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Does anyone have any ideas?

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Old 07-22-2005, 02:24 PM   #1
Join Date: Jul 2005
Posts: 4
Unhappy Does anyone have any ideas?

Hi everyone,

I am very worried about my daughter who has had a variety of symptoms for the last two and a half years. My Daughter will be four in november and is currently getting over another strange illness. This may be long so please forgive me and I will try and keep it short.

She was born with a small hole in her heart which closed up on its own after 6 months ( not sure if relevant), She was an extremely colicky baby and this continued untill she was 7 months old with mild dioreah. She has had many many infections that seem to go back to back and everyone commented that she was always ill. Doctor always said its viral go home etc. By the time she was 18 months she has had 5 ear infections, croup, gasterenteritus 3x, numerous coughs and colds, and flu etc. and after a particularly bad bout of dioreah she was hospitalised for two days and then again 2 weeks later with a fever of 40 degrees of unknown origin. She came home and was then hit by a kidney infection 2 weeks later and was in hospital for nearly 2 weeks as they could not control it.
since then she has had four more mild kidney infections and countless other infections and any virus going. She had her first bout of vaginal thrush at 2years old and since then she has many reacurrences and the doctors said she will grow out of it.

This last 6 months things have got worse and she has had numerous attacks of being very poorly with very high fever and no other symptoms at all. I have kept a diary for the last year and she has had 6 episodes where her fever has got to 42degrees with no other obvious symptoms.

In the last 2 months she has complained every day of pain in the back of her knees and crys if she has to walk up stairs, hills and there are days when she refuses to walk at all screaming that it hurts and pick me up. Doctor says she playing me up. she has no swellings and she has good days and bad days. She also complains of tummy ache all the time and occasional chest pain.

she also has the following symptoms:

frequeant high grade fevers non responsive to medication 41-42.5
persistant low grade fevers 38
abdominal pains,
pain in legs
occasional back and chest pains
3 nosbleeds in last month
achy and tired
weight loss
loss of apetite and refusing to eat for days
looks pale and washed out
some days she is very flushed at top of cheeks
frequent viral rashes as doctor puts it
repeated infections
non productive cough
very clingy and irritable
headaches are getting more frequent
frequent dioreah
started wetting bed after a year dry ( 3x a night large amounts)
frequent vaginal thrush
mouth ulcers
kidney infections
occasional irreguler pulse
extreme tiredness

she will have 4 days where she seems perfectly well with only slight leg and tummy pains, followed by 42 degree temp with no symptoms, followed by well, then all of above symptoms etc. It seems to go round in cycles and she never has more than 4-5 days where she is well. She has become very sad and withdrawn at times yet on good days she is totally the oposite.

She was admitted to hospital 3 weeks ago with very high temp again and they said virus and told me to take her home the same night. Her temp was 42, yet the next day it was 36.9 all day with no medication and was perfectly well, the day after she was starting to get ill again and then two days later she woke with severe dioreah and was screaming in agony. The following day her temp, apetite and poo was all normal again. I just dont get it! how can she be so ill one day and yet so well the next?

She has lost so much weight she looks gaunt and has dark circles under her eyes. I have been to the gp so many times and they keep saying the same, that im worrying about nothing. I have demanded an immune system status check and have finally been referred to a peadiatricion but I am worried that they wont find the cause and my daughter will have to live with this forever.

She also has developed three brown pigmented marks on her body simuler to a tea stain birthmark, two apeared overnight and the other the following week. one is small and one is the size of the top of a tea cup. they are on her shoulder, arm and thigh.

She had routine blood tests which were normal, and her urine tests are clear also. Every time she has a fever I take a urine sample in to be tested and 9 out of 10 times they are clear. I know there is something very wrong with my child and she is failing to thrive, she has fallen below average in height and weight and its breaking my heart to see her this way. She misses so much nursery and I dread to think of all the school she will miss when she starts in september.

3 months ago she would go to bed at 7pm, wake at 6am and need no naps. now she goes to bed at 7pm, I have to wake her at 8 am, if I leave her she will wake at 10am. she then has an hours sleep from 8.30-9.30am. goes to nursery for two hours less than she used to as she gets so tired, yet when she comes home she still falls asleep for around 3-4 hours again. This cant be normal!

I asked my gp about lupus and he said there is no way a child of her age can get it, yet it is the only thing I can think of that brings these symptoms.

does anyone have any ideas or anything that can help me? I have no idea how long I will have to wait for a hospital appointment, yet I am so scared that they are missing something very serious.

thankyou and so orry for the long post

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Old 07-22-2005, 02:36 PM   #2
Join Date: Jul 2005
Posts: 4
Re: Does anyone have any ideas?

oops, and I forgot to mention that she also has enlarged lymph glands in her neck.

thankyou for taking the time to read my posts.


Old 07-22-2005, 11:11 PM   #3
Join Date: Nov 2004
Location: Louisiana
Posts: 62
Diva10 HB User
Re: Does anyone have any ideas?

