Re: Sandi

[Guest guest]

<<Last week he told me the only two reasons that kids get

constipated was lack of fiber or water.>>

Hi everyone. I don't say much because I really don't have much to

add, but this got me today. I was just told this about my 10yo DS,

, this afternoon. We've been using miralax for a good few

months now, pretty darn religiously (all it really does is make him

very gassy, so he has many laughs every evening!!!). He still gets

his " pain " as he calls it and has called it since he could talk.

It's always been the exact same spot since he could point with one

finger where it hurt. I think at this point, this dr. now thinks I

am a loon (well, he may have something there, but not about this in

particular!) for dragging my son in to a specialist for

constipation. Like I had nothing better to do today .... Is it me,

or should I just keep pushing fiber and water and he will suddenly,

after 10 1/2 years, get " unplugged?????? "

As far as I know, he does not have immune issues. I joined this

group because of my 7yo DD, but all 3 of my kids have asthma and

allergies. is my most allergic child, and his eyes certainly

show it this evening. I left the GI's office today feeling like a

great big dope because I don't make my kid eat enough fiber, drink

enough water or sit on the toilet often enough! Does anyone else

feel like this?????? I didn't want to see this dr. The ped and

pulmo suggest another one, but gee, he's not on our insurance.ggrrrr

Thanks for letting me vent!

Meg, mom to

, 14yo, asthma, allegries, growth hormone def

, 10yo, asthma, allergies

Annie, 7yo, asthma, allergies, reflux, and last we checked she made

pneumo titers--let's hope she keeps them!

[Guest guest]

" We've been using miralax...He still gets his " pain " as he calls it and has

called it since he could talk. It's always been the exact same spot...Is it me,

or should I just keep pushing fiber and water and he will suddenly, after 10 1/2

years, get " unplugged?????? "

Hi, Meg.

If it is really " constipation " or a motility issue, you could just make sure

that you are doing all that you can to get the stool through him. More

fiber/fluid may be suggested but it ain't gonna do the trick. I posted about

this topic recently and can send you the note directly, if you want to see it

again. Subject: Maggie's mom and constipation

(April 17).

There is always that off chance that the problem is more complex than just

getting the stool to go through with reasonable methods. Sometimes, kiddos have

complex biochemical, endocrine, or anatomical issues -- but many PIDers have

uncomplicated motility issues. Let's hope this is the case -- simple. = )

If the pain is near the navel and you think it is " constipation " , then it

might be that the miralax is just not doing enough work for him. There might be

more that you can do to GET things moving -- and he might need more Miralax or

something else to KEEP things moving. The GI should have talked with you about

possibilities.

Sorry to hear that you had such an unproductive GI appointment.

mom to CVIDer

[Guest guest]

Hi Meg,

My ped also told me that Conner was constipated because of those things too.

Well I agree with you, at this point I don't think much is going to

change! He's been using Miralax for maybe three months now and is doing

much better! How much Miralax is using? Conner is using one capful

once a day and that seems to be enough for him, but maybe needs more

than normal?

Take care,

Mom to Conner (11, possible combined immune deficiency, Asperger's, mild CP,

partial seizures, asthma, GERD, Hashimoto's disease and resolved adrenal

insufficiency),

Hayden (11, unknown PID, PDD-NOS, IBS and moderate hearing loss/aided),

Evan (11, unknown PID, asthma and mild hearing loss/unaided),

and Kelsey - (10, unknown PID, asthma)

Please visit us at www.caringbridge.org/in/connersmith

[Guest guest]

" ...Bri has just had a growth spurt--but he still does not weigh very much. His

Immuno just checked his weight and feels as if his dose is adequate. I would

love for him to do a trough level, though, so far I have not been able to talk

him into it... "

Sandi -

Growth (weight AND stature), trough, and clinical symptoms are reasons to modify

the IVIG dose.

Weight alone is not an appropriate guide when one just had a growth spurt, is

fatigued (when he was not fatigued in the past), and just had a serious sinus

infection.

You have probably calculated his mg of IgG per kg and know there is a range of

what " works " for PIDers. If his corndog doc refuses to do troughs, perhaps you

can discuss modifying the dose (with the range) using the algorithm and see if

he improves? Hmmm.... I don't know what to tell you. Hope others chime in...

mom to CIVDer

[Guest guest]

Sandi, has he been on the same dose since he started on IVIG? If so, I'm

sure he has grown a bit since then. When Britt's weight went up, her IVIG went

up.

Janet, mom to Brittany CVID age 15

[Guest guest]

" ...Plus, as I understand it, the dose is usually increased by 25% to do

SubQ?? "

Sandi -

Sorry for the delay...

There are additional factors involved with estimating a new SCIG dose (such as

frequency of IVIG, current weight/growth, clinical picture, etc.). Some

practitioners believe in a 25% increase and some do not -- it really depends.

