Re: Update

[Guest guest]

Dear Autumn: We hope is better for the New Year and will continue to

keep both boys in our thoughts and prayers, we are with you in mind and

spirit,

God Bless,

annette and alissa lennon

>From: Autti@...

>Reply-To: PedPIDonelist

>To: scidmail@...

>CC: PedPIDonelist

>Subject: Update

>Date: Tue, 21 Dec 1999 16:49:12 EST

>

>from Autumn (Mark Cd5-Cd19 PID/ ASA, A1A, GERD with achalasia)

>

>We just returned from seeing yet another doctor. has a lung/sinus

>infection....which is right on course as he is always sick at Christmas.

>He

>is now having dozens and dozens of the cardiac/esophageal episodes. We are

>awaiting a call from GI and the cardiologist as I write this letter.

>is

>completely exhausted and this is really starting to put a strain on him.

>We

>are getting more and more worried as the days go by and gets a little

>worse each day. We hope and pray that he will be home for Christmas.

>

>I wish you all the very best for a Healthy, Happy Holiday season!

>

>Warm regards,

>

>Autumn

>

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

>This forum is open to parents and caregivers of children diagnosed with a

>Primary Immune Deficiency. Opinions or medical advice stated here are the

>sole responsibility of the poster and should not be taken as professional

>advice.

><< text3.html >>

[Guest guest]

Autumn:

I'm so sorry to hear about not doing better. I had hoped that you

would experience a Christmas miracle for him. Keep your hopes up--this

looks like 's first year in the past 5 that he is not going through a

major infection or episode. I will be keeping him in my thoughts and

prayers and I hope the doctors will find some relief for him soon.

Update

> From: Autti@...

>

> from Autumn (Mark Cd5-Cd19 PID/ ASA, A1A, GERD with achalasia)

>

> We just returned from seeing yet another doctor. has a lung/sinus

> infection....which is right on course as he is always sick at Christmas.

He

> is now having dozens and dozens of the cardiac/esophageal episodes. We

are

> awaiting a call from GI and the cardiologist as I write this letter.

is

> completely exhausted and this is really starting to put a strain on him.

We

> are getting more and more worried as the days go by and gets a little

> worse each day. We hope and pray that he will be home for Christmas.

>

> I wish you all the very best for a Healthy, Happy Holiday season!

>

> Warm regards,

>

> Autumn

>

> > This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

[Guest guest]

Debbie:

I am so glad to hear that you have some good news to report. With so much

going on right now, I'm sure each bit of good news is a blessing! To be

able to wean off of any drugs must be a great feeling. I'm glad to

hear that the VNS is working for him! I will keep you and your family in my

thoughts as 's doctors try to figure out why his lymphs are so low and

what to do about his digestive system problems.

--mom to ,7, dysgammaglobulinemia; ALL-in remission; etc.

Update

>

>

> I've got GOOD NEWS and BAD NEWS. The good news is that 's

> second set of mitogen function studies showed improved function, up to 30%

> of normal. The T-cell count is still down, but the function is returning

to

> normal. THAT is an enormous relief to all of us, and for which I am so

> grateful to God. But that also leads Immunology back to the original

> question of where he's losing lymphocytes. Immunology suspects the

> Inflammatory Bowel Disease (which is NOT the same as Irritable Bowel

> Syndrome) is progressing. It's rare, but Crohn's Disease can extend into

the

> esophagus, and even into the mouth. continues to vomit, even on a

> continous feed (40cc/hour) and is experiencing stomach cramps. Naturally,

he

> can't tell me but he stops whatever he doing, leans over slightly and

> groans, which has always been his behaviour when having stomach pain. He's

> lost weight, he's down to 28 lbs ( will be four years old in June)

and

> his growth isn't even on the chart anymore. I talked to GI doc yesterday,

> and he's going to confer with Dr. Starr, but GI wants to admit to

the

> hospital for tests to find out what's going on. He's already taking 20mg

> Prilosec for the GERD, we can't give him anymore. He's taking Carafate for

> the esophagitis, and Propulsid to keep his stomach as empty as possible.

