Son started limping on december 16th. was fussy, wouldn’t walk unless given medication but was still a limp. fever of 103 on the 20th. brought into ER. told them about him limping. took labs and x-rays, everything came back normal. said to come back if worsened. few days go by and he stopped walking completely. january 2nd, noticed swollen knee. january 4th, ankle was really swollen. brought back in ER. took more x-rays, everything still fine. follow up on 8th, pediatrician thought it could be HSP because he also has some kind of rash on buttocks. suggested sending us to Phoenix Children’s Hospital for MRI but wanted second opinion first. 9th, saw another pediatrician. knee and ankle still swollen at this time. he also thought could be HSP but not typical presentation. brought in orthopedics and two other doctors. all came to agreement it could possibly be JRA. went to PCH same day. got more xrays, more labs, ultrasound.xrays good. labs showed elevated white blood cell. also had rhinovirus infection. ultrasound showed fluid in ankle and knee but not enough to take some out and examine. got admitted, hoped for MRI next day. next day labs showed everything normal. wanted to hold off on MRI til following day to see how he was. those labs showed extreme elevated white blood cell doctor said. went ahead with MRI. it showed no infections. doctors gave a list of things it could be. JRA, HSP, tick bite, not enough vitamin C, iron deficiency, or body just doing it to himself. a “bump in road”, “sometimes things like this just happen”. dermatology wasn’t worried about rash. doctors weren’t worried about him as whole because he seemed fine. let us go home even though still not walking. will be a month in 2 days that all of this has been going on. anyone have any idea what could be wrong with my child?
if you don't trust this battalion of doctors, why do you think strangers on the internet will know?
khairete
S.
It seems like the doctors are doing a thorough job in looking into what ever is going on.
I'm not sure we could add much to that.
Did they test for polio?
It use to be a big culprit to look for before the vaccine came along.
I did hear of one case years where a child (about 8 years old) stopped walking/standing.
Parents carried him everywhere he had to go - doctors were stumped.
And then one did a test for an obscure disease - and it turned out to be a rare bone virus.
No treatment for it.
But 6 months later it suddenly cleared up and the kid walked fine like nothing had ever happened.
What did blood tests say? JRA, vit c deficiency, iron deficiency, and probably even a tick bite can all be easily detected by simple blood tests. Surely those were done. If not, ask for them now.
This sounds like what happened with my nephew...it took 2-3 years for him to be properly diagnosed. It started around age 2 and at age 4-5 he was finally diagnosed with Juvenile Rheumatoid Arthritis. He is 12 now and is doing better. He goes into remission with the drugs/shots and is doing great for a stretch of time. Then it acts up again at some point and he needs shots/doctor appointments again. It's something he will have to manage his whole life. I wish you luck figuring this out. Make sure to see specialists in each disease. Don't go to general doctors. Go to a doctor whose specialty is Lyme Disease...even if you have to travel. Go to a doctor who specialty is JRA. Look up who is the best in the country....and find the specialists that are closest to you. That is what I would do.
Sounds very similar to what happened with us, my son was 2.5 when he started limping and then stopped walking all together. My son has JRA, an autoimmune disease that attacks his joints. We were told he may outgrow this when he reaches puberty. My son in now 12 and he has had less frequent flare ups as he has gotten older. He stays active and that helps keep joint discomfort at bay, but we medical with anti-inflammatory with needed. Feel free to PM me if you have any questions.
This sounds really complex and I can understand why you are worried. It sounds like you have done the right things, including having your child seen at the children's hospital. Having all the records in one place is a benefit, assuming all the doctors are accessing each other's results and records and so on.
My husband had a very confusing and misleading disease 2 years ago, and one of the things I found so helpful was to create an old-fashioned, low-tech 3 ring binder full of records. I carried this with me to every appointment. I had a section for each doctor at 2 hospitals (what they said, including notes I took), one for lab results, one for things we were doing (like a daily blood pressure record), and a list of medications and when they were changed, added or adjusted. It came in very handy on many occasions, and on more than one, it actually was the key to solving a problem when a fax machine was out of paper or a disk couldn't be opened. One time, a small comment made by one of the attending physicians in the ER was the prompt that a specialist needed to look in another direction and send us to another specialty - which turned out to be the solution to my husband's problem.
So, don't underestimate your own role here. Another thing to do is to take an objective and more neutral friend with you to these appointments to take notes and to manage your list of questions. Also ask the Social Worker Department if they can provide a team liaison to work to unite all your providers in different specialties. I think I would really question "sometimes these things just happen" when you have a child who cannot walk, by the way.
If this was me I wouldn't bother with pediatricians I would have gone straight to a Children's Hospital so that it would be the doc's teachers taking care of my little one. Do the tests. Why not? They aren't invasive or life threatening and they might show something that can't be found otherwise.
I'm sorry he's going through this.
Welcome to mamapedia, T..
Why aren't they doing BLOOD WORK??? HOW OLD IS YOUR SON????
Go to Children's hospital and take all the files you have with you. If your son will not walk? He needs to be seen by PEDIATRICIANS and NOT ER people...
I am so sorry you're going through this. It must be terrifying.
I don't know that there's much you can do except to keep working with the doctors. Go back to your pediatrician again and discuss the options. If he's been tested for A, B, C and D, what's next? What else do you test for? What other specialists need to be seen? Where do you go from here?
You have a list of things that it could be, so now what? It could be one of those things, but what do you do? Do you run more tests? Do you wait a few weeks and observe? Are there things you should be looking for? Are there warning signs that you need to be aware of? What do you do next?
Don't let the doctors off the hook? Go back to your pediatrician and discuss with him/her which doctors you've been to, what tests have been run and what the specialists are saying. Don't leave until the ped has discussed with you a concrete plan for going forward.
