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Questinging doing Monday's IVIG...


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I got the call to confirm the IVIG for Monday for Ian. It would be his 9th. We have seen no improvement from any of them. This was going to be the last and we were going to reevaluate anyway. But I am questing why we are even doing the last one, to be honest. We have to travel, over night and it comes to quite a few hundred dollars, days off of work, IVing the kid for hours each day and giving him tons of meds. I don't know. My gut is telling me to not go through with it. Hubby doesn't disagree, so we are going to talk more about it tonight. I feel like it might be just as useful to make an appointment to see Dr. B and just talk then then go through this all again for no reason. I don't know though, I know Dr. B would suggest this one last one, but my question is WHY? we have seen no improvement. We have seen more improvement from the prozac than anything else. I can vouch it is that, too. we took him off of that for a couple of weeks because of a rash (ended up being fifths disease) and his OCD started to worsen again. Then once we put him back on, it again improved. I know prozac isn't a long term answer, we are doing therapy, too. But as far as sinking over $1000 into this last treatment, when it seems for nothing and was going to be last, I just don't know. I can't get excited about it and am thinking of canceling, and talking to Dr. B about what the next course of action is. What would you do? Would you go through with it? It isn't about the money IF it is helping. But after 9, we have seen nothing.

 

Lisa

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Call and see if Dr. B. or his PA, Jennifer can schedule a conference call with you tomorrow. If yes, talk to them about this. It will cost you $100, but would save you a trip if your gut is telling you that you aren't going to do the IVIG right now anyway. And just because you don't do it now doesn't mean you can't change your mind and reschedule it in a few months. If it were me, I'd schedule a conference call ASAP. If they can't squeeze you in for the full call, ask them to have Jennifer make a quick phone call to you ASAP. If they realize you are thinking of canceling IVIG, they will want to talk to you. Because they will be scrambling to fill the slot and get someone else lined up to travel.

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Did he ever have any improvement from any of them? Even the first one? Did he ever get better and revert back?

 

If not, I personally would not pursue this any more. And, I'm very surprised that Dr b would think "9 times a charm"...if he had not seen improvement after the first couple.

I don't know your story, and if your son has active strep, classic pandas, lyme or other infectious triggers and or persisting immune deficiency or infectio, that may make IVIG a more compelling solution over traditional therapies. But, if he does well on prozac, perhaps he can tolerate an intestive CBT program?

 

Wishing you best in your decision.

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Hi there, sorry it's been such a struggle.

 

Has anything changed since the last one? Did Dr. B ask you to do something different, change abx or add anti-viral (you mentioned 5th's) anything that he used to justify giving one or two more IVIGs a try? If nothing has changed, why would the result be any different? I mean, I can see the professionals posing that it takes a long time to heal and some very sick children need many IVIGs. But NO progress after 9??? My dd12 has had that many as well and your dh was very sweet to us one time when we were both there. She has her 10th scheduled for the 3rd week of August and that will be 16 weeks after her last one. It is scheduled as a safety net. As of today, 10 weeks after IVIG #9 she is maintaining full recovery. (Lord, please do not punish us for typing that!) It took 8-9 IVIGs to get her all the way there. We are drawing labs in a couple weeks and having a phone conference in the beginning of August. If everything stands A-okay, we will cancel her 10th.

 

There were viruses & infections that caused speed bumps in her recovery process. And yeast prevented her reaching that last 5-10% for many months until this know-it-all mom appeased dd's regular doc and tested for it. Duh, size 12 foot in mouth. She was sick a long, long time before proper medical treatment was obtained and we were told she had been sick too long to respond to medical PANS treatments, but that was WRONG. So, I agree, it can take awhile, but dd was always better off after her very first IVIG than she was before it.

 

Something or string of things is impeding your boy's progress. I don't know what those things are, but if nothing has changed since his last one, I wouldn't do #9. Not now. So where do you go from here? You continue to obtain some minimal relief from psych meds while you continue to work the problem. Catch your breath, tie a knot and hold onto the end of this rope. The set of keys that will unlock Ian's health is out there somewhere and you will be tenacious enough to find those keys.

