Re: Reposted (Update IVIG miracle) for Stockton's Mom

[Guest guest]

Thanks everyone, for going to the trouble to think of us and look up

this post. It is so interesting to me! I am going to go back and

look at my calendars to see what kind of coorelation I can see. I

don't remember how much better Stockton's seizures got with each

antibiotic, but I do remember that they were better - sometimes

amazingly and sometimes slightly. I wonder if the type of antibiotic

makes a difference. I'm definitely going to look into this

possibility. Thank you all!!

> > Hello everyone.

> > It has been a very long time since I posted- so long

> >that many of you may not know us but I felt it was

> >time I wrote and told you of the amazing developments

> >in our lives recently.

> > Many of you may remember my son . He started having

seizures

> at

> > age 4. They started with a bang and within 4 months of the first

> > seizure was diagnosed with LGS. No other prevalent health

problems.

> He

> > was started on drugs but progressed so rapidly to hundreds of

> seizures

> > per day that we started the diet at 5 months after the first

> seizure.

> > We had good results on the diet- never seizure free but were able

to

> > get off all drugs . We stayed with the diet for over a year. After

> > several months it became evident that Mike was becoming sensitive

to

> > many foods so as many of you do, we started limiting all things

that

> > seemed to be seizure triggers. No matter how we tried it seemed

> > impossible to keep Mike from sensitizing to new foods- we did

> rotation

> > diet for quite a while. We stopped the diet because it seemend

that

> > everything I could give him on the diet he reacted to. So we

tried a

> > low allergen, healthy diet. At this point he was keto free and

drug

> > free. He did well for about a year- not seizure free but OK. Then

we

> > lost control and started lamictal. This worked for a while, then

> > topamax- bad drug for Mike- used for only a couple of weeks. This

> > brings us to This past spring when again Mikes seizures were out

of

> > control. WE were talking CC or VNS. He has all kinds of seizures

but

> > has severe drops which take their greatest toll. All this time we

> kept

> > Mike on his allergen free diet as we still saw a direct link

between

> > seizures and foods.

> > The last day of March Mike woke with an ear infection. Went to

doc,

> > got px for antibiotic. I am very cautios when giving Mike anything

> > new- colorings, fillers etc always cause problems- so took px to

> > pharmacy which is a compounding pharmacy. Asked them if they could

> > compound antibiotic with no gluten, dairy, soy, corn, colorings

> etc, etc,

> > They laughed at me but in the end gave me pure amoxil powder

which

> we

> > mixed in juice. I was definately expecting a negative reaction

but

> the

> > next day Mike was seizure free and stayed so for the next 10

days.

> Now

> > remember this is a child who at the time was having 20+ drops/day

> > along with many other types. He has never gone longer than a week

> > seizure free even at his very best. So this was dramatic. As soon

as

> > we stopped the antibiotics- within 3 days the seizures returned.

> Told

> > doc and he agreed to a little experiment. Gave more antibiotics

and

> > seizures stopped, no ABX and seizures started again. Yes at this

> time

> > we were all scratching our heads but saying " immune system " We

saw

> an

> > immunologist who did alot of tests- turns out MIke has a marked

> immune

> > deficiency- probably born with it- He cannot make antibodies too

> many

> > things and is thus not immune to even the things he was immunized

> > against- this is a little scary but none the less we proceed. The

tx

> > for IgG deficiency is IVIG.Oddly enough this is also a treatmnet

for

> > seizures. He has his first dose the last week of Aug. Initial

> reaction

> > was bad but then he cleared and was seizure free for several

weeks.

> > The IVIG is a blood product given by IV. The body naturally

breaks

> it

> > down after 3-4 weeks- so there is an expectation that the symptoms

> > will return in 4-5 weeks. For us that is exactly what happened.

