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7 year old with lymphoma symptoms

11 Sep 2019 01:05

Hi, I'm new to this,  not sure what to say but I'm really concerned about my 7 year old daughter.

The doctor isn't taking me seriously about all the symptoms, saying I'm reading off google. Yes I have read symptoms off google which I didnt realise were relevant until I did read about them. Which is why I took my daughter to the doctors. He agrees that her lynphnodes are swollen in the back of her neck

She had swollen glands in the back of her neck..  pea sized lumps for over 4 months. She often has night sweats where her sheets are drenched in the morning, she has severe itching that causes her to cry and frantically itch, she is particularly tired for a child of her age, would happily sit on the sofa snuggling rather than play with a friend and she has always felt cold even in a heatwave she will be having a breakdown about needing a coat on.

In all honesty I have been made to feel like I am worrying over nothing, which I can handle but I am concerned that there is more to this. She is my middle child of 3 and my other 2 are absolutely nothing like this so I just wanted to hear personal experiences of lymphoma and your personal experiences / symptoms.

I'm sorry if I have posted this in the wrong forum. Km going out of my mind with worry 

Thank you x

7 year old with lymphoma symptoms

11 Sep 2019 01:32 in response to Kat86

Hi there

So sorry you're going through this.

Though I don't have experience of being a parent I can only imagine the worry.

Given the symptoms I would strongly advise getting a second opinion or seeing an alternative gp.

Whilst this might be some kind of virus, the fact it's been going on a while means you need to get sorted, besides, it must be horrible for your little one having to go through that.

I'm 27 with Hodgkin's lymphoma stage 3. What I would say is that if it does end up being lymphoma this is a very treatable condition and children and way more resilient than we give them credit for!

Your child might need to have a scan - CT/ultrasound/MRI or PET scan. PET scans are usually the ones given to assist with a diagnosis but I think they don't like to give these until they have more evidence to suspect cancer from other scanning means, so they might want to do some bloods and do a CT scan.

Also - in regards to symptoms. I actually only was diagnosed because of pain in my groin which they scanned and then realized the lymph nodes were up, I was then sent for a full body CT and my spleen and other nodes shower up 'areas for concern". I have what they call 'A symptoms' i.e no symptoms really aside from biological evidence/ tissue indicating lymphoma. This is more unusual. Usually for lymphoma a person will show 'b symptoms' i.e. the symptoms you described ; itching, sweating, tangible lumps, fatigue.

Don't let them rule things out based solely on your child's age either, they said to me I was too young - even at 27! 

Sending best wishes and whilst I appreciate I'm probably not the kind of person you wanted to hear from I hope I've atleast helped a bit.

 

Really hope it works out well for you all.

All the best.

Rose

7 year old with lymphoma symptoms

11 Sep 2019 02:22 in response to Ross2991

Thank you so much for your reply.

 

I'm so sorry to hear you are having such a tough time! I cant imagine the worry you have faced! 

 

I had previously gone to the doctor yesterday requesting a thyroid test based on my daughters lack of energy and severe itching (which we have been facing a losing battle over the past few years with several steroid creams) I had forgotten to mention about the enlarged glands and night sweats yesterday so called them back and saw a different doctor today. He did a thorough examination and said he was confident that my daughter had nothing wrong with her. Shes a happy, bright girl and I obviously dont want the worry of all this but I am very concerned. He said that the blood tests booked in for October would rule out any concerns however I've since read that blood tests aren't conclusive with this. Not a clue where to go with this. In their eyes I'm a neurotic parent but i would  never forgive myself if something was wrong and I didnt follow it up! Xxxx

7 year old with lymphoma symptoms

11 Sep 2019 08:36 in response to Kat86

Oh my, what a dilema  ... I had same feelings with my son .. though different symptoms... I just knew something was wrong ... lucky for me, the dr did a blood test there and then .. she said if I took it to hospital lab it would be processed that day .. took it there ..

By the time I got home the house phone was ringing ( no mobiles then) with message to get him to hosp right away .. he had really high blood sugar and was diagnosed diabetic... if they hadn't acted so quick , well can't think of what would have happened ..

All I'd say is if it feels wrong , fight for tests .. scans ... I'd rather them be tested and o.k then not tested and they miss something .. try calling McMillan nurses or our nurses .. and ask where you can go now .. l really hope they are right .. but they only see that child in their Drs surgery ... not at home like you .. 

Good luck .. let us know how it goes ...  Chrissie x

7 year old with lymphoma symptoms

11 Sep 2019 09:23 in response to Kat86

That must be awful Sad I'm really sorry.

I know the blood tests are a while off, is there any facilities near you which mean you can get one sooner?

For example my GP makes me wait weeks but there is a sit and wait blood clinic and my local hospital so I go there, you just take a ticket like you're in Argos and they call your number, takes me about 45 minute wait but saves the weeks of waiting.

It must be very hard to separate your own anxiety especially when being told you're just a worried parent but as Chrissie says I would push to get reviewed, you know your own child

I would strongly recommend keeping a diary - you said you forgot to mention the raised glands to the GP at first. Writing a symptom diary will help you keep track of everything and also hopefully make the GP see just how frequently symptoms are presenting. Write it all down!

Finally, and yes it's a long wait and messing around but have you considered taking her to the a&e when she's really bad with temperature and night sweats.

Sending well wishes

Rose