Re: SCID MAIL GROUP-Cleveland

[Guest guest]

Autumn,

You are an inspiration to all of us. How you hold up with all this is

amazing. So is Mark. I am sending vives to hopefully learn some more

about this disease. God Bless and Prayers with you all.

--- Autti@... wrote:

> From: Autti@...

>

> from Autumn (Mark Cd5-Cd19 PID/ A1A, GERD,

> Samter's)

>

>

> One of the most challenging/frustrating things that

> will forever haunt me is

> the fact that with the Cd5-Cd19 PID, we are first in

> line. For those of you

> who do not know, my son has a form of PID that is

> writing medical history.

> It has never been heard of before, so we learn as we

> go as to what course

> this PID will take.

>

> Yesterdays visit was difficult to say the least.

> Dr. H is not certain why

> Mark is using up his complement 4, but said that he

> is indeed depleting it

> rapidly. He is very concerned about Mark and said

> what we are seeing now

> (problem wise) may not necessarily be something that

> Mark has had

> before....that it could be something new that is

> presenting itself as a

> result of the Cd5-Cd19 PID. He has a suspicion and

> while we were there, he

> called National Jewish in Denver. After speaking to

> someone in Denver, they

> (the two docs) decided to send some of Mark's blood

> off to a world-renowned

> specialist in complement disorders. The results

> will take a few months. We

> had it drawn yesterday so at least it is there by

> now. It was sent FedEx.

>

> Mark is covered in bruises of all sizes....Dr. H

> was very, very concerned

> about this and stressed to me that we need a biopsy

> of a fresh non-trauma

> bruise ASAP. He checked Mark from head to toe and

> could not believe how many

> bruises he had. He did say that they were

> ecchymosis, exact same thing that

> the dermatologist told us.

>

> The weight loss is another major concern. He did

> not know if it was related

> to the other things going on with Mark but was glad

> that GI ordered the labs

> that they did and that GI will be seeing Mark next

> Friday in Cleveland as

> well.

>

> Dr. H brought up CLL.....chronic lymphatic leukemia.

> He said that it is

> very, very rare in children and that he has patient

> (60 year old man) with it

> right now. He told me that he checked this patient

> for Cd5+ cells and that

> the patient had close to 100% Cd5+ cells. He said

> that the difference was

> that only one type of b-cell was Cd5+ in this man,

> whereas, in Mark and the

> other boys....all their b-cells are Cd5+. I asked

> then, could these boys get

> CLL later or another form of leukemia....answer was:

> don't know. This is

> what he told me, that he does know...some of this is

> old news (you have heard

> it before) and some is new. He knows with certainty

> that these boys have two

> problems that will cause many problems because of

> these two. First, they

> have less then 2% Cd5- b-cells in their

> bodies.....this will make them hosts

> to lots of infections/illnesses. Second, they have

> an extraordinary high

> level of Cd5+ cells...this will cause the autoimmune

> diseases, without escape

> and that one of the probably reasons why (if not

> even the cause) there is a

> lack of Cd5- cells is that the Cd5+ cells prohibit

> any Cd5- cells...reason or

> cause yet to be determined, cytokine or IL defect

> the strong suspect. The

> new information.....is that some of the results are

> in from Dr. Harry

> Schrader (sp)? from Birmingham, Alabama (that is

> where the boys with Cd5-Cd19

> blood was sent last April). The results are

> conclusive....the Cd5-Cd19 PID

> is a PID of it's own (what Dr. Hostoffer suspected

> and has been trying to

> prove to various other doctors all along) it is not

> a form of CVID that has

> been identified, it is not a form of Hyper IgM, or

> Di etc, etc. It is

> it's own PID. The three month long study proved it.

> I will get a copy of

> the report once it is all done and will share the

> important information with

> you when I get it.

>

> The other very surprising news from yesterday was

> that Mark's PFT was so low.