We

> had

> > a second infusion- no reaction this time- and again seizures

> > stopped.We now expect that he will need monthly infusion for a

very

> > long time but that is OK if it keeps him healthy. Mike has

always

> > had some other weird signs that noone could pinpoint but when you

> put

> > them all together they point to Immune deficiency- weight loss,

> bowel

> > issues- severe diarrhea for Mike, allergies- food or

environmental,

> > severe sunusitis, constant sore throat, joint pain- knees hands

and

> back.

> > All of this went undetected until by the grace of God , Mike got

an

> > ear infection. Today Mike continues to do VERY well. We are just

> into

> > this but seeing so many changes in this child. He had an EEG in

sept

> > and it no longer showed any LGS signs. It was not normal- now

> showing

> > signs of an encephalopathy however it was good. It scares me to

> think

> > that all this could have been some strange infections brewing in a

> > little body that could not fight it. But At least , at last I

feel

> we

> > are on the right track.

> > I apologize for being so long winded however, I know I have heard

so

> > many similarities in Mike's progression with stories on this list

> that

> > I hope that telling this story will in some way help one of you.

> Look

> > at all the weird little signs in your children- you know the ones

> that

> > your doc dismisses- be persistent and consider that these may be

> very

> > important clues in finding the answers.

> > Sincerely, Faye

[Guest guest]

-Hi

Just thought I would post to let you know that I am here if you have

questions about our progress with Mike- popped into this site today

and was surprised to see this old post. FYI- for us the type of

antibiotic made a big difference- ammoxil worked- penacillin didn't,

biaxin didn't. We actually experimented with this as our doc was

nervous about long term use of amoxil due to possible gastro upset-

Mike already had lots of gastro problems- so we tried other

antibiotics. Some gave slight results- some no results. For us amoxil

was the best. Nobody has ever been able to explain why- and believe me

alot of Doctors here in eastern Canada have scrtached there heads over

this.

Just write if I can help in some way.

Mike continues to do extremely well and we are so glad we stumbled

onto the immune theory.

Faye

-- In ketogenic , " stocktonmom2002 " <clmay32@m...> wrote:

> Thanks everyone, for going to the trouble to think of us and look up

> this post. It is so interesting to me! I am going to go back and

> look at my calendars to see what kind of coorelation I can see. I

> don't remember how much better Stockton's seizures got with each

> antibiotic, but I do remember that they were better - sometimes

> amazingly and sometimes slightly. I wonder if the type of antibiotic

> makes a difference. I'm definitely going to look into this

> possibility. Thank you all!!

>

>

>

>

[Guest guest]

Faye,

How crazy that you just happen to be here! I noticed that post was

dated in 2001 and thought to myself, " I wish I could get in touch

with that mom. She's probably long gone by now. " I'm so glad you're

still here! I have a million questions for you, but don't even know

where to start. I'll just start spilling them:

Did you see any indicators of this immune problem before Mike started

being sensitive to foods? Is there anything I should be looking

for? I can't think of any signs Stockton may have, other than

catching a lot of colds through the winter and sometimes struggling

to get rid of them. The colds definitely trigger more seizures, but

that's normal, too.

Did Mike have any GI problems before the few months into the diet?

The only problems we are having is fairly loose stools that don't

move on their own, but I've been told this is common with the diet.

What was it about the immune disorder that cause the food sensitivity?

Is there any way to test for this immune disorder? Or is it just a

guessing game, like everything else seems to be. Stockton has been

tested for everything that might possible be connected to his

seizures. All tests have come back normal.

Are there any side effects to the IVIG treatments?

Do you know what antibiotics you tried? Would it be a lot of work

for you to list them for me and note how Mike reacted to them? Or

would this not really apply to Stockton? Does one child respond the

same as another with this disorder, or are they all different?

Did you see an immunologist to look into this further before starting

treatment?

What causes this immune disorder? Or are they just born with it?

Sorry for all the questions - you are my lifeline! I really

appreciate you coming back to help others here. I'm so glad Mike is

doing so well. You were definitely blessed by an ear infection!

Thank you!

[Guest guest]

Faye,

One more question - Does this disorder have a name?

