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Still trying to diagnose!!!!

toodlebug
Posts: 2
Joined: Nov 2000

HEEEELP!!!I need some parents to give me in detail what were the first symptoms. My 7 year old daughter has been seeing docs. for the last year, with one thing after another. She has what we are calling "mystery fevers". Extrememly high and no explained reason. Then in March she developed one lump in her neck, which was not resolved by rounds of antibiotics. She now has them on both sides of her neck, under her armpits and on both sides of her groin. We did a biopsy in July. Which came back normal. But the surgeon, himself, said the lumps are very abnormal and even he strongly recommended a second opinion. By the way all the specialists and our family doc. were surprised by the negative outcome. We went to get that second opinion. The only thing that doc. showed me is that he could read!!!! He said everything is normal. High fevers, lumps that keep getting more. I don't know what he's basing normal on. But we still have these lumps and these fevers. If this is NHL, then I need to find someone who has shared experiences, so I can try to figure out how to get her diagnosed properly, and get her on the road to surviving. If anyone has any info. on how to find more concrete symptoms, I sure would appreciate it. We are so tired, scared and frustrated. Any help would be appreciated!!!! Thank-you. Toodlebug ( my daughter's nickname)

torey's picture
torey
Posts: 11
Joined: Jan 2001

When I was experienceing symptoms i had lower back pain and also a lump om my neck. I would recomend a better hospital maybe one more specilaized in pediatric oncology. What state are you in? Feel free to contact me, Torey22@excite.com. I would love to help the best i can. God bless you.

reynag
Posts: 1
Joined: Apr 2001

I would also recommend going to a pediatric oncologist. My son of 4yrs. old had a lump in his neck on the right side (lymph node glands). A biopsy was done on this and it was a tumor, the docs thought maybe he had lymphoma, but more had to be done. Three days later we went to a pediatric oncologist, and a bone marrow biopsy was done, 3-4 hours later, he was diagnosed with having acute lymphoblastic leukemia (A.L.L.). I don't know your situation to well, just what you have written, and understand that I am not a doctor, but please get to a pediatric oncologist. I hope this helped you, Good Luck and GOD BLESS. If you need anything else please let me know.

toodlebug
Posts: 2
Joined: Nov 2000

reynag, thanks so much for responding. We are still in process. The node was neg. But now I'm being told that NHL can be in any tissue, and that the neck nodes can be responding to it elsewhere in the body. She still has the enlarged nodes ( a year now), they are not getting bigger, just more. She now has developed chronic sinus infections ( never had before). We just biopsied her tonsils and adnoids. Still waiting for the results. The nasal passages are showing enlargement of tissue on the right side. I have found several case studies where NHL has been found in the paranasal sinus'. So who knows. We just keep treating the fevers and all the weird illnesses that keep coming up. I am so torn about putting her through any more. But letting it go when your gut tells you to keep screaming, is hard. So, right now I am just putting this under out of my control file. It's Gods'. In His time. I haven't found alot of parents sharing their stories. Thank-you. How is your son? I lived in Colorado years ago, and one of my friends' daughters had ALL.So I am very familiar with that. Let me know. Sorry it took me so long to get back. It's been a crazy Spring. Please let me know how I can pray for you. We should hear something in the next few days. My prayer is just for answers, so we know what to do from here. Please keep in touch. My e-mail is greeder@in-touch.net, if you prefer. Toodlebug

katie14
Posts: 5
Joined: Jul 2002

Hi Im Katie and i had cancer last year and my cousin had somethinng like this and he had lump on his neck if you would like me to ask my cousin or even get him to talk to you e-mail me at kewl_girl72@hotmail.com I hope you will find out

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