> They did it 4 times then put us back in our exam

> room....in walks the nurse

> with a breathing machine and I looked at him very

> puzzled...he told me that

> Dr. H wanted Mark to have a treatment to see if his

> numbers improved on the

> PFT. While the treatment did improve his numbers,

> Mark remained low on the

> FEV1. Dr. H started Mark on Serevent and told me

> that we will have to keep

> our eye on this, that at this point he will

> attribute it to reactive airway

> disease (ASTHMA!!!) He also told me that he wants

> to keep an eye on Mark's

> AST as it is elevated. He checked Mark's eyes and

> told me that they are

> cobblestoned....not sure what that term means

> (, do you know exactly

> what that means?) but that his throat was very

> cobblestoned as well, because

> of that he did allergy skin tests yesterday and

> Interdermals...all

> negative....supporting that the " cobblestoning " in

> the throat and eyes is

> from another source of chronic drainage, etc., not

> related to allergy.

> Finally, Mark has yeast on his bottom area for

> sure....so, our 2 1/2 hour

> appointment proved helpful but mind-boggling. I was

> so tearful while driving

> home yesterday. I am so scared of the " unknown "

> only because I think that

> the " unknown, is going to be a known if a few months

> and that it might not be

> good news. It is like walking into a dark room, you

> never know what you are

> going to run into. I feel like I have blinders on

> at all times.

>

> The most difficult thing about yesterday was

> Mark.....he cried when he had to

> get the allergy tests....I watched him...he was

> shutting his eyes...told me

> later, that he thought he would try to " meditate "

> the pain away " .......then,

> when Dr. H came in and told us that Denver could do

> the blood work, Mark lost

> it. Started to cry and begged me to not let them

> take his blood. He then got

> mad and said " I hate you " , when I told him that we

> had to do the test. He

> cried so hard that he hyperventilated and started to

> wheeze. Dr. H walked in

> and tried to explain to Mark why he needed the blood

> drawn and Mark just

> quietly cried.... " I don't want anymore blood

> tests " .....it was so sad. The

> drive home was somber. Nobody really talked. At

> one point Mark quietly

> said... " I love you mom. " I let him sleep in my bed

> last night and read

> stories to him from " Chicken Soup for the Children's

> Soul, " he then asked me

> to teach him how to meditate...so I did my best. He

> told me that he did not

> hate me and that he was sorry that he had said

> that...I told him that I

> already knew that, but thanked him for telling me

> anyway. I also told him

> that is was painful for me to have to agree to the

> test as I knew it would

> hurt him emotionally, but that if I said no, it

> could hurt him physically.

> He understood, but said that he has had enough....I

> guess I would say the

> same thing if I were in his shoes. Throughout the

> night, he reached for my

> hand to hold in his. Today, there has been no

> mention of what happened

> yesterday.

>

> I think I am going to cancel the Rheumatology

> appointment on Thursday. Dr. H

> said that at first he thought it was a good idea,

> but then after thinking it

> over, he does not think we will be any farther

> ahead...he said they are not

> going to be able to tell me anything more then what

> we already know and that

> Denver will tell us more. So, if I can help ease

> some stress for my little

> son I will.

>

> I listened to a tape yesterday while driving to

> Cleveland...Dr.Bernie

=== message truncated ===

===

and

(neutropenic and immune deficent)

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

[Guest guest]

Dear Autumn:

I rarely have a chance to get through my e-mails, let alone respond but I just

saw this post. I have felt like I didn't have much to offer the group because my

son also has something that even the doctors know little about. I had to

respond to your post because it truly touched my heart. There have been so many

times I just wanted to make it all go away and be the " good guy " . It is also

hard to trust that they are getting what they need treatment wise when you

know that they (the docs) know so little about their illness. I am with you. I

completely understand what you are going through. There have been many nights

Tyler has spent in my bed or me in his. It must be so scary for them, it's

scary for us. As he slept I held his hand in mine I prayed and asked god why he

did this to us and to tell me how to help my little boy. I still don't really

know what to do but we take it a day at a time. I just wanted you to know I

was thinking about you guys and if you ever need an ear, let me know. Please

give the boys xtra hugs and let them know there are lots of people who think

they are very special.

Sheble (Tyler, Hyper IgE Syndrome)

> From: Autti@...