I just went back through Stockton's records and can find three times

when Stockton was given antibiotics over the last year. Two of those

three times, the awful seizures completely stopped or nearly

completely stopped for 4-5 days. The other time the seizures

gradually reduced as Stockton got over the illness. The antibiotic

seemed to make no difference in seizures. I am now in the process of

finding out what each antibiotic was to see if there is a pattern.

The other interesting thing I noticed was that at one point when

Stockton had been sick with a cold for weeks on end, we were trying

alternative therapies. I'm not a fan of these therapies, and they

didn't seem to help Stockton much at all. But when we supplemented

with a fairly high dose of an immune system builder, Stockton had

relatively fewer seizures for about a week. Not a big difference,

but a difference. Hhmmm. Did you ever try any altenative

therapies? Did they help at all?

[Guest guest]

-HI JENNIFER

>

> One more question - Does this disorder have a name? MIKE's IMMUNE

DISORDER IS CALLED HYPOGAMMAGLOBULINEMIA OR IgG DEFICIENCY-

SPECIFICALLY MIKE IS DEFICIENT IN IgG SUBCLASSES 2/4

>

> I just went back through Stockton's records and can find three times

> when Stockton was given antibiotics over the last year. Two of those

> three times, the awful seizures completely stopped or nearly

> completely stopped for 4-5 days. The other time the seizures

> gradually reduced as Stockton got over the illness. The antibiotic

> seemed to make no difference in seizures. I am now in the process of

> finding out what each antibiotic was to see if there is a pattern.

>

> The other interesting thing I noticed was that at one point when

> Stockton had been sick with a cold for weeks on end, we were trying

> alternative therapies. I'm not a fan of these therapies, and they

> didn't seem to help Stockton much at all. But when we supplemented

> with a fairly high dose of an immune system builder, Stockton had

> relatively fewer seizures for about a week. Not a big difference,

> but a difference. Hhmmm. Did you ever try any altenative

> therapies? Did they help at all? DID ALOT OF ALTERNATIVE STUFF-

TAURINE, VIT THERAPY, NAET, CRANIO SACRAL. SEEMED TO HAVE SHORT TERM

RESULTS BUT NOTHING LONG LASTING- PROBABLY MORE OF A PLECEBO THAN

ANYTHING.

> FYI- MANY KIDS WITH IMMUNE ISSUES DO NOT HAVE SUCH A SEVERE

DEFICIENCY TO WARRENT IVIG RATHER THEY GO ON PROPHYLACTIC ANTIBIOTICS-

SEEM TO HAVE GOOD RESULTS. I STILL HAVE AN OUTSTANDING SCRIPT FOR

AMOXIL FOR MIKE. HE GETS MONTHLY IVIG BUT IF HE GETS AN EXTRA BUG

BETWEEN IVIG- SINUS INFECTION OR WHAT EVER- WE GIVE A COURSE OF

ANTIBIOTIC AND IT HELPS KEEP THOSE NASTYS AT BAY.

>HOPE SOME OF THIS RAMBLE IS HELPING.

Faye

>

[Guest guest]

Faye,

Thank you so much for all your answers. Every word is appreciated.

I totally understand about not being able to talk about these things

in any brief manner. I feel this way every time anyone asks me how

Stockton is doing.

Thank you for the time you spent answering all my questions. I am

going to do some research and some talking with doctors. I will keep

you updated with what I learn.

Thanks again!

[Guest guest]

,

Wow! That stuff is deep! Thanks for the info. I will print it out

and look into it as well.

> Faye and ,

>

> One sort of startling thing I found a year or two ago is that if

you have

> an undersulfated glomerular basement membrane, as can happen in

diabetes,

> it can make it where molecules with a high anionic charge which

normally

> would not make it through the filter, will end up in the urine.

They are

> normally repelled by the very negative charge of the kidney's

sulfated

> GAGs, but without that type of barrier, they will end up in urine.

