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

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

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

That must be awful :( 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

Sorry for the late response. I managed to get a cancellation for her blood tests. Everything came back normal. I asked for a copy and there is a figure of <0.20 10*9/L for Nucleated red blood cell count. From what ive read, there should never be NRBC in the blood count. Does anyone know what this means. The doctor has been less than useless and just told me it's fine. 

Thank you x

Hi there ...

I've been trying to read up on NRBC ... but as I'm not medically qualified,  not quite sure about it   ....  maybe give McMillan or our nurses a ring where you can chat to someone about it .and find out if it's normal to have that in blood of a child .... our numbers on home page and if you go on McMillan website their number is there ...

But I would keep gently pushing untill they get so fed up of me they'd listen and do something .. think that's a great idea .. write everything down ...  coz we forget stuff .. and write down answers ... is she still having scan on head and neck .. because they can show up lots .. that's this week?  Think you said .. but don't know how long to wait for results though ... and as already said if you get worried in between, call or go to A and E ...  Chrissie x

Thank you so much for your reply. They haven't offered her a scan. I'm acting like a neurotic parent in their eyes x

There's another thread nearly the same as yours who has a 4 year old ... same symptoms .. and Drs telling mum she's o.k ...

Think you could help each other ... compare notes .. and help each other through ... it's her who has scan booked for head and neck ... give it a look .. it's under  "Lymphoma in 4 year old "  

I was getting a tad mixed .. but think together you may get someone to listen ... good luck ... never give up ... Chrissie xx

Thank you so much! X

Hi. I'm having the exact same problems with my daughter who's 4. I honestly don't know where to turn. She is my youngest of 3 children. Back and forth to the doctors in over 18 months. Last Dec they said asthma but can't diagnose her because of her age. She has lumps in her neck, armpits and groin and last night I found one in her shoulder. She has a persistent cough, bloods showed up slight anemia, she has very bad night sweats, pale with flushed cheeks, tired a lot of the time when having 12-14 hrs sleep a night, she's now struggling to swallow at times and for over a year been waking up saying her throat is hurting. Her tonsils are huge too. The night sweats wake her up and so does the coughing. She also gets belly pains. She is under the hospital so has had bloods done, a chest X-ray and an ultrasound which showed small lymph nodes In her belly. She has also started itching and has a small rash that comes and goes on her face. My gut is honestly aching that something is wrong. I am currently waiting for a call back from the gp as I phoned telling them about the new lump in her shoulder. 
 

much love from one worried mum to another x