Re: Please help--IVIG questions

[Guest guest]

,

My daughter, Carly, just had an IVIG treatment in August to treat her Kawasaki's Disease. It was successful, however, she reacted adversely at first. She began shaking and got very cold (showed warning signs of hyperthermia). As soon as they slowed the intake she was able to handle it. I have not seen much of a change, as Carly is a very bright little girl already and appears outwardly to be a completely healthy child (although she has some internal problems). I do know that a number of autistic children have been successfully treated with IVIG and i will try to send you some good info on that if and when I find it, including the name of a doctor who treats with it.

Much success to you. I am going to search now.

Jayne

[Guest guest]

Jeannine, thanks for sharing all of your thoughts, observations and experiences regarding IVIG. I did not know any of it.

God bless you for your diligence.

Did Dr. Shoffner find the Complex IV problem? Did he agree with the other diagnosis as well (or whoever diagnosed the Complex IV problem)?

Virginia, Emma's Mom (Complex I deficiency, also documented in Atlanta)

[Guest guest]

sbalog@... wrote:

> I was hoping to hear from people on the list who have children that

> are getting IVIG, or have gotten it in the past.

My twelve year old daughter has received IVIg infusions on a monthly basis for

over 8 years. She will

continue to receive them indefinately until there is another alternative

treatment available.

> So, if your kids have been on it, can you tell me what type of

> response you have seen with it and how quickly you saw improvement.

We started it at a time when she was very ill and unstable. The PT video taped

her before and after so we

had a confirmation and record of the obvious physical improvements as well as

cognitive ones. But overall

the improvement was a very slow and gradual one. Her disease was very

aggressive at that time, and in the

beginning, we were content just to stop any worsening, and then later,

appreciated the improvement and

gains that she made. She was having very severe vascular headaches, strokelike

episodes and

seizures/seizure like episodes, that were difficult to control. She was losing

motor skills, and had

weakness on her right side. Her speech had become affected, and her voice had

become coarse and deep.

She had asthma and respiratory control problems, and motility issues. She also

had panhypopituitarism,

which complicated the above. All of these things improved with the treatments,

although the major medical

issues were more gradual improvement. Her physical stamina and strenght, as

well as muscle control was

the most obvious improvement with the first infusion, as well as the cognitive

skills that returned.

Headaches were better controlled, and blood sugar was more stable. Cardiac

symptoms have also responded

to the IVIg.

Specifically, her first infusion was when she was about 3 years old, and she had

lost many cognitive as

well as motor skills by that time. She could at one time count and name colors,

but at the time of the

first infusion, she could no longer do those things. Within a few days, the

video shows her naming

colors and rote counting. So it was clear that we had done something beneficial

and there was no doubt in

anyone's mind that we would continue.

> What types of skills did they regain?

The IVIg has improved her fine motor as well as gross motor skills. We know

this because as the treatment

wears off, her ability to walk, use scissors, write, etc., all tend to

deteriorate, and then improve with

the next infusion. Her memory and cognitive function also improves, and always

has. She would start the

infusion not remembering certain letters of the alphabet, or numbers, and then

after the infusion was able

to do the skills she had previous learned - like reading or division. Her

personality and alertness just

seems brighter after the infusion. She has less seizures and headaches.

> How often do they get it?

She started out getting a infusion, with the idea that when it wore off, we

would repeat it. Well we let

it wear off too far, and she ended up deteriorating rapidly and in ICU. After

that time, we repeated the

infusions every 21 days, since that is the half life of the IVIg. We continued

with that protocol for

years, until over the past few years we have gradually started to space out the

infusions. At this time

we are trying to go 6 to 8 weeks between infusions. Originally we did all

infusions in the hospital,

primarily because of the severe reactions that she had. For the past few years,

however, we have been

doing it at home, with home nursing services.

> Any side effects they may have experienced with it?

From the beginning, she had great difficulty maintaining her blood pressure thru

the infusion. Because

this complicated other cardiac problems, it was necessary for us to give the

infusion over a three day

period and at a slow rate. She also started getting a type of chemical

menigitis that is seen with IVIg,

a few years ago. It is called aseptic menigitis and is characterized by

extremely severe headache and

neurologic symptoms. This happens about 50 % of the time, even now, although we

have gotten better at

treating it early and avoiding some of the aftermath. Although we pretty much

plan on losing an entire

day 48 hours after the infusion from this reaction. The reaction is quite

severe, but the benefit for her

outweighs the risk.

> What diagnosis do they have?

When she was 2 years old, she was diagnosed with CIDP, a chronic inflammatory

neuropathy. She was

biopsied for mito at the same time, although they only looked for red ragged

fibers and they were not

found. However, since the nerve biopsy was conslusive for CIDP, and she went

into respiratory failure

shortly after the diagnosis was made - this is known to be a complication of

CIDP - the recommendation to

start IVIg was made at that time. About a year later, she was biopsied in

Atlanta and diagnosed with

Complex IV deficiency.

While we have used the CIDP diagnosis to legitimize her IVIg treatments, it has

been quite obvious that we

were treating a lot more than CIDP with the them.

> I've heard it's tough to get a doctor to agree to IVIG,

> so I wanted to have some feedback from mito. patients that I could

> share with our doctor.

Well the real difficulty is to get insurance to pay for it, and to guarantee the

availibilty. If your

doctor agrees to try it without a documented indicated diagnosis, then the

insurance can deny payment.

While I do believe that Caitlin's mito disease has benefited from the IVIg, the

mito is not a recognized

indication - it is purely experimental and the insurance doesn't have to pay,

based on that diagnosis.

In our case, Caitlin was so critically ill when we started it, and was spending

so much time in the

hospital, her medical costs were astronomical. Once our insurance company saw

how much more stable she

was, they agreed to pay for inpatient infusions, and didn't ever question the

IVIg, because in the long

run it was cost effective for them to do so. Bottom line was that they were

spending less money for

medical care when they covered her infusions.

> I am tired of watching our son detieorate, and I've heard of some

> great successes with IVIG.

Good luck with your pursuit. There definately is something to the IVIg, and the

effect on mito, but I

suspect that it will only benefit those that have an auto immune componant to

their disease. In other

words, if your son has a neuropathy, and the docs are suspicious that he has an

auto immune componant to

his mito disease, then he may benefit. If not, I really don't know if it would

make a difference. But if

you can get someone to try it, and document the difference, you've got a shot at

it.

Most of the kids that I know that get it, also have a proven CIDP type disease

with their mito. This is

supposedly related to the mito disease, but not all mito patients have this

componant - as far as I know.

One more thing, IVIg is quite costly as well as being in short supply. It is a

blood product, and is

dependant upon the current blood supply. There was severe shortage two years

ago, that the country has

not quite recovered from. There were many patients that were unable to get

their dose, even though they

had a documented disease that IVIg was indicated for. Since that time, many

doctors are reluctant to try

it in an " iffy " situation.

Hope this helps,

Jeannine