Cure for every child

[cobbiemommy]

I guess I am going through a down phase. We are being jerked around by the insurance company and DS is now a week late for his IVIG and I don't forsee him getting one before the new year, if at all. He is moody, tired, argumentative, immature and just plain obnoxious at times. I know from his latest blood work that his T4 is very low and that means his thyroid is not working well. Thyroid is not being treated by any of his doctors.

 

I guess with all the media coverage of the horrible event in CT, it just has me thinking about the worst possible outcomes. I know my son is medically ill and has yet to overcome Mycoplasma and Bartonella, but we have been at this for sooooooo long, that I despair of ever putting all of this behind us.

 

We were to have a consult with Dr T, but had to postpone that when we did not go east for IVIg. Still waiting for last of lab tests that Dr. T ran. Is is wrong to put so much faith in yet another doctor?? I am just hoping that a new set of eyes and a new perspective might help us get to the next level.

 

I guess I just need to vent and need reassurance...

 

Cobbie

[nicklemama]

I'm wondering the same. I've been in despair since DS is in major exacerbation #3 and we are two weeks post IVIG #2. Its been 3 yrs since this started and DS turns 9 in a week. Is this to be his life? He tells me he hates his life.

[kos_mom]

I've been at this 16 years, albeit without appropriate treatment for most of it. This has been one of the bad weeks. Older kids present different problems and they've come up in spades since last weekend. I have provider problems for my DD; she's without abx with an ASO of 550 and mounting IGG and IGM myco p and growing anxiety. She's finally been able to eat after days of not even being to hold down water. I can't get her to go to the lab to do tests ordered three weeks ago. I had to hire a lawyer for something her ex-boyfriend did. My DS has driven my crazy over the last two weeks because which he's done nothing but try to select classes for his next semester; at this rate I despair he will actually make it back to college.

 

So I put up the tree and it's beautiful. Everything will work out, perhaps not in the way we had hoped or expected but they will work out.

[LindaMW]

Cobbie,

 

I am right there with you. I think this weekend's horrific events put my thoughts in places I did not want to go. But at the same time my heart just breaks for those families.

 

On Thursday, the day before, our doctor said my son has borderline aspergers symptoms. But this still is not helping treat the Pandas. They just love to give titles, but it needs to mean something in the treatment.

 

Hang in there

[Hopeny]

Cobbie I have the same questions. What is really important IMO is to treat the whole child and get help. I have accepted the fact that life will always be different now and we just need to make it the best we can. It does seem that these children can get well, but it may be a different type of well than we envisioned. Some random thoughts:

 

As Jag10 posted, sociopath (I'll call him a monster) is very different than a kid with ASD.

 

In my reading about the shooter what has been published so far, he does not seem to have been in desperately needed counseling/special schools. Also, clearly it was entirely irresponsible for the shooter's mother to keep any/so many guns in the home with someone as troubled as he was. It seems there was a huge amount of denial about the situation.

 

Four years ago I was at a 4 yo bday party and a troubeled kid in my daughter's preschool with no provcation took a very heavy wooden puzzle that had been given as a favor and whacked another kid on the head, the noise was so loud that everyone immediately fell silent. Instead of disciplining the attacker kid and taking him out, the father coddled him on his lap and stroked his hair. I was in disbelief. Again complete denial, inaction on the father's part. This kid, 8 now, is a large child and a major bully, and my daughter tells me he has a kid martial arts black belt. I doubt based on what I have seen that he is in counseling. It's very disturbing.

 

I have a friend who made an incredibly difficult decision to send her 10 yo to a psychiatric school, specifically she told me she did not want him to turn in a Columbine case and wanted to give him the best chance at a normal life, as difficult (and expensive) as the decison was for her she faced the issue and took action. In my friend's case, nothing worked and she was not able to control him (not a PANDAS situation.) I have to admit sometimes I questioned her decision in my head, but on Friday I understood it completely.

[Kathy4Him]

Mom's...

