Re: Question on Illness after 1 Year & Antiobiotics

[Guest guest]

ians_family wrote:

Quick question: has Ian gained weight? Have they checked his trough

levels lately? Sometimes after a year of IVIG, the kids gain weight and

suddenly the IVIG is not sufficient per pound.

Secondly, IVIG only brings kids up to a " normal " level of IgG -- they

still get sick just like the normal population and if there has been

damage to sinuses or lungs -- they may continue to be sicker than the

general population. But, because we know how long and how bad it can be

-- a lot of times we worry that they are getting " sick " again. I

panicked everytime Katy got a sinus infection -- but the difference was

that when she got a sinus infection, the antibiotics actually worked in

2 or 3 doses -- instead of the sinus infection lasting all winter.

Hopefully, this is just a temporary set back. Our kids will always have

infections - the hope is that they will be short-lived and treatable!

Oh, and Cipro was a really good choice for Katy to fight sinus

infections. It usually worked for her.

Sorry Ian is sick. Hang in there!

In His service,

Dale

[Guest guest]

I am glad to hear that Cipro worked for Katy. It makes me feel better

that it did work since the side effects sound a bit drastic

(especially that their tendons can rupture). Ian's trough levels are

checked each time he goes in for IVIG which is every 3 weeks. I think

it is so often because they do not consider him stabilized as of yet,

and are increasing regularly.

I hope that this is just a normal illness and that the Cipro helps.

Thanks so much for responding.

[Guest guest]

Hi ,

Tucker was on Cipro when he was 2yo after the abx they put him on for adenoid

surgery was not working. It definately worked well on the sinus infection, but

he had severe runs & we had to stop it early. It did work on the infection

though, since removing his adenoids was worthless!

Hope Ian gets to feeling better.

Destiny, mom to Tucker (8yo, hypogamma, asthma, etc.

ians_family <_Riley@...> wrote:

Ian has been on IVIG for a year now. He has stayed really healthy on

the 3 week cycles of IVIG until the past couple of weeks. I was just

wondering if it is normal to have a backslide after a year of tretment.

Also, have any of your children been placed on Ciprofoxacin? It is an

antibiotic for adults, but they are trying Ian on it because of his

allergies to some of the antibiotics, and his system did not respond

to the series the just tried. If your child has been on it how did

they do (ie reactions, etc.).

Any information would be very appreciated. It is just hard to see him

so sick again I guess.

Thanks so much,

(mom to Ian (9 1/2 years) - CVID, asthma, lactose intolerant,

severe allergies (meds, foods, enviornmental, etc.)

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[Guest guest]

>

>

> Also, have any of your children been placed on Ciprofoxacin? It is an

> antibiotic for adults, but they are trying Ian on it because of his

> allergies to some of the antibiotics, and his system did not respond

> to the series the just tried. If your child has been on it how did

> they do (ie reactions, etc.).

>

>

Hello! My 3 yr old Jake has been on Cipro several times (it's very

expensive) or dr is at the point that they " Double treat " Jake with

antibiotics our choice now is Cipro and Augmentin or Cipro and Biaxin.

He is treated for the constant sinus issues and it seems that he

responds the best to that treatment...his reactions have usually been

the upset stomach and loss of appetitie....not to forget the reaction

of kicking and screaming when he see's me coming with the bottles.

Jake has been on IVIG for a year now and our immunologist still wants

him double treated with antibiotics and for at least 21 days during an

infection our immuno does not think that the 10 days are enough..so I

guess what I am asking is how long was this series? he may need a

longer series. By no means am I saying how your son should be treated

I am just saying what seems to work for us! Hope this helps.

[Guest guest]

Jack's prophylactic antibiotic is bactrim but when he has

breakthrough infections he's been on zithromax and omnicef, but when

those don't work or if he's really ill he goes on Cipro. Usually

it's a sinus infection. He also gets double treated, basically

needs to be on them twice as long as everyone else. the only problem

he's had with it has been diahrea. it happens with all the meds but

it wass worse with cipro. After the first week it usually

subsided. He loves the taste of it though! I was concerned about

the possible side effects and the fact that it wasn't for the under

18's. Plus the fact that I had to avoid giving him antacids (which

he was needing) for a couple hours before and after because it can

cut down the drug by 90%. But in the end it was worth it.

