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Just not sure what to do next...


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First of all, I am sorry to just vent here. I am so deflated with what we are dealing with I don't feel I have much positive to add to many threads here as I feel kind of jaded. I just talked to Dr. B on the phone as he was making the rounds in the IVIG clinic. My husband and son are down there getting his 5th. we have seen no improvement, retested for Lyme and all. Dr. B said he will do what we want, obviously. And if we want to take a break, he will not argue. But he doesn't think we should throw the towel in yet. The retested Igenex results were even less positive than the last time, so it really makes me wonder if I should bother with Lyme at all. I just don't know what else to do. We are waiting on some blood work to check co-infections again. Dr. B also upped Ian's dose today (hubby was thrilled with that, means a couple extra hours there today). During all this Ian's OCD has gotten worse. We are seeking therapy for him and a neurologist appointment in Feb. If I saw some improvement I would so fine with doing this. But I don't. I see him getting worse. His brain is overrun with all the fear, worry, etc. he is on two antibiotics and there seems to be nothing that helps. Tics he had early on went away, but those went away before IVIG. The Igenex results are so negative I don't know if Lyme is even a concern. Dr. B doesn't think it is from the test results. And I have to question dropping $$$ on a doctor for Lyme if I see no positive results at all. But I have to help this kid, he is miserable. Ok, sorry for venting yet again. I watched those girls with the tics on the Today show this morning. I feel so badly for them and hope they can get some help. I know the hopeless frustration they are feeling. There is no doubt there is SOMETHING medical going on with Ian, too. He does flare when exposed to things. But traditional treatments here are not working either. So frustrating.

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I have nothing to offer in the way of treatment suggestions, but please don't feel bad about venting here. We really understand how frustrating and isolating these things can be and I, for one, am more than happy to just be able to be an understanding shoulder to cry on.

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I am so sorry you are not getting the results with IVIG.

 

I have two daughters with pandas, and can tell you what has worked so far for us. We have not done IVIG. Both girls had sudden onset of ocd plus other symptoms that correlated with strep infection. Initially, their symptoms remitted with 30 days of zithromax- but that was not long lived. Both had subsequent triggers for pandas (exposure, other illnesses, loose teeth, looking at them the wrong way...). I am kidding there, but that first year it seemed like they reacted to everything.

 

They both had pex with great results, but not a cure.

 

We took a short, unproductive, detour into lyme.

 

They are both now (fingers crossed) the BEST they have been since pandas onset. They are both basically back to themselves- with maybe some minor residual stuff. Our current treatment protocol is to treat this as an autoimmune disorder (novel idea?). When we see ANY indication of an increase in pandas symptoms (our first indicator is certain types of moodiness, usually) we do 5 days of daily zithromax, 5 days of regular advil dosing, and for precaution a throat culture. If this does not take care of things we move immediately to steroids (either IV or a short burst). So far this year, this has handled everything for us.

 

Last year both girls had a bad flare up, that we couldn't treat immediately- so we ended up doing high dose IV steroids- which worked great, and are what started us on this path.

 

I know you will get a lot of responses about lyme treatment- and I in no way am discouraging you from looking at that. I just wanted to share what has worked for us.

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Just wondering, are you sure there isn't strep in the household (parents, siblings, even close friends)?

 

My PANDAS dd didn't really start to turn around until her assymptomatc younger sister (who had positive throat cultures) was successfully treated for strep (Augmentin didn't clear sister, she finally cleared on Azith.). And she retested positive (and we had to retreat her) a couple of times months later after strep went through sister's kindergarten class. Sister was NEVER symptomatic for strep, but would culture positive and my PANDAS dd would react (despite being on full-strength azith).

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Just wondering, are you sure there isn't strep in the household (parents, siblings, even close friends)?

 

My PANDAS dd didn't really start to turn around until her assymptomatc younger sister (who had positive throat cultures) was successfully treated for strep (Augmentin didn't clear sister, she finally cleard on Azith.).

 

I just had a strep test done last week and it was negative (had a sore throat and i always jump to test). it ended up being a slight head cold that Ian got as well. Our first all school year.He really hasn't been sick at all for months and months. No one really has in our house. Hubby hasn't had a thing and we are the only ones in the house. His sister is at college so hasn't lived here in months. She has been here to visit, but not to stay. I can ask hubby to have the doctor at work give him a throat culture.

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I'm really sorry you feel so stuck. The combo abx - has it always been the same two abx or have you tried different combos? My DS was on zith+augmentin which did nothing but then went on zith+bactrim which helped a lot and at one point, zith+bactrim+omnicef which brought big changes. So sometimes you have to experiment.

