I posted a month ago about my son s pedi not wanting to medicate him or send...
Good luck with your referral hope he dose not have to wait long for his apointment
Don't take no for a answer and tap dance on that Ped's desk. If that does not work, go to the Med board that his license is issued through. Don't give up until he does this. After all that he has tubes?? Oh Geez!!! Poor kid, I had 3 sets. I am going deaf due to issues from tubes, ear infections, lancing. Keep us posted.
#1. time for a new peds..dont be afraid to switch, doctors need to know their scope of practice, and when it is time to refer out...a lot of dr's have the "god complex" and think they know it all....they don't
# 2...be prepared to wait for that specialist now that u finally got the referal, that being said....dont be afraid to call daily and ask for scheduling and ask if they have had a cancellation....the squeeky wheel truly does get the oil! trust me....u will get seen SOON with this technique! just always be friendly and polite and understanding, but at the same time firm.....you are your childs one and only voice, advocate, everything....lion hear me roar!
Let me put this very bluntly because I don't know any other way. Your son's pediatrician is risking his LIFE by not doing something. Juvenile arthritis is an autoimmune disease that can cause blindness, permanent and irreversible joint damage, organ/system failure (particularly kidney), and yes, DEATH if left untreated.
The parents in this group have children who have juvenile arthritis, but live very healthy lives despite their diagnosis. Juvenile arthritis isn't a death sentence. They can go on to lead normal, healthy, productive lives.
My daughter, Chloe, is 13. She has seronegative polyarticular juvenile idiopathic arthritis and Hashimotos disease. She also likely has Sjögren's syndrome, and is has begun to show symptom penetration for lupus. Three years ago, a different pediatric rheumatologist told us EMPHATICALLY that Chloe had no autoimmune disease WHATSOEVER. Now when a doctor tells us that something is impossible, we tune them out.
Chloe NEVER gets sick. She had a UTI last summer. Before that, I can't remember the last time that she was treated for something that wasn't autoimmune-related.
About 20 years ago, my grandfather was on his death bed. He had a mysterious illness that lasted over 6 months. The doctors thought it was either a form of cancer or a rheumatic illness. It was neither. He had Lyme disease. A deer tick had embedded in his armpit. He thought it was a mole. He removed the tick and was out of bed the next day. He was able to return to work a few weeks later.
What if your son had a tick? Or leukemia? Or some other far fetched diagnosis...how would they know unless he had underwent series of specialized blood tests and an intense physical examination??? The rheumatologist and her research fellow spent about 2.5 hours examining Chloe on her first visit. They also drew 8 tubes of blood and a urine sample.
Your son needs an eval by the Ped Rheumy ASAP! I pray that this referral gives you some answers.
We were at the doctor for almost 3 straight weeks but our pediatrician realized that it was anything viral and put him in the hospital. I would not take NO for an answer. Either switch pediatricians or take him to the ER when he is really bad and ask to be admitted. The later doesn't always work but its worth a chance while waiting on an appt with the new pediatrician. The sooner, the better with this disease. You will probably have to wait to get in with the Rheumy once you get a referral so you want to get that as quickly as possible. I hope you get some answers soon!
Thanks everyone! He hasn't had a flare up for a couple weeks so hopefully it stays that way til we see the rheumy. They are suppose to call Wednesday for an appointment. There isn't one locally though so we have to drive about an hr and a half to see one. When you all went to the first appt did they run tests that day or bring you back for a second appt for tests?
We did blood work and xrays the first day at the beginning of the appointment. The Dr ordered a wet read and had results before we left. We had spent 2 years before that trying to get am answer though so I had previous films to compare it to.
Chloe had bloods done and xrays on her first vist and they told us on the day which type of arthritis they thought she had hope all goes ok when you go for your first vist
What i did was took photos before we went for the first time and showed them when we went what was happening with her joints swelling