Alison, I feel really bad for you and your daughter, after reading your post, I went online and looked up some stuff .

But before I tell you what I looked up I want to ask if you really want to know because it was not that good, so please post again and let me know,

Last edited by Diva10; 07-22-2005 at 11:16 PM.

Old 07-23-2005, 12:41 AM   #4
Join Date: Jul 2005
Posts: 4
Re: Does anyone have any ideas?

Hi Diva,

Thankyou for replying to my post, any info is very much appreciated thankyou. I have done some research on the net myself, but she has such varied symptoms that I kinda jump from one to the other and then back to Lupus. I knjow many of the symptoms match lupus but then there are symptoms of lupus she doesnt have like hair loss and reynards etc. so I just keep going round in circles.

so any ideas anyone may have I will research well and will be better armed for the peadiatricion appointment.

manymany thanks


Last edited by WORRIEDMUMUK; 07-23-2005 at 12:42 AM.

Old 07-23-2005, 09:02 AM   #5
Join Date: Jul 2004
Location: North Central Pennsylvania
Posts: 814
valleygurl HB User
Re: Does anyone have any ideas?

Alison, You definately have every right to be worried about your child especially with all the symptoms and illnesses your child has been displaying. I know that if i were in your shoes i would start being very demanding about having your child seen by specialists as well as having every test known to man done to get some definate answers.

I would recommend getting a referral and start by having your child seen by a Pediatric Infectious Disease Physician.

Good Luck, and remember, you are your childs only advocate and she doesnt deserve to have to feel or be sick all the time. As a parent i would open my mouth big, wide, and loud and wouldnt stop until someone listens to me!!!!


Old 07-23-2005, 08:53 PM   #6
Join Date: Nov 2004
Location: Louisiana
Posts: 62
Diva10 HB User
Re: Does anyone have any ideas?

WORRIEDMUMUK, well you seem to be ready for her visit to a Pediatric Doctor, just demand that they run all test for everything,
Good Luck

Old 07-23-2005, 10:14 PM   #7
Senior Veteran
Join Date: Nov 2004
Location: Winnipeg, Canada
Posts: 943
kitkat77 HB User
Re: Does anyone have any ideas?

Cafe au lait spots (brown pigments) are common in Neurofibromatosis. This rare disorder can have benign tumors grow externally and internally, and symptoms vary with each individual. Has she been checked for this?

Old 07-24-2005, 03:46 PM   #8
Dog lover
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Join Date: Apr 2005
Posts: 40
Dog lover HB User
Re: Does anyone have any ideas?

My cousin has that ,the thing that causes the cafa oley(bad sp.)She has to have check ups often.If tumors are internal there is no telling what symptoms this might cause.I am not sure regular blood test would show anything up,unless the Dr. did specific test for it.Good luck and i hope she feels better soon.

Old 07-25-2005, 04:52 AM   #9
Join Date: Jul 2005
Posts: 4
Re: Does anyone have any ideas?

Thankyou everyone who has replied to my posts,

Since my first post my daughter has been exceptionally well with her best day yesterday ( she ate three meals) and snacked to her hearts content. I was beginning to wonder what was circumstantial, ie were the nosebleeds down to sneaky picking, or the pigment marks birthmarks that were always there, but darker in the sun and maybe my child was just unlucky with infections and I was being paranoid and over dramatic. I looked up the neuro fibromatosis and as that is characturised by 6 or more cafe au lait spots, I quickly discounted this illness.

Came down to earth with a bump this morning though as her fever is back up to 38.5 after no fever all weekend. She also has 9 more cafe au lait spots this morning that were definately not there on friday. One is around 1cm in diameter and the others are all relitively small. I also found out that neurofybromatosis disease affects height, hormonal system (she has a very hairy back) and her head is slightly larger than what I feel it should be. So I have a feeling that this maybe what she has after all but I dont know how this would account for the fevers and infections as I can find nothing in the symptoms about these. I have read that there is a link between this illness and leaukimia. I was so sure she had lupus but now im not so sure and was wondering if anyone knows if these symptoms that she has can be indicitive of leaukimia?
I was so sure she had lupus, but then again lupus is known for mimicing other diseases so now I dont know what to think. My daughter doesnt have masses of bruises and her nosebleeds are relitively small and shortlived. I always thought leukimia progressed very rapidy with frequent nosebleeds and bruising.
Does anyone know if leaukimia always shows up on a routine blood count? she had elevated wbc levels in both blood and urine, but this also indicates infection so im a little confused as to why nobody seems to be picking anything up. Do you think if I just took her down to accident and emergency and demanded they test her for all they would do it or just refer her again to wait for god knows how long. My own GP thinks its in my head so what chance have I got.

sorry for rambelling on again, in my head im so worried but I kinda have this thought that these things just wouldnt happen to my little girl (always someone elses) but on the other hand i know somethings wrong but have a feeling all tests will be clear and we will be no wiser.

thankyou all for your kind words and support, and kitkat for the neurofybrosis suggestion.
you have all been a great help.