The

> GI said we've done all we can do with medicine. GI is convinced that

> has autoimmune disease stemming from his SCID.

>

> Does anyone have any idea of what might be going on with ? Autumn? I

> know Mark has similar diagnoses to (GERD and Crohn's Disease) and

I'd

> appreciate your thoughts.

>

> The biggest bright spot in's life right now is that the VNS appears

to

> be working for . He had two seizures last week, and we activated the

> battery current, and the seizure stopped immediately. It was so weird. The

> seizure just stopped. He's

> been successfully weaned off the Neurontin, and we will begin weaning him

> off the phenobarbital next. Then, hopefully, if he continues to do well

with

> seizure control, we'll switch his maintenance AED from Topamax to

Trileptal,

> which has fewer side effects than Topamax.

>

> Love to all,

> Debbie, Mom to , 3.9 years old, SCID post BMT, GERD, IBD, G-tube,

> epilepsy, CP from hypoxic brain injury, CVI and developmental delays

>

>

>

>

>

>

>

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

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>

> This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

>

[Guest guest]

,

I'm so sorry for little , how miserable he sounds and this

for a little 4 yr old. Does he go to preschool? In TX we don't

start Kindergarten until 5 yrs. I hope the antibiotics start healing

him right away. Glad to hear that Nettie is doing fairly well although

you said maybe a sore throat. Ben usually feels well after IVIG and

runs out to play with a friend. Sometimes his arm is a little stiff or

sore, but rarely mentions this even.

Jan

RCurk@... wrote:

> Dear Ursula,

> I was thinking about you and Macey the other day. I hope your little pumpkin

> is doing better. As you read, Nettie is doing very well. She had her IVIG

> today and did great!! She is complaining more each time she gets it that

> afterwards she is " achy " , and " tired " . I think that is common and that is

> what I told her. Tonight she is complaining of a sore throat, but I had a

> cold, and is quite ill right now.

> Speaking of , he is sick again. Today I picked him from school, with

> a temp of 102. Yesterday I had to pick him up also because he was so

> congested and lethargic. Since Annette was at the hospital getting her IVIG,

> I just brought him back to the hospital and let the oncologist take a look at

> him. He had a severe right OM and a moderate L OM. We are now on Zithromax,

> again. We got the results of his immunology workup today. His

> immunoglobulin levels were: IgG 594 (ref. 130-2243), IgA 92 (ref. 7-173), IgM

> 94 (ref. 24-203). His CD4 count was 1681 and his CD 8 count was 2087, but

> his ratio was only 0.8. Dr. Souid thought this was much to low, considering

> he is 2 years out from transplant. He stated that he has only seen a ratio

> like that with kids on long term steroids. He would have also expected his

> IgG levels to be double what they were too. His IgG subclass levels were all

> in the normal range. responded normally to pokeweed, PHA, and candida

> but had a lower than normal response to tetanus. The plan at this time is to

> just treat the infections as they arise (monthly at this time) and retest his

> system in 1 year to see how his immune system is improving. We will begin to

> reimmunize him next month. It is all VERY frustrating!! My baby is sick all

> of the time. He is in my bed right now with another fever, and aches all

> over. He is sleeping constantly because he can't stop coughing unless he

> takes adult formula cough medicine and antihistamine to quell the sinus drip.

> I believe that his ear infections are directly related to a sinus infection

> that has dripped into his ears the last 2 nights. I had been hoping that the

> Claritin would have prevented some of this but it hasn't. The last 6 weeks

> were the longest he was able to go without an antibiotic in almost a year.

> So, despite not having a true PID, he certainly falls into the category by

> default it would seem. I am so tired right now. I just wish both of the

> kids could be happy and healthy at the same time. Guess it is not meant to

> be at this time. :-)

> Take Care and God Bless.

