Diane, Kody's Mom

[Guest guest]

Sandy,

Kody's FISH test came back negative! Thanks for asking! Which leaves us

at waiting until April or May to trial off IVIG for some retesting in

the fall. This doesn't thrill me, but I guess I see the necessity of it.

There is some thought that he " may " be outgrowing some of his problems.

And they base this on the fact that he hasn't had anymore life

threatening infections since 2000. And I sit here and think, uh, yeah

well he has had pneumonia 4 times since then, and (duh) he has been on

IVIG since then! Doesn't it compute that the reason why he hasn't had

life threatening infections since is because IVIG is working for him??

Go figure. As for schooling, Kody tries so hard, but he is really

struggling with fine motor skills, letter sounds and sight recognition,

writing (he is able to only write his first name, nothing else), and he

can't count past 20. He goes to a special class in the afternoons for

extra kindergarten enrichment lessons and still he struggles. At this

point I do not know if his struggles are related to PIDS or maybe even

his seizure disorder. I am glad that you were able to go to your doctor

visits armed with information! I think it can do nothing but help!

Diane, Kody's Mom

[Guest guest]

Diane,

I have been reading A LOT about Lupus. I've noticed regularly FMS listed

as an associative disease with Lupus. It sounds like you're on the right

track, I am so glad they have the pain addressed, also your sleep issues.

What kind of mattress cover did you end up getting? I am still using my

sheepskin, but I want to know what other options I have.

I'm sorry to hear that Kody is struggling. Do you know of an expert in

DiGeroge? I was thinking that would be most beneficial for you. Kody is

lucky to have a Mom who is so on top of everything--that alone will make him

flourish.

Bri just had ear tubes (T-tubes) put in and I was firm about NOT letting

the ENT do more sinus surgery. He has had two sinus surgeries, and I would

never do it again. Unless I am able to invent the sinus tube! I don't see

any improvement at all with his sinuses, and they were actually very painful

surgeries for him to go through. I think he has so much scar tissue, that

more grows just as soon as they are done with surgery. I don't blame you for

not making Kody go through that.

Meanwhile, Bri's asthma is okay, it's hard only because with this, I don't

know what to expect. I'm learning. And his ears are much better. Now, if I

could just start feeling better before he has to have his valve replaced.

I'm pretty sure I'm going to need to be able to walk better than I can at

this point. So tomorrow my Doc is going to get pinned against the wall if I

have to!!!

Take Care,

Sandi

[Guest guest]

Hi Sandi,

Yes I did have my Lupus tests. The rheumatologist said that I have

fibromyalgia syndrome. He said that is often part of Lupus, and he noted

that even though my Lupus tests were negative, there isn't one test that

actually diagnosis' Lupus, it is more a battery of tests to rule it out.

And that just because those tests came back as not being Lupus, alot of

people have those tests negative at first and then years later turn

positive. Since I have the FMS, and many of the symptoms for Lupus, I

will be monitored yearly for Lupus from now on. In the meantime, I am

being treated for the FMS, and I do feel better. I have pain pills

(lodine) to take everyday, and Flexeral (a muscle relaxer) to take at

night to help me sleep. Apparently restless leg syndrome is part of FMS

and that is why I don't sleep as well as just the pain keeping me from

getting comfortable. I also go to physical therapy now to learn

appropriate exercises for FMS (it has to be totally non impact) and to

get my elbow strengthened back up (I've lost half my strength in my

right arm due to what the rheumotologist called a FMS flare up in my

elbow). And I bought a very soft pillow-y (is that a word?lol) mattress

pad so I sleep in softness now. There is a ton of other stuff I have to

do to manage this FMS, I have felt quite overwhelmed to say the least!

