and her Learning Support Team are brilliant so there are no issues on that front its just the emotional, physical and mental health issue that are starting to get out of control as she looks at the future and sees one of permanent pain and I really can't re-assure her that it will improve at this moment.  Out of ideas.

Richard_Scope

Hi @SueKat, thanks for replying. So she had had x-rays and scans on the ankle in question and they have ruled out arthritis, muscle atrophy or ligament damage?

SueKat

Sorry @Richard_Scope no we have not been able to get any scans or x-rays they keep saying its probably aggravated but unfortunately that doesn't take the pain away.  I have an appointment on Wednesday to see the consultant - do you think then this is what to do as I can't help thinking that there is more going on here than we can see.  He wrist on the affected side was similar last year and after an x-ray she was diagnosed with a rare condition for her age of Keinsboks Disease where the Lunate bone has died (no one knows why) but this did come with pain, we thought it was a sprain.

Richard_Scope

I would definitely push for a scan and at the very least an x-ray. I am surprised they haven't already done this given her additional diagnosis of Keinboks disease.

SueKat

@Richard_Scope even if we pushed for a scan and got one in the next few weeks I'm not sure any of us can cope in the interim with the lack of pain management.  Short of telling her to stay in and exceeding the max dose of standard pain relief (which does not seem to work anyway) in between times I don't know what to say.  She has started to self harm so that the other pain is less to deal with.

Richard_Scope

In terms of managing the pain, I would suggest ice packs. Not heat because at the moment you do not know if the issue is muscular or not. Heat can make muscular injuries bleed more and significantly delay healing. 
Have you discussed the delf-harm with your G.P. or the school welfare team?