4 yo with RP?

[Guest guest]

, Hi and welcome to the group. I'm so sorry to hear about your son.

Gosh it just breaks my heart to know of a child suffering with this disease

and any others. We do have some parents with children that have RP. One is

in France and she has 3 with it. I will send her your email in French and

see if she can help you. I'm sure that there will be others too.

The ear part sounds so familar. And taking the indomethicin makes sense that

it would take the flare down.

I'm sorry I don't have many answers for you, but I can offer you all the

support you may want. We have a wonderful group here and SO many shoulders

to lean on.

Please just keep asking all the questions you need to. We are here all the

time.

hugs

[Guest guest]

Hello everyone. I am new to the group and am a *mess* of questions. I really dont know if I'm in the right place here- maybe after reading the following intro you can give me some idea on whether I might be on the right track or not. What I do know is, having read about RP, I feel light as a bubble inside, with the absolute conviction that I have possibly found the key to the mystery that is my son.

My son is 4 years old. He was born with medical complications found in utero. Four years of hospitalisations, and we have a handful of diagnoses to explain many of his problems. What we have been told by a few of his specialists is they feel there is some connection between all the complications/conditions/infections with an autoimmune component.

Going through the list may give you some idea :

primary immune deficiency (PIDs), subclinical hypothyroidism, colonic enertia, hiatus hernia, severe long term anorexia, chronic mouth ulcers, periodic neutropenia, periods of joint pain on waking, early stages bronciestasis (sp) from repeated pneumonias, bilateral dilatation and hydronephrosis of both kidneys due to PUJ obstruction, chronic abdominal pain, chronic pancreatitis, and CPH-Chronic Paroxysmal Hemicrania, a very rare from of daily head pain. I'm sure I've left one or two things out, but you get the idea. My son is on 14 doses of meds each day, (more if he has an infection), plus nebuliser tretments/puffers/ and inhaled steriod when required.

What has led me to RP is research I was doing to try to explain the bright red ear(s) my son has periodically. They are never associated with fever, infection, bites or sunburn. They just *happen*. The ear becomes painful, thickened, and hot. The lobe is never affected. I have noticed over the weekend, when his CPH med dose was overdue, his ear turned on like a beacon. The med is Indomethacin, an NSAID. He takes this each day, 3 times a day, together with his other meds. He also has problems with eye pain. I'm actually now wondering is this very rare CPH actually RP?

Does any of this sound like it could be RP? I am desperate to know from those who have been dealing with this condition whether it sounds likely. I am also hoping that someone here with a child with RP might be willing to talk with me about their child and how it presented with them, also how they went about getting a diagnosis. My email address is buttrfly@...

Now I have to be patient and wait for your responses!

I have many more questions but will hold on to them for now.

, in Australia