Re: Georgia has turned into a winter wonderland

[Guest guest]

- now that vaccination weight was a big ole typo. Her first

vaccination was at 2 months old and she was 10 lbs. Looking on the

dictation of that visit from the NP she also had a fever that day and an eye

infection. also has an umbilical hernia. This was also the visit they

ordered the upper GI and barium swallow (interesting to re-read these notes

after so long), also an EEG was ordered on this visit for repeat seizure

activity. (those stopped by the time she was 5 months old and she's only had

one since).

<<<Macey had her first vaccination at 2 months old, 29.5# , (DPT, IPV, HIB

and

Hep) - no reaction (no fever, no aches, no irritability for a prolonged

amount of time)>>>

Ursula - & Macey (4 yr old w/CVID) mom

[Guest guest]

Ursula: Glad Macey is doing better and they removed the pickline. Sorry did

not answer the vacination question but older daughter is visiting and don't

have time. Did anyone else have a problem with varavax?

annette and alissa

>

>Reply-To: PedPIDonelist

>To: " PedPID - onelist " <PedPIDonelist>

>Subject: Georgia has turned into a winter wonderland

>Date: Tue, 25 Jan 2000 11:38:38 -0500

>

>Hello from the icicle known as Georgia. Yes, I know that we're not as cold

>as other parts of the country but I'm a big baby and anything under 40

>degrees is a great artic freeze to me. We had lots of ice this morning and

>lots of southern fogies who have no clue how to drive on this stuff. Our

>porch is a icicle and I decided to meet the fed ex guy in the driveway so

>that we did not have a pretty lawsuit on our hands.

>

>The CT yesterday showed improvement with some air fluid levels (cells) in

>the ethmoid sinus. The line will be pulled Thursday under sedation and she

>will continue with Rocephin until then. She also will see the ped tomorrow

>afternoon to discuss the ENT's thought of re-evaluating her reflux. He

>suggested another swallow study. He thinks it very coincidental that her

>September sinus CT looked good and since November her sinuses have been so

>cruddy. It was about early late October that the virus " corrected " her

>motility and we thought that she didn't need the Propulsid and Pepcid

>anymore. So the ped GI took her off the meds.

>

> - how is doing? When are they going to do the endoscopy? I

>hope things are better and his labs are improving. Just another note on

>Dr.

>Buckley, she does clinic work as well as research.

>

> - hope everyone is well up there and hopefully sunny today. Glad to

>hear that is making great strides and I hope HBOT went well this

>week.

>One link that comes to mind is the PID webring. It is a webring collection

>of about 20 PID sites, some personal, some commercial, some of

>organizations. You can always include the ped address and/or Macey's. Let

>us know where to find the final outcome.

>

>Gail - has Kinsey had problems with the IV Benadryl. Macey threw up after

>the dose so we'll see if she does the same thing next time. But that

>brings

>up the issue, is this a reaction or an allergy? And what's the difference

>between the two?

>

>Kirstie - glad to hear that is feeling alittle better. Have Stef's

>lungs returned to full status or was there any residual affect of the

>infection? Good luck with Cam's new school and I hope he continues to do

>well.

>

> - sounds like a very mature young man. He seems to be at peace

>with what he has had to endure and what is to come. He must be a very good

>big brother to help through all the testing that they are doing? Did

>they decide to test his levels? What was 's lab work for yesterday?

>You sound very blessed to have two outstanding young men.

>

>Debbie - thank you for the insights into s care. At this time we have

>complete confidence in the doctors opinion of Macey's access. They are all

>aware of her infection history and are doing their expert best to keep her

>from harms way. I hope 's post-op appointment goes well and there is

>improvement. I have hear of ports in most areas of the chest (upper and

>below the nipple line) plus some ports are put in the upper arms. I've

>been

>told that PICC's can stay in anywhere from 3 to 12 months.

>

> - Survey response - Macey received vaccinations up until May of 97

>right before diagnosis.

>She got the DPT 3 times,

>one called the DPT-A once

>IPV - injectable polio 3 times

>HIB - 4 times

>MMR - once

>Hep 3 times

>Tuberculin? - once

>Varivax - once

>

>She will not receive any more vaccinations per her ped immunologist and

>pediatrician. Common Variable Immune Deficiency, Selective Antibody

>Deficiency

>Birth weight was 5 lb 3 oz. 4 weeks early (some call this preemie, some

>don't)

>Macey had her first vaccination at 2 months old, 29.5# , (DPT, IPV, HIB and

>Hep) - no reaction (no fever, no aches, no irritability for a prolonged

>amount of time)

>Issues: asthma, sinus disease, grade I right kidney reflux, Sensory

>Integration Disorder, Diabetes Insipidus, high cholesterol, high

>triglycerides

>

>Hope that helps.