 

I too allowed myself to go to the same place as many of you this weekend...To the worry corner where I allowed my thoughts and fears about my DS life to put me in a scary place. Until my husband reminded me that we must hold on to hope and to God's promises. It does us absolutely no good to allow our minds to envision our son's and daughters as a possible criminals, or worse.

 

This is tough, it is the toughest thing I have ever gone thru, BUT..we have to keep believing our children will be well one day. KO's mom has heard this from me already. If we do not hold on to hope, then we have nothing. If we put our hope in Drs. and medicines, then we are let down when they do not work. My hope for my son's healing is in the promises of God. Yes we have great Drs. and yes he is on meds for the autoimmune illness, BUT ultimately we are trusting God to bring his healing. We must be so careful how we speak about our kids. I am so guilty of this, speaking ill about this situation. The reality is our words are very powerful. Let's all ban together and agree to speak LIFE and HEALING over our kids and see what happens.

 

I had to turn the tv off. The media loves to place blame on mental illness. What about violence in the movies, tv shows, games...Mental illness is so misunderstood. And moms...PANDAS is not a mental illness!

 

This is not the life any of us would have chosen, but we must encourage each other thru this. Praying for each of your kids!

Kathy

[lmkmip67]

It is so scary. I was almost paralyzed by fear yesterday at letting my mind run wild with me. Ian is only 9, and he can be such a sweet, huggy kid. He is said to be a wonderful friend in school. But with us he can get very argumentative and have outbursts. He is still little. But I worry. I am trying to not let fear get away with me and focus on healing. It has prompted me to make our appointment with Dr. J to explore Lyme. Like all of you, I will never stop trying to help my kid. We need to keep supporting each other and not give up hope, and keep praying. It is hard to do though when you get tired from worry all of the time and just want one week of peace. But we carry on.

 

Lisa

[LNN]

I understand how everyone feels. But maybe this will help...

I've been at this for 4 yrs now. My son has lyme and Pandas and pyroluria. We have done steroids, Pex, IVIG and now, 2 yrs of lyme treatment and counting. It does get extremely exhausting. But each time a "cure" failed, we uncovered another problem. When we eliminated that problem, the burden got lighter. The next flare was milder. It has been horrendously expensive. Horrendously frustrating. Taken its toll on marriage and childhoods. But we have come so, so far. Is he cured? No. Is he better? Much. Very much.

 

I'm not on the forum much these days. Because things are better. And I had this life that I put on hold and now things are stable enough that I need to spend more time nurturing that 80% of life I've ignored. I too once worried about what the future held. But he's gotten better. I don't worry anymore, even though there's more to do. I know now we will get there. (now I worry about his teen years and drugs and drunk driving and peer pressure and the perils of the internet - so the worry doesn't stop - the topic just changes).

 

On Saturday, I spoke to a BFF - a mom I met first on another forum and then here. She called to see how the kids had handled the news. We talked about a dozen things - and not one of them was about Pandas. She hasn't been on the forum in over a year, because her daughter is rock solid - no Pandas issues. We don't call her cured - things could change in an instant. But life is good again. The mom continues to advocate - in a big way. But she too had to nurture - and rebuild - a life beyond Pandas.

 

Unfortunately, what happens when old timers leave is that the forum stays in a perspective that no one gets well. The only stories you hear are of struggles. So it starts to feel like there's no hope. But there is. Kids do get better. it's just that some have to dig deeper, some have more than one issue that led to the crisis and therefore need more time to get well. But it will come. And then you too will find yourselves here less often - and that's what we all need to keep shooting for.

[cobbiemommy]

I understand how everyone feels. But maybe this will help...

I've been at this for 4 yrs now. My son has lyme and Pandas and pyroluria. We have done steroids, Pex, IVIG and now, 2 yrs of lyme treatment and counting. It does get extremely exhausting. But each time a "cure" failed, we uncovered another problem. When we eliminated that problem, the burden got lighter. The next flare was milder. It has been horrendously expensive. Horrendously frustrating. Taken its toll on marriage and childhoods. But we have come so, so far. Is he cured? No. Is he better? Much. Very much.