>

> from Autumn (Mark Cd5-Cd19 PID/ A1A, GERD, Samter's)

>

>

> One of the most challenging/frustrating things that will forever haunt me is

> the fact that with the Cd5-Cd19 PID, we are first in line. For those of you

> who do not know, my son has a form of PID that is writing medical history.

> It has never been heard of before, so we learn as we go as to what course

> this PID will take.

>

> Yesterdays visit was difficult to say the least. Dr. H is not certain why

> Mark is using up his complement 4, but said that he is indeed depleting it

> rapidly. He is very concerned about Mark and said what we are seeing now

> (problem wise) may not necessarily be something that Mark has had

> before....that it could be something new that is presenting itself as a

> result of the Cd5-Cd19 PID. He has a suspicion and while we were there, he

> called National Jewish in Denver. After speaking to someone in Denver, they

> (the two docs) decided to send some of Mark's blood off to a world-renowned

> specialist in complement disorders. The results will take a few months. We

> had it drawn yesterday so at least it is there by now. It was sent FedEx.

>

> Mark is covered in bruises of all sizes....Dr. H was very, very concerned

> about this and stressed to me that we need a biopsy of a fresh non-trauma

> bruise ASAP. He checked Mark from head to toe and could not believe how many

> bruises he had. He did say that they were ecchymosis, exact same thing that

> the dermatologist told us.

>

> The weight loss is another major concern. He did not know if it was related

> to the other things going on with Mark but was glad that GI ordered the labs

> that they did and that GI will be seeing Mark next Friday in Cleveland as

> well.

>

> Dr. H brought up CLL.....chronic lymphatic leukemia. He said that it is

> very, very rare in children and that he has patient (60 year old man) with it

> right now. He told me that he checked this patient for Cd5+ cells and that

> the patient had close to 100% Cd5+ cells. He said that the difference was

> that only one type of b-cell was Cd5+ in this man, whereas, in Mark and the

> other boys....all their b-cells are Cd5+. I asked then, could these boys get

> CLL later or another form of leukemia....answer was: don't know. This is

> what he told me, that he does know...some of this is old news (you have heard

> it before) and some is new. He knows with certainty that these boys have two

> problems that will cause many problems because of these two. First, they

> have less then 2% Cd5- b-cells in their bodies.....this will make them hosts

> to lots of infections/illnesses. Second, they have an extraordinary high

> level of Cd5+ cells...this will cause the autoimmune diseases, without escape

> and that one of the probably reasons why (if not even the cause) there is a

> lack of Cd5- cells is that the Cd5+ cells prohibit any Cd5- cells...reason or

> cause yet to be determined, cytokine or IL defect the strong suspect. The

> new information.....is that some of the results are in from Dr. Harry

> Schrader (sp)? from Birmingham, Alabama (that is where the boys with Cd5-Cd19

> blood was sent last April). The results are conclusive....the Cd5-Cd19 PID

> is a PID of it's own (what Dr. Hostoffer suspected and has been trying to

> prove to various other doctors all along) it is not a form of CVID that has

> been identified, it is not a form of Hyper IgM, or Di etc, etc. It is

> it's own PID. The three month long study proved it. I will get a copy of

> the report once it is all done and will share the important information with

> you when I get it.

>

> The other very surprising news from yesterday was that Mark's PFT was so low.

> They did it 4 times then put us back in our exam room....in walks the nurse

> with a breathing machine and I looked at him very puzzled...he told me that

> Dr. H wanted Mark to have a treatment to see if his numbers improved on the

> PFT. While the treatment did improve his numbers, Mark remained low on the

> FEV1. Dr. H started Mark on Serevent and told me that we will have to keep

> our eye on this, that at this point he will attribute it to reactive airway

> disease (ASTHMA!!!) He also told me that he wants to keep an eye on Mark's

> AST as it is elevated. He checked Mark's eyes and told me that they are

> cobblestoned....not sure what that term means (, do you know exactly

> what that means?) but that his throat was very cobblestoned as well, because

> of that he did allergy skin tests yesterday and Interdermals...all

> negative....supporting that the " cobblestoning " in the throat and eyes is

> from another source of chronic drainage, etc., not related to allergy.

