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I think Im going to give up on the IVIG


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I think Im going to throw in the towel.

 

I cant get the MD to try to raise the dosage and next friday he willn have another infussion.I seem to get 1 week a month of good then bad then OMG bad.

 

I think the biaxin isnt helping anymore either,

 

You know I think there comes apoint when insanity sets in .

 

I spend so much time with this and Im not sure If Im making it worse.

 

The sad part is I dont know what else to try.Meds didnt help,diets and supplements worked temporarily,

I told myself I would do the IV 4 x next week is #4 soo

 

Im not on the pitty pot really It may sound like I am ,but Im tired of all of the effort and spinning .I want to just accept some of this may be life long.

 

I cant understand why none of these MDs know why my son hears me stammer or why he is hearing stuttering when he hears people speak

 

I hope everyone has a great day,

 

Melanie

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Melanie, I don't have any advice but wanted to give you my sincere HUGS! I am sorry the IVIG is not working and that you are feeling no hope. Can you go to see Dr. K or someone who would give IVIG at a higher dose?

 

Susan

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Melanie,

 

Don't throw in the towel! We all have moments when we start to second guess what we see in our child/children. I understand where you're coming from...meaning the IVIG may not be working so why bother. You're not bad for thinking that. I think it's a normal reaction. But you cannot think all hope is lost You know that the ideal thing is to try to get to someone like Dr K, try a higher dose of IVIG, keep fighting for Danny.

 

 

So, the question becomes what is keeping you from that appt with Dr K? Is it the travel, is it fear that it wont work and then you will feel like you exhausted all avenues, is it the money? I know if it was my son, I'd be in such a hard spot. What do people do when they just don't have funds for IVIG and insurance won't conver it? People say "find a way". But, the reality is you can't always find a way. Talk to us. Maybe we can collectively figure something out.

 

 

Remember you have all these people rooting for you and Danny. Don't give up!

Edited by Vickie
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Melanie:

 

Heart breaking over here for you...I can really relate to your post, and we haven't even started the IVIG yet. I really do question how long a person can go on in "supermom" mode without cracking. Maybe you need a little vacation from PANDAS?? Not that you aren't living with the reality of PANDAS daily, but I mean taking a break from the reading and charting and calling and doctors appointments etc. etc. Seems like the horrible thing about this disease is that we have hope that we can fix this if we just work hard enough (do enough research, talk to enough people,convince enough doctors), and so we work and work and work. And we turn to the doctors for answers and half the time time (or more) they don't have them and wont spend the time energy we need for them to figure it out. We isolate, we forget to take care of ourselves, we question our own sanity, we don't grieve, we burn out. So maybe after this last infusion, you can take a break. Give yourself some time to just live. Do some things with your time you haven't done in a long while - for you and your family. Maybe Danny could use a break also. It may be really hard to do that (I find it hard to go even one day "pandas free" right now) But then when you feel more refreshed (could be a few days, a week, could be a month could be longer) you'll know if your ready to get back in the game and continue to pursue more answers. ((HUGS))

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Melanie,

 

This is so hard, you're right. The lack of peace and consistency is exhausting.

 

As far as the stammering goes.... Neurologically, stuttering is not well understood in general. Only recently had I heard of stuttering as a type of tic. Interestingly, stuttering is often "managed" rather than "cured" and some children outgrow it at puberty-hmmm. For those who don't, there are strategies, methods, techniques that work for a person for awhile, sometimes years, and then for no apparent reason, stop working. One method that is often successful almost immediately is DAF (delayed auditory feedback) where the person wears a device that delays the sound of their own voice and results in them speaking fluently. I know you said that Danny is reporting he hears others stuttering, not himself, but I wonder if a similar phenomena is in play here. Is he hearing stuttering with everything? TV? music? How about with reading? The brain is such an amazing and facinating organ. Can you believe that there are people who are deaf who "stutter" manually while signing? Often people who stutter will be fluent when the message is predictable rather than novel; so singing (you already know what the words are going to be in Happy Birthday) or reading- you don't have to create and organize the message. I wonder if he experiences any difference in hearing "predictable" language? I'm not trying to give you more to research, just some ideas. And this doesn't get to the underlying issue of getting him well.