>

> - I can't remember, is Zach on DDAVP? With Macey's DI it is

>difficult to keep in the extra fluids we do give her the day before unless

>we give her an extra dose of DDAVP. The endocrinologist is not comfortable

>with us doing this and so we leave it up to the doctor ordering the IV to

>order the extra dose. Some will, some won't. The immunologist will only

>do

>it if there are electrolytes drawn before hand but in order to get the

>electrolyte labs you have to stick her for blood. It's a cycle. Macey has

>no caffeine in her diet and I admit I haven't thought about the

>antihistamines being a problem. I'll try that for Thursday's IV stick.

>Again I hadn't thought of the blood pressure cuff, another thing for

>Thursday. But what if the vein itself is scarred? Alot of times they find

>a vein, stick it but can't thread the iv. Any suggestions. You've come up

>with some really good ones already.

>

>Well I'm off to be productive. 's at school and Macey is playing

>Jumpstart Pre-K on the computer so that helps.

>

>Ursula Holleman

>Macey's mom (4 yr. old with CVID, asthma, sinus disease, grade I right

>kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

>http://home.att.net/~maceyh/

>

>

>

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[Guest guest]

Ursula,

I am glad that they decided not to use sedation with Macey. I recall you

mentioning before that Macey did horrible with anesthesia and

sedation....breathing problems that were very life threatening. I have

never heard of a 48 hour pH probe, 's had three and all were 24 hours. Is

she going to stay in the hospital for it? CHM, offers either home or

hospital. We have done both. Why are they considering an endoscopy, is it

based on the sinuses? I would wait to see what the probe study and the

barium study show before considering an endoscopy, given her past history of

critical problems with sedation and anesthesia. You really have to weigh the

risks verses the benefits. Have they considered allergy as a culprit with

Macey's sinus difficulties? was allergy tested 6 times before showing a

positive allergy. Given Macey's age, it would be VERY common for her to not

show any allergic response. She really sounds " allergic " to me. BTW, what

ever happened to the JRA verses CP in her? Have they figured that all out

yet? Hope you are thawing a bit from you Georgia Freeze, we are still

hanging in here at about 7 degrees today.....very cold. Stay warm and hope

the girls are well.

Autumn mom to Mark Cd5-Cd19 and ASA, A1A, GERD post nissen, achalasia

[Guest guest]

Ursula,

I am confused about your last email. You mentioned that the pH showed good

levels the majority of the time....then why do the barium swallow? Since a

pH probe is the best indicator for reflux?

It makes perfect sense for Dr. Firschein to wait until Macey is 6 to retest

her. But I will mention that has a low IgE, like Macey and has

SEVERE allergies so remember...you cannot always go by the numbers.....

Also, I have to comment on this again. has many of the same symptoms as

Macey does....foul breath, headaches, raccoon eyes etc., In a recent letter

written by 's ENT he states " has relentless severe rhinosinusitis

with nasal polyposis and continues to follow in the same pattern that he has

for the past several years " In 's case the allergist does 5-6 days of

nasal smears...they start out as allergy and then ultimately end up as

infection at which time the culture is done to know which antibiotic to use.

We have never used IV antibiotics as our ENT and allergist feel that oral

work just as well. He has a clearly defined pattern, but at least we know

what it is. We have been told by immunology, infectious disease and ENT that

a CT CANNOT differentiate between a cold, allergy, virus, sinus infection.

has had CT's with marked thickening and fluid in all cavities and at the

same time his nasal smears were clear for infection, so viral or allergy has

at times caused his CT's to look like that. I am sorry, you may get offended

by this but I still do not know how a doctor can determine a sinus infection

without doing a smear or culture. From what you tell the group, Macey has

many other health issues, all that could raise her WBC or cause a low grade

fever. Mark has a low grade fever everyday. I guess, I look at it

differently then you do. I have a child whom I am told by all of his

physicians, has sinus disease worse then a CF or PID patient and yet we still

always make sure we are treating it correctly. Is there a reason they will

not culture her? To be perfectly honest, I do not know how a doctor could

order IV antibiotics without even knowing what he is treating...even if it is

a bacterial infection, we always make sure the appropriate drug is used for

treatment. With the threat of " super-bugs " that our future holds for our

children, I am always adamant that we are certain antibiotics are warranted.

This is just my opinion however strong it may be, but I have a genuine

concern that children be treated appropriately and not by a guess of a

diagnosis. It bothers me to see a child have to go through anything

unneccessary when it is so simple to confirm certain things such as a sinus

infection by doing a simple nasal culture.

Autumn

[Guest guest]

In a message dated 01/28/2000 7:24:37 PM Eastern Standard Time, Autti@...

writes:

<< We have been told by immunology, infectious disease and ENT that

a CT CANNOT differentiate between a cold, allergy, virus, sinus infection.