>

>

> Mommy to 10 yo Annette (IgG subclass 2 and 4 deficient, developmental delay,

> g-tube, asthma, lipodystrophy, spastic CP) and 4 yo (brain tumor).

> <A HREF= " http://www.pilink.com/ny/my2angels/index.htm " >Click here:

> CaringBridge - my2angels</A>

>

>

>

> This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

[Guest guest]

Diane - Most IVIG contains trace amounts of IgA and mostly replaces the IgG.

So you're right.

Ursula Holleman uahollem@...

and Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD,

kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

http://www.pedpid.com

/group/PedPID

[Guest guest]

Autumn,

I don't know if I have asked you this before, but do you know the difference

between hereditary fructose intolerance and the malabsorption? My niece and

nephew have HFI and they lack the enzyme to digest fructose and sucrose. If

they have any of these sugars they usually start seizing and can go into a

coma.

Ursula,

Any news on Macey's test results???? It seems like it has been forever.

Anyone who is inquiring,

Miralax is great!!!!! Hope everyone has a wonderful week. Prayers for all

the sick pumpkins.

Belinda Rose,

Mom to Allyssa and Cassie, igg immunodefficient, asthma, chronic sinusitis

[Guest guest]

HI Belinda,

Yes, I do know the difference between HFI and Fructose Malabsorption

deficiency. HFI is a much more serious condition involving the absence of an

enzyme in the liver. Both are metabolic disorders and both are

heterozygote...meaning you have to inherit a gene from each parent. In

Mark's case (fructose malabsorption deficiency)

he lacks an enzyme in the intestine to digest disaccharide's (certain

sugars). The symptoms of HFI with ingestion of fructose or sucrose is severe

hypoglycemia, sweating, confusion, nausea, abdominal pain, vomiting,

convulsion, etc., and/or coma. With Fructose malabsorption deficiency upon

ingestion of fructose the person will develop bad abdominal pain followed by

severe diarrhea, sometimes nausea. These patients will have failure to

thrive and not gain weight (hence, the word malabsorption). Treatment for

both is total avoidance of frustose and/or sucrose.

,

I was so sorry to read about 's persistent ear infection. We went

through this very same thing with , who just underwent his 3rd set of PE

tubes. Have they considered doing a culture and sensitivity on the ear to

determine if he has a resistant bug? When was younger (and he does not

have a PID) he would be placed on one antibiotic after another resulting in

multiple drug allergies and resistance to others. It finally took one very

smart doc to finally decide to do a culture and sensitivity...as it turned

out, had a resistant bug. He was placed on the appropriate antibiotic

and 30 days later the ear was fine. Hope gets some relief soon!!

Autumn (Mom to Mark Cd5-Cd19 PID and )

[Guest guest]

Autumn,

Thanks for the info. You sure are a wealth of knowledge and we are sure

fortunate to have you as part of this group.

Belinda Rose,

Mom to Allyssa and Cassie, igg immunodefficient, asthma, chronic sinusitis

[Guest guest]

My son and i are both igA def, and my immunologist said tha t IVIG

therapy is primarily for low igg levels, and sometimes other ig's, but

iga is not replaceable--it works where it is made, in the mucosa, putting

it in the blood does no good, and in some cases is harmful. The

researchers are trying to find a way to put iiit into the mucosa, but the

answer, he said, is 5 to 10 years off...So, that does seem a bad reason

(ie, iga's looking fine) to deny IVIG. Maurita, iga def, mom to wesley,

sel. iga def, & 2 younger boys waiting for pid to show..

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[Guest guest]

Belinda,

Thanks for the vote of confidence )

Autumn

[Guest guest]

Maurita,

I agree that it does seem like a poor excuse not to do the IVIG,

however at this point I'm fine waiting to see if she does outgrow the

deficiency. Tomorrow my husband is taking Autumn in for the pre-

titers, pneumovax, and immune profile. I'll be able to see next week

what her immune system looks like.

