Fevers haven't stopped after T&A

[Guest guest]

Hi Everyone,

Its been a while since I posted. My son, Austin (3yrs) has been

suffering from for about 2 1/2 yrs now. He was finally diagnosed

in May and had surgery (T & A) shortly after. We never used the steroid

approach because I was told that his best option was the surgery. Dr

Greg Licamelli from Children's Hospital in Boston was the one who

performed the surgery. He was wonderful.

About a month or so after surgery he was seen by a hematologist for

some routine bloodwork (he has suffered from anemia, and neutropenia)

and he showed a drop in his neutrophil counts again. It was apparent

at that time that whatever he was suffering from was not completely

cured. I have been scouring the internet and talking to as many

doctors as possible trying to find a correlation between the low

neutrophil counts and . Until yesterday, I had been told there

was none.

I met with the head hematologist at UMASS Memorial in Worcester

yesterday and to my surprise his med student happened to be very

knowledgeable in . He comes from Israel where he studies under a

expert (Shai Padeh). He was very interested in my sons case

because it was the first that he has seen in the U.S. Apparently,

is very common in Israel. We discussed my sons case in detail

and he then printed out a case study that was done by Shai Padeh, MD.

Interestingly enough, neutropenia IS a feature of , and mimics a

genetic form of it called cyclic neutropenia. Fortunately, my son has

already had the genetic testing for cyclic neutropenia and it was

negative.

Now, because he has low white cell counts during his cycles,as well as

recurrent viral infections, steroid use is not recommended because it

further suppresses the immune system. We discussed using Colchicine.

It was explained to me that this drug is used primarily for people

with gout and can cause G.I. problems. The hematologist was not too

familiar with it and was going to research it some more before going

ahead with it. How many of you have used this with your children? What

does it do? How does it work with ? Have your children had any

side effects to it? The med student was not very familiar with it either.

Also, it seems that my sons spleen is slightly enlarged. This was

first recognized during a " sick " visit last week and again when he was

examined yesterday. Has anyone else experienced this?

One of the biggest problems I am having right now is with daycare. He

is constantly sick and his cycles have now moved closer together (3

wks instead of 4) making it almost impossible to have any normalcy.

The dr suggested finding a home-based daycare where he would be less

exposed or finding someone to watch him privately, but reminded me

that it will just worsen once he is school age (which isnt too far

off). I am a single parent so the stress is magnified because I am the

primary caretaker and do not have someone to share the responsibility

with. Im emotionally and physically drained and from what I have been

told there is no end in sight at this point. Some have said they will

grow out of it, but others have said there are older children still

suffering from it. For those of you who have older children with it,

how do you cope? Any suggestions would be greatly appreciated...

Sorry for writing a " book " . I am just hoping that someone, somewhere,

will have some answers...

Thanks to all,

(mother of Austin, 3yrs)

[Guest guest]

,

I'm sorry to hear that the T & A did not work for Austin. I

unfortunately don't have any advice but wanted you to know that I

also am a single parent so I know what you are going through! My

daughter also seems to get sick with everything. It's very

frustrating!

I hope you are able to find some answers! Good Luck!

Suzi (mother of Payton, 4 yrs)

[Guest guest]

Hi ,

Wow, how overwhelming for you! Good news however, is that the right

people seem to be appearing in your life! How wonderful is that?

That seemed to be our experience with Damian. For some reason our

day care provider (who did foster care and day care for over 30

years) had a child with in her care at one point. So she was

familiar with Damian's diagnosis and knew that Damian was not

contagious, but his poor body was doing it's own thing. He started

fevering at 3 years of age and we just had the T/A at 5 1/2 years of

age. He missed a month of school last year (he was in special

education) from being sick. We had to switch day cares and I brought

from literature along and told my day care provider Damian is not

contagious. She was just fine with Damian sleeping on her couch or

floor all day long. It broke my heart to have to leave my sick one,

but as everyone knows life with still goes on even though it

really limits everything. Luckily for us, my mom is retired and was

able to help us a lot besides the numerous days my husband and I took

off of work and the times we had to leave him at day care anyway. I

wonder if you are connected to a church if one of the retired folks

from there would be willing to sit with your son during his episodes

or reach out to a church for some help. It will all come together

for you in time. You sound like you are doing an amazing job! I

don't know how single parents handle the challenges of " normal " stuff

without putting and other medical things on top of that.

Sounds like you have a lot of determination in you! I wish I had

something to offer you! It would be nice if we weren't all spread

out across the countries! Best wishes, Lynn

[Guest guest]

hi there. my son is going on 15 and I'm sorry to say that it is not going to

get any less stressful i too am a single mom. you become very obsessed and

worried every day of life. all the can he do this, and should i have let him do

this knowing the sick days that follow. but one thing the love between you and

your child is so much stronger then a well child. he too is on colchicine,

he takes it pretty well. very tired on it. it's a cell splitter so it works on

a cellular level. at first it took his temps away for around three month then

slowed down to once a month but in Sept. he is back to once a week again. so

who knows how it will react on your child you just have to go for it and hope

for the best. good luck char.

