[Hatty]

Hi there

I think I'm probably being paranoid, but where better to be so than here

My 22 month daughter has been diagnosed with HMS/EDS type III (due to hypermobility, joint pain, exhaustion etc) but due to my lupus we are keeping a 'close eye' her. One of the things that they asked in the appt was does she have an unexplained high temperature often. I didn't answer it properly I think but basically, the answer is yes. After two busy days (mainly a 4hr hosp appt ) she yesterday had a fairly high temp and was very tired but no cold or anything, and is eating ok (just like me in a flare!). No one else in the family has had a bug recently. She also has mouth ulcers.

Do you think I should be worried? My lupus didn't really appear until I was 11 so don't know about this age. Should I contact the doctors or just keep a record? They told me there was no point doing a blood test for ANA yet as she's too little for the results to be conclusive.

Slightly worrying or paranoid mum? What do you think?

xHatty

 

[Lily]

Hi Hatty,

No I don't think you are being paranoid, she's your little girl and you feel something is not quite right. Has she had other occassions with a raised temp like this and are they occurring regularly? Sure kids do get temps which rise quickly and then go away just as quickly, but it pays to keep an eye on it because it shouldnt be happening with too much regularity.

The mouth ulcers sure arent normal for a child that age though, least not with my two now grown children?

I think it's worth a mention for sure, that way you get it documented and they can give you their thoughts on it.

sending hugs, lets hope these two things are somehow a coincidence occurring together :hug:

love
Lily

 

[greenhaggis]

Hi Hatty,

I'm glad you have a dianoses finally! Is she going to have physio to help keep muscles strong!

I feel like you too! I took my 3rd child to docs 2 wks ago as he was and still is having unexlained high temperature. When we visited the docs he had fluctuating temps for 3 wks(when I think back it was even longer)! He did have lumpy rash in arm creases which he gets every winter but also had bright red cheeks (thought it was slapped cheek) recently (for 2wks) which then just left a red ring around his cheeks. Slapped cheek (paraovirus I think it is called is contagious 20 days prior to cheek rash appearing and symptoms are not always noticeable. The doc inspected him ear/nose/throat and looked at rashes - answer he has something viral going on but can't name it! I asked him (strange I had to ask, he did not volunteer info) how long he shoud suffer high temps with a virus and was told normally 1-2 weeks okay, 3 occassionally happens, 4wks should get checked again. When I think back my 5 year old boy has had high temps. for over 5 wks and does mention the odd headache, pains in legs and sore tummy. Due to this I am taking him to docs on Monday, temperatures or not to ask why all this is happening and hope I'm not going to be fobbed off with 'its just a virus - it is the season!'
On the way out I did say I do worry as I have SLE, but the docs did not even twich an eyebrow!

 

[Maia]

I think the signs are pretty much the same in a youngster, it's just harder to know what they are feeling because they can't express it at 22 months old. My daughter (almost 3) has gotten ill fairly frequently, often getting fever for 2-5 days. Her last fever was about 5 months ago (thankfully - that one was a doozy!). I think she probably had fevers about 4-6 times a year the first 2.5 years of her life.

For me though, I'm quite convinced these were due to infection (ear) or virus. I have not noticed any other things that are more concerning like long term lethargy, mouth ulcers, or rashes suspicious for lupus (she had roseola and another clearly viral rash that went away within a week) . I have not noticed her being in pain or complaining about pain anywhere. Your situation sounds different than mine, and definitely more worrying.

I'm surprised the doctors don't want to run any sort of tests on your child though (only due to her age?). If the symptoms continue and worsen, you may want to seek a second opinion. There are many articles about pediatrics and lupus/autoimmune disease, and they don't seem to imply that youngsters shouldn't be tested solely due to their age.

 

[greenhaggis]

High fevers and swollen glands!

Hatty,

I've just taken my son for another check-up at the doctors re. the high fevers and swollen glands (just my luck no sysmptoms today). GP checked him over including feeling liver, kidneys etc. then said nothing is showing up.
She did say that it was important to keep an eye on him and see how he fairs during the Summer months when virus are around less! She also said that even though he may be suffering high temps and swollen galnds that its more likely that he has a strong constitution that is constantly fighting viruses and that is why symptoms are not developing further. Just hope he does not have my constitution. Take care and if you need to chat further and share your worries please contact.

Lesley

 

[greenhaggis]

High Fevers and swollen glands! "UPDATE"

Hatty,

I've just taken my son for another check-up at the doctors re. the high fevers and swollen glands (just my luck no sysmptoms today). GP checked him over including feeling liver, kidneys etc. then said nothing is showing up.
She did say that it was important to keep an eye on him and see how he fairs during the Summer months when virus are around less! She also said that even though he may be suffering high temps and swollen galnds that its more likely that he has a strong constitution that is constantly fighting viruses and that is why symptoms are not developing further. Just hope he does not have my constitution. Take care and if you need to chat further and share your worries please contact.

Lesley

Hi again,

I just thought I'd pass this on! I took my youngest child for his Paediactric Consultant appointment last week. I had to tell her I had a diagnoses of Lupus. She asked me how we all were as a family and I mentioned what one GP's comments were re. temp/glands for my 3rd child - she raised her eyebrows immediately and frowned then said he does need to be followed up sooner rather than later, that it is not normal. She also asked whether all my children had been tested for auto-immune conditions as we have such a strong family history. She thinks that blood tests should be done as a precaution and to put the familys minds as ease.

How are things with your daughter and yourself!

Love Lesley