 

Insanity vs. acceptance-ugh!! Sometimes, I've felt like OMG if they're not going to have any success medicating her then maybe they will have success medicating ME so I can continue to live like this! Or sometimes, I feel so distraught I have the "Castaway" nightmare where Tom Hanks has to watch Wilson drift away because he knows he'll drown if he tries to save his beloved soccer ball one more time...

 

Your feelings are totally normal. Hang in there, Melanie.

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I think Im going to throw in the towel.

 

I cant get the MD to try to raise the dosage and next friday he willn have another infussion.I seem to get 1 week a month of good then bad then OMG bad.

 

I think the biaxin isnt helping anymore either,

 

You know I think there comes apoint when insanity sets in .

 

I spend so much time with this and Im not sure If Im making it worse.

 

The sad part is I dont know what else to try.Meds didnt help,diets and supplements worked temporarily,

I told myself I would do the IV 4 x next week is #4 soo

 

Im not on the pitty pot really It may sound like I am ,but Im tired of all of the effort and spinning .I want to just accept some of this may be life long.

 

I cant understand why none of these MDs know why my son hears me stammer or why he is hearing stuttering when he hears people speak

 

I hope everyone has a great day,

 

Melanie

 

Melanie,

 

What are your son's other symptoms? Has he been evaluated for Lyme, Bartonella and Babesia? Any of these can cause neurological symptoms. If they are at the root of the problem, IVIG will not be enough.

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Melanie......this sljonln!!!!!!! I support you and what everyone here has to say in supporting you!!

I don't know what to say???.....I just want you to know I HEAR YOU!!! I love you!

I feel like we need a suppport gruop(other than this one)...

Maybe this time is the one that will do it.....maybe like dr k thinks...doing them to frequent might be striing things and i just needs time!!!

Maybe its a combination...like worrieddad...maybe the ivig was the set up his son needed to let the abx work this time....

HOLD ON!!!!!

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Hi Melanie,

 

I'm so sorry you and Danny are having such a frustrating time. Hang in there! Don't give up hope!

 

Does he respond to steroids? I can't remember - does he have other inflammatory conditions? There are other approaches to treating chronic inflammatory conditions - look at lupus, rheumatoid arthritis, psoriasis, and so many others. Typically not many go down that route because typically the other stuff helps, at least for now, but maybe you will need to go down more of that route for Danny. Some of the other drugs may seem more "serious", but in my opinion, PANDAS can be a serious condition requiring serious drugs if other routes have failed.

 

Does he have a PANDAS doctor?

 

Has he been tested for Epstein Barr? That's a virus that seems to set off PANDAS in vulnerables, and it wouldn't be helped by antibiotics.

 

 

 

 

 

I think Im going to throw in the towel.

 

I cant get the MD to try to raise the dosage and next friday he willn have another infussion.I seem to get 1 week a month of good then bad then OMG bad.

 

I think the biaxin isnt helping anymore either,

 

You know I think there comes apoint when insanity sets in .

 

I spend so much time with this and Im not sure If Im making it worse.

 

The sad part is I dont know what else to try.Meds didnt help,diets and supplements worked temporarily,

I told myself I would do the IV 4 x next week is #4 soo

 

Im not on the pitty pot really It may sound like I am ,but Im tired of all of the effort and spinning .I want to just accept some of this may be life long.

 

I cant understand why none of these MDs know why my son hears me stammer or why he is hearing stuttering when he hears people speak

 

I hope everyone has a great day,

 

Melanie

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Has he been tested for Epstein Barr? That's a virus that seems to set off PANDAS in vulnerables, and it wouldn't be helped by antibiotics.

 

 

Dont want to hijack the thread, but I keep seeing this casually mentioned but find no further information on it! It is of utmost interest to me because its one of the only things we found positive in my son. Can I asked where you heard/learned of this connection? Thanks!

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Has he been tested for Epstein Barr? That's a virus that seems to set off PANDAS in vulnerables, and it wouldn't be helped by antibiotics.

 

 

Dont want to hijack the thread, but I keep seeing this casually mentioned but find no further information on it! It is of utmost interest to me because its one of the only things we found positive in my son. Can I asked where you heard/learned of this connection? Thanks!

 

i think you may have to go to doc T....he's the one really going outside of what is "comforatble" ie other than strep

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I actually saw Dr. T reference it, but honestly, I have also had it associated with issues in my own experience and so have other family members.

