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Update after IVIG #6 and feel like a failure....


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We just got home from IVIG #6. we have not seen improvement really. So we thought we might take a break. But talking to Dr. B today, we came to find out a vaccine that Ian got in Oct at his well kid check could be the issue. I am not sure how I never thought about vaccines, but I didn't. I do not recall Dr. B ever mentioning them to us in an appointment. My pediatrician is basically useless so she would never say anything against them. And I never thought about it. So when they said he needed the Hep A vaccine, I didn't think anything of it. I should have, but didn't. So I feel like a pretty shitty mother for letting him get it. The last two treatments really were useless then if this is indeed causing him to worsen, which he has. And it correlates totally with the vaccine. Sigh. So we are going to continue IVIG for now and hope this vaccine works its way out of his body. How long can it affect them, anyway? We are also going to try the low dose SSRI and keep up with the therapy. I think Dr. B thought I was careless for the vaccine, but I really never thought about it. Live and learn, but in the meantime Ian suffers. Not a mistake I will make again. But in the long run, do these kids need to stay away from vaccines for the rest of their lives? I just want him to be happy and healthy. That seems like such a big request these days.

 

Lisa

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It was nice seeing you,. Ian is a real cutie! I hope I wasn't a downer. I got upset when I took a peek into our ds's red folder and saw his labs. We too will be back in 8 weeks. Steve thought you all would be there on May 7 & 8, but I think Louise said you all are the 8 & 9. I may be wrong, but either way, maybe we will see you again. Did Ian try Hunter's trick for taking out the needle? Also, the middle son's AntiDnase finally moved from 1920 to 674...so, that was good news that I was anxious about seeing! Hang in there and we will compare notes soon ( hopfully we will both see improvment).

 

Prayers,

Linda

PM me if your husband wants to email mine... It seemed theraputic for Steve to connect to another dad that understood.

 

Don't beat yourself up about the vaccines, even the white paper doesn't give dirrection on that issue.

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You are doing the best you can. I agree. Do not beat yourself up. There is a lot of pressure by regular docs to get vaccines. They just seem to assume that everyone would want them...they don't even think to ask if there would be a reason not too.

And there isn't any "official" info to say PANDAS kids should avoid. Keep the faith. Your son will get better. You are a great Mom!

 

We just got home from IVIG #6. we have not seen improvement really. So we thought we might take a break. But talking to Dr. B today, we came to find out a vaccine that Ian got in Oct at his well kid check could be the issue. I am not sure how I never thought about vaccines, but I didn't. I do not recall Dr. B ever mentioning them to us in an appointment. My pediatrician is basically useless so she would never say anything against them. And I never thought about it. So when they said he needed the Hep A vaccine, I didn't think anything of it. I should have, but didn't. So I feel like a pretty shitty mother for letting him get it. The last two treatments really were useless then if this is indeed causing him to worsen, which he has. And it correlates totally with the vaccine. Sigh. So we are going to continue IVIG for now and hope this vaccine works its way out of his body. How long can it affect them, anyway? We are also going to try the low dose SSRI and keep up with the therapy. I think Dr. B thought I was careless for the vaccine, but I really never thought about it. Live and learn, but in the meantime Ian suffers. Not a mistake I will make again. But in the long run, do these kids need to stay away from vaccines for the rest of their lives? I just want him to be happy and healthy. That seems like such a big request these days.

 

Lisa

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Hi Linda,

 

THank you for your positive words. You have so much more to deal with than I do, I should not whine. I guess it just gets to be a lot for all of us at times. I am glad to hear your middle son's numbers went down some, any positive news is great!! Yes, we will be there on the 7th and 8th (that Monday and Tuesday). Will you be back those same days? I have a huge preschool portrait shoot I do in May and if it is that week I may have to stay home. But I am not sure yet. I am trying not to beat myself up about it. I know I couldn't help it. I guess I am just disappointed too that something we could have avoided happened anyway. But going forward, I keep learning! In some ways it game us a bit more hope, too. I hope that you see some improvement soon with your oldest, too. I know how hard this is and you got it x3. Blessings to all!

