Re: Just got back from immunologist...

[Guest guest]

Hi susan,

also has Hypogammaglobulinemia and Mandy has the same type tof blood

work just not as bad on the levels of the IgG and IgA, so tomorrow when she

finally gets to see the immunologist ('s) then we should have an actual

diagnoses on her too. But I am guessing that they are going to run more

blood test on her since the original set was not done by them, and then they

will give us a diagnoses. Anyway, gets IVIG every 3 weeks for his and

is also on Septra which also helps since he has Vescourtial reflux. Well,

other than that, I am not sure what to tell you because this is all new to

me too, but if you need anything, let me know and I will try to help ya,

okie dokie!!

Toodles!!

, wife to Preston, mother to Shelbie 8, Mandy 3 and 14 months

Moderator of Military EFMs, IVH-Hydrocephalus, NewView and NICU Families

Registered Chat for Preemies Friends and Family.

----------------------------------------------------------------------------

----------------------------------------------

HEART-----Heart, intellect, awareness, mind, inner person, inner feelings,

deepest thoughts, inner self.

Just got back from immunologist...

>

>

>

>

>We just got back from the immunologist. was allergy tested today

>and the only thing she is allergic to is milk.

>

>She has no protective antibodies to pnenomiccoa any of the classes of

>it. Not the Hib vaccine Tetanus. Sh has some but in the indeterminate

>to measles. None to vaccicella or mumps.

>

>He wants to redo the hib and pnemoncoccal and varicella vaccine. Then

>see if she makes antibodies.

>

>He put her on rytan and amoxicllin as a prolative antibotic. If she

>still isn't making antibodies then she will start IVIG.

>

>He said her diagnosis is hpogammaglbulinmia. I thought this was an

>x-linked since only affects males.

>

>Thanks any info will greatly be appreciated.

>

>

>===

> and

>(neutropenic and immune deficent)

>mom to Evan 6, 4 and Abby Rose (almost 2)

>---------------------------

[Guest guest]

Dear Becky,

Hypogammaglobulinemia in not x-linked unless they know specifically what the

PID is, i.e. Brutons X-linked aggammaglobulinemia, x-linked scid etc. I

believe that adult onset can be male or female so therefore it would not be

x-linked as well. Many patients with CVID do not develop symptoms until the

second or third decade of life according the IDF handbook, although some

develop them very early on. It also states that CVID can also be termed

" acquired " aggammaglobulinemia, " adult onset " aggammaglobulinemia, or late

onset " hypogammaglobulinemia. Hope this helps!!

Autumn mom to Mark Cd5-Cd19 PID/ A1A, Samters, GERD

[Guest guest]

Dear Annette,

Since your daughter was able to make a titer to the HIB then she most likely

would not have the Cd5+ issue that you and I have discussed. It might still

be worth your while to have her Cd5+ checked though. Let me know what

becomes of that.

Autumn mom to Mark Cd5-Cd19 PID/ Samter's, GERD, A1A

[Guest guest]

Dear Tracey,

Allergies are a different part of the immune system so being allergic to milk

or anythingelse for that matter would not have anything to do with

hypogammaglobulinemia or PID.

Autumn

[Guest guest]

OK, dumb question comeing, but what does drinking milk have to do with

hypogammaglobulinemia? Does having this mean that you will be allergic to

foods and stuff, because is allergic to EVERYTHING including milk.

, wife to Preston, mother to Shelbie 8, Mandy 3 and 14 months

Moderator of Military EFMs, IVH-Hydrocephalus, NewView and NICU Families

Registered Chat for Preemies Friends and Family.

----------------------------------------------------------------------------

----------------------------------------------

HEART-----Heart, intellect, awareness, mind, inner person, inner feelings,

deepest thoughts, inner self.

Just got back from immunologist...

>>Date: Tue, 27 Jul 1999 12:19:01 -0700 (PDT)

>>

>>

>>

>>

>>

>>We just got back from the immunologist. was allergy tested today

>>and the only thing she is allergic to is milk.

>>

>>She has no protective antibodies to pnenomiccoa any of the classes of

>>it. Not the Hib vaccine Tetanus. Sh has some but in the indeterminate

>>to measles. None to vaccicella or mumps.

>>

>>He wants to redo the hib and pnemoncoccal and varicella vaccine. Then

>>see if she makes antibodies.

>>

>>He put her on rytan and amoxicllin as a prolative antibotic. If she

>>still isn't making antibodies then she will start IVIG.

>>

>>He said her diagnosis is hpogammaglbulinmia. I thought this was an

>>x-linked since only affects males.

>>

>>Thanks any info will greatly be appreciated.