[Guest guest]

Suzi,

Thank you. It feels like I am alone in this sometimes. I do

have family support but noone seems to understand the extent of the

stress and pressure I am under. Every day lately is a struggle. I hope

to find some answers too! You can bet I will keep pushing for them!

Good luck to you as well! I will make sure to post any new information

I can get my hands on.

(mother of Austin 3yrs)

[Guest guest]

Lynn,

Thanks for your support. It definitely helps to know that others out

there really do understand what it is like raising a child with .

I am going to keep pushing for answers and keep hoping I'll get them.

I will make sure to post any new information I get.

Thanks,

(mother of Austin 3yrs)

[Guest guest]

Char,

Wow! 15 yrs...How do you do it? Im only on the 3rd year and I

sometimes feel like Im falling apart. I cant imagine another 12 years

or more of this. Im sorry to hear that your son still suffers. I cant

imagine what it must be like for a teenager! How has he dealt with his

illness and missing school and things of that nature? Im not sure I

will use the colchicine. Im too afraid of the side effects. I have to

agree that I do have a very close bond with my son. Unfortunately,

alot closer than the one with my daughter. Since he started with all

of this it has taken a toll on my relationship with her and her

emotional status as well. I cant imagine what must go through her head

all the time when he is sick and rushing off the the dr's constantly.

At one point I do know that she was afraid he was dying. Thankfully I

was able to alleviate those concerns but it doesnt help that this just

keeps on going. It has really put alot of stress on the family. I just

keep hoping that someone somewhere will come up with something to help

these kids!

Thanks,

(mother of Austin 3yrs)

[Guest guest]

,

I understand completely! I also have family support but you are right

no one really understands how hard it is! Unfortunately for us we are

the minority in this wonderful group of people dealing with this. I

hate to say this but it was nice to read that someone else knows about

the added pressure of being a single parent of a child with .

Take care and if you need to vent you can always vent to me!

Suzi

[Guest guest]

Hi . Is there any chance that your baby has fmf. if so don't wait

till he is older to start the colchicine. even a very small dose can save a life

in the future. Even though the colchicine appears to not be helping, it's

stopping the buildup in his organs. You give your little guy just enough until

the diarrhea starts then drop back a dose until it stops. Hopefully you can

stop this before he is in his teens because it is so hard for my son. He misses

sooooo much school, and the harder the class the more he has attacks a viscous

circle we live in. if it is fmf a t & a will not help just take away a sore

throat there are so many ladies on the fmf group who had t & a in there childhood

and are still in the hospital every month. it seems that a t & a helps the

kids a lot until puberty in some so that could be something to check into.

the cimitdine or tagment also has helped some kids but with my son it

made him very aggressive a child i didn't even know. the singular helps some

kids. but not mine. there are some moms who swear by things and some who think

it will never work you just have to try everything to make your little one

feel better even if you are scared. trust me i was i would dwell on every thing

for a week before i got brave enough to try it. good luck to you and kiss

your little girl every time you see her and tell her you love her without bring

your son into the conversation we tend to be obsessed on the sick one without

thinking about anyone else. a big mama hug to you char.

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[Guest guest]

Hi , char here I know your son had a t & a I just got lost in the moment

so apply and disregard where needed lol......... Hugs char.

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[Guest guest]

Thanks Char,

As far as I know FMF was ruled out along with many many others. He

either does not have the symptoms of a certain disorder/syndrome or

too many " other " symptoms that don't fit. He was seen by a genetisist

in November and she was able to rule out 30 or so genetic disorders. I

actually just got a call from his hematologist on Fri. He is waiting

to hear back from the expert in Israel. He has decided not to

pursue the colchicine. Rather, he would like to discuss possible GSF

injections. It is my understanding that he would need injections every

2-3 days of this for at least 2 cycles to see if it works for him. The

most important thing right now that we are all trying to achieve, is

getting him healthy for an extended period of time. He referred to my

son as an anomaly. Something he has never seen before and it is

puzzling to everyone involved. I wont know any more til after the

holidays, but I am very reassured by his interest and attention to my

sons case. At this point we just finished a cycle of 12 days of fever.

He is still battling respiratory symptoms so I continue to use regular

nebulizer treatments to try and help him over that hump as well. Im

hoping and praying that we can at least kick this for the holidays. I

would hate for him to be sick and not be able to enjoy it with the

rest of us. Happy Holidays to all!

(mother of Austin 3yrs)

[Guest guest]

,

My daughter was diagnosed with at the age of 3. We opted to do nothing

medicinally (actually we did an alternative route, which was helpful) for

several years. Until she was 7 and the alternative route was not working

anymore. We went back to the Rheumatologist (who is extremely familiar with the

disorder) who advised us to put our child on Cimeditine. The first year she had

4 episodes and then has had none for the past 9 months (our biggest break ever

in 6 years). We asked her about the T & A, because we were just going to make the

apt. to have it done (and there is now so much research leaning towards all kids

with having them done). But, she advised us to try the cimeditine and

colchine routes, first. Since2 of her patients had outbreaks after the

T & A. So, you are not alone. She is not against T & A's, but said that each child

is really it's own individual case. I love her to death. She has not ruled it

out for us. But, she really

thinks that our daughter will not need it.