Unless we have some severe difficulties arise in the next few months,

I'm fine with waiting. As I said before, I'm trying to minimize her

exposure to trauma and she definitely hates any type of IV therapy.

Ray, mother to Tabitha (age 5) and Autumn, age 2 (IgG def.,

asthma, chronic sinusitis, and allergies--unknown).

[Guest guest]

Ray--i , too have mixed feelings for IVIG. The immunologist

expects wesely to develops CVID, as he says sel. iga def. is rarely the

only immune problem, but he thinks that would be good, because then he

can recieve helpful treatment, and even be healthier than he is now with

no treatment available. Some days i'm thankful we dont' have to deal with

all the ramifications of iv therapy, but on others i would give so much

to have him be regularly well. I'm eager to hear how Autumn's situation

works out! The Lord knows what is best for each of our dear pumpkins, so

i'm glad to leave it in His hands. warmly, maurita

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[Guest guest]

Ursula,

Just curious . . . Why the neck x-ray? Do you know what the dr. was

looking for? Autumn's had several chest x-rays when she was having

difficulty breathing and even some stomach x-rays. Like I said, just

curious.

Ray, mother to Tabitha (age 5) and Autumn, age 3 (IgG def.,

asthma, chronic sinusitis, and allergies--unknown)

[Guest guest]

Hi Ursula,

I am praying that Macey starts feeling better. Why don't they just go ahead

and give her the Rocephan?

[Guest guest]

- Macey has been telling us that the place it hurt to breath was her

throat. She has a history of laryngeal spasms so the ped ordered an xray to

try to see if there was any swelling. The neck was normal so we think she

is displacing the pain. She had fever tonight of 100 so I hope the Vantin

kicks in quickly.

Ursula Holleman uahollem@...

and Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD,

kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

http://www.pedpid.com

/group/PedPID

[Guest guest]

- The ped mentioned that she wanted to save the Rocephin as her trump

card. Any changes that I see or no improvement by Sunday and we will do the

Rocephin. It's completely at my discretion/judgment.

Ursula Holleman uahollem@...

and Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD,

kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

http://www.pedpid.com

/group/PedPID

[Guest guest]

Helen-

I am really glad that Mat's CBC was normal. I was also afraid that the

excessive tiredness was brought about by abnormal WBC hence leukemia. They

worry about this with both my girls. Both have blasts in their marrow and are

labeled MDS or preleukemia. Good luck with the IVIG insurance approval. We too

will be starting that shortly.

HBDOEM@... wrote:

Helen Mom to Matt (CVID)

Matts CBC is normal. Happy about that. Matt is scheduled for IVIG on November

3. Happy about that too. That of course is pending insurance approval but I

am feeling rather optimistic.

when I spoke with Matts immunologist he told me he was not surprised

that Matts CT scan was normal. One of the ENTs calls simular symptoms

adinitis. Lots of secretions and dranage but nothing shows on the CT scan.

As far as the fatigue, it is letting up a little, but I know it will snow

ball. I am allowing a little more activity for today/today knowing that this

may throw back on him.

, the doctors are not thinking about the luekemia. I am glad to hear

that. I was wondering if Matts fatigue was a symptom of something bigger like

luekemia.

So here we return to old territory and hoping Matt will handle the IVIG

better - meaning no headache and fever. I have pulled out my old diary for

reminders on what went on. God, that record keeping comes in handy.

Helen

eGroups Sponsor

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

, Mom to:

Evan 7, 5 (Shwachman Syndrome, CVID, Chronic Sinusitis, severe neutropenia,

leukopenia, and kidney reflux) and Abby Rose 3 (Shwachman Syndrome)

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

[Guest guest]

Diane - I'm sorry to hear about Kody's results and I hope that the

neurologist has an optimistic outlook. Macey has also had the testing for

the enterovirus which involved a spinal tap, sleep deprived eeg and brain

MRI (with sedation). She had several symptoms and they wanted to pursue all

possibilities. The protein level in the tap was normal (high levels usually

suggest a viral illness) and the PCR was normal. The MRI was unchanged (she

already had some spots there) and the EEG showed only one occurrence. So

thankfully an enterovirus wasn't found. Good luck and let us know when

you're scheduled to see the neurologist. Chin up, we're here for you.