>>

>>

>>===

>> and

>>(neutropenic and immune deficent)

>>mom to Evan 6, 4 and Abby Rose (almost 2)

>>---------------------------

[Guest guest]

Dear Group,

I must say that the email replies turned my stomach today. Often times

questions are asked in this group and answers are given. In the field of

medicine there are many differences of opinions, which is good but sometimes

confusing...as there are different schools of thought. I for one have two

children with two totally different problems, yet have many similar symptoms.

With Mark I am told that he has a defect in his immune system in the sense

that his b-cells are too low and do not work. With I am told that he

has a defect in his immune system in the sense that it is over producing

leukotrienes and histamine causing him serious allergic disease. Each of

these, part of the immune system but different components of it, Thus, being

two totally unrelated problems. Just like T cells and B-cells are different.

If one has a defect solely in b-cells but his T-cells are o.k, then he/she

would not be expected to have T-cell issues, just issues with b-cells even

though they are both part of the immune system....many times there are cross

over problems or variations or combined immune defects involving more then

one componet of the immune system. We have been told over and over again,

that 's problems and Mark's problems are from two different areas of the

immune system and that you can have one problem without the other or vice

versa.

Lactose Intolerance is a GI problem, not an immune problem. It causes one to

have the inability to digest carbohydrates due to a lack of a certain enzyme.

Whether or not there is a correlation between lactose intolerance and PID's

is unclear to me...as I am not a physician. It is true that immunology is a

relatively new field with many unexplained answers and questions that arise

every single day often times leaving doctors guessing at certain questions

for lack of a concrete answer.

All of use this group deal with daily challenges and uncertainties in dealing

with this dreaded disease we call PID. Our battles go beyond the illness

many times and are carried over into our personal lives, financial

situations, marriages, school situations, etc., etc., Questions are asked

every day and each of us shares what we know...none of us really ever 100%

correct as none of us are physicians. I suppose for the matter, we should be

careful so as not to mislead a person in anyway and get them confused or

upset. I guess what upsets me more is when we personally attack each other

for something that was probably a misunderstanding or misinterpretation

because we do not know how to take the answer or statement due to not knowing

how it was meant since it is being said over the Internet. It has happened

before.

I sit here day in and day out struggling to understand what all this means,

helpless in what I can do. I am reminded everytime that we see a physician

that they do not know the life expectancy or quality of life of Mark's

disease as it is writing itself and basically unheard of. There is not a

@#$*% thing that can be done about the Cd5+ cells that are attacking his body

and he has millions of them to contend with. I watch a little boy struggle to

" belong " and fit in in a world that has been somewhat cruel to him in a

sense. I try my best to help him feel normal in a not so normal situation.

It will be a long trying battle, but one that I have to fight. I have found

that family and friends just simply do not understand what we are going

through and have many times found solace and comfort in this group. I think

that we take enough beatings as it is that we do not need to attack each

other with sarcasm.

My apologies to those who were offended by what " I " understood about these

diseases. I went back and reread what I had said and could not see where I

was sarcastic or condescending.......I will be careful in the future.

My focus in life is for peace, love and understanding in a world that

sometimes brings us great pain and suffering...for whatever time my children

have here, I will make the best of it....that is, afterall the greatest thing

I can do for them. I am not a vindictive person and will not allow myself to

be upset over something that did not have ill intentions...I have enough to

be upset about otherwise. I will take a respite for a while, perhaps that

will help.

Annette, please do not leave the group.

Good day to you all.

Autumn mom to Mark Cd5-Cd19/ GERD, A1A, Samter's

[Guest guest]

Annette,

Please don't leave the group. I value peoples knowledge and opinions

on things. Opinions are just that opinions. Doesn't mean they are

right or wrong, but we as adults should respect that person. If

something is not correct than we should politely correct them.

We all joined this group to gather knowledge on our children's medical

issues and to gain support with one anotherthrough theses difficult

times.

Many of you have made friendships here. Lets continue that.

--- becky meadows wrote:

>

>

> Annette, I hope you've changed your mind about

> leaving the group. I am new

> here, and learning so much. But I can only imagine

> over time it would be

> hard to keep discussing these issues and dealing

> with what you have to on a

> daily basis, and a child who is chronically ill.I

> hope you reconsider, if

> only selfishly (lol) for us newbies, who have so

> much to learn about our

> children and what we can do to help them. Take care

> of yourself, Becky (mom

> to Ben, 22mo. CVID, asthma)

> Re: Just got back from

> immunologist...

> > >Date: Tue, 27 Jul 1999 22:17:45 EDT

> > >

> > >From: Autti@...

> > >

> > >Dear Becky,

> > >

> > >Hypogammaglobulinemia in not x-linked unless they

> know specifically what

> > >the

> > >PID is, i.e. Brutons X-linked

> aggammaglobulinemia, x-linked scid etc. I

> > >believe that adult onset can be male or female so

> therefore it would not

> be

> > >x-linked as well. Many patients with CVID do not

> develop symptoms until

> > >the

> > >second or third decade of life according the IDF

> handbook, although some

> > >develop them very early on. It also states that

> CVID can also be termed

> > > " acquired " aggammaglobulinemia, " adult onset "

> aggammaglobulinemia, or

> late

> > >onset " hypogammaglobulinemia. Hope this helps!!