> Finally, Mark has yeast on his bottom area for sure....so, our 2 1/2 hour

> appointment proved helpful but mind-boggling. I was so tearful while driving

> home yesterday. I am so scared of the " unknown " only because I think that

> the " unknown, is going to be a known if a few months and that it might not be

> good news. It is like walking into a dark room, you never know what you are

> going to run into. I feel like I have blinders on at all times.

>

> The most difficult thing about yesterday was Mark.....he cried when he had to

> get the allergy tests....I watched him...he was shutting his eyes...told me

> later, that he thought he would try to " meditate " the pain away " .......then,

> when Dr. H came in and told us that Denver could do the blood work, Mark lost

> it. Started to cry and begged me to not let them take his blood. He then got

> mad and said " I hate you " , when I told him that we had to do the test. He

> cried so hard that he hyperventilated and started to wheeze. Dr. H walked in

> and tried to explain to Mark why he needed the blood drawn and Mark just

> quietly cried.... " I don't want anymore blood tests " .....it was so sad. The

> drive home was somber. Nobody really talked. At one point Mark quietly

> said... " I love you mom. " I let him sleep in my bed last night and read

> stories to him from " Chicken Soup for the Children's Soul, " he then asked me

> to teach him how to meditate...so I did my best. He told me that he did not

> hate me and that he was sorry that he had said that...I told him that I

> already knew that, but thanked him for telling me anyway. I also told him

> that is was painful for me to have to agree to the test as I knew it would

> hurt him emotionally, but that if I said no, it could hurt him physically.

> He understood, but said that he has had enough....I guess I would say the

> same thing if I were in his shoes. Throughout the night, he reached for my

> hand to hold in his. Today, there has been no mention of what happened

> yesterday.

>

> I think I am going to cancel the Rheumatology appointment on Thursday. Dr. H

> said that at first he thought it was a good idea, but then after thinking it

> over, he does not think we will be any farther ahead...he said they are not

> going to be able to tell me anything more then what we already know and that

> Denver will tell us more. So, if I can help ease some stress for my little

> son I will.

>

> I listened to a tape yesterday while driving to Cleveland...Dr.Bernie

> Siegel's " Humor and Healing, " I suggest it to everyone. Had I not listened

> to it, I might not be able to get through the day today. As it is, I am full

> of different emotions and worried for my little boy in more ways then one.

>

> I should end here, sorry for such a long letter and for any typos!!

>

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

[Guest guest]

Dear Autumn: I am terribly sorry to hear about Mark, I just know that the

specialists at National Jewish and your immunologist will come up with the

answers and a treatment plan. Please take care of yourself and know Mark is

also in God's hands. We went to a IDF meeting on Saturday and it was very

informative. They are going to have a new updated book on cvid and other

immunodeficienies. Please except our thoughts and prayers and give Mark a

big hug from all of us.

God Bless,

annette and Bob parents of alissa cvid,asthmatic

>

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>Subject: Re: SCID MAIL GROUP-Cleveland

>Date: Sun, 18 Jul 1999 23:20:12 +0000

>

>

>

>Dear Autumn:

>

>I rarely have a chance to get through my e-mails, let alone respond but I

>just saw this post. I have felt like I didn't have much to offer the group

>because my son also has something that even the doctors know little about.

>I had to

>respond to your post because it truly touched my heart. There have been so

>many times I just wanted to make it all go away and be the " good guy " . It

>is also hard to trust that they are getting what they need treatment wise

>when you

>know that they (the docs) know so little about their illness. I am with

>you. I completely understand what you are going through. There have been

>many nights Tyler has spent in my bed or me in his. It must be so scary for

>them, it's

>scary for us. As he slept I held his hand in mine I prayed and asked god

>why he did this to us and to tell me how to help my little boy. I still

>don't really know what to do but we take it a day at a time. I just wanted

>you to know I

>was thinking about you guys and if you ever need an ear, let me know.

>Please give the boys xtra hugs and let them know there are lots of people

>who think they are very special.