Ursula Holleman uahollem@...

and Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD,

kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

http://www.pedpid.com

/group/PedPID

[Guest guest]

:

This may be no help at all, but seems to have a milk allergy, NOT

lactose intolerance, but the ONLY thing that causes her problems is actual

cow's MILK, not other milk products such as cottage cheese, cheese, ice

cream, etc. It's a mystery but soy milk works for her and she loves it

(yuck!).

(mom to , age 2, antibody def, IgA, IgM, IgG def - not on IGIV yet)

[Guest guest]

--When I first started to introduce cow's milk and milk products to

--he was about 11 months when I did this--he would break out in contact

dermatitis really bad whenever the milk product touched his skin. If he

spilled the milk or yogurt on himself, he's have a rash. This happened with

cheeses, sour cream, cottage cheeses, etc. so we were just waiting for this

diagnosis to hit about the allergy. We have plans for soy milk to use as a

substitute when we do the diet.

and Ray-- is only on saline nasal washes, and flonase on

a daily basis. We give him his antihistamine only as needed and took him

off that starting January 3rd when the allergy testing was brought

up--previous experience showed us that even the histamine control won't work

with either child if they are not off allergy meds for at least 2 weeks.

has never had a positive test come back--his immunologist feels that

that is one of the places where has the " holes in his immune system " .

His CBC's show high-normal Eos's so we know that more than likely he is

having some sort of allergies hitting him, but we have not yet been able to

pinpoint them. And, on the milk issue---my non-PID kid--is on 8 meds

daily to control his allergies and symptoms and the upcoming no-milk protein

diet has him extremely upset. He was fine until he heard that it meant he

had possible problems with other things besides drinking milk or pouring

some on his cereal! As I looked over the list of what he cannot have, I

can't blame him! Thanks.-mom to ,8, dysgammaglobulinemia,

leukemia-in remission; ,9, and ,2

[Guest guest]

GREAT!! I was told to leave Grace on the Singulair and Nasonex!! I really

hope they don't mess up her testing!!!! I will be SO not happy if that is

the case!!

Grace Caroline 8/14/97

Caelan 8/26/99

[Guest guest]

,

They did mention that it was rare for those two meds to interfere with the

testing, but it had happened in a few cases. I figured that we'd be one of

those few cases, so we decided to discontinue everything. It was a fun 10

days because by the time she was tested, the shiners were really starting to

show through & you could tell she really needed the meds. Hope it works out

for you.

Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan Avery due 5/17/01

[Guest guest]

Jay, I'm so glad that things are looking up for your family. I will keep

good thoughts about the upcoming court date. Kelley in NV

[Guest guest]

Hi, I'm glad you all have some good direction now as to what is going

on with ! You're right, things should go much better now. I can

only imagine how hard it was to hospitalize him. I know in the

beginning of 's OCD, I really thought I'd have to hospitalize

him, and there's really some " pain " in that thought, it's such a tug

on the heart! I'm sure is/will soon feel much better and

relieved also.

Please give us another update when you can!

> Hello Everyone,

> It has been a while since I posted because things here have been

> very unstable.If you remember I have a 9 year old son

diagnosed

> with OCD about a year and a half ago.Over the past year he went

from

> my sweet,kind boy into someone I did not know on want to know.His

[Guest guest]

Way to go, Garrett!!!...and you, too, Corinna. If you're anything

like me, I find it difficult at times to appreciate the progress and

calm...I find myself wondering when the shoe will fall again. As

time has progressed, I'm think I'm getting better at 'basking in the

moment' and appreciating each small victory (which really do

accumulate over time!) I'm so glad you both are doing well! It

really is an encouragement to all!

Blessings-

(Ohio) Anne (13, OCD, ADHD)