Among

> these molecules are some immunoglobulins, and their loss can make

you

> become immunoglobulin deficient, but selectively, because the

charge on

> each subclass is a bit different. So the subclass deficiency can

arise not

> from lack of production of the immunoglobulins, but rather from

their

> selective loss. This may happen with the IVIG as well, if the

missing

> anionic charge in the glomerular basement membrane is not

restored. I

> don't know if your doctors knew to check the urine for

immunoglobulins!

>

> This is the same sort of situation that makes the gut get leaky.

>

> Here is an article talking about this issue:

>

> Diabetes. 1991 Dec;40(12):1685-90. Related Articles, Links

>

> Charge selectivity of proteinuria in type I diabetes explored

by Ig

> subclass clearance.

>

> Pietravalle P, Morano S, Cristina G, De Rossi MG, ni G,

Cotroneo

> P, Ghirlanda G, Clementi A, ni D, Di U.

>

> Department of Endocrinology, University La Sapienza, Rome,

Italy.

>

> To investigate the role of protein charge in early diabetic

> proteinuria, the clearance of proteins differing in charge and/or

size

> (anionic and cationic Igs, albumin) was evaluated in 98 insulin-

dependent

> (type I) diabetic patients selected as a representative sample of

the 418

> patients attending our clinics. Of the patients, 12.9% were

> microalbuminuric and 4.8% were macroalbuminuric. Anionic and total

IgG

> clearances were significantly increased in 30.6 and 12.2% of

patients and

> were correlated with duration of disease. Anionic IgG4 clearances

were

> increased in patients (9.2%) with normal IgG excretion, suggesting

that

> charge-selectivity impairment is responsible for protein loss.

Anionic Ig

> clearances were also higher in some patients (14.3%) with normal

albumin

> clearance, probably as a result of different glomerular filtration

and/or

> tubular reabsorption. The anionic-cationic IgG clearance ratio

tended to

> increase in parallel with albumin clearance, but once above

> macroalbuminuric levels, it tended to fall again, indicating the

> concomitant presence of size-selectivity loss. The anionic IgG

clearance

> and the anionic-cationic IgG ratio, in addition to albumin

excretion, may

> be valuable in assessing early kidney protein charge-selectivity

impairment

> and better characterizing normoalbuminuric patients and those in

the

> preclinical stage of diabetic nephropathy.

>

> PMID: 1756909 [PubMed - indexed for MEDLINE]

>

> Diabetes Res Clin Pract. 1993 Oct-Nov;22(1):45-51. Related

Articles, Links

>

> Glomerular clearance and tubular reabsorption of IgG1 and IgG4

in

> microalbuminuric patients with non-insulin-dependent diabetes

mellitus (NIDDM).

>

> Ishibashi F.

>

> Ishibashi Clinic, Hiroshima, Japan.

>

> The alteration in glomerular clearance (GC) and tubular

reabsorption

> (TR) of IgG subclass (IgG1 and IgG4, same molecular weight, but

differing

> charge) was investigated in 14 microalbuminuric patients with

> non-insulin-dependent diabetes mellitus (NIDDM) by inhibiting TR of

> proteins by L-arginine infusion; 16 healthy volunteers served as

controls.

> In healthy volunteers, GC was in the following order: IgG1 > IgG4 >

or =

> albumin. In microalbuminuric patients, as compared with control, GC

of

> albumin was increased significantly; the GC of IgG4 was twice that

of

> control, while GC of IgG1 decreased reciprocally. The TR in

controls was in

> the following order; albumin > IgG1 > IgG4. In microalbuminuric

patients,

> TR of albumin was significantly reduced, TR of IgG1 was moderately

reduced

> and that of IgG4 remained at same level as controls. These

observations

> suggest that the enhancement of GC of albumin in NIDDM was produced

by an

> impaired glomerular anionic charge barrier, while the mechanism for

the

> reduction in TR of albumin was attributable to other undefined

mechanisms.