>

> Sheble (Tyler, Hyper IgE Syndrome)

>

>

> > From: Autti@...

> >

> > from Autumn (Mark Cd5-Cd19 PID/ A1A, GERD, Samter's)

> >

> >

> > One of the most challenging/frustrating things that will forever haunt

>me is

> > the fact that with the Cd5-Cd19 PID, we are first in line. For those of

>you

> > who do not know, my son has a form of PID that is writing medical

>history.

> > It has never been heard of before, so we learn as we go as to what

>course

> > this PID will take.

> >

> > Yesterdays visit was difficult to say the least. Dr. H is not certain

>why

> > Mark is using up his complement 4, but said that he is indeed depleting

>it

> > rapidly. He is very concerned about Mark and said what we are seeing

>now

> > (problem wise) may not necessarily be something that Mark has had

> > before....that it could be something new that is presenting itself as a

> > result of the Cd5-Cd19 PID. He has a suspicion and while we were there,

>he

> > called National Jewish in Denver. After speaking to someone in Denver,

>they

> > (the two docs) decided to send some of Mark's blood off to a

>world-renowned

> > specialist in complement disorders. The results will take a few months.

> We

> > had it drawn yesterday so at least it is there by now. It was sent

>FedEx.

> >

> > Mark is covered in bruises of all sizes....Dr. H was very, very

>concerned

> > about this and stressed to me that we need a biopsy of a fresh

>non-trauma

> > bruise ASAP. He checked Mark from head to toe and could not believe how

>many

> > bruises he had. He did say that they were ecchymosis, exact same thing

>that

> > the dermatologist told us.

> >

> > The weight loss is another major concern. He did not know if it was

>related

> > to the other things going on with Mark but was glad that GI ordered the

>labs

> > that they did and that GI will be seeing Mark next Friday in Cleveland

>as

> > well.

> >

> > Dr. H brought up CLL.....chronic lymphatic leukemia. He said that it is

> > very, very rare in children and that he has patient (60 year old man)

>with it

> > right now. He told me that he checked this patient for Cd5+ cells and

>that

> > the patient had close to 100% Cd5+ cells. He said that the difference

>was

> > that only one type of b-cell was Cd5+ in this man, whereas, in Mark and

>the

> > other boys....all their b-cells are Cd5+. I asked then, could these

>boys get

> > CLL later or another form of leukemia....answer was: don't know. This

>is

> > what he told me, that he does know...some of this is old news (you have

>heard

> > it before) and some is new. He knows with certainty that these boys

>have two

> > problems that will cause many problems because of these two. First,

>they

> > have less then 2% Cd5- b-cells in their bodies.....this will make them

>hosts

> > to lots of infections/illnesses. Second, they have an extraordinary

>high

> > level of Cd5+ cells...this will cause the autoimmune diseases, without

>escape

> > and that one of the probably reasons why (if not even the cause) there

>is a

> > lack of Cd5- cells is that the Cd5+ cells prohibit any Cd5-

>cells...reason or

> > cause yet to be determined, cytokine or IL defect the strong suspect.

>The

> > new information.....is that some of the results are in from Dr. Harry

> > Schrader (sp)? from Birmingham, Alabama (that is where the boys with

>Cd5-Cd19

> > blood was sent last April). The results are conclusive....the Cd5-Cd19

>PID

> > is a PID of it's own (what Dr. Hostoffer suspected and has been trying

>to

> > prove to various other doctors all along) it is not a form of CVID that

>has

> > been identified, it is not a form of Hyper IgM, or Di etc, etc.

>It is

> > it's own PID. The three month long study proved it. I will get a copy

>of

> > the report once it is all done and will share the important information

>with

> > you when I get it.

> >

> > The other very surprising news from yesterday was that Mark's PFT was so

>low.

