Finally got the IVIG

[tpotter]

We finally got the IVIG for both my children yesterday and the day before at Dr. B's. It only took 8 months from when my (then) 14 yo was supposed to get PEX. But, at least it's finally done.

 

Both are being treated for Lyme with abx, as well, but there's no question in my mind that PANDAS is certainly part of the whole equation, and since they both have a diagnosed immune deficiency, my feeling is that they need the IVIG to help them fight everything.

 

My 15 yo actually went to school this morning (we got home at 10:00 last night,) but I suspect it's the steroids that are making him feel so good (plus we literally loaded them with fluids.) My 17 yo (who needs to be in school worse than the 15 yo), is still in bed asleep with the headache. He can't take steroids (we tried on Sunday...starting 2 days before the IVIG, as Dr. B.'s office had said to do, but immediately discontinued when he became a raging bull.) We also didn't give him as much benedryl as the other one, because he has always had an opposite reaction (makes him crazy.) But, I did let him have about 1/2 the dose, because I was concerned about possible allergic reactions.

 

Now, we just have to wait. I can't tell you what a relief it is, though. Between IVIG finally being done and knowing that insurance will pay for it for an extended period as needed, plus our school district problems that my 15 yo had because of the PANDAS/Lyme/whatever it is, and finally resolved in September (after a 3 year Due Process), I can't tell you what a relief I am finally feeling. I know there may be a lot of ups and downs (especially with all the herxing we've been seeing, and I'm probably going to start Lyme treatment in December when we have our followup with our LLMD,) but knowing that we have finally found a team of doctors who are addressing the multiple problems is just a sigh of relief.

[melanie]

Very Very happy for you!!Please let us knownhow the boys are doing Danny is 16 and the age thing I get..Were having IV #14 or #13 tomorrow cant even keep track anymore .

 

Melanie

[Fixit]

We finally got the IVIG for both my children yesterday and the day before at Dr. B's. It only took 8 months from when my (then) 14 yo was supposed to get PEX. But, at least it's finally done.

 

Both are being treated for Lyme with abx, as well, but there's no question in my mind that PANDAS is certainly part of the whole equation, and since they both have a diagnosed immune deficiency, my feeling is that they need the IVIG to help them fight everything.

 

My 15 yo actually went to school this morning (we got home at 10:00 last night,) but I suspect it's the steroids that are making him feel so good (plus we literally loaded them with fluids.) My 17 yo (who needs to be in school worse than the 15 yo), is still in bed asleep with the headache. He can't take steroids (we tried on Sunday...starting 2 days before the IVIG, as Dr. B.'s office had said to do, but immediately discontinued when he became a raging bull.) We also didn't give him as much benedryl as the other one, because he has always had an opposite reaction (makes him crazy.) But, I did let him have about 1/2 the dose, because I was concerned about possible allergic reactions.

 

Now, we just have to wait. I can't tell you what a relief it is, though. Between IVIG finally being done and knowing that insurance will pay for it for an extended period as needed, plus our school district problems that my 15 yo had because of the PANDAS/Lyme/whatever it is, and finally resolved in September (after a 3 year Due Process), I can't tell you what a relief I am finally feeling. I know there may be a lot of ups and downs (especially with all the herxing we've been seeing, and I'm probably going to start Lyme treatment in December when we have our followup with our LLMD,) but knowing that we have finally found a team of doctors who are addressing the multiple problems is just a sigh of relief.

 

I am so happy you are in a good place!!!!!!!!! I look forward to hearing of the good road ahead!!

[Tamistwins]

So happy for you and your boys I hope the ivig works for them!

[JAG10]

Oh Tpotter, I'm so happy for your family!!!!

 

All these great user-names fit you...Tenacity and NeverGiveUp; it is about time that insurance company paid up!!

 

I'm going to be battling with our same friends soon. Dd has the immune deficient labs, but not the documented illnesses to go with it, so maybe we'll get lucky or someone will have mercy on her little soul.

[sptcmom]

I am seriously happy for you. God Bless.

[kimballot]

If I could post an icon with active firworks I would!!! I am SO, SO,SOOOO Happy for you. I don't think people who are new to the site realize how LONG of a course this has been for you all... and just how many times you have picked yourself up after being knocked down by medical personnel and school personnel... but you've kept your eye on the prize and kept at it. Your tenacity is amazing!!

Edited November 18, 2010 by kimballot

[RNmom]

I am very happy to read this post tpotter! Please post the progress your boys make as you are able :-)

[tpotter]

Thank you all. I am fully expecting that things will go up and down with them, but this first day has been great.

 

As I mentioned my DS 15 went to school, and said that his brain was clear.

 

My DS 17 didn't go to school, because of his headache, but sat at the computer and the kitchen table doing about 2 hours of catchup schoolwork and homework. He's in almost all AP and honors classes (12th grade), and hasn't been able to focus for most of the week. He also said he feels "clear." I told him we have to document all of this for insurance!

 

I'll keep you all updated every few weeks. In the meantime, as I've mentioned, we are also going down the Lyme route, so there could be a lot of herxing just from that (as there's already been.) I didn't raise their doxy dose up last week like I was supposed to, because between the herxing that they were already having, and reaction to the steroid for IVIG, and the upcoming IVIG, I just decided to leave things at the level they were at.

 

My fingers are crossed.

[T_Mom]

What a great post to read today!!! I am so happy for you and will be waiting to hear how the next few weeks go--Hugs to you.

[Kayanne]

I'm so happy that you were able to get your boys IVIG! I really hope this significantly helps their healing!!

 

Please keep us posted!

[mom md]

I am so happy for your boys. I know you feel like you just ran a marathon (or two!) I iknow you are relieved but you should be very proud of yourself. You are truly a warrior.

We are three weeks out from IVIG and doing great. We are actually having a spend the night friend tonight! We still have some healing bumps but I know we are moving in the right direction. All my thoughts and prayers!