advice : Am I going the right way for my son

Ok Excuse spelling errors : ) hello people in the know!! 10 yr old son had a fall onto a sofa lower thoracic section end of June 2013. No pain no crying nothing. (July) 2 wks later ear infection (nothing new) Then 2 wks after that bilateral sensoneurial hearing loss. After the hearing loss diagnosed he started to get back pain so bad he cried for days. (August) His peds doctor (also found another ear infection) referred emergency orthopedic doctor. I explained what happened and asked if hearing loss could be related. They said no. Put on highest dose or Motrin and if no pain over 7 days your ok. So max dose for first 3 days worked then major pain. Go back to ortho doc and his assistant talks to us and my son says he gets numbness in feet and pain in legs.. they run out of room the ortho docs comes and says need MRI on his thoracic spine.

So after waiting on MRI of brain for hearing loss and Lumbar 6th November. Results Brain no problems but they found edema in L5/S1 he needs to wear back brace 6-8 wks 24 hrs a day no anti inflammatory meds as they don't help the healing. Diagnosis sent to school by my doc states spondylilosis of lower back. The hearing loss eventually after steroid treatment (august) is diagnosed as rapid progressive snhl. Confirmed by neurotologist and 3 different ent's. Again I ask everyone if the two can be related answer no. So this week after hearing aids fitted in December (these are not working out as now sound is too loud) take him for an abr check and they do the regular hearing test and say he has only a 30 db loss not the 60 db loss on the last 3-4 reports.. ???? So I decide to be my own investigator.. He has over the last 10 wks had pain that is in either his feet, shoulders, neck, bottom, hands and so I looked on our friend Google and under the hearing loss one auto immune disease is ANKYDLOSING SPONDYLITIS (excuse me if miss pelt) He has had blood tests which ent doc says 2 need to be re-done and the peds docs say no. I finally got my own copy this week and there is ? over the Rheumatoid Arthritis test with no numbers and the Serum LYME test of 0.41 ( Lyme disease I would guess). So I am looking to go to Rhuematologist as I believe he could have the ankylosing spondylitis or similar disease. He also has started to fall and trip over things which are not their or very small things. Kind of like his balance has just stopped working....

Please let me know if I am going the right direction because I seem to be the only one who can see the bigger picture and a link between the hearing loss and the joint pain and spinal spondylilosis...he is also getting depressed as he cant do pe or any other fun things the other kids at school can do..

Thanks you all in advance for your advice!!

Thank you badday for your reply! Glad I'm right not to just ignore my gut feeling as I can see the whole picture where as the others just see their area expertise . If I'm wrong that's ok but if I am right need a plan ASAP! Thank you for the immunol

Englishmumof2, any update are your little guy? You are doing the right thing by pressing forward. I hope that the new year finds him felling better!

Sorry to hear he is not feeling better. I can tell you in regards to the back brace, I have had several back surgeries and a brace tends to weaken the muscles in your core. Once you take it off your muscles need to work more and are very sore. They are needed sometimes, but its usually better to go without if possible.

Are you in the US? You mentioned the Bronx so I wasnt sure considering your screen name. I am an OT in schools so I can give you alittle guidance there. In the USA in most schools there is something called a 504 Plan, these are lists of accomodations that help the student be successful. Its kind of like an IEP, individualized education plan, for those that dont require special education services. Sounds like you son MAY qualify under "other health impairment", of course I cant say for sure. I have a wide range of students that have 504 plans, could be for ADHD, stroke, hearing loss, orthopedic conditions. You can ask for things like, extended time for assignments, copies of books at home so they dont need to carry, leaving class a few minutes early, typed notes from teacher, alternate seating/ cushions, extra breaks, shortened school day, rest periods to lay down, the list is endless. There would be an evaluation by someone at the school and they should take drs recomendations into consideration. The teachers are then obligated to follow the plan, it gives the students some protection from teachers/schools that arent flexible in these situations.

The other option if things continue to get worse would be home bound instruction, that is where the school provides a teacher to come to the house a few hours per week. My daughter broke her leg in several places, her ankle and hip, she was non weight bearing in a wheelchair for 4 months and was home the entire time. She had a teacher about 6-9 hours per week to keep up with school. I hope you would never need to do this but it is available.

Hopefully, things will start to look up once PT starts! Hugs!

Thats good that you have something in place, keep fighting till he gets what he needs.

PT in schools is different than medical based PT unfortunetely, they are accurate with that. If the student can access the school they do not usually qualify. That means, getting up and down from a chair, navigating around desks, using the steps, things like that. Usually it needs to be a chronic problem to, verses something that will get better like a fracture.

You can ask for additional evaluations at any time. OT in schools would typically cover positioning and adapted seating, attention to task, any modifications for things like that. NY is known for giving alot of services verses other states. I would say to put everything in writing. If parents ask for evaluations/ meetings there are time frames put in place that they need to comply with. I think it is 60 days in all states.

If you aret getting anywhere with the school dont hesitate to contact your state special education department. They can help you with advocating for what your son needs or in worst case helping you with mediation or due process. Been there done that,lol. All those numbers would be on the procedural safeguards that you should of received whn you had your IEP meeting.

Good luck and keep fighting!