 

Has he been tested for Epstein Barr? That's a virus that seems to set off PANDAS in vulnerables, and it wouldn't be helped by antibiotics.

 

 

Dont want to hijack the thread, but I keep seeing this casually mentioned but find no further information on it! It is of utmost interest to me because its one of the only things we found positive in my son. Can I asked where you heard/learned of this connection? Thanks!

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Thanks so much for all of your love.I need it.I have an appointment on Monday with the immunologist 3 pm.I want to speak to her face to face. I spoke with her nurse about the IVIG and she keeps saying Swedo doesnt speak of these dosages only on the 1999n study Thats it! I told her all of the people that had success on this site ,anyway Ill go monday (spring break) THANK GOD I can spend he week at drs offices without taking time off of work

 

I need papers people ,papers of studies successes I need to go in armed with info !!!

 

Melanie

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Has he been tested for Epstein Barr? That's a virus that seems to set off PANDAS in vulnerables, and it wouldn't be helped by antibiotics.

 

 

Dont want to hijack the thread, but I keep seeing this casually mentioned but find no further information on it! It is of utmost interest to me because its one of the only things we found positive in my son. Can I asked where you heard/learned of this connection? Thanks!

 

Not trying to distract from the topic of this thread - it breaks my heart to hear the sadness and frustration as I think we can all relate. It is hard to take a break since it something you have to face and deal with everyday, but sometimes we come back fighting even harder after a rest.

 

Here is our experience wtih EBV - EBV was the most recent known virus before both of our sons had sudden onset of PANDAS/PITAND symptoms. Our oldest had sudden onset of symptoms (OCD, severe separation anxiety, sleep problems, frequent urination, memory loss, emotional imbalance, etc) in April 2003 (4 years old) when he had EBV. He then got strep about 4 months later and that is when the tics were added to the other symptoms.

 

For our younger son, he suddenly started having tics in January 2010 with no sick symptoms. (No PANDAS/PITAND symptoms prior to this - he was 8 in Jan) We took him to doc suspecting strep, but he tested positive for EBV. Even though EBV is a virus, we put him on antibiotics and tics stopped in about 4 days. He was on abx for 30 days and then off for about 3 weeks. Tics are back and we now have him on abx again.

 

It would appear that EBV is the trigger for our kids, but both had had strep earlier in their lives. So, did the strep set them up for PANDAS/PITAND when EBV came along or was EBV the trigger? Not sure if we will every know the answer!

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I think Im going to throw in the towel.

 

I cant get the MD to try to raise the dosage and next friday he willn have another infussion.I seem to get 1 week a month of good then bad then OMG bad.

 

I think the biaxin isnt helping anymore either,

 

You know I think there comes apoint when insanity sets in .

 

I spend so much time with this and Im not sure If Im making it worse.

 

The sad part is I dont know what else to try.Meds didnt help,diets and supplements worked temporarily,

I told myself I would do the IV 4 x next week is #4 soo

 

Im not on the pitty pot really It may sound like I am ,but Im tired of all of the effort and spinning .I want to just accept some of this may be life long.

 

I cant understand why none of these MDs know why my son hears me stammer or why he is hearing stuttering when he hears people speak

 

I hope everyone has a great day,

 

Melanie

 

Hi Melanie,

 

If you decided to give Dr. K a try, you don't have to go see him. You can do a phone consult. I have mentioned before that Dr. K thinks that monthly low dose IVIG is the wrong course for PANDAS. He has been treating PANDAS with IVIG for years and has much experience with it.

 

For what it's worth, Dr. Bouboulis, who was on the Today show with Lauren Johnson the other week, changed his PANDAS protocol from monthly low dose to infrequent high dose after consluting with Dr. K. So obviosly Dr. K must have been very convincing in his reasoning to change the mind of a very talented and highly regarded immunologist.

 

Also, I know from experienece that Dr. K is more than willing to consult with other physicians concerning his protocol and his reasons for believeing that low dose IVIG does not work for PANDAS because he consulted with our pediatrician.

 

Dr. K is very good about returning e-mails. Send him a brief e-mail telling him what dose of IVIG you have been giving your son and that you don't think it is working. Ask him if he would be willing to speak to your doc. His email is DrK@webpediatrics.com.

 

Good luck, Alex

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