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    Old 07-17-2011, 07:40 AM   #1
    worriedmumof4
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    help with my 4 year old

    hi, I really really need some advise for my 4 year old

    she has for the last 6 months suffered from chicken pox, really bad cold, 3 UTI's (e coli) and 2 bouts of tonsilitus, and in between has the same symptons approx every 3 weeks were her temp spikes, she is unwell for 2/3 days, goes off food and sleeps alot, then is fine for about 3 weeks then it happens again!

    I have been in and out of the docs till i am blue in the face but the last few bouts her temp has got really high (39oc+) she crys all the time i the night with tummy ache, complains of headaches, is really tired, pale, and conplains of headaches and at the last fever spike kept saying her leg was hurting!

    I finally got the doc to do blood tests on thur of last week and got a phone call the next day to say she was anemic and had low white blood cell count and neutrophil count. Also that if her temp spiked to take her straight to hospital!

    she is already under a consultant due to the repeated uti's and the docs faxed the results straight over to him on friday, I asked what they were going to do about the anemia and they told me her consultant would deal with it! is this normal as our gp should be able to treat this?

    please please, any advise or thoughts greatly appriciated as I am very worried about her



    thanks so much in advance

     
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    Old 07-31-2011, 01:41 PM   #2
    Pomster99
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    Re: help with my 4 year old

    Hi Worriedmum
    I will start off by saying that I am not a medical professional so I cannot give any advice. However, I am the mother of a 5 year old who has this 'regular as clockwork' fever, so I know exactly what you are going through. My daughter has had the fever 6 times this year since Feb, every 30-35 days. She also had it last year 7 times in 8 months. One good thing I can say is that it went away for 5 months between Aug 2010 - Jan 2011 so that did take away a lot of the worrying, although I do get worried sick every time it happens.

    My daughter gets temps of 40+ degrees. The temps are very hard to bring down and usually last 24-36 hrs and then she is really tired for another 24-36hrs. From start to finish it lasts 48-72 hrs, she complains of headaches, tummy ache and sore neck. She's wiped out for a few days and barely eats, then is completely fine again until the next time. I can virtually predict it on my calendar. The docs kept telling me it's tonsillitis - but I now know that sometimes it is, sometimes it isn't. (4 weeks agao she had really bad tonsillitis but 4 weeks before that, she had 40.2 degrees fever and there was nothing at all wrong with her tonsils. Antibiotics make no difference - it takes the same amount of time to recover whether she has antibiotics or not....needless to say, I now don't bother with them)

    My daughter had a blood test 8 weeks ago and had low white cells, low rbc, low hb, low hct. She also had an iron profile done which came back with an iron value of 1 (normal range 8-26). The docs put her on iron medicine. She had another "fever attack" 4 weeks after starting the iron, but we had been sporadic with the doses as she kept complaining it made her feel sick, so we'd stop for a few days and then start again. She had a repeat blood test this week and her values are all now in the normal level, albeit at the low end of the scale for everything. Her iron profile is now completely normal though - everything smack bang in the middle of the range.

    We are just waiting for the next attack to occur - it is approx 26 days since the last one. Tonight she has gone to bed with very sunken eyes, and is complaining of sore mouth and tummy ache (temp fine tho)

    I have been in and out of doctors but keep getting told that children of this age pick up lots of infections - I'm sure they do but not as regular as clockwork.

    I have been reading up on something called Periodic Fever, (or Marsh's Syndrome, I believe). The symptoms are exactly what my daughter has. There is no cure - it's not serious - but it's reassuring to know that other children are going through the same. Obviously I am not in a position to say whether my daughter or your daughter is suffering from Periodic Fever but it does seem to match up to the situation we are in.

    Sorry I can't offer any advice but I just wanted to let you know I'm in the same boat and understand your frustrations and worries.

     
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    Old 08-01-2011, 04:53 AM   #3
    worriedmumof4
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    Re: help with my 4 year old

    that just sounds like my daughter to the word!!!

    my daughter has it every 3 weeks since dec 2010 without fail, we can set watch by it

    our gp's have been a complete waste of space........... its viral just give her calpol!!! arghhhhhhhhhhhhh

    she had a bad turn again last week, temp through roof and we ended up at the hospital! again, they diagnosed her with tonsilitis (3rd time this year, 2nd time in 5 weeks!!!!) they admitted her to peads ward though due to her temp so high!