Old 07-25-2005, 07:00 AM   #10
Join Date: Jul 2004
Location: North Central Pennsylvania
Posts: 814
valleygurl HB User
Re: Does anyone have any ideas?

Hi Alison, The Cafe Au Lait spots are one of the big indicators of the Neurfibromatosis. Did your daughter have any of these spots the last time you had her in to see the doctor? Also, Neurofibromatosis also seems to show up with a variety of symptoms that often varies from patient to patient.

I would either try and get her in to see another Pediatrician and if you cant get in right away i would take her to the Emergency and see if you cant get the doctor there to do something. But i would just keep taking her to seek medical attention until you finally get a doctor who cares and will listen to you!

Good Luck,

Old 07-25-2005, 07:37 AM   #11
Senior Veteran
Join Date: Nov 2003
Location: Midwest
Posts: 2,006
Ratatosk HB UserRatatosk HB User
Re: Does anyone have any ideas?

Ditto on the infectious disease person. Chronic loose stools could be caused by a number of things -- Cystic Fibrosis, which also causes frequent infections is one that comes to mind.

Old 08-02-2005, 11:09 PM   #12
Join Date: Aug 2005
Posts: 3
gec HB User
Re: Does anyone have any ideas?

Hi Worried,

I have a son with many problems he is now 7 and still going through all kinds of stuff. I think the key is find your daughter a good pediatric physician that will work on getting you the help you need.

My son suffered for over 2 years with muliple problems and his pediatricians downplayed things, took me 4 pediatricians til I found the right one.

Also have you had any allergy tests done on your daughter? Believe it or not a hand full of those symptoms could be food allergy related.

As far as the leg pain goes might be she is going through growing pains, believe it or not it does happen, my son had bad problems and cried with his legs too at just about age 4 or 5, turns out is was growing pains.

No matter what route you do go, be it infectious diesease Dr. or other specilists, you really need a great pediatric physician willing to go through you list of concerns and tackle things as they come up and get either a diagnosis or rule things out. I now have team meetings with my sons Dr. for the past 3 years some times monthly but at least every 3 mos. based on what care he is going through at the time.

Please update when you have tome time and let us know what happens, best of luck. I know how hard it can be when it all hits at once.

Old 08-02-2005, 11:35 PM   #13
Senior Member
Join Date: Mar 2005
Posts: 244
fifistoosh HB User
Re: Does anyone have any ideas?

Hi worriedmumuk (i am from uk too)

Go with your heart, if you know there is something wrong stick with it, ask for your doctor at the hospital to be changed (change hospitals if need be).

When my eldest daughter was 6 I thought she was dyslexic (or something) as she was struggling with her reading (stopping on everyword, even words like the). I mentioned this to her teacher but she said my daughter was fine. I got her eyes tested, they said she had a problem focusing. they gave her spectacles but it did not change a thing. we kept getting her eyes checked, her reading was not inproving. One day a different optician was on, he diagnosed my daughter with cataracts.
The reason for my rambling is to let you know

A- doctors sometimes get it wrong, and

B - Cataracts are usually connected with older people, my daughter was 8. Who is to say children can't get Lupus, just beacause its not usual doesn't mean to say it is not possible.

I am in Nort East uk. We have fab hospitals around us (at least 5 good ones). If you are thinking of moving, maybe come up here!

My prayers are with you, good luck.

Old 08-03-2005, 07:42 AM   #14
Senior Member
Join Date: Jun 2005
Posts: 226
Amberay HB User
Re: Does anyone have any ideas?

I have a 4 year old daughter who has been having only a hand full of the same symptoms. I have done some research and it all seems to lead to Leukemia. I have a cousin who had it when she was very young. I don't want to scare you, and I'm no expert. From what I've learned so far Leukemia can cause....

Recurrent infections
Body achs
Abdominal pain (does her stomach look bloated or swollen?)
Easy bleeding (nose bleeds) or bruising
Weight loss
Loss of apitite
Pale skin
A poor immune system (thrush is a sign)
Swollen lymph nodes

I don't know about the spots on her skin.

Like I said, I'm no expert! I'm still learning about the disease, because I am also a worried mother. Did your doctor give her a CBC? I'm sure that's a routine one. If I were you, I would talk to as many doctors as possible and don't take anymore "blow offs". Demand answers! From the sounds of it, there is something going on with your daughter. She deserves to get better! Please keep us posted. You are in my prayers!

Last edited by Amberay; 08-03-2005 at 07:44 AM.

Old 08-03-2005, 09:08 AM   #15
Senior Member
Join Date: Oct 2003
Location: Chicago, IL, US
Posts: 237
nicky2005 HB User
Re: Does anyone have any ideas?

I am so sorry to hear about your daughter. You should definately try and get a Ped who will take all this seriously. Did you get her checked for tuberculosis? Just a thought. Good luck!

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