Thanks for your prayers!! Kody is going to have some OT and some sensory

integration therapy soon, and also neuropsych testing. I am nervous

about that. It appears that Kody has trouble retaining information. He

struggles so in kindergarten. And he has gone to PPI since he was two

(his class has always been very academic and has covered the pre

kindergarten curriculum the whole time) and he goes to his kindergarten

enrichment class every day after his regular kindergarten class. This is

a child that has had the same information over and over again, and yet

he cannot say his alphabet, he cannot count to 20, he cannot recognize

the letters of the alphabet or numbers by sight, and the only word he

can read is his name " Kody " . And yet other things he excels at. He can

do a puzzle like a flash, and he can make and extend patterns lickety

split. The ped. said it is part of the Di. Still, it is

frustrating to see my very bright little boy struggle so. I have to call

and schedule the testing, I'll be sure to keep you posted!!! How is

? He just had his sinus surgery didn't he? How did it go? Did it

work? They want to do that to Kody, but both his ped and I don't want

it. He says it doesn't work, that it is a temporary fix, and he doesn't

want to put Kody through it. The ENT on the other hand wants to do the

surgery. Truth is, I would be more likely to do it (even a temporary fix

is at least something) except that it would be scheduled for AFTER Kody

goes off the IVIG for the summer. No way do I want him having any kind

of surgery then!!!

Diane, Mom to Kody

[Guest guest]

Diane,

I was at a meeting yesterday and heard an interesting theory. One of the

parents there claimed that there is a test now to test how the eye tracks

printed material. Apparently, the eye is supposed to track in a

stair-stepped pattern for normal reading, but if it doesn't the child has

difficulty learning to read, retaining information, etc. I don't know all

the specifics--it was just a five second snapshot. Apparently, this parent

has dealt with this for awhile since his daughter is a junior in high

school.

It may be worth looking into if it will give you more definitive answers.

It is a new test, so you may have to look for it. Also, I know it's also a

little controversial at the moment--some educators don't really believe in

the theory.

I'm sorry to hear you have FMS. My MIL has it and she takes many different

pain meds every day. She is not able to work anymore and it is sad to see

this vibrant woman struggle so much. I will pray for you.

Ray, mother to Tabitha (age 6), Autumn, age 4 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan (11 months)

[Guest guest]

Thanks, . I have never heard of that theory, but I will definitely

look into it! It would make sense that if the eye isn't tracking the

information right it would be hard to learn to read. And also thank you

for your prayers regarding the FMS. I never heard of it before I was

diagnosed, and what I have heard is similar to your MIL situation.

Doesn't make me very happy, but, I am doing all I can to remain

functioning and in less pain. Started physical therapy a few weeks ago,

and I can feel a difference already.

Diane

[Guest guest]

Diane,

I'm so glad you're seeing a difference with physical therapy. It didn't

help my MIL at all. She's already had two surgeries since the diagnosis and

may have to have more. I hope not.

Ray, mother to Tabitha (age 6), Autumn, age 4 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan (11 months)

[Guest guest]

Hi Diane,

I saw the Neuro today. Actually, she was a Neuro-Oncologist which threw me

off a little. I wasn't anticipating that. She feels that there is still a

chance I might have MS (I thought we had ruled that out), or that I might

have lesions or something going on in my lower spine. She ordered a MRI of

that area, the only area they haven't done. Also, she is making me get my

eyes checked again by a competent Ophthalmologist. I need to have them

dilated to check the pressure of my spinal fluid--the last eye Doc didn't do

any of that. So, I liked her, and she is very thorough. It's more tests for

now, but she doesn't seem like the kind of Doc to give up very easily. Plus

she was great, an actual NICE Neuro!!!!!

Sandi, 's Mom

[Guest guest]

Diane,

She told me that just because the brain MRI is clear, doesn't mean there

won't be a problem in other areas of my spine. I think she felt the symptoms

were still consistent with MS, especially the weakness in my legs, trouble

swallowing and the headache I refer to as the antichrist headache. She also

mentioned that sometimes, the MRI is one of the last places the symptoms show

up. A person can have the disease but not have it show up in the MRI right

away. Still hurry up and wait--thanks for the prayers. They are coming your

way, also

Sandi