So many this usual?

Hi, my 3 year old daughter is under investigation for possible autoimmune /inflammatory condition. She has all the "common" symptoms of lupus...fatigue, sore, achy limbs, red burning itchy hands, numb hands and feet, itchy skin, redness and rash (comes and goes) on her face. Also enlarged lymph nodes. She also has very high fevers with no underlying cause, wakes up shaking and shivering uncontrollably from her sleep often. Last night while taking to me and her dad she suddenly stopped, totally "zoned"out for about 30 seconds....she was aware something had happened afterwards but was really scared as we were. She was fine after about 10 minutes of cuddles and reassuring. Is this another symptom to join the others as I'm really concerned about brain involvement? Already numb hands and feet would suggest nervous system involvement. Sorry for long list! But I can see the extent of everyone knowledge and experience on here and would really value feedback. Thank you!

11 Replies

oldest • newest
  • One of my children has Hughes Syndrome, the other Systemic Lupus and Hughes Syndrome, this can at times be missed in children. Worth checking even if just to rule it out. MaryF

  • Thank you MaryF. I have never heard of Hughes syndrome so will look into it. M

  • [quote="Mddpsmek"] Last night while taking to me and her dad she suddenly stopped, totally "zoned"out for about 30 seconds....she was aware something had happened afterwards but was really scared as we were. [/quote]

    Possibly "absence seizure" ...

    [quote=" / Absence_seizure" ] The hallmark of the absence seizures is abrupt and sudden-onset impairment of consciousness, interruption of ongoing activities, a blank stare, possibly a brief upward rotation of the eyes. If the patient is speaking, speech is slowed or interrupted; if walking, he or she stands transfixed; if eating, the food will stop on its way to the mouth. Usually, the patient will be unresponsive when addressed. In some cases, attacks are aborted when the patient is called. The attack lasts from a few seconds to half a minute, and evaporates as rapidly as it commenced. Absence seizures generally are not followed by a period of disorientation or lethargy (post-ictal state), this is in contrast to the majority of seizure disorders. [/quote]

    Could just be a one-off if they had fever at the time.

  • a_Scot;I was thinking the same as you.My 2yr.old Granddaughter has a rare form of epilepsy.In my opinion it sounded like it could possibly be a seizure. I'm by no means a Dr.or Specialist.Just a loving Nana who researched everything possible on seizures.I sure don't want to scare you!Though I'm sure if you posted you are looking for support&opinions from caring Lupie's.My adorable Granddaughters seizures started a wk.after turning 1.They were not what most would think of when they hear seizure.We were aware of the seizures we saw,we monitored 24/7.Little did we know,she was having hundreds/day! I would request an EEG,where they can look for abnormal brain waves.This was how we found out how often seizures were occurring. Unless of course you already have answers. Seizures can happen w/Lupus.My support&love pours out to you.When health issues are happening to your child it's extra scary.Always better to be safe then sorry.W/epilepsy the sooner treatments are started the outcome is usually better. GOD BLESS& PLEASE KEEP US UPDATED. Your family is in my thoughts&PRAYERS!(Honestly!So many people say this w/out following through:( If I say it I do mean it. I have seen the power in PRAYER+!)Sorry,if others don't agree w/proclaiming my faith.Faith gets me through the devastating effects of chronic illness.(Call me, "Chatty Kelly":)I'm having a much-needed break from disabling symptoms that haven't let up in over 1.5yrs. Living every second!!

  • Hi Mddpsmek,

    You don't mention who is treating your daughter. I would have thought that auto immune/ inflamatory disorders are pretty rare in young children. If your child is being seen by a consultant I would phone their secretary on Monday. If she is not being seen by a specialist in a large children's hospital it might be an idea to ask for a referral to one.

    Many of the auto immune inflamatory diseases share common symptoms, her symptoms would fit with a vasculitis as well. You are right to worry about CNS involvement. I hope you manage to get a diagnosis soon.

    Best wishes.

  • Hi Keyes, we are being seen a consultant at manchester childrens hospital. I agree that autoimmune/inflammatory disorders are rare in kids but consultant is of opinion that there is an inflammatory process, so it could be vasculitis I presume? at point of looking for cause and many of the tests done are immune system related. Only problem at moment is our consultant has gone off sick, some of tests done three weeks ago have come back abnormal (have not been told which ones) but "stand in" consultant is unwilling to discuss case as he has not seen my daughter and doesn't know her history! I do intend to ring on Monday as worried about new symptom but also not knowing test results is an ongoing worry. Have abdominal ultrasound booked for end of march. Thanks for your advice, I really appreciate it. M

  • Hi Mddpsmek,

    As a parent myself I totally understand your worry. If it is a vasculitis then Vasculitis UK have a great helpline and are in touch with all the UK specialists.

    I hesitate to say this as I don't want you to think I am telling you what to do but once you get a diagnosis I would find out who the UK specialist is and push for a referral, even if it is for shared care. Auto immune diseases are so complex that it pays real dividends to be treated by the best.

    I hope that things improve for your daughter soon.

    Best wishes

  • I'm sorry I have no advice, I just wanted to say how sorry I am for the little one, your heart must break when you see her suffering so. I hope you soon find out the problem so you can at least start a treatment for her.

  • Thanks everyone for all the advice and support. I have been in touch with our consultant's secretary who told us that he is not due back now until 31st march. So I the called our GP who managed to tell me some of the results. ESR, CRP, Platelets and IgM are all raised. He wasn't able to access all and some were too specific for him to interpret but at least we have been given some. Now we just need to find out what this all means! He has contacted our consultants colleagues to see whether either of them are willing to see her sooner esp in light of seizure on Friday. Apparently that in itself warrants a paediatric referral. Thanks again for advice, it is really appreciated!

  • I'm not sure how medical issues are handled in the UK. My Granddaughter was treated@Children's Hospital Milwaukee,Wisconsin USA. After having 6 seizures in my arms we rushed her to the ER@Children's where she met the criteria for admission.My son-in-laws Uncle works for a major Pharmacudical(sp?) Co.& miraculously managed to get to the head of Pediatric Neurology@Children's! Dr. Hecox had over a 1year waiting list for taking new patients.Due to the rarity of her form of epilepsy he instantly took her case.After testing received a diagnosis of,Infantile Spasms.Time is of the essence w/Infantile Spasms!(W/seizure meds,is @1yr.seizure free:)Making excellent progress w/this horrific disease! What I'm trying to get@is the end of March is too long to wait.Do whatever you need to do!

    (Once again,SORRY my replies have been so long! This validates to me how lonely chronic illness can be.Especially,when you're too weak to even talk,write, etc.Topping it off w/severe brainfog&nothing making much sense comes out! GOOD LUCK~

  • Hi Mddpsmek,

    Have been thinking about you and your daughter. Glad to hear that you managed to get some info from your GP and I hope that the other consultant will see her soon.

    ESR and CRP are very non specific indicators of inflammation,the answers will hopefully be in the other investigations.

    Best wishes


You may also like...