 

I can respect your doubts about lyme. And about continuing IVIG. You need to put your resources where you think you'll see results. Would you consider seeing a DAN or integrative doctor or an LLMD who treats more than lyme? I know it can feel like stepping into Wonderland, where you're suddenly on wild goose chases. I get that. But our experiences have been positive in terms of finding someone who looks at a broad range of issues and treatment options. If you're at the end of your rope, it's something to consider.

 

I hope your discouragement is short lived.

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Just left Dr. B's from IVIG & I suspect it may be your husband and son we met. (although there were 5 other dads today) your post about being on the phone makes me think that you are the mom of one VERY precious young man and a sweet husband! It was good for my husband to talk to another dad dealing with this! Best of luck, I understand!

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Just left Dr. B's from IVIG & I suspect it may be your husband and son we met. (although there were 5 other dads today) your post about being on the phone makes me think that you are the mom of one VERY precious young man and a sweet husband! It was good for my husband to talk to another dad dealing with this! Best of luck, I understand!

 

That was them! Thank you for the kind words! The precious young man can drive me nuts, but I sure missed them while they were gone. I usually go, but after 5 of them, we are going to have to divide and conquer with both of us working. Next time it may likely be just me. lol Hubby mentioned he really enjoyed talking to a few other parents there this week. I know it really, really helps him cope with all of this, so thank you for chatting with him. I guess time will tell. They gave him a larger dose (he usually gets 150 the last day and they upped it to 350). So we shall see. I hope you are seeing improvement from it!!

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We were seeing improvement but then the 5th week after IVIG #3, " things " began to resurface. That was at the same time we finished the treatment of minocyclne for mycoplasm.... Today's tests show that mycop has jumped back up high again! So....that would explain why the IVIG alone was not enough...still dealing with an active infection! This is a complicated illness and frustrating, however, try living in Texas and needing 3 kids treated...overwhelming, but glad we found a doctor that doesn't think we are munchousen (spelling?) parents! P.S. We are WAY better than 2 years ago.

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We were seeing improvement but then the 5th week after IVIG #3, " things " began to resurface. That was at the same time we finished the treatment of minocyclne for mycoplasm.... Today's tests show that mycop has jumped back up high again! So....that would explain why the IVIG alone was not enough...still dealing with an active infection! This is a complicated illness and frustrating, however, try living in Texas and needing 3 kids treated...overwhelming, but glad we found a doctor that doesn't think we are munchousen (spelling?) parents! P.S. We are WAY better than 2 years ago.

 

I can totally understand how hard that would be. I am hoping we actually find something underlying, because then that will give us some answers. I am glad to hear things are better than they were! I hope it keeps improving for your kids!!

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All of these stories that I read, everyone relapses with IVIG. I feel like these infections never leave!!

For my son, IVIG (and plasmapheresis, prednisone, 2 yrs of abx) and treatment for lyme disease were not "the" answer. Many of these things helped but not permanently. It doesn't mean these treatments don't help and don't get some kids permanently better. But for my son, it meant there was an underlying condition we hadn't yet identified and until that got fixed, everything else was a band-aid. My son's answer was a genetic zinc deficiency known as pyroluria. My daughter's issues are different and her answers will be different.

 

I don't know that you should be discouraged by stories of IVIG not being a silver bullet. It is a tool. Something that makes some kids much better off and one that helps others to lesser degrees or not at all. It depends on many factors, including what kind of infection, how long someone's been sick, what their overall health is, their diet, their genetics, their environment (do they have mold or metals exposure), etc.

 

When someone posts, try to remember that the whole picture doesn't get conveyed. This isn't a one-size fits all solution. You need to go through a methodical process of rule-outs and treatment trials and adjust course as you go. This is a complex ball of string. So I wouldn't discourage you from seeing if IVIG helped. I would just go in aware that you could have a range of outcomes. And remember that once your child gets well, you eventually leave this forum. The ones who remain have the more complicated stories. So you're seeing a skewed sampling of experiences.

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We were also in CT for my son's 4th ivig. We were in the room next to your hubby and son, and I got to talk to your husband briefly. I don't have a lot of specific advice to offer, because there are so many unique factors with each case. I can only say that we are seeing improvements, so we are continuing on with treatment. The alternatives (with neuro/psych) haven't really appealed to me, and my son definately has an infectious component. I just want to encourage you to keep on digging!! It is hard to trust this process with so many varying outcomes, but like I said, the alternatives don't seem to be solving the problem. I know we will all "get there" eventually. Don't give up!!!

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