Re: Just got back from immunologist...

[Guest guest]

Dear Becky: Thanks for taking care of how I worded the answer. When I

mentioned milk in cvid, or hypogammaglobulinemia, or PID, I meant that at

anytime with this diagnosis you can have many allergies and as time

progresses your allergies can change such in the case of my daughter. She

was totally lactose intolerant at birth and not until she was four could she

even tolerate milk or milk products. Sorry for the semantics. I get to look

forward to a morning of semantics at the air base. We have to go to the

exceptional member family program because my daughter was promised a ride

and a day with one of the female pilots. I will withdraw our membership

from the program after I find out if this promise to my daughter is another

empty promise. My daughter is getting use to empty promises after ten years

of air force B>S>. I apologize if this offends anyone. Becky take care and

thank you for your kindness and knowing when someone is upset and letting

them vent. God Bless, and thanks for your kindness.

sincerely,

annette mom to alissa cvid,asthmatic, severe rhinosinusitis,ataxic

ect.

>

>Reply-To: PedPIDonelist

>To: <PedPIDonelist>

>Subject: Re: Just got back from immunologist...

>Date: Wed, 28 Jul 1999 19:14:09 -0500

>

>

>

>Well I think I speak for all of us-there just isn't a dumb question. There

>are much more qualified people here to answer this. But I can tell you that

>Ben can't tolerate the lactose in the milk. He's almost two, and I am

>buying

>Similac lactose free formula and put it in his sippy cup. I am not sure why

>but lactose-intolerance seems to show up alot in

>CVID kids. And CVID (or hypogammaglobulinism) seems to mimic the symptoms

>of Celiac Disease, so I suppose lots of food allergies are possible. I know

>I was allergic to wheat, malt, etc. and my mom chose to take me every week

>for allergy shots (about 20 years ago). I feel they helped me, I can eat

>wheat now without symptoms. Also I own a dog, and we raise rabbits; two

>things I used to test as allergic to. I still cannot tolerate malt, and

>sulfities, but hey that's not so bad, huh? Take care, Becky (mom to Ben, 22

>mo. CVID, asthma)

> 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 Autumn: If lactose intolerance and food allergies are not part of cvid,

or linked to its profile how come most of the children with pid,or cvid have

one or more allergies. It seems to reason that when part of the immune

system is off kilter that there will be either a hyper or hypo sensitivity

in the person's system. Just some conclusions from our immunologist. The

body will always try and compensate for the lack of something its missing.

Or should I say maybe the rest of the body tries and picks up the slack. If

I am wrong I stand corrected and maybe I do not know anything. Take care and

sorry for saying anything about milk and pid. Having enough trouble just

getting through the day. I feel like a target site lately and tired of

defending everything I say. Maybe its time to leave the group. God Bless

you all and thank you for all the support.

sincerely,

annette mom to alissa cvid,asthmatic ect.

>From: Autti@...

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>Subject: 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]

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]

Dear Autumn: No offense was taken, we have seen immunologist from different

parts of the world and country as in our case. We just came from the

chilrens rehab clinic today. They are now questioning ataxia telangiectasia

again. We are being sent to a geneticist. I did not think what I had

answered back being sarcastic or angry. I was trying to say there are

symptoms whether in the Gi tract or respiratory that all the kids for one

reason or another all show signs of suffering from such as asthma or sinus

disease. We are all looking for answers so our children will improve through

better care and knowledge. I apologize you and Ursula have been wonderful

support in the past and I have learned immensely from the group. I will in

the future not answer back unless it is only in support.

sincerely,

annette cvid,asthmatic, ataxia? ect.

>From: Autti@...

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>Subject: Re: Just got back from immunologist...

>Date: Wed, 28 Jul 1999 16:53:18 EDT

>

>From: Autti@...

>

>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]

Dear : I understand what you are saying. These past weeks have been

excessively stressful and I meant not to take it out on anyone in the group.

We spent a long session with our sociologist today and what we all have

been experiencing in chronic illness is alot to deal with and try and

understand. I apologize to anyone that I offended and again will only reply

in support in the future. Again you all have been supportive and watching

any child go through the slow deabilitating disorder of PID has taken its

toll on both emotional and physical resources of me lately with the added

!@#$ of the air force shipping my main support off to Korea and I apologize

for blowing off on that one. We all have issues to deal with and I did not

mean to alienate anyone here. I hope we can recoop and enjoy my daughter's

make a wish trip in august thanks for listening.

sincerely,

annette mom to alissa,cvid,asthmatic,ataxia

>

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>Subject: Re: Just got back from immunologist...

>Date: Wed, 28 Jul 1999 14:43:48 -0700 (PDT)

>

>

>

>

>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]

Dear : Good luck with your appointment tomorrow. Keep faith that at

anytime treatment will work and like my sociologist tried to say to me

again is what Quentin was trying to pass along we need to rule the disease

and not let the disease rule us. Each child is going to respond differently

to all treatments and we ask the doctor to look at all possibilities in

responding to vaccines. If a regular vaccine does not titer then we always

asked if the conjegated one would,.God Bless and good luck.

annette mom to alissa cvid,asthmatic

>

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>Subject: Re: Just got back from immunologist...

>Date: Wed, 28 Jul 1999 15:20:00 -0700 (PDT)

>

>

>

>

>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]

Dear Autumn, as my dad used to say, " clear as mud " , LOL. Seriously, thanks.

Take care, Becky (mom to Ben, 22 mo. CVID, asthma)

Re: Just got back from immunologist...

> 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]

Your welcome, Annette, anytime. Hope she gets the ride as promised. Keeping

my fingers crossed. Becky (mom to Ben, 22mo. CVID, asthma)

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)

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