Hope this helps.... And, have a good Holiday. I know how frustrating this can

be...and how sad and alone we all feel..but, it is good to know that there are

others out there with the same issues.

Fern (mom to , age 9--- now fever free 9 months and diagnosed at the age of

3).

[Guest guest]

Hi . What is the gsf? My son too is not running the normal course of

events that is why his specialist wants to send him to the nih. I hope soon

because my sons attacks are coming almost every other day I can't get him better

even with all the med. well good luck to you and happy holidays hugs char.

[Guest guest]

Hi . What is the gsf? My son too is not running the normal course of

events that is why his specialist wants to send him to the nih. I hope soon

because my sons attacks are coming almost every other day I can't get him better

even with all the med. well good luck to you and happy holidays hugs char.

[Guest guest]

Hi . What is the gsf? My son too is not running the normal course of

events that is why his specialist wants to send him to the nih. I hope soon

because my sons attacks are coming almost every other day I can't get him better

even with all the med. well good luck to you and happy holidays hugs char.

[Guest guest]

Char,

I have included some information from a website I came across.

What is G-CSF?

G-CSF is a growth factor that is naturally produced by the body but

can also be produced in a laboratory. It stimulates the bone marrow

(the blood cell factory) to produce more neutrophils and allows these

cells to mature and be released into the bloodstream to prevent and

treat infections. G-CSF is also known by the trade name Lenograstin or

Filgrastim.

Why is G-CSF used?

G-CSF is used for children with neutropenia (low neutrophil count) to

increase their neutrophil count. It can be used after chemotherapy or

bone marrow transplant (BMT) to prevent or treat serious infections or

shorten the time the child is neutropenic.

Children with severe chronic neutropenia also have G-CSF to boost

their neutrophils. This is sometimes given every day to protect them

from dangerous infections. Sometimes children only need this to boost

their neutrophils when they get a serious infection.

G-CSF can also be given as part of a chemotherapy regime.

G-CSF is also given to children and adults before having a peripheral

blood stem cell harvest. The G-CSF boosts the bone marrow to produce

lots of stem cells and mature blood cells. After a number of days the

white blood cell count will rise and the stem cells can be harvested.

With my son having cyclic drops in his neutrophil count which seems to

correlate with his cycles, it has made him even more susceptible

to virus and infection. Although he does not suffer from recurring

bacterial infections, he seems to catch a virus every few days! This

last month he has only been healthy for about 5 days so far.

Orginally, it was thought that this treatment would be too traumatic

for him, but now I am meeting with the dr in January to discuss my

options. The thought is to give it a try and hope that it will boost

his immune system enough so that he can have somewhat of a normal

life. It all sounds great in theory but after reading about the

possible side effects, Im not so sure Ill be willing to take the

chance of making him sick. Has your son ever had any abnormal CBC's?

As in low WBC counts? Below is the list of possible side effects.

* Bone pain †" Some people have a dull ache or discomfort in their

bones. Please tell your doctor or nurse so appropriate pain relief can

be given.

* Redness/soreness at injection site †" The skin may become red,

sore and itchy where the injection is given. This will disappear once

the injections finish. Alternating the injection sites may help.

Please tell your doctor or nurse and they will advise you on

appropriate treatment.

* Abdominal pain †" If your child complains of tummy pain please

inform your doctor or nurse.

* Nausea, vomiting and diarrhoea †" This can occasionally be a

problem. Anti-sickness medication can be given.

Please tell your doctor or nurse if your child’s sickness or

diarrhoea is not controlled.

* Allergic reactions †" These are more common following intravenous

subcutaneous cannula. The reactions can be mild to severe. Signs of a

mild allergic reaction include skin rashes and itching, high

temperatures, shivering, redness of the face, a feeling of dizziness

or headache. If you see any of these signs, please report them to a

doctor or nurse.

Signs of severe allergic reaction include any of the above, as

well as shortness of breath. If you are in hospital and your child

shows signs of an allergic reaction, call a doctor or nurse

immediately. If you are at home and your child shows signs of a severe

allergic reaction, call an ambulance immediately.

I hope this helps!

[Guest guest]

Hi Fern,

What alternative route did you use? What kinds of things did you do to

help with the cycles when you weren't using meds? How does the

cimetidine work? The colchicine has been ruled out at this point for

treatment. I think because of the G.I. problems it can create. The T & A

has been proven to work in so many cases. My son, however, happens to

be in that small percentage that it didnt work with (at least for

now). Some of his symptoms have subsided but others remain strong and

his fevers still come like clockwork (although they do not go as high

as before), so I would have to say that having the T & A was not a total

loss. Im just hoping that whatever course of treatment we choose next

will have some effect.

(mother of Austin 3yrs)