IV #10

[melanie]

Sitting here awaiting the arrival of the iV nurse for IV #10. I am getting tired of these IVs ,Danny isnt looking forward to this either but since he doesnt really know about this site I can just speak of my own feelings.

I am very confused about the next step to take .I said I would continue these IVs as long as he was showing progress.

His OCD is ramped up and he isnt fun to be around.My personality is directly effected by his behaviors.Im becoming a misarable human being,whos not much fun to be around either.

I think I may abondandon this IV thing ,maybe ,I dont know .I have seeen some good stuff but Im not sure anymore.Its been a rough few days and im feeling lost and tired.

 

Thanks for listening the nurse just got here.Here we go again

 

Melanie

[kmom]

I don't have much advice about the medical side of it since you are farther along than our situation but as far as how you r feeling, it's great u express it especially on here where we all understand. I finally went to an overdue yearly gyno exam yesterday. When dr. noticed I was overdue I briefly explained how I unfortunately entered the PANDAS world and you eat, sleep and breathe it. And at the end of the day, the last thing you think of is your own health let alone making an appt w/ yet another dr. But I knew it was the smart& responsible thing to do to keep myself healthy. She told me at the end that no matter what, find time for myself to reboot whether that be a nice longer break or only a 5 min. moment alone in a quiet room to regroup, meditate, stretch, etc. I joked and asked her to write a prescription for that so it would be my "time out/reboot" pass. So good for you for venting. It's normal for all of us to act according to how our kids are feeling b/c we want the best for them. Try focusing on all the great stuff you have done for him thus far. I have a 30 year old cousin who I would bet any amount of money started off in a PANDAS/PITANDS situation as a child and back then the docs he went to only knew to put him on SSRI's and Ritalin for his OCDs, irrational fears and hyper activity. He had a nervous breakdown at age 14 or so and things spiraled more out of control. He refused meds b/c they made him feel worse. He refused to let anyone touch his food and he limited his food to 3 items...orange juice, yogurt and steak. He's only gotten worse over the year and basically doesn't come out of the house, hasn't brushed his teeth since the breakdown and the list goes on and on. I've tried to get my aunt and uncle to work w/ Dr. T. to get him even a little better but they have no clue how to do it when he refuses treatment...long story! Whenever I feel down about my situation, I think of how much worse things could be and it gives me a boost and that extra fire to fight so that my kids' fates are different than that sad sad situation. I know experiencing glimpses of my cousin's life growing up has made me practically OCD about fighting back against PANDAS. I am in no way trying to minimize your situation either. Just reminding you that you are doing a good job! Would any another opinion from another specialist help?

[Fixit]

Sitting here awaiting the arrival of the iV nurse for IV #10. I am getting tired of these IVs ,Danny isnt looking forward to this either but since he doesnt really know about this site I can just speak of my own feelings.

I am very confused about the next step to take .I said I would continue these IVs as long as he was showing progress.

His OCD is ramped up and he isnt fun to be around.My personality is directly effected by his behaviors.Im becoming a misarable human being,whos not much fun to be around either.

I think I may abondandon this IV thing ,maybe ,I dont know .I have seeen some good stuff but Im not sure anymore.Its been a rough few days and im feeling lost and tired.

 

Thanks for listening the nurse just got here.Here we go again

 

Melanie

 

Melanie...so sorry...this is tuff...and you are tuff...

maybe take that break from the current ivig method...

you said doc b thought a different program might be better...maybe you need to consider that option..

it's terrible...maybe you need a differnt abx too...

i'm gonna through out a couple thoughts...some are out there

 

TSO-helminthic therapy(or check for other worms that shouldn't be there)

acupuncture..there is magic one outside of philly in nj..i wanted to check out..weird a freind of mines has been talking about this guy for years..than a mom on the ts board brings him up

not sure if you've tried gfcf diet...

there is a "brain balance" progam i used at the onset of this..and he got better but not cured and they were the people that put ds on taurine

the Dan doc's have all types of little tricks...and Ldn wakes these kids up with blue birds on their shoulders...

the tmj thing i also did might do something(i know moms who swear by it)..but mostly they relate that to tics...

[NancyD]

Hi Melanie,

 

Haven't you been doing low-dose infusions (i.e., 1g/kg or less) all along?