>

> PMID: 8137716 [PubMed - indexed for MEDLINE]

>

>

>

[Guest guest]

Faye,

Just wanted to let you know I contacted the pediatric immunology

office at our local children's hospital. As with your experience,

the lady I spoke with had not heard of immune issues causing

seizures. I explained what I had read here and she said they would

be glad to do a work-up if we were concerned, but our PCP would have

to call and talk to the immunologist to refer us. So, I talked with

our pediatrician and, although he felt it was a remote possibility,

he said it wouldn't hurt to check it out, considering the

circumstances. He said he knows the immunologist and would contact

him to discuss Stockton and make arrangements for testing to be

done. I am so grateful we have such kind and understanding doctors.

I'm afraid more stubborn or arrogant doctors would not have agree to

arrange for this testing. Thank you for your help with this! I'll

have to let you know how it all turns out. I don't know that

anything will come of it. There are quite a few things Mike was

exhibiting that Stockton doesn't, but at this point it's definitely

worth checking into if only for my peace of mind.

Oh! And I asked our ketogenic dietician at Hopkins about this. She

thought it was interesting because she has had a rare few kids (one

of them in the hospital initiating the diet now) who have experienced

a definite decrease in seizure activity with antibiotics. She said

the doctors don't usually think this is significant, but that she

would look into it if she were us. She said the positive reaction to

antibiotics is definitely not the norm in her experience, but that

there are those children who do react positively and it would be

interesting to know why. Just food for thought!

Thanks again!

[Guest guest]

This actually was one of the things that concerned me, because in my

son's original dx as a possibility the doctor listed " autoimmune? " .

I searched and tried to put the pieces to the puzzle together, to no

avail, although I don't give up on some sort of link...somehow...

This is one website I found, thought you may be interested:

Our experience in studying the effects of antibodies on ion channels

in the nervous system has recently led to an interest in the

aetiology of epilepsy.With the support of a Wellcome Trust SHoWCASe

award, we are investigating the possibility that certain forms of

epilepsy are autoimmune. Epilepsy is an extremely common disorder,

affecting 1-2% of the population at some point in their lives. There

is an enormous diversity in the epilepsy syndromes: some have an

identifiable cause for their seizures, for example genetic defects or

structural brain abnormalities, but many epilepsies remain without an

explanation (see figure). In conjunction with 's group

we are currently exploring the possibility that serum antibodies may

be present and produce functional effects on some of the different

ion channels normally involved in excitation and inhibition in the

CNS.

http://www.imm.ox.ac.uk/pages/research/neurosciences/lang.htm

[Guest guest]

--Hi Saro

So sorry to hear what is happening with Rohan just now. I hope it

settles quickly.

I agree with you, there have always been alot of similarities between

Rohan and MIke- so this may be worth looking into for you. In regards

to the emerg med- we have actually given Mike very few of these- tried

ativan and diazepan but neither did anything for the seizures- just

make him a drunk kid seizuring- now keep in mind that he has never

been in convulsive status- non convulsive yes- but drugs didn't help-

time seems to be the only answer for mike.

Testing can begin with a simple blood test- immune panel looking at

IgG total and subclasses. If this is abnormal then further testing is

warrented.

Hope things improve soon.

Faye

> - In ketogenic , Jay <sanal@s...> wrote:

>

> >

> >

> >

> >

> >>

> >>

>

>

>

>

[Guest guest]

HI

You are to be applauded- you have achieved in a week what it took me

about 4 months to accomplish. what we are seeing here is definately

not the repported norm so it often takes docs a long time to listen- I

say reported norm because I think many parents see what we have but

docs are not familiar with it. Also I have talked to almost as many

parents who see an increase in seizures with antibiotics as a

decrease- just goes to show how individual all our kids are.

JUst one more point for you- be sure the immunologist you see is

familiar with Primary Immune Diseases. We actually saw two

immunologist before we found one familiar with such issues. Many

paediatric immunologists are actually specialized in allergy immune

issues and can help very little with IgG stuff- however we did get

some very good advice on which new pillows to buy- lol- just make sure

your doc is knowledgeable- this is pretty rare stuff.

Faye