> > They did it 4 times then put us back in our exam room....in walks the

>nurse

> > with a breathing machine and I looked at him very puzzled...he told me

>that

> > Dr. H wanted Mark to have a treatment to see if his numbers improved on

>the

> > PFT. While the treatment did improve his numbers, Mark remained low on

>the

> > FEV1. Dr. H started Mark on Serevent and told me that we will have to

>keep

> > our eye on this, that at this point he will attribute it to reactive

>airway

> > disease (ASTHMA!!!) He also told me that he wants to keep an eye on

>Mark's

> > AST as it is elevated. He checked Mark's eyes and told me that they are

> > cobblestoned....not sure what that term means (, do you know

>exactly

> > what that means?) but that his throat was very cobblestoned as well,

>because

> > of that he did allergy skin tests yesterday and Interdermals...all

> > negative....supporting that the " cobblestoning " in the throat and eyes

>is

> > from another source of chronic drainage, etc., not related to allergy.

> > Finally, Mark has yeast on his bottom area for sure....so, our 2 1/2

>hour

> > appointment proved helpful but mind-boggling. I was so tearful while

>driving

> > home yesterday. I am so scared of the " unknown " only because I think

>that

> > the " unknown, is going to be a known if a few months and that it might

>not be

> > good news. It is like walking into a dark room, you never know what you

>are

> > going to run into. I feel like I have blinders on at all times.

> >

> > The most difficult thing about yesterday was Mark.....he cried when he

>had to

> > get the allergy tests....I watched him...he was shutting his eyes...told

>me

> > later, that he thought he would try to " meditate " the pain

>away " .......then,

> > when Dr. H came in and told us that Denver could do the blood work, Mark

>lost

> > it. Started to cry and begged me to not let them take his blood. He

>then got

> > mad and said " I hate you " , when I told him that we had to do the test.

>He

> > cried so hard that he hyperventilated and started to wheeze. Dr. H

>walked in

> > and tried to explain to Mark why he needed the blood drawn and Mark just

> > quietly cried.... " I don't want anymore blood tests " .....it was so sad.

>The

> > drive home was somber. Nobody really talked. At one point Mark quietly

> > said... " I love you mom. " I let him sleep in my bed last night and read

> > stories to him from " Chicken Soup for the Children's Soul, " he then

>asked me

> > to teach him how to meditate...so I did my best. He told me that he did

>not

> > hate me and that he was sorry that he had said that...I told him that I

> > already knew that, but thanked him for telling me anyway. I also told

>him

> > that is was painful for me to have to agree to the test as I knew it

>would

> > hurt him emotionally, but that if I said no, it could hurt him

>physically.

> > He understood, but said that he has had enough....I guess I would say

>the

> > same thing if I were in his shoes. Throughout the night, he reached for

>my

> > hand to hold in his. Today, there has been no mention of what happened

> > yesterday.

> >

> > I think I am going to cancel the Rheumatology appointment on Thursday.

>Dr. H

> > said that at first he thought it was a good idea, but then after

>thinking it

> > over, he does not think we will be any farther ahead...he said they are

>not

> > going to be able to tell me anything more then what we already know and

>that

> > Denver will tell us more. So, if I can help ease some stress for my

>little

> > son I will.

> >

> > I listened to a tape yesterday while driving to Cleveland...Dr.Bernie

> > Siegel's " Humor and Healing, " I suggest it to everyone. Had I not

>listened

> > to it, I might not be able to get through the day today. As it is, I am

>full

> > of different emotions and worried for my little boy in more ways then

>one.

> >

> > I should end here, sorry for such a long letter and for any typos!!

> >

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

[Guest guest]

Dear Annette,

Thanks for your kind words. When will the new book be out from the IDF?

Please let me know.

Regarding Mark, he is worse. I returned home late Sunday afternoon from a

weekend away with two girlfriends, only to find that Mark had many, many more

bruises. We are going in for a biopsy tomorrow. We spoke to the local

immunologist today, he explained to us that Mark's blood vessels are leaking.

He told us last Thursday that Mark's body has begun to attack itself. They

are watching his kidneys closely as they often can be affected from this type

of problem. So far, the urine looks OK, the biopsy of the brusies should

give us a lot more information. It is a very good possibility that they may

need to put Mark on immuno-suppressant drugs.

We head back to Cleveland this Friday. I will be honest, I am very, very

worried about Mark.