The FDA required that docs increase SCIG for the studies but the exact amount of

IgG loss between IVIG and SCIG is not entirely clear.

Anyway, if you go the SCIG route, try to find a home health company and/or nurse

that can guide Bri's immunologist. For example, an experienced nurse can tell

the doc that Bri needs to be loaded up with IgG before changing to SCIG --

usually IVIG is given and followed by SCIG within a week or so -- and explain

how to calculate the dose.

The SCIG dose is usually based on his IVIG dose but, in Bri's case, it would

need to be adjusted -- since his doc is not on top of this. Also, the dose can

be based on a 21 day IVIG cycle (I don't know what schedule he is on right now).

Obviously, you need to discuss all of this with your home health company and the

doc.

A few families in our region (west) use NuFactor and Accredo services. Others

will chime in when you are ready to explore this route.

mom to CVIDer

[Guest guest]

Hi ,

Thank you for your thoughts,

My daughter is actually a member of the hydrocephalus group (which

also has) where she has met some really wonderful people and found

great support...she has also joined a mitochondrial group but she hasn't

participated in it. Most of the patients have different types of mito disease

and his case is so different from the others that she has chosen not to get

involved but she lurks and learns. Jonny's geneticist is really wonderful too.

She emails him quite often and he gets back to her within a day or two and is

very supportive. has quite an army of followers who adore him so my

daughter has a really great support system from all of his caregivers. He has

physical therapists and occupational therapists who he sees weekly, but I do

still worry about how all the stress is affecting mom and dad. It's affected

them more deeply than they realize.

He is actually doing really well considering he has pneumonia. I saw a video of

him last night, (my daughter videotaped him on the phone with me) and he looked

and sounded really good!

I get to see him next month... I'm hoping he'll be able to walk by then! He's

trying really hard. = )

Thanks again,

Sandi

-------------- Original message ----------------------

From: " michelle " <mcnairmichelle@...>

> Have you checked to see if there's a group on or elsewhere for MT

> disease? As I'm sure most of us can attest, we learned everything and

> then some here on this site. It has been a God send!!

> Maybe she can talk to her geneticist and get some other names and start

> a support group herself where everyone can compare notes.

> We know that doctors and pharmacists are not always the best in

> spelling out the rare side effects but for some of us, that's what we

> need to know.

> I had a GI (years ago) who put me on nifedipine without telling me

> about the drop in blood pressure. I took 2 one afternoon (as directed)

> and sent myself into shock! my BP is low anyway. Neither the doctor or

> pharmacist had told me to watch for that!

> I hope she can find some support. It breaks my heart to think of a mom

> without a group like this to share with.

>

> Hope gets better fast.

>

> Happy Swallowing!

> - in NC

>

>

Have you checked to see if there's a group on or elsewhere for MT

disease? As I'm sure most of us can attest, we learned everything and

then some here on this site. It has been a God send!!

Maybe she can talk to her geneticist and get some other names and start

a support group herself where everyone can compare notes.

We know that doctors and pharmacists are not always the best in

spelling out the rare side effects but for some of us, that's what we

need to know.

I had a GI (years ago) who put me on nifedipine without telling me

about the drop in blood pressure. I took 2 one afternoon (as directed)

and sent myself into shock! my BP is low anyway. Neither the doctor or

pharmacist had told me to watch for that!

I hope she can find some support. It breaks my heart to think of a mom

without a group like this to share with.

Hope gets better fast.

Happy Swallowing!

- in NC

[Guest guest]

Was the walking difficult for Brit at all??

Sandi,

When your with " Give Kids The World " you get a free wheel chair at each park

free of charge! We slept in and left in the afternoon one day. It's such a

wonderful place itself!

Janet, mom to Brittany age 17, CVID, Urticaria & Angioedema

**************Ideas to please picky eaters. Watch video on AOL Living.

(http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/

2050827?NCID=aolcmp00300000002598)

[Guest guest]

Hi Sandi,

 

I'm entering a 4th trial, but there are others that have been through that many

also. The trial I am starting is with a new drug from Ariad. It is a number as

of yet, AP24534, until it is FDA approved.  Your daughter has other drugs

available so if she does not tolerate her current drug, she can express her

concers to her doctor so he can check on other drugs.

Check back in this group for anwers. There are so many knowledgeable people that

can help you.

 

God Bless. I hope you are feeling better also.

Jackie S.

From: Greene <sandi3533 (DOT) com>

Subject: [ ] (unknown)

groups (DOT) com

Date: Friday, May 22, 2009, 6:47 PM

Hi.

My daughter was diagnosed with CML in Feb.   She has a 22 month old, active

baby.   She continues to work and take care of the baby and is extremely

fatigued.  I do the food shopping and go every night to take care of the baby so

she can eat and take her medication.  The days are like roller coasters.  Are

there any parents of children with CML that can offer me suggestions?

Sandi