 

Yes, I am PMing you! Rich would love to connect with Steve. He also finds it therapeutic. He isn't online much so it is great if they can find someone to talk to as well. And thank you for being so open, I really enjoyed getting to know you guys and you have wonderful kids. All the kids are so awesome, it breaks my heart to see all our children dealing with this.

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Oh, I'm to hear about Ian, but now you may have a.reason reason why the IVIG wasn't working. As much as I like Dr.B and think he is really helpful, he has a lot of patients, and I think some things that he means to say sometimes slips his mind. He did tell us no vaccinations for DD, and my other children as well. But I do think I had to ask him. And the only reason I knew to ask, is because of what I read on here. Also, he never mentioned for me to give probiotics. But again, I knew from looking here.

I hope you start to see some improvements soon! We need more PANS specialists so the 4 specialists now wouldn't have their hands so full.

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THanks, Kara and Colleen! I am realizing it is more my extreme disappointment in that we could have avoided it. Because your all right, it isn't my fault. Or anyone's really. Just something to look into, and your right, mayeb a reason now why it wasn't working. So many issues with this illness. I wish I was more helpful to some here. I just haven't had positive news to share much yet. Maybe my posts will at least be helpful in the long run if they are not seeing improvement. You never know. I don't know what I would do without this place though, I feel sane here. lol :)

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Yes we will be there mon & tues....not my buisness......but please check your dates (by calling or emailing the office) because I heard Steve tell the nurse (Louise) that he was almost sure that Rich said mon & tues and Not tues & wed ......

 

 

Blessings!

Linda

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Oh Lisa, live and learn. In Oct 2009, my dd12 saw Dr. Elia at CHOP for another opinion. She suspected PANDAS, but thought she had it too long to treat. She made a list of 9 recommendations starting with SSRIs.....CBT.....H1N1 vaccine......Flu vaccine.......ASO, anti DNAse B.

Yes, the pandas expert who sat at the NIMH consortium in 2010 as CHOP's pandas bigwig recommended H1N1 and Flu vaccine before serum markers for strep. And I followed her recommendations. Those were the last vaccines my girls got. I don't know that my girls got any worse, she was pretty messed up, so it would have been hard to tell. My point is that someone regarded as an expert in pandas was RECOMMENDING vaccines in the not so distant past. I'm not convinced all vaccines are bad for our kids, but as long as the medical community refuses to take an honest, trustworthy look at the subject, we won't know which ones are necessary and not risky.

I hope he feels better soon.....you too.

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Thanks, Jag10. Feeling so much better after being at home and getting the little bug tucked into bed. You are all right. I think it is time for me to take some time for myself this week and get a bit of a break. I was submersed in this stuff the past two weeks, with him being so much worse. Likely I am just overly stressed. Live and learn. I am not going to worry too much about more vaccines now, but just plan to hold off and see how things go this year.

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Hi! I was at Dr. B.'s too--I am Elliott's mom (from OH-the room next to you). Please don't beat yourself up!! You are doing everything you can to help your son. Our ordeal began 2 years ago after we vaccinated Elliott. I know it was a combination of things that caused his health to decline-the vaccine was just the straw that broke the camel's back. For some reason, our kids have a higher sensitivity to these things. But we will all find a way out of this. I felt so guilty in the beginning (and I am not prone to that kind of thinking!), but I only did what the docs told me to do at that time. We are all smart, careful, loving moms. It just sucks to go through all of this. Hope you see some improvement soon! We will be back in 8 weeks, too, but I am very careful about what I talk about in front of Elliott (it can cause us problems). I look forward to seeing you again, though!!

Jennifer

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Lisa,

 

Did your Dr. elaborate at all on how the vaccination may have caused an issue? He must suspect something. From the package insert, it contains viral antigen and aluminum hydroxide. Polysorbate 20 etc.

 

http://us.gsk.com/products/assets/us_havrix.pdf

 

Was the discussion just about immune system activation or anything more specific that you can share?

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