    3 hours previous our gp told us she is ok just give her calpol!!!!!!

    she has a consultant (as she also suffers from uti's) and he has now arranged open access for her and the next 'bad turn' she has to go in and be admitted for a few days so he can run tests. he is concerned it is autoimmune and he said if he finds evidence she will need referring to an immunologist

    they are also running more blood tests now. the peads doc on the ward agreed that there must be something underlying for her to get so poorly so often.

    its such a worry and i am so frustrated, hate seeing her poorly and she is now frightened of hospitals!

    hope you get sorted soon, where abouts are you based?

     
    Old 08-06-2011, 04:38 AM   #4
    Pomster99
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    Re: help with my 4 year old

    We are in Cheshire. Where are you?

    My daughter got up today complaining it hurt to swallow. She has big white spots on her tonsils and a fever It's 32 days since the last attack so exactly as I predicted (30-35 days) . My parents wanted the children to go and stay this last week but I didn't want to leave the little one and then come back home (250 miles) in case she was ill - good job I didn't. We're going away next week - all planned to fit around when we expected her to be ill and recovered again! I can't believe I can plan a holiday around her ill/recovered routine!

    I am going to get her seen by a paediatrician this time. The only reason I didn't last year was because the doc told me that it was recurring every because I hadn't give her antibiotics and it was the same infection (last year we went 6,6,4,4,3,3,3 in terms of weeks between attacks). She had a 2 week course of antibiotics and it went away for 5 months. After we'd had 3 or 4 occurrences this year (some with antibiotics) I asked for the double course of antibiotics again, which we did back in May, and she was ill 9 days after she had finished it. That's why I don't now bother with antibiotics. The docs have offered me an opportunity to have her tonsils whipped out but so far they're not even interested in seeing exactly what the infection is. I spoke to an ENT specialist and he just shrugged and said there's nothing they can do and no point taking throat swabs.

    Keep me posted how you get on with the paediatrician and also the anaemia.

     
    Old 08-06-2011, 12:07 PM   #5
    worriedmumof4
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    Re: help with my 4 year old

    hi, we are in the north east, but funnily enough I used to live in Ellsmere port!

    We are off to the hosp on monday as she is having radioactive dye injected then a special scan to check the uti's havent damaged her kidneys

    then back to the peads unit on fri for more blood tests

    i know what you are saying about arranging stuff! its my little boys birthday in a few weeks and it falls bang on her cycle for being poorly! every year i book him a big party and hire a bouncy castle etc but this year i darent!! i feel really guilty but sods law I would have to cancel it all last min. Hoping just to have a day out instead, as long as ruby ok i darent book any camping or anything just incase!

    I will keep you informed........ at least we are being taken seriously now but has taken a while and we even changed hospitals and consultant! this new one much better!

    Last edited by moderator2; 08-06-2011 at 12:48 PM.

     
    Old 08-19-2011, 11:07 AM   #6
    worriedmumof4
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    Re: help with my 4 year old

    Quote:
    Originally Posted by Pomster99 View Post
    We are in Cheshire. Where are you?

    My daughter got up today complaining it hurt to swallow. She has big white spots on her tonsils and a fever It's 32 days since the last attack so exactly as I predicted (30-35 days) . My parents wanted the children to go and stay this last week but I didn't want to leave the little one and then come back home (250 miles) in case she was ill - good job I didn't. We're going away next week - all planned to fit around when we expected her to be ill and recovered again! I can't believe I can plan a holiday around her ill/recovered routine!

    I am going to get her seen by a paediatrician this time. The only reason I didn't last year was because the doc told me that it was recurring every because I hadn't give her antibiotics and it was the same infection (last year we went 6,6,4,4,3,3,3 in terms of weeks between attacks). She had a 2 week course of antibiotics and it went away for 5 months. After we'd had 3 or 4 occurrences this year (some with antibiotics) I asked for the double course of antibiotics again, which we did back in May, and she was ill 9 days after she had finished it. That's why I don't now bother with antibiotics. The docs have offered me an opportunity to have her tonsils whipped out but so far they're not even interested in seeing exactly what the infection is. I spoke to an ENT specialist and he just shrugged and said there's nothing they can do and no point taking throat swabs.