>>

Autumn is right. has had CT scans, and all it will show is that the

sinuses are occluded. The nasal cultures are the best indicator of whether

the infection is bacterial or not. 's had MANY nasal cultures and only

about half of them were positive for bacteria. For two years had dark

green stringy snot filling his nose almost constantly, and not once during

that time did receive IV antibiotics. is only on IV antibiotics

for pneumonia or blood infections (he had both last summer). was

getting nasal cultures about every six weeks, and not every culture was

positive. Green snot doesn't always mean a bacterial infection. To be honest,

though, doesn't see an ENT. All of 's care is done by his

immunologist, Dr. Stuart Starr, Division Chief, Immunology Dept. of

Children's Hospital of Philadelphia. I think he has a better understanding of

's immune responses than the specialists. 's GI doc runs everything

past Dr Starr before beginning any treatment, his neurologist consults with

Dr Starr about his seizure meds and possible impact on liver and kidneys, and

's recent surgery was done in consultation with Dr. Starr. He ordered

the extra dose of IVIG given 24 hours before, and that IV antibiotics be

started 24 hours before surgery because of 's history of blood

infections.

Debbie, Mom to , who was a WILD THING today because he's learned how to

climb up on stuff, and now that's ALL he wants to do ..... can't complain,

though. About three years ago I was told that would probably never walk.

[Guest guest]

Autumn - The thought behind the extended probe had more to do with what our

weather situation was than diagnostic. Since today's storm mercifully

skipped our area we took Macey to the GI's office at lunch and the probe was

removed. Initial download showed good levels of pH the majority of the

time. Now hopefully the Upper GI will go well.

It will be another year before Dr. Firschein will do allergy testing on

Macey. He does not believe they will be accurate until she is nearly 6.

Her last allergy testing was done when she was 2 1/2 and there were only 2

things that showed up. Not to mention the low levels of IgE in her.

Macey's neuro consult had to be rescheduled because it was coming up on the

day after she had been sedated (which was actually her second sedation in

that week). We did not feel the evaluation would be accurate or fair to

Macey since she was still " loopy " from her drugs. After the CP is ruled out

and after the tests are run at Duke then the doctors will determine if she

needs to go on to a ped Rheumatologist or if there is something showing up

in her CSF.

The ENT is basing the antibiotic treatment on low grade fever, foul breath,

headaches, raccoon eyes, CT results and past history (symptoms and response

to IV antibiotics). This recent set of infections revealed a rising

increase in WBC and some type of shift in the differential. Her baseline

WBC is 5-6. By the time she was sick enough to need antibiotics it had

risen to 10.5 (minus the false-high 14.6 after the solumedrol dose). The

increase (though not textbook high) in WBC is one of their indicators.

Ursula - & Macey (4 yr old w/CVID) mom

[Guest guest]

Autumn - I can only restate what Macey's ENT has told us. That sinus

cultures are only accurate in patients who have had repeated sinus surgery

which provides a clear pathway for the culturette to the sinuses via the

nasal passageway. Also it is important that the patient hold very still

when the culturette is " swiping " .

Macey has a long line of oral antibiotic therapy which has proved to only

lighten the symptoms and never resolve them during sinusitis. We did months

of oral antibiotics before giving the IV and with her history the ENT felt

he needed to use IV's. Her response to Rocephin is positive. Unless she

does not respond to the Rocephin I see no need in pushing the issue of doing

culture and sensitivity studies to let us know what next generation of IV's

might be needed. Using the level of IV's above Rocephin to treat an

unidentified bacteria is promoting super infections.

Regarding the pH numbers. Macey has shown on barium swallow that she does

aspirate and reflux.

I appreciate your concern and heartfelt opinions and as always I am testing

the ENT's knowledgebase of new therapies and techniques thanks to you.

I hope the boys are well and that 's appointment goes smoothly Monday.

Ursula - & Macey (4 yr old w/CVID) mom

[Guest guest]

In a message dated 01/29/2000 10:26:37 AM Eastern Standard Time,

ALANSWAY@... writes:

<< That is so great about climbing! Now get ready to catch him! It

sounds like he is such a joy for you. Also, I'm glad he's in such good

hands with his doctors. >>

, I never thought I'd be so happy to be pulling my little rascal off

coffee tables and couches! His short life has been pretty traumatic, so it's

just a tickle to be able to complain about something so ordinary!!

's medical history is so complicated, and so unusual, that our

pediatrician felt that would be best off in the care of his

immunologist. I really respect our pediatrician for being so honest with me.

Dr Starr (his immunologist) is very involved in 's care, and more

importantly, he really truly cares about . Dr Starr has been with

for three years now; he was with during his transplant.

, I know what you mean about Oncology! Although was an Immunology

patient, he fell under Oncology service for his bone marrow transplant. Let's

just say that Immunology and Oncology didn't always see " eye to eye " on a few

issues. Seven months after 's transplant, Immunology called Onco. and,

in effect, took back under their service. I met many wonderful families

during the two months was on the Oncology floor.

Take care,

Debbie, Mom to , a awesome climber who happens to have SCID