Edited by JAG10
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One more thing, have you ever looked into Dr. Nancy O'Hara? She and Dr. B share many patients. She's known for being really good at finding the keys Dr. B can't find and vice versa. She is also in CT. If we hadn't gotten to the place dd is now, she was going to be my next step. You should check out her website when you are ready and look her up on Youtube.

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Call and see if Dr. B. or his PA, Jennifer can schedule a conference call with you tomorrow. If yes, talk to them about this. It will cost you $100, but would save you a trip if your gut is telling you that you aren't going to do the IVIG right now anyway. And just because you don't do it now doesn't mean you can't change your mind and reschedule it in a few months. If it were me, I'd schedule a conference call ASAP. If they can't squeeze you in for the full call, ask them to have Jennifer make a quick phone call to you ASAP. If they realize you are thinking of canceling IVIG, they will want to talk to you. Because they will be scrambling to fill the slot and get someone else lined up to travel.

 

I will call first thing in the morning for sure. I would hope I could talk to one of them, but if not, we will make an appointment as soon as they have an opening and drive down.

 

 

Did he ever have any improvement from any of them? Even the first one? Did he ever get better and revert back?

 

If not, I personally would not pursue this any more. And, I'm very surprised that Dr b would think "9 times a charm"...if he had not seen improvement after the first couple.

I don't know your story, and if your son has active strep, classic pandas, lyme or other infectious triggers and or persisting immune deficiency or infectio, that may make IVIG a more compelling solution over traditional therapies. But, if he does well on prozac, perhaps he can tolerate an intestive CBT program?

 

Wishing you best in your decision.

 

no, he never really had any improvement. He had 4, without seeing much. Dr. B said, sometimes it takes up to 7. Ian did have a vaccine last fall (I had no clue at the time we weren't suppose to do that), and Dr. B thought that was maybe getting in the way. But he already had 4 or 5 at that point with no improvement. So he suggested 4 more treatments. This one would be the 4th of that series, the 9th in total. I have been really questioning this one for the past two weeks, but had that number 4 in my mind, plus the fact I guess I thought I should listen to the doctor. ALl along I have taken what he has said and we have done it. I know he is trying to help Ian. But it just isn't working. We are seeing a new therapist next week, one that is suppose to be good.

 

Hi there, sorry it's been such a struggle.

 

Has anything changed since the last one? Did Dr. B ask you to do something different, change abx or add anti-viral (you mentioned 5th's) anything that he used to justify giving one or two more IVIGs a try? If nothing has changed, why would the result be any different? I mean, I can see the professionals posing that it takes a long time to heal and some very sick children need many IVIGs. But NO progress after 9??? My dd12 has had that many as well and your dh was very sweet to us one time when we were both there. She has her 10th scheduled for the 3rd week of August and that will be 16 weeks after her last one. It is scheduled as a safety net. As of today, 10 weeks after IVIG #9 she is maintaining full recovery. (Lord, please do not punish us for typing that!) It took 8-9 IVIGs to get her all the way there. We are drawing labs in a couple weeks and having a phone conference in the beginning of August. If everything stands A-okay, we will cancel her 10th.

 

There were viruses & infections that caused speed bumps in her recovery process. And yeast prevented her reaching that last 5-10% for many months until this know-it-all mom appeased dd's regular doc and tested for it. Duh, size 12 foot in mouth. She was sick a long, long time before proper medical treatment was obtained and we were told she had been sick too long to respond to medical PANS treatments, but that was WRONG. So, I agree, it can take awhile, but dd was always better off after her very first IVIG than she was before it.

 

Something or string of things is impeding your boy's progress. I don't know what those things are, but if nothing has changed since his last one, I wouldn't do #9. Not now. So where do you go from here? You continue to obtain some minimal relief from psych meds while you continue to work the problem. Catch your breath, tie a knot and hold onto the end of this rope. The set of keys that will unlock Ian's health is out there somewhere and you will be tenacious enough to find those keys.