I too think it's a good idea to look into longer treatments. Jack's

first few infections never cleared completely until he went on cipro

X2. He goes back on bactrim after finishing but within a 2-5 days

he's got an infection again. It wasn't until they switched him to

double length treatments that it really cleared up. Now that we do

that everytime with omnicef or zithromax he hasn't had to have the

cipro. Our PID kids just don't respond as well or as fast to

treatments for all sorts of things. Antibiotics, asthma treatments

or whatever else is needed and we just have to be a bit more

agressive.

> Hello! My 3 yr old Jake has been on Cipro several times (it's very

> expensive) or dr is at the point that they " Double treat " Jake with

> antibiotics our choice now is Cipro and Augmentin or Cipro and

Biaxin.

> He is treated for the constant sinus issues and it seems that he

> responds the best to that treatment...his reactions have usually

been

> the upset stomach and loss of appetitie....not to forget the

reaction

> of kicking and screaming when he see's me coming with the bottles.

> Jake has been on IVIG for a year now and our immunologist still

wants

> him double treated with antibiotics and for at least 21 days

during an

> infection our immuno does not think that the 10 days are

enough..so I

> guess what I am asking is how long was this series? he may need a

> longer series. By no means am I saying how your son should be

treated

> I am just saying what seems to work for us! Hope this helps.

>

[Guest guest]

In a message dated 11/11/2005 10:51:39 PM Central Standard Time,

shelli_shell@... writes:

> Plus the fact that I had to avoid giving him antacids (which

> he was needing) for a couple hours before and after because it can

> cut down the drug by 90%.

I'm glad you mentioned this. There are several abx that are less effective if

taken with antacids and also some that can't be taken within two hours of

iron supplements.

As PID parents, I'm betting most of us are pretty conscientious of reading

the materials that come with the abx. But I think most other people do not! I

was being a know-it-all when my neighbor mentioned an antibiotic she was on and

I told her about the antacids and iron, but it turned out to be a great idea

(to be a know-it-all) because she had not read the insert -- the info really

helped her.

(mom to , age 6-1/2, dairy intolerant-related GERD -- currently

has polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

other defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)

[Guest guest]

In a message dated 11/10/2005 12:33:39 PM Pacific Standard Time,

_Riley@... writes:

Also, have any of your children been placed on Ciprofoxacin? It is an

antibiotic for adults, but they are trying Ian on it because of his

allergies to some of the antibiotics, and his system did not respond

to the series the just tried. If your child has been on it how did

they do (ie reactions, etc.).

___________________________________________________________________________

Hi ,

has taken Cipro a few times with great results. He has many

antibiotic allergies, so it just became necessary to add a new med to our

arsenal. I

don't even recall any side effect he experienced while on it. I did have his

Ped tell me that it is only supposed to be used in children ages 12 plus. I'm

not sure how accurate this is...it was his old Ped.

Sandi, Mom to , age 12, CVID

[Guest guest]

Thanks to everyone who responded. Ian is slowly responding to the

Cipro, but at least he is responding. It is reassuring to see that it

has worked for so many other children. The pharmacy really gave us

and the doctor a bad time about putting Ian on it. Ian also has many

allergied to antibiotics which doesn't help things at all. He went

through a full extended series prior to the Cipro, and will now be on

the Cipro for a minimum of 14 days. We are crossing our fingers that

it knocks the infection down.

Again, thanks to everyone who responded.

[Guest guest]

I am so glad to hear Ian is getting better, even if slowly.

I am all for pharmacist looking out for people but if it is explained

that someone has PID and they require extensive and special treatment

then they should be helpful and respectful. Are you going to go back

to that place? The last thing any of us need is to get grief from

someone about or kids.

I love the Walgreens that we go to, they all know Jack and understand

his situation. The first time he was on it they explained the risks a

little more carefully than with the other meds but they knew why he

was on it. Most times when I go in they ask how he has been doing.

They get quite a few phone ins from his immunologist and the doc has

even said he's explained jack's case to them.

>

> Thanks to everyone who responded. Ian is slowly responding to the

> Cipro, but at least he is responding. It is reassuring to see that

it

> has worked for so many other children. The pharmacy really gave us

> and the doctor a bad time about putting Ian on it. Ian also has many

> allergied to antibiotics which doesn't help things at all. He went

> through a full extended series prior to the Cipro, and will now be on

> the Cipro for a minimum of 14 days. We are crossing our fingers that

> it knocks the infection down.

>

> Again, thanks to everyone who responded.

>

>

>