7 Months Post IVig-Update

[ShaesMom]

Hi Everyone,

 

I wanted to share an update on how Shae has been doing. For those of you who do not know her history, I've included a link to a previous post with the details.

 

http://www.latitudes.org/forums/index.php?...amp;#entry45207

 

On Friday she is scheduled to receive her 9th monthly IVig treatment. She has been doing amazingly well since the last update. There has been confirmed strep in her classroom for the last three weeks. One of the children was in her "group" of friends. In the past we had always seen some sort of spike in her symptoms usually lasting about three days. I have not seen any increase in Pandas symptoms with these new cases of strep and she has not had strep herself.

 

She continues to receive the monthly IVig for her Immune Deficiency-Selective Antibody Deficiency. She did pick up some sort of viral infection in January. Her symptoms included swollen glands in the neck, fatigue, and she was a little grumpier than usual. It took about a month for her body to heal-she actually seemed to finally kick the infection the week following her 8th round of IVig. A couple of nights she had trouble sleeping and ended up in my bed and she wet the bed a couple of other nights. I really don't feel that these were caused by a flair in her Pandas-I just think her body was having trouble fighting whatever she had and she was exhausted.

 

She heads back to the GI Doc next month to schedule another Endoscope for the Eosinophilic Disorders. We have removed a total of 11 foods to date. She still has issues with constipation but it is much better than it was six months ago. We will be surprised if we hear that all of the eosinophils are gone--we are expecting more food allergies (mother's instinct).

 

Overall her quality of life is 100 times better than it was before-ever! I feel causiously optimistic that we are "healing" her Pandas. She will continue on monthly IVig indefinitely at this point for the SAD.

 

On a personal note--I was dx'd with Fibromyalgia a couple of years ago and adopted a Gluten Free diet in December. All of my symptoms have disappeared. Not sure how the gluten comes into play with Shae and her immune system but we suspect that there is likely some connection. I started having health problems when I was pregnant with her which just seems like to much of a concidence.

 

I sincerely hope all of you are making strides to heal your own children. God Bless!

 

Sam

[peglem]

Glad to hear everything is going so well! Couple of questions:

 

What dose IVIG does she get monthly and is monthly IVIG expected to be a lifelong ordeal?

[thereishope]

Thank you for the update! I'm glad things are going well!

[fuelforall]

This is what I mean by good symptom management!

Congrats and keep up the good work. We can all learn from you.

 

Yes to Peglem's question as well.

[Debbie1]

So glad to hear your update and hope that Shae continues to do well!

[ShaesMom]

She receives 20 grams of Gamunex every 4 weeks (she weighs about 44 pounds).

 

Peglem-I really don't know the answer as to whether or not this will be lifelong. Our Immuno has the additude that if it isn't broken don't mess with it--if the insurance company is paying don't take a chance of screwing things up by taking her off for a few months to retest and then try to get her approved again. Currently, we cross our fingers every month to see if they will pay eventhough we were preapproved. The insurance company is three months behind as it is right now.

 

He wants to re-evaluate her in two years. She has an egg and pork allergy (and Pandas) which makes immunization highly questionable and unlikely. So, I'm guessing he will just look at how often she has been sick in the last two years-recheck her titers & Ig levels (but those won't be accurate if she remains on IVIG). I really don't know what he plans on doing and I'm trying to stay focused on right now and how she is doing.

[dcmom]

Shaesmom-

thank you! and SO happy for you.

 

Just a quick question- did shae have ocd, and if so, is it completely and totally gone every day, or does she still have some mild lingering issues?

 

thanks.

[ShaesMom]

Yes-she did have OCD and tics. Her OCD was mainly obsessions, severe anxiety, repeating words and phrases, fears, food issues, minor hoarding. She never really had issues with contamination or counting that I'm aware of. Her tics were never exaggerated large movements. She had verbal tics, a sniffing tic, always had to have something in her mouth etc...

 

All OCD and Tics have disappeared. These were actually some of the first behaviors to disappear. Raging seemed to be the one that hung on the longest.

[melanie]

Im so interested in this post and thanks

 

Danny is having monthly IVs and i glad to hear that the symptoms like OCD have gotten better

 

Thanks Melanie

[peglem]

She receives 20 grams of Gamunex every 4 weeks (she weighs about 44 pounds).

