Re: my daughter

[Guest guest]

hi, thankyou so much for your reply, its been very helpfull to read these stories, great ormond street have always told us that maisies biopsys have come back as panniculits. having this illness is very scary at any age, but when it was my tiny daughter at such a young age i have never been so scared in my life. its been such a help to read these stories and to see that people do get better and there is hope. for me and all 3 daughters we are just so gratefull to get through another winter, and for maisie to have another birthday.

this group has really helped me understand en abit more and to know there is always hope.

thanks again

take care xx

To: erythema_nodosum_Group From: anjanetteviviano@...Date: Sat, 30 Oct 2010 09:44:41 -0700Subject: my daughter

Hi ,

Welcome to our group. I personally find alot of support here and resourceful information. As you may know by now, everyone here has different remedies of dealing with their EN. For myself, I have had panniculits nodules since I was 12yrs old. I have had every test under the sun and they have never found any real cause to my condition. My symptoms fall under EN but I don't know what the 'trigger' is, if there is one. With that said, growing up I was a sickly child. I had consistent asthmatic bronchitis and strep throat. Then, at 12yrs old the 'nodules came up" on my legs.They were numerous and about the size of a quarter to a half dollar. Most often they were bright red, very tender and rarely would they become infected. Infected meaning they would become really hot, super bright red, grow larger and required antibiotics. I would go into remission but would have about 2 episodes a year. Along with my nodules, I am tired alot, get sick very easily, recently my joints hurt badly when I am having an episode. At 35yrs old, the nodules no longer restrict themselves to my legs. This year I have had ones appear on my stomach and a couple on my upper arms, this is NEW and it is a first as the bumps have always restricted themselves to my legs. The last decade I have had about 3 episodes a year.

I am used to Dr's being unfamiliar with my condition; they are usually baffled by it. Throughout the years I have realized that time will heal up my nodules and I take pain meds as needed when i am having a breakout. Now, when my episodes are really really bad, I resort to the steroids with caution. I have had steroids backfire on me BIG TIME.

Some of the best tips that I have learned in treating my EN has come from , who is our groups moderator.She reminds me to keep my feet up, where stockings, rest and let time heal. I have also read other remedies here that work for others, but most of us have different situations and something that may work for one individual doesn't apply to all of us. However, we share the same symptoms and relate with one another as we all deal with EN or similar symptom of EN. I am so glad you found this group as it is a real blessing. Before I found it, I felt so alone and this group makes me feel like I am part of stable friendly family.

Please keep us updated on your daughters condition. I am sorry that you have to go through this, as a mother I can relate.

Nice to 'meet' you.

AJ Viviano

Anjanette Viviano

[Guest guest]

Hi, I wanted to respond to 's letter. I have a daughter who is 9 1/2 and has recently been diagnosed with EN. Like , she has always had respiratory problems and was recently diagnosed with PCD Primary Ciliary Dyskinesia. This is such a rare disease, I am wondering if they two are related. We see a pediatric pulmonologist every month. Is anyone on the forum familiar with PCD and do they know if the two are somehow related? Thanks! From: LISA

CARPENTER To: erythema_nodosum_group Sent: Sun, October 31, 2010 6:05:22 PMSubject: RE: my daughter

hi, thankyou so much for your reply, its been very helpfull to read these stories, great ormond street have always told us that maisies biopsys have come back as panniculits. having this illness is very scary at any age, but when it was my tiny daughter at such a young age i have never been so scared in my life. its been such a help to read these stories and to see that people do get better and there is hope. for me and all 3 daughters we are just so gratefull to get through another winter, and for maisie to have another birthday.

this group has really helped me understand en abit more and to know there is always hope.

thanks again

take care xx

To: erythema_nodosum_Group From: anjanetteviviano@...Date: Sat, 30 Oct 2010 09:44:41 -0700Subject: my daughter

Hi ,

Welcome to our group. I personally find alot of support here and resourceful information. As you may know by now, everyone here has different remedies of dealing with their EN. For myself, I have had panniculits nodules since I was 12yrs old. I have had every test under the sun and they have never found any real cause to my condition. My symptoms fall under EN but I don't know what the 'trigger' is, if there is one. With that said, growing up I was a sickly child. I had consistent asthmatic bronchitis and strep throat. Then, at 12yrs old the 'nodules came up" on my legs.They were numerous and about the size of a quarter to a half dollar. Most often they were bright red, very tender and rarely would they become infected. Infected meaning they would become really hot, super bright red, grow larger and required antibiotics. I would go into remission but would have about 2 episodes a year. Along with my nodules, I am tired alot, get

sick very easily, recently my joints hurt badly when I am having an episode. At 35yrs old, the nodules no longer restrict themselves to my legs. This year I have had ones appear on my stomach and a couple on my upper arms, this is NEW and it is a first as the bumps have always restricted themselves to my legs. The last decade I have had about 3 episodes a year.

I am used to Dr's being unfamiliar with my condition; they are usually baffled by it. Throughout the years I have realized that time will heal up my nodules and I take pain meds as needed when i am having a breakout. Now, when my episodes are really really bad, I resort to the steroids with caution. I have had steroids backfire on me BIG TIME.

Some of the best tips that I have learned in treating my EN has come from , who is our groups moderator.She reminds me to keep my feet up, where stockings, rest and let time heal. I have also read other remedies here that work for others, but most of us have different situations and something that may work for one individual doesn't apply to all of us. However, we share the same symptoms and relate with one another as we all deal with EN or similar symptom of EN. I am so glad you found this group as it is a real blessing. Before I found it, I felt so alone and this group makes me feel like I am part of stable friendly family.

Please keep us updated on your daughters condition. I am sorry that you have to go through this, as a mother I can relate.

Nice to 'meet' you.

AJ Viviano

Anjanette Viviano

[Guest guest]

Yes the 600mg's of ibuprofen sounds familiar. 20 years ago they told me to take that. Over time that can wreak havoc on her liver. Anyone who prescribes this long term as well as steriods is a doctor that isn't concerned about her long term health. If she is having gastrointestinal issues I would recommend having her go gluten free. Most likely she won't have anymore issues. Gluten has been proven to cause issues with EN. Alot of those who have suffered terribly with EN have gone gluten free and been free of all symptoms of EN. I'm not saying that gluten is the reason for her EN. There is an underlying cause, most likely autoimmune. However gluten is very aggressive on those whose systems have the potential for autoimmune issues. A big clue to autoimmune is the gastrointestinal issues she might be experiencing.It is a very healthy lifestyle and will provide tremendous relief. Since I have gone gluten free my entire family has gone gluten free and love it. Do some research on how gluten free alleviates swelling of joints and heals the body as well as helps with skin issues.best, ML GemmillThe miracle of gratitude is that it shifts your perception to such an extent that it changes the world you see.Dr. Holden My 15 year old daughter has been suffering with EN for 3 months. I'm hoping she's almost through it. Her fevers are gone. Her cough is gone. Her legs look great. She is still having some swelling in her ankles and feet though not nearly as much as she had. She did have a biopsy of one of the lumps last week (still waiting for the results) and she had an MRI on Friday. They wanted to check her gastrointestinal system for inflamation. She'd been having some gastro issues recently (of course she's been taking 600mg of ibuprofen every six hours for weeks). Does any of this sound familiar to anyone? Does it sound like she's close to the end of this? It has been so informational and comforting to read everyone's stories. It is so important to know you are not alone in this. Thank you to everyone.

[Guest guest]

My daughter got EN a week after a vaccination!Sent from my iPhone