 

Thank you! I tend to agree with you. We really have not seen any improvement, no. He did get worse after the 1st one, and got better from the worsening. But he never improved above how he was before the first IVIG. And after that he didn't even really get worse, nothing really happened. He has had IVIG treatments now for 1 1/2 years almost, and I should think we should see something. I wonder sometimes about seeing a lyme doctor. But with the Igenex being negative, (twice) is that worth it? there are days I would wonder if this is PANDAS if he had not flared right after a strep infection. I am not giving up on looking for an answer. I am planning on just what you said. Taking some time on the prozac, with therapy, and catch our breath. Then figure the next step. I am happy to keep him on antibiotics for now. Or if we see him get even worse, then maybe we will know it was doing something, you know? So many questions, and so few answers.

 

 

One more thing, have you ever looked into Dr. Nancy O'Hara? She and Dr. B share many patients. She's known for being really good at finding the keys Dr. B can't find and vice versa. She is also in CT. If we hadn't gotten to the place dd is now, she was going to be my next step. You should check out her website when you are ready and look her up on Youtube.

 

No, I have not heard of her. Hmm. I will definitely look into her, thank you! There is also a doctor up her I have on my list to see if lyme was an issue. She is now treating PANDAS but I think she is more of an integrative doctor, not the traditional IVIG route doctor. She is a possibility too. I am even thinking of homeopathy at some point. so we have options.

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I talked to DH on the phone on his way home. We are going to cancel it. I will call the office first thing in the morning. I hope they can fill the slot with someone that it will help. I feel badly waiting so late, but this disorder makes me question so much, so often. It is hard to know what is right and what isn't. We will see what Dr. B suggests next.

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I think you made a wise choice at this point. It is hard to know but after 8 (right) attempts at this- I think you need to find a new avenue. It does not work for every kid! Does not mean NOTHING will work- but this may not be the course for your son. I know that was a hard choice. Good job, lmkmip67!!

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I think you made a wise choice at this point. It is hard to know but after 8 (right) attempts at this- I think you need to find a new avenue. It does not work for every kid! Does not mean NOTHING will work- but this may not be the course for your son. I know that was a hard choice. Good job, lmkmip67!!

 

Thanks! It means a lot to have the support here. I know IVIG has helped so many. I wish it would have helped us, too. But at this point, it doesn't seem to be the answer. we will keep looking for what works, that is for sure.

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Concur with everyone else and would agree that you made the right choice (or as I'm fond of saying, any choice you make regarding your child and this illness is the right one!). The one question I would have for Dr. B. is how was he continuing to justify the IVIG? Was he diagnosed as CVID? Was he periodically retesting antibody levels? Our son was diagnosed CVID and IVIG was approved based on that. We have seen some improvement after each one (I think 5 now) though some more than others. For us, Dr. B. said that treatment continues until no further progress is made. I take that to mean 1-2 past seeing no reaction...not 8! Just wondering if he is continuing treatment based on another underlying condition vice PANDAS diagnosis alone.

 

Best of luck, bill

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Concur with everyone else and would agree that you made the right choice (or as I'm fond of saying, any choice you make regarding your child and this illness is the right one!). The one question I would have for Dr. B. is how was he continuing to justify the IVIG? Was he diagnosed as CVID? Was he periodically retesting antibody levels? Our son was diagnosed CVID and IVIG was approved based on that. We have seen some improvement after each one (I think 5 now) though some more than others. For us, Dr. B. said that treatment continues until no further progress is made. I take that to mean 1-2 past seeing no reaction...not 8! Just wondering if he is continuing treatment based on another underlying condition vice PANDAS diagnosis alone.

 

Best of luck, bill

 

That is the confusing thing is that we can't find any underlying issues. He thought the vaccine from the fall may have set him back so suggested 4 more, of which we have done 3. But again, none of them have done anything that we can see. So doing the 4th seems useless to me at this point. I really want to talk to him too about everything that has been tested for. I believe we have tested for all of the co-infections he usually tests for. I have the big stack of results around here somewhere. I do know that everything he has tested for so far, has tested normal, or negative. :-/ I admit to being overwhelmed by all the tests and co-infections. But I am sure he is being very thorough.