Dale..thanks for the card...you are so sweet and thoughtful...Mark LOVED it!!

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

[Guest guest]

Dear Autumn: I hope Mark is doing better. I hope the biopsies go well as

well as they can. Good luck at the center. I will let you know as soon as

we hear anything on the new book. God Bless and we keep you all in our

prayers. Please take time for yourself. I know I always say that but Mark

needs you strong also. Let us know how he is doing!

They will find a solution.

in our hearts,

annette mom to alissa cvid,asthmatic

>From: Autti@...

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>Subject: Re: SCID MAIL GROUP-Cleveland

>Date: Mon, 19 Jul 1999 21:24:28 EDT

>

>From: Autti@...

>

>Dear Annette,

>

>Thanks for your kind words. When will the new book be out from the IDF?

>Please let me know.

>

>Regarding Mark, he is worse. I returned home late Sunday afternoon from a

>weekend away with two girlfriends, only to find that Mark had many, many

>more

>bruises. We are going in for a biopsy tomorrow. We spoke to the local

>immunologist today, he explained to us that Mark's blood vessels are

>leaking.

> He told us last Thursday that Mark's body has begun to attack itself.

>They

>are watching his kidneys closely as they often can be affected from this

>type

>of problem. So far, the urine looks OK, the biopsy of the brusies should

>give us a lot more information. It is a very good possibility that they

>may

>need to put Mark on immuno-suppressant drugs.

>We head back to Cleveland this Friday. I will be honest, I am very, very

>worried about Mark.

>

>Dale..thanks for the card...you are so sweet and thoughtful...Mark LOVED

>it!!

>

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

>

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

[Guest guest]

Autumn,

I will be praying for you and Mark today. God Bless.

===

and

(neutropenic and immune deficent)

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

[Guest guest]

Dear (Tyler's mom),

Thank you for sharing those very touching words with me. I think we all feel

so " helpless " with these disease/illnesses at times. Right now, I

particularly feel that way. I guess the only thing we can do is love our

children, play with them, laugh with them etc.....enjoy each day with them.

I will continue to advocate for Mark and , but I am feeling more and more

scared for Mark's future.

I want to thank all of you for your continued outreach of support, concern,

prayers and friendship and I give you all the same in return. I spoke with

Dr. Hostoffer today. If the biopsy confirms what they suspect, then we will

have no choice but to begin immuno-suppressant drugs. He told me that if

this is the case, it will create many problems for Mark, and therefore it is

important to see what the biopsies show. He told me that Mark's C4 is still

low. I told him about the new lesions. He is very concerned for Mark as

well and wants him followed closely....he also wants his urine tested

periodically. He told me that Mark's Cd5+ level is the same and he now is

calling it " fixed " . It has not changed nor has his Cd5- cells changed since

1997, he still has less then 100 Cd5- (normal b-cells) and millions of Cd5+

cells. So, this was not good news (although, I should have known that it

would not be changed). Mark will be on lifelong IVIG with a cell that has

begun to attack his body and there is not a darn thing I can do about it.

You know part of me was actually thinking that the Cd5+ might be

improved.....wishful thinking I suppose, but I still hung on to that

wish....only to hear that it is not going to change. So, after I hung up the

phone with Dr. H I turned on the stereo and the boys and I listened to happy

music as we danced around the living room...me laughing with them when I

really wanted to cry. Thanks for listening. I just needed to get this off

my chest.

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

[Guest guest]

Dear Autumn: We all feel helpless about what to do for our kids, cvid and

all the complications that come with it has been a hard journey to go

through. But when you look into the faces of these children you have shared

their inner wisdom and fight. My daughter's simple believe in God has made

me feel ashamed sometimes for questioning why she was placed on this earth

with so much to go through. So I have to feel blessed that God gave me this

special child to care for. For however long she will exist on this plane. I

feel privileged I was able to be her earthly mom. You will remain in our

hearts and prayers and thanks for sharing your feelings it reaffirms that

here we all share a common ground.

God Bless,

annette mom to alissa,cvid,asthmatic,ataxia ect.ect.

>From: Autti@...