 

Peglem-I really don't know the answer as to whether or not this will be lifelong. Our Immuno has the additude that if it isn't broken don't mess with it--if the insurance company is paying don't take a chance of screwing things up by taking her off for a few months to retest and then try to get her approved again. Currently, we cross our fingers every month to see if they will pay eventhough we were preapproved. The insurance company is three months behind as it is right now.

 

He wants to re-evaluate her in two years. She has an egg and pork allergy (and Pandas) which makes immunization highly questionable and unlikely. So, I'm guessing he will just look at how often she has been sick in the last two years-recheck her titers & Ig levels (but those won't be accurate if she remains on IVIG). I really don't know what he plans on doing and I'm trying to stay focused on right now and how she is doing.

 

Okay, I did the lbs to kg conversion and that's @ 1gm/kg every 4 weeks. I think that's about what Allie will get every 3 weeks, and w/ the discussion on here about "proper" IVIG dosage, I was worried it wouldn't be enough and I'm afraid we wouldn't be able to get the higher dose, so really, really happy to hear the lower dose is is effective for you!

 

I like your immuno's attitude!

[Megs_Mom]

I am SO happy for you! What terrific news. Thanks so much for posting!

[ShaesMom]

She receives 20 grams of Gamunex every 4 weeks (she weighs about 44 pounds).

 

Peglem-I really don't know the answer as to whether or not this will be lifelong. Our Immuno has the additude that if it isn't broken don't mess with it--if the insurance company is paying don't take a chance of screwing things up by taking her off for a few months to retest and then try to get her approved again. Currently, we cross our fingers every month to see if they will pay eventhough we were preapproved. The insurance company is three months behind as it is right now.

 

He wants to re-evaluate her in two years. She has an egg and pork allergy (and Pandas) which makes immunization highly questionable and unlikely. So, I'm guessing he will just look at how often she has been sick in the last two years-recheck her titers & Ig levels (but those won't be accurate if she remains on IVIG). I really don't know what he plans on doing and I'm trying to stay focused on right now and how she is doing.

 

Okay, I did the lbs to kg conversion and that's @ 1gm/kg every 4 weeks. I think that's about what Allie will get every 3 weeks, and w/ the discussion on here about "proper" IVIG dosage, I was worried it wouldn't be enough and I'm afraid we wouldn't be able to get the higher dose, so really, really happy to hear the lower dose is is effective for you!

 

I like your immuno's attitude!

Her dose is consistant with what is "normal" for the SAD side of her dx. She is not being treated with monthly IVig for the Pandas. She did receive a dose of 2gm/kg over two days back in July for the Pandas. The larger dose is consistant with what other autoimmune illnesses are treated with according to my Immuno. I wish Shae had IVig every three weeks because she seems to have a return of fatigue and leg pain for two to three days before IVig each month.

[peglem]

I wish Shae had IVig every three weeks because she seems to have a return of fatigue and leg pain for two to three days before IVig each month

 

Yes, Allie's immuno said they (at his office) prefer to do it every 3 weeks because it keeps the IgG levels more stable. I'm getting a bit anxious waiting for insurance approval- seems like we've been getting a lot of "guff" from the insurance companies since the beginning of the year (new policies or something), and, though the immuno seemed VERY confident that there would not be a problem...I can't help but think there will be.

[ShaesMom]

I wish Shae had IVig every three weeks because she seems to have a return of fatigue and leg pain for two to three days before IVig each month

 

Yes, Allie's immuno said they (at his office) prefer to do it every 3 weeks because it keeps the IgG levels more stable. I'm getting a bit anxious waiting for insurance approval- seems like we've been getting a lot of "guff" from the insurance companies since the beginning of the year (new policies or something), and, though the immuno seemed VERY confident that there would not be a problem...I can't help but think there will be.

It is so great to hear that your daughter is finally getting treatment. I hope insurance comes through and all goes well.

[sf_mom]

Thanks for posting and I look forward to further to more positive updates. We are also finding the mood switching/liability is the lingering symptom. BUT, we were just re-exposed to strep last week again.....

 

-Wendy