> > >

> > >Autumn mom to Mark Cd5-Cd19 PID/ A1A,

> Samters, GERD

> > >

> > >---------------------------

[Guest guest]

Hi sue, if i remember right, hypogammaglobulinism (what they said Ben had,

also used CVID terminology), doesn't have to be x-linked. I think (I may be

wrong here) that adult onset (??) was the x-linked form. Ursula, do you know

about this? Becky (mom to Ben, 22 mo. CVID, asthma)

Just got back from immunologist...

>

>

>

>

> We just got back from the immunologist. was allergy tested today

> and the only thing she is allergic to is milk.

>

> She has no protective antibodies to pnenomiccoa any of the classes of

> it. Not the Hib vaccine Tetanus. Sh has some but in the indeterminate

> to measles. None to vaccicella or mumps.

>

> He wants to redo the hib and pnemoncoccal and varicella vaccine. Then

> see if she makes antibodies.

>

> He put her on rytan and amoxicllin as a prolative antibotic. If she

> still isn't making antibodies then she will start IVIG.

>

> He said her diagnosis is hpogammaglbulinmia. I thought this was an

> x-linked since only affects males.

>

> Thanks any info will greatly be appreciated.

>

>

> ===

> and

> (neutropenic and immune deficent)

> mom to Evan 6, 4 and Abby Rose (almost 2)

> ---------------------------

[Guest guest]

Annette,

We go tomorrow for 's pnemonia vaccine and HIB again. Part of me

feel like saying the hell with this. Especially since we are not even

sure its gonna work. I agreed to only those two and very reluctantly.

I keep changing my mind about it too. I will talk with the ped before

we go through with them tomorrow.

I did my job by vaccinating her the first time. Any feed back would

greatly be appreciated.

Thanks

--- annette lennon wrote:

>

>

> Dear Autumn: My daughter did not titer to HIB till

> our research immunologist

> at National Jewish designed or made an HIB

> innoculation with a conjegated

> protein to try and trick her body into producing

> that specific titer.

> Otherwise she would have not titered for it. We have

> documented prove when

> the air force kept trying to innoculating her for it

> and it was like

> shooting water like pneumovax. It caused my baby

> more pain. I guess their

> reasoning like everything else was keep shooting her

> with the innoculation

> and it eventually will take!!!!!!!!. Sorry for the

> sarcasm. There are no

> absolutes in Immunology. ANother quote from DR.

> Bogunewiecz at National

> Jewish Hospital.

> God Bless,

> annette mom to cvid,asthmatic,ect.

>

>

> >From: Autti@...

> >Reply-To: PedPIDonelist

> >To: PedPIDonelist

> >Subject: Re: Just got back from

> immunologist...

> >Date: Tue, 27 Jul 1999 22:20:58 EDT

> >

> >From: Autti@...

> >

> >Dear Annette,

> >

> >Since your daughter was able to make a titer to the

> HIB then she most

> >likely

> >would not have the Cd5+ issue that you and I have

> discussed. It might

> >still

> >be worth your while to have her Cd5+ checked

> though. Let me know what

> >becomes of that.

> >

> >Autumn mom to Mark Cd5-Cd19 PID/ Samter's,

> GERD, A1A

> >

> >---------------------------

[Guest guest]

Annette, I hope you've changed your mind about leaving the group. I am new

here, and learning so much. But I can only imagine over time it would be

hard to keep discussing these issues and dealing with what you have to on a

daily basis, and a child who is chronically ill.I hope you reconsider, if

only selfishly (lol) for us newbies, who have so much to learn about our

children and what we can do to help them. Take care of yourself, Becky (mom

to Ben, 22mo. CVID, asthma)

Re: Just got back from immunologist...

> >Date: Tue, 27 Jul 1999 22:17:45 EDT

> >

> >From: Autti@...

> >

> >Dear Becky,

> >

> >Hypogammaglobulinemia in not x-linked unless they know specifically what

> >the

> >PID is, i.e. Brutons X-linked aggammaglobulinemia, x-linked scid etc. I

> >believe that adult onset can be male or female so therefore it would not

be

> >x-linked as well. Many patients with CVID do not develop symptoms until

> >the

> >second or third decade of life according the IDF handbook, although some

> >develop them very early on. It also states that CVID can also be termed

> > " acquired " aggammaglobulinemia, " adult onset " aggammaglobulinemia, or

late

> >onset " hypogammaglobulinemia. Hope this helps!!

> >

> >Autumn mom to Mark Cd5-Cd19 PID/ A1A, Samters, GERD

> >

> >---------------------------