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>Subject: Re: SCID MAIL GROUP-Cleveland

>Date: Tue, 20 Jul 1999 13:33:21 EDT

>

>From: Autti@...

>

>Dear (Tyler's mom),

>

>Thank you for sharing those very touching words with me. I think we all

>feel

>so " helpless " with these disease/illnesses at times. Right now, I

>particularly feel that way. I guess the only thing we can do is love our

>children, play with them, laugh with them etc.....enjoy each day with them.

>I will continue to advocate for Mark and , but I am feeling more and

>more

>scared for Mark's future.

>

>I want to thank all of you for your continued outreach of support, concern,

>prayers and friendship and I give you all the same in return. I spoke with

>Dr. Hostoffer today. If the biopsy confirms what they suspect, then we

>will

>have no choice but to begin immuno-suppressant drugs. He told me that if

>this is the case, it will create many problems for Mark, and therefore it

>is

>important to see what the biopsies show. He told me that Mark's C4 is

>still

>low. I told him about the new lesions. He is very concerned for Mark as

>well and wants him followed closely....he also wants his urine tested

>periodically. He told me that Mark's Cd5+ level is the same and he now is

>calling it " fixed " . It has not changed nor has his Cd5- cells changed

>since

>1997, he still has less then 100 Cd5- (normal b-cells) and millions of Cd5+

>cells. So, this was not good news (although, I should have known that it

>would not be changed). Mark will be on lifelong IVIG with a cell that has

>begun to attack his body and there is not a darn thing I can do about it.

>

>You know part of me was actually thinking that the Cd5+ might be

>improved.....wishful thinking I suppose, but I still hung on to that

>wish....only to hear that it is not going to change. So, after I hung up

>the

>phone with Dr. H I turned on the stereo and the boys and I listened to

>happy

>music as we danced around the living room...me laughing with them when I

>really wanted to cry. Thanks for listening. I just needed to get this off

>my chest.

>

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

>

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

[Guest guest]

Good luck with Mark, I will be praying for him and you. Take care, I will be

mailing him a card in the morning. I'll try to make one very silly just for

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

Re: SCID MAIL GROUP-Cleveland

> From: Autti@...

>

> Dear Annette,

>

> Thanks for your kind words. When will the new book be out from the IDF?

> Please let me know.

>

> Regarding Mark, he is worse. I returned home late Sunday afternoon from a

> weekend away with two girlfriends, only to find that Mark had many, many

more

> bruises. We are going in for a biopsy tomorrow. We spoke to the local

> immunologist today, he explained to us that Mark's blood vessels are

leaking.

> He told us last Thursday that Mark's body has begun to attack itself.

They

> are watching his kidneys closely as they often can be affected from this

type

> of problem. So far, the urine looks OK, the biopsy of the brusies should

> give us a lot more information. It is a very good possibility that they

may

> need to put Mark on immuno-suppressant drugs.

> We head back to Cleveland this Friday. I will be honest, I am very, very

> worried about Mark.

>

> Dale..thanks for the card...you are so sweet and thoughtful...Mark LOVED

it!!

>

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

>

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

[Guest guest]

Dear Annette,

Thank you for those kind words.

ps...whatever became of the Cd5 test for your daughter?

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

[Guest guest]

Dear Autumn: We have a call into our immunologist about whether he linked up

with Dr. Hostoffer at a conference in Vancouver, he will not be back for two

more weeks he is speaking all over the country. I have an immunologist that

loves conventions and learning new info. Will let you know. We hope Mark is

a bit better today and continue you in our prayers. Alissa's peds took

blood from her yesterday she is bruising all over her body. She had

neutropenia four years ago and I do not know if this is it again. Take care

and also hope you were able to get some rest.

God Bless,

annette mom to alissa cvid,asthmatic

>From: Autti@...

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>Subject: Re: SCID MAIL GROUP-Cleveland

>Date: Wed, 21 Jul 1999 13:13:28 EDT

>

>From: Autti@...

>

>Dear Annette,

>

>Thank you for those kind words.

>

>ps...whatever became of the Cd5 test for your daughter?

>

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

>

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