 

We were in a similar position. Although we started at 1.5g/kg with the first infusion in 2008 we were doing anywhere from .5g/kg to 1g/kg every 28 days. The first year was great and I believe it was because of the initial high-dose infusion. But then I noticed a bit of regression during the 3rd week after each infusion. We even tried pushing up the infusion to 21 days. Finally last March I convinced the doctor to try another high-dose infusion at 1.5g/kg and wait at least 3 months to let the antibodies settle before trying another infusion. Although the recovery time on the high-dose infusion is so much longer (2 1/2 months for my daughter), the results are SO MUCH better!!! It has been 5 1/2 months since our last infusion and if we don't do pheresis in Oct as we had hoped we will do another high-dose infusion to get us through the winter. In hindsight, I wish we had only done a single high-dose infusion and then stopped.

 

Isn't there anyway you can convince your doctor to try one infusion (1.5g/kg to 2g/kg) and then stop for a few months to let the antibodies settle?

 

Nancy

[melanie]

Hi

 

Thanks for the responses I always like to see what other on this site think.I know you all know how i feel.i spoke with Dr Js nurse today and I have an appointment next Friday hope she will up the dosage but shes not easily convienced of much..We were on flagyl for 2 months she ants him off of that now too,We do 1g per kilo every 21 days and it definitly stops working after 14 -16 days.Some blips lots of good stuff.All of his behaviors come from sounds!! Every sound causes a behavior,so weird.Certain voices cause him to tic or get him angry.So weird.

 

Todays IV was 6 hrs almost done .

Melanie

[saidie10]

so sorry melanie. i hope you find the answers to get you and your family through this and i hope he did well...

[EAMom]

Hi Melanie,

 

I've got to agree with both Nancy's....you need to do high dose (1.5-2.0 gm/kg), not low dose so frequently.

 

What antibiotic is Danny on?

[melanie]

he was on flagyl until yesterday.Finished .I see her Dr J on Friday I know shes contemplating higher dosage with him.Hes doing real well today,always does for a week or so.Hes going to camp for 5 days hope so at least they will see the good danny

 

Melanie

[thomasmom]

Hi

 

Thanks for the responses I always like to see what other on this site think.I know you all know how i feel.i spoke with Dr Js nurse today and I have an appointment next Friday hope she will up the dosage but shes not easily convienced of much..We were on flagyl for 2 months she ants him off of that now too,We do 1g per kilo every 21 days and it definitly stops working after 14 -16 days.Some blips lots of good stuff.All of his behaviors come from sounds!! Every sound causes a behavior,so weird.Certain voices cause him to tic or get him angry.So weird.

 

Todays IV was 6 hrs almost done .

Melanie

 

I am so sorry that you have to go through all of this. I have to ask you and other multi IVIG moms. Does your insurence cover all these times ? We are struggling to get #2 paid off

[melanie]

HI yes insurance pays he has an id dx so its covered

 

melanie

[matis_mom]

Sitting here awaiting the arrival of the iV nurse for IV #10. I am getting tired of these IVs ,Danny isnt looking forward to this either but since he doesnt really know about this site I can just speak of my own feelings.

I am very confused about the next step to take .I said I would continue these IVs as long as he was showing progress.

His OCD is ramped up and he isnt fun to be around.My personality is directly effected by his behaviors.Im becoming a misarable human being,whos not much fun to be around either.

I think I may abondandon this IV thing ,maybe ,I dont know .I have seeen some good stuff but Im not sure anymore.Its been a rough few days and im feeling lost and tired.

 

Thanks for listening the nurse just got here.Here we go again

 

Melanie

All I can say is, "hang in there!" Wishing you the best!

[tpotter]

Melanie,

 

Weren'nt you going to see Dr. B? If he finds things (which he apparently did with my kids...I was on vacation this week, and I just got a message saying that IVIG is approved, so that must mean that something came back positive...yeah!), you can go to high dose.

 

Maybe it's really time to think about strategy instead of abandonment. CT isn't too far, and it may be time to say...I've tried Dr. J's approach, and now it's time to try another. Just a thought.

 

Good luck. 10 is a huge amount, and I don't blame you in the least for being so tired and frustrated.

 

Just a little aside, in response to another post. We went on a vacation this week..a cruise (hallelujah!) My 14 yo said it wasn't as great as last year, and the 17 yo said it wasn't good at all (holed himself up in the room, because there weren't many activities for him this year, for some reason.) As they were complaining on the way home, I chimed in with..."But, I finally got a chance to relax, and doesn't that make for a great vacation...you're mom isn't completely stressed!" My 14 yo responded, "yeah...I see what you mean...you haven't yelled at us in a week!"

 

My suggestion...take a few minutes for yourself, and also consider looking at HD IVIG.

 

Good luck.