Introductory Post

[Guest guest]

When we were trying to figure out what is going on with Sami, one of the

pediatritions mentioned Dange(I don't know how it is spelled) Fever. He asked

right away if Sami had been out of the country. He said that he has seen that

in foreign countries, it has many of the same syptoms as . You may want to

look at that.

Also, when they are young is the time to do many of these test. Most of the

kids will not remember them. How many things do you remember when you were 28

months old?

Trish

Kerensa Cracknell <kerensacracknell@...> wrote:

Hi,

My name is Kerry Cracknell and I'm married to Bob Cracknell. We have two

children - (23 months) and Isabel (5 months). We're English, currently

living in Singapore (where Isabel was born) - before this we lived in India

(where was born).

has been suffering from recurrent fevers since he was about 8 months old

and until very recently we've been putting it down to those kiddy viruses that

most children seem to pick up from playgroups and nurseries! However, he's just

had a bad few weeks - at the end of January he had an unexplained fever for a

few days, then a week later he got tonsillitis; a week after that he tested

positive for mycoplasma (both the latter were treated with antibiotics, which he

responded to) and then he's had two more unexplained fevers in the last two

weeks, so we've been back and forward to the doctor, at our wits' end. Yesterday

his paediatrician told us about Marshall's syndrome/ and we did a little

research on the Internet to find out more.

We're still in the early stages of a possible diagnosis - we need to

monitor the pattern a bit more over the next few months, but we feel that from

what his paediatrician has said, and from reports we have read on the Internet,

his symptoms are very consistent with - i.e. recurrent high fever, fairly

regular (around once a month), usually with a touch of pharyngitis. He has had

no mouth ulcers, abdominal pain, serious vomiting (he tends to gag and retch a

little at the sight of food when his fever is high, but that's all) or diarrhoea

- so far. However, no further tests have been done yet to rule out any other

disorders such as Hyper-IgD or FMF, etc. We feel that it might be best to wait a

little while and see how things develop before we submit him to a lot of tests,

which could be traumatic for him as he's still so little!

Usually he's poorly for 2-4 days with his temperature going up and down

irregularly - when it's down he's fine, running around like a lunatic and

completely his normal self, but when it's up he's off his food, very clingy,

subdued and doesn't want to play or read as he usually does. As soon as the

episode is over he's well again - eats normally, plays and develops and grows

perfectly well. His growth charts are fine and his development is normal - he's

a very bright, active little boy usually, who loves going to the park, playing

and singing music, reading books, going to Little Gym and playschool, and

messing around in the swimming pool.

I'm hoping we can do something about these fevers as I hate seeing him so poorly

when it hits, and it's affecting the whole family through lack of sleep, time I

can spend with baby Isabel, and time with my husband - we spend a lot of time

when we're without the children talking about Josh's fevers and it's weighing on

our minds a lot. At least he bounces back quite quickly once it's all over, and

now that we know it's likely to be , we don't need to keep rushing to the

doctor every time his fever is high.

Looking forward to hearing from other parents!

Kerry Cracknell

Mrs Kerensa Joanne Cracknell

3, Farrer Drive #01-04, Sommerville Grandeur , Singapore 259276

+65 6404 7640 (home)

+65 9009 1075 (mobile)

kerensacracknell@...

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[Guest guest]

Hello. My name is and I am a 36 year old female from Upstate NY.

I was recently diagnosed with Type 1A CMT after complaining of chronic

achilles tenditis for 2+years. I was convinced there was

something 'more' than just achilles tenditis.

I am very active and hope to be able to enjoy a similar lifestyle for

a very long time. I have a 2 year old and another one the way (via

adoption) that I have to keep up with.

I am hoping to be able to learn more about CMT, coping strategies and

exercises that will help keep this disease in check.

Thanks in advance for your support.