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We too have cancelled ( about 4 weeks ago). So, it was nice to see you every 8 weeks for a year! And our husbands drew strength from each other. Hunter no longer was improving after the 4 th IVIG. Then got very very bad before #5 but continued to go down after #5 & #6. Dr B said it was the myco P keeping him from healing but after 5 different antibiotics the myco kept climbing. Dr B wasn't sure what antibiotic to try next. We decided we needed to work on the coinfection. I found a dr. that tested things that we never tested before. Dr found : H. Pylori, Epstien Bar, Myco P and Candida Glabrada. He began to treat one at a time. Dr B had already tried Fluconazole just in case it was yeast, but told me there was not really a yeast test. He continued to spiral down for several weeks, so he ruled out yeast. This doctor said that there is a test but if it shows negative, then it may still be positive but not show. However if it showed positive then it is positive. Hunter gave a stool sample that came back highly toxic but resistant to fluconazole! Well, he is on 2 different ant yeast meds and off augmentin (scary, but it build yeast so for now he is off of augmentin). Since treating yeast he is finally begining to go back up hill. We shall see - one infection at a time. I took the advice from the smart people on this forum that said if he is no longer improving from IVIG then there is probably something else going on and I should keep digging. We have a long way to go but I am determined to be in this fight for as long as needed.... But tired! Also the doctors all believe that his immune system got messed up by the 9 immunizations at 12 months & 5 immunizations at 15 months. I need to go ask my pediatrician why he gave the MMR to our son twice just 3 months apart. Because that is another weird test result... Measel & mump antibodies were "off the chart". How did I not know what they were injecting into my child! I asked for the modified shot schedule...... Beating myself up...

 

Just wanted to let you know that we won't be there either, but I bet you find a puzzle piece. Catch your second wind and dive back in! Tell your dh that Steve says hello.

 

Blessings,

Linda

Edited by 3boysmom
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Thanks for your reply, Linda! I am sorry you are still searching and struggling too. Poor Hunter. I hope he starts the upward climb again soon. I also agree with you. There is something else going on for us as well. Are you still seeing dr. B? or will you stay down there with the other doctor? I am seriously thinking about checking out the integrative doctor up here that treats PANDAS too. My feeling is they dig a bit differently for different things. I just want to take a breather for a couple of months and catch up breath. Then start digging again. Of course if Ian gets worse before that, I will certainly take him somewhere or decide another path at that point. My hope for the prozac is that it just helps us get a bit stable and get something out of therapy so he can start building some skills for the OCD. Please tell Steve that Rich says hi too and still have him email Rich if he ever wants to chat to another dad about it. It is a rocky road, for sure.

 

I am sure we will both update on the board as well, but here is hoping for improvement for both of our boys!

 

Take care, Lisa

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Well, I canceled it. It does feel like the right decision. No call from Dr. B or the PA, though. I was told I will either need to make an appointment for a phone consult or office visit. I will likely make an office visit appointment. I was kind of surprised one of them wouldn't call at least...but I know they are busy.

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Just wanted to say that following your gut was probably the perfect thing to do. Good work! Our dr. always listens to our 'gut' feelings before doing her testing/evaluation because she believes it is very important in healing.

 

3boysmom makes some good points about testing to think about.

 

My thinking in the face of IVIG was what could it hurt (and it cost less) to go to a LLMD? Just one visit. That one visit (and several afterwards) was 19 months ago and my son is at 95% or better. Reacts to illness like everyone else so far so keeping fingers crossed that will continue as well.

 

Also, unbeknownst to me, mold was an issue in our house. So, sorry to give you so much to think about, but this seems to have tipped the scales positively on healing for my son (and dh).

 

With an immune system not working properly (PANDAS/PANS), it is amazing what can work its' way into the body. Six months before my son got ill and never got better, he also had about 5 vaccinations.

 

Best wishes on healing, it sounds like you are doing a great job thinking about all the puzzle pieces and moving in the right direction.

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