15 Yr old boy chronic back pain

I would recommend a referral to pediatric rheumatologist. Gilbert's is a genetic disorder and he may have other genetic issues.

Ask the pediatric rheumatologist about the possibility of the gene marker HLA-B27 Juvenile ankylosing spondylitis.

@gilkesl
Hes awaiting test to rule out these conditions.
His symptoms are showing like Marfans, his heart test will give us more of an idea..
We're also hoping Manchester children's hospital will be more clued up on whats happening with him..
Thankyou

@sammymatt Welcome to Connect. It sounds like you are in the midst of diagnostic testing. When you describe a tear in the lower spine, are you referring to a disc or a ligament?

I thought you may be interested in this podcast video from Mayo Clinic that discusses vertebral body tethering which is a way to assist a growing spine and to help correct scoliosis curvatures as they happen. It involves connecting vertebrae, not with rigid rods, but with a flexible cord that still allows the spine to bend. When the spine is still growing, fusing it with stiff rods creates a problem as the spine attempts to grow in height.

I also looked up Gilberts disease, and I don't see a mention of it affecting the spine. Here is a link that explains.
https://www.mayoclinic.org/diseases-conditions/gilberts-syndrome/symptoms-causes/syc-20372811
When you have multiple specialists weighing in, it can be easy to follow a path that distracts from the biggest problem. If the biggest concern is the spine, don't lose the focus on attention to solving it. Scoliosis can cause functional breathing issues by deforming the ribcage and making it less efficient to take a breath. Breathing works like a vacuum in that the ribs must expand and create negative pressure within the chest, and the surrounding air enters the lungs because the air pressure is greater than the negative pressure inside. If you alter the shape of the chest, it may not expand as well, and there would be less of a pressure difference to invite air exchange.

Certainly, Marfans Disease is also a serious concern and scoliosis treatment may be part of managing it. For everyone who is following this discussion, here is some information. I do believe one of my relatives had this and it contributed to his aortic dissection that caused his death. He was in his 70's at the time.
https://www.mayoclinic.org/diseases-conditions/marfan-syndrome/diagnosis-treatment/drc-20350787
I hope that this information will help you understand and create some good questions to ask of his specialists.

Do you have questions that come to mind that you would like to post here?

Jennifer,
Thankyou for all that information , what you said about the scoliosis causing movement with ribs and breathing changes makes sense, its been one thing after another with his body, very strange symptoms, difficult to know which causes what..
His pain is the difficult thing for him coping with, its constant and no ease.
Hes tried ibrofen, paracetamol, codine, co codamol, naproxen, none of which touch his pain.
Hes doing daily physio, cant manage much but it all must help, weve talked him into swimming twice a week, I say swimming he walks n moves n stretches in the water, its good exercise and im hoping this starts to help him..
His MRI shows an intervertebral disc tear L5 S1
As you say this is weight bearing and why standing and sitting for long periods is difficult for him, ive no idea if they will do anything for this or what they can do but its causing him so much pain daily, its so difficult for him to manage, im praying our wait to see the Manchester Spinal hospital will offer us some hope and help us get him better, hopefully our wait wont be too long, its a real battle to get these appointments, ive never been off the phone , luckily the lady ive been speaking with trying her best get us seen..
He has the heart check in Jan and im praying 🙏 thats clear and all ok..
We're on the right pathway of getting seen its been tough..
Thankyou for your replys, helps to talk and read others journeys

@sammymatt
Go to the best children's hospital you can. His back pain and other findings are NOT ok or normal. My son, at 18 y.o. began suffering from terrible back pain as well and let's just say... The outcome, after many months, was devastating.
Don't take no for an answer - you are your son's best and only advocate. My prayers are with you

@judyhendricks1959
Thank-you for your reply
I totally agree
We've been passed around 2 different hospitals now and lots of Doctors to eventually get where we are now..
Im thinking Manchester children's will be the Hospital that's going to be able to help us, its the most funded, specialist teams regarding Spinal issues.
Ive rang pain management team at manchester today to try and get him help but been told very long waiting times and he will probably get his appointment with Spinal team before pain team, its difficult when hes having pain on a daily basis..
Ive been advised ring his hospital paediatrics team again ask them if they can help, I think he needs some kind of Spinal pain injection to try and help with the pain , but not sure they will be able to do it, think that will be Manchester ..
We will get him all the help we can, I'll fight tooth and nail for him, as I do,, they'll be sick of me im always on phone , really dont care tho..
Hope your son's doing ok now , its tough seeing our children suffer
Thankyou x

@sammymatt If there is instability at L5S1, it may become a surgical issue. I know you mentioned an injection, but that won't fix anything. Walking in the pool sounds like a good approach since that will take weight off because of the buoyancy. This is a lot for a young person to handle. I know that my spine surgeon at Mayo, Jeremy Fogelson, had a similar surgical case of a young guy who was a swimmer and developed instability at L5S1. It was a subject of an article.

@jenniferhunter

Jennifer
I keep getting told so many different things of different Drs and physio, im praying the spinal team at Manchester are going to be the ones that help us, we're just waiting to hear from them for our appointment.
Im also thinking he could possibly need Surgery, hes got pain everyday to deal with, this is why ive been asking about the injections to get him some ease while we wait, but dont think it will happen..
He is dealing with alot, it worrys me cause its going to have an impact on his mental health.
Praying we hear from Spinal soon 🙏
Thankyou

the most bizarre thing just happened. While @sammymatt I was reading your post (I've had various joint replacements and old people stuff - and have hung out here to offer advice over the last 2 years) I had a "visualization" of what you wrote while I was reading. I received a visual image of a young boy with Marfan's disease. How crazy is THAT?! Then I got to the part where you wrote the words! I grew up with issues and later in life I would happen upon Marfan's. I had a crowded mouth of teeth, myopic, long limbs and hypermobility. I had scoliosis and ended up with joint replacements later in life. My shoulder blades stuck out bigger than my boobs when I was young. (I'm female.) I started having lumbar back pain at 18 and was diagnosed with degenerative disc disease in my 40s or 50s. It runs in the family so its not unusual for me because my ancestors all had/have it. One can have some aspects of Marfan's and not all of the symptoms or physical issues. You don't have to have all the horrible effects of Marfan's - one can have mild aspects. If you are diagnosed with Marfans one can lead a full and healthy life with doctor attention.
I hope your son gets the pain relief you are both after most of all. Maybe a deep tissue MFR therapist might be helpful. I have a home sauna for muscle skeletal pain relief. Take him to a sauna and if it provides pain relief than buy a home one for $2500 - $5000. I've had mine for 20 years. It does wonders. Praying for you!