    Keep me posted how you get on with the paediatrician and also the anaemia.

    hi there! we saw our consultant today and he is referring ruby to a specialist as he suspects periodic fever syndrome!!!!!!!!!!!

     
    Old 09-17-2011, 01:33 PM   #7
    Pomster99
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    Re: help with my 4 year old

    Hi Worried Mum, how are you getting on with your daughter? How have the investigations with PFAPA gone?

    Since I last posted, my daughter has had 3 episodes of fever - 6 Aug, 27 Aug, and today, 17 Sep - all 21 days apart. So that's now 7 times since 21st April. The one on 6th Aug was particularly bad - 4 days and 4 nights with temp at 40+ degrees. We had to buy another Thermoscan to make sure it wasn't misreading (it wasn't). We got a top temp of 40.8 degrees . We had tonsilitis & one bout of vomiting. She was given penicillin for 7 days and 11 days later it all started again. When I took her to the doc I asked for a referral to a paediatrician and I go the response "what for?" Yet again, I was told this is normal. I managed to get a referral to an ENT specialist (this was on the basis that she would be eligible for a tonsillectomy). When it happened again on 27 Aug, I took her to A&E. She had the 40+ fever but no tonsil probs. They did a a blood test and gave antibiotics (this time a new one - co-amoxiclav) for suspected UTI. 24 hrs later, her tonsils erupted and meanwhile the urine lab culture came back negative so there was no UTI. So they admitted her to children's ward for a day and did more blood tests. She had elevated CRP at 133 and 120 from the 2 tests. They now said they want to do bloods while she is well to check CRP levels. I told them I reckoned they'd have a 7-14 day window to get her at her best. Unfortunately the paed appt is on Tues and she has just come down with a fever today. I was so hoping the new antibiotic was going to be the mircacle-cure which got rid of it for good. I also saw the ENT consultant last week and he said he thought she should be seen by a paed to rule out any underlying problem (which is what I had asked the GP for in the first place).

    So the saga continues and each time I get more and more stressed about what this might be. The anaemia doesn't seem to exist at the moment.

    I hope you and Ruby are progressing OK with the investigations.


     
    Old 10-30-2011, 02:26 PM   #8
    johnmonroe
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    Re: help with my 4 year old

    Hi worriedmumof4,

    I wanted to let you know our situation and what we feel is a small recent success.
    This recently happened, but I wanted to get it out there anyway.
    Our daughter is almost 3 yrs old, and has had PFS since about 6 months.
    She was getting the fevers about every month (give or take), then at 1 1/2 years old, it seemed to get a little better by occuring every 2 months for a while.
    Well, it then went back to more frequent occurances, and up until 3 months ago
    , it happened every 3 weeks since about April. At the same time, we changed three things: we started limiting her milk to about 4 ounces per day, (she was drinking probably 3 to 5 - five ounce cups every day of regular organic 2% milk), and we added 1 extra childrens daily supplement of vitamin D4 and one extra vitamin C of 250mg every day. It's been 9 weeks, and no fever yet. I'm sure it will come back, but we are hoping that this might have helped.
    Good luck, and hang in there, that's all we parents can do!

     
    Old 10-31-2011, 10:50 AM   #9
    Pomster99
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    Re: help with my 4 year old

    Hi John

    Really good to read some progress stories with PFS. I hope your daughter keeps the fevers at bay.

    I feel like we are going backwards with our daughter - she has had the fever/tonsillitis 9 times since April 21st. We have just done our shortest cycle yet - 15 days. So this year we've gone from 4.5 weeks, to 4 weeks, to 3 weeks and now to 2 weeks. We have been giving her multi-vitamins every day for 6 weeks and a small amount of iron - it doesn't seem to have built up her immune system. She is being 'tested' for PFS...not too sure what that entails but I'm speaking with the consultant tomorrow.

    What symptoms does your daughter get apart from fever?

     
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