Hi, I am so scared about my son and it seems no one wants to listen unless there is a confirmed diagnosis, which we don’t have currently.
He is 11 and has complex needs so well used to the long time that doctors take to listen to concerns. About 5 weeks ago he became very unwell with tics that have just been diagnosed as PANDAS. The paediatrician didn’t pay attention to them but was concerned about his weight loss as was less than 6 months ago.
He is very lethargic and emotional with pain in his limbs - but he does also have M.E/CFS.
He has night sweats but no fever.
The blood results we had done for PANDAS also show:
White cell count *3.66. x10^9/L
Eosinophilis. *1.9%. 0.07 x10^9/L
GAMMA GT. *8
Phospate *1.17. mmol/L
Uric Acid. *155 umol/L
IG3 subclass. *0.21 g/L
I know some aren’t relevant but thought better to put the whole picture in.
I am not asking for a diagnosis as understand that is the doctors place, (we are scheduled a call) but from the years of his other needs, I know that other parents know best having walked the path so if anyone has any advice on what I should best do to support him, tests to ask for, been in a similar position? Any advice very gratefully received as I am wanting to gain as much information as I can before the doctor rings back to prepare myself.
Please note : My son has multiple issues so please don’t worry about upsetting me by saying it sounds like Leukemia. I am braced for it and given his history, used to it and would rather hear honest opinions from other parents/people informed. Thanks for the time
Good morning @Boo. It sounds as though it’s been a really difficult time for you all. It’s so horrible waiting isn’t it, and very frustrating, especially when our instinct is just to protect our children and to make them better. Off course, you have lots off questions and we all research what it could or couldn’t be. However, I would never suggest any possibility of a condition, not because of upsetting you, but because I just don’t have the medical knowledge to do that. With any kind of blood cancer, I have found everybody’s symptoms to be so different and individual and the results could be related to a completely different condition. Therefore, like you said, it’s so important that your sons team are the one to do that. When is your call scheduled for? Do you have a good relationship with the medical team? I think it would be really useful to write down all off your questions. I’m sure we can suggest things you may want to ask. I would strongly suggest calling the blood cancer uk support line before your appointment. They will be able to talk though your appointment and key questions, as well as supporting you, so please, give them a call. Please keep posting as we are all here to support you.
Hi @Boo, again I am not medically trained but what so many of us will empathise is that need, especially as a mother, to do the best for your child. I know my mind goes off in all directions 24/7.
Please as @Nichola75 says write down all your questions including your fears as I always come away from appointments forgetting to ask something or not asking that follow up question.
Also, and this is my experience, I found my son sensed when he felt something was wrong and in hindsight I wish I had communicated more openly with him and gave his the opportunity for him to say his fears, thoughts and questions. I could then have supported him better.
Blood tests can show so many things or not.
Please have some treats together and let us know how you get on.
How are you doing? This sounds like a really difficult time for you and your son, and it’s so encouraging that you’ve reached out on here for support. You’re doing absolutely the right thing trying to equip yourself with the necessary information.
Nichola and Erica have both given some really good suggestions, and hope this was helpful to you. And as they said, our Support Services team are also always here if you would like to talk anything through further with one of our team. Our blood cancer support services will be available throughout Christmas & New Year 10am-4pm on 0808 2080 888, except for bank holidays and weekends. Outside of these hours, if you’d like to leave us a message, we will get back to you as soon as we can.
@Boo have you been able to speak to the doctor yet? In meantime, I just wanted to share with you our blood cancer signs and symptoms webpage: Blood cancer symptoms and signs | Blood Cancer UK and as well as our blood cancer tests & diagnosis process webpage: Blood cancer tests | Blood Cancer UK This may also be helpful when having discussions with your son’s doctor.
Have you been able @Boo to ask your son’s doctor directly if they can rule out blood cancer? This can be helpful in terms of getting further clarity as to why they might have decided for or against any specific tests and what they have based their decisions on. It’s so important that you feel as supported and informed as possible, and we would really encourage further conversations with them.
And said above, the Support Services team and the forum are always here for you.