 

I'm not on the forum much these days. Because things are better. And I had this life that I put on hold and now things are stable enough that I need to spend more time nurturing that 80% of life I've ignored. I too once worried about what the future held. But he's gotten better. I don't worry anymore, even though there's more to do. I know now we will get there. (now I worry about his teen years and drugs and drunk driving and peer pressure and the perils of the internet - so the worry doesn't stop - the topic just changes).

 

On Saturday, I spoke to a BFF - a mom I met first on another forum and then here. She called to see how the kids had handled the news. We talked about a dozen things - and not one of them was about Pandas. She hasn't been on the forum in over a year, because her daughter is rock solid - no Pandas issues. We don't call her cured - things could change in an instant. But life is good again. The mom continues to advocate - in a big way. But she too had to nurture - and rebuild - a life beyond Pandas.

 

Unfortunately, what happens when old timers leave is that the forum stays in a perspective that no one gets well. The only stories you hear are of struggles. So it starts to feel like there's no hope. But there is. Kids do get better. it's just that some have to dig deeper, some have more than one issue that led to the crisis and therefore need more time to get well. But it will come. And then you too will find yourselves here less often - and that's what we all need to keep shooting for.

I think this is the post that I needed to read! I needed a kick in the pants to remind me that we are better than where we started three years ago on the pandas journey. The rages are almost non existant, but the fatigue is worse. We had a great musical concert at the middle school and he looked so handsome. He even attended his sister's musical concert, unheard of before now. I also need to remember that after each steroid burst, he has had almost full recovery (for a while). I called an advocate to work on our behalf with the insurance company (a little expensive, but eases so much stress) to pay for the previous IVIgs which were preapproved. I also faxed his bloodwork to the doc and have asked for a phone consult to ask about the thyroid. Sometimes action makes me feel better.

[Kathy4Him]

I understand how everyone feels. But maybe this will help...

I've been at this for 4 yrs now. My son has lyme and Pandas and pyroluria. We have done steroids, Pex, IVIG and now, 2 yrs of lyme treatment and counting. It does get extremely exhausting. But each time a "cure" failed, we uncovered another problem. When we eliminated that problem, the burden got lighter. The next flare was milder. It has been horrendously expensive. Horrendously frustrating. Taken its toll on marriage and childhoods. But we have come so, so far. Is he cured? No. Is he better? Much. Very much.

 

I'm not on the forum much these days. Because things are better. And I had this life that I put on hold and now things are stable enough that I need to spend more time nurturing that 80% of life I've ignored. I too once worried about what the future held. But he's gotten better. I don't worry anymore, even though there's more to do. I know now we will get there. (now I worry about his teen years and drugs and drunk driving and peer pressure and the perils of the internet - so the worry doesn't stop - the topic just changes).

 

On Saturday, I spoke to a BFF - a mom I met first on another forum and then here. She called to see how the kids had handled the news. We talked about a dozen things - and not one of them was about Pandas. She hasn't been on the forum in over a year, because her daughter is rock solid - no Pandas issues. We don't call her cured - things could change in an instant. But life is good again. The mom continues to advocate - in a big way. But she too had to nurture - and rebuild - a life beyond Pandas.

 

Unfortunately, what happens when old timers leave is that the forum stays in a perspective that no one gets well. The only stories you hear are of struggles. So it starts to feel like there's no hope. But there is. Kids do get better. it's just that some have to dig deeper, some have more than one issue that led to the crisis and therefore need more time to get well. But it will come. And then you too will find yourselves here less often - and that's what we all need to keep shooting for.

I think this is the post that I needed to read! I needed a kick in the pants to remind me that we are better than where we started three years ago on the pandas journey. The rages are almost non existant, but the fatigue is worse. We had a great musical concert at the middle school and he looked so handsome. He even attended his sister's musical concert, unheard of before now. I also need to remember that after each steroid burst, he has had almost full recovery (for a while). I called an advocate to work on our behalf with the insurance company (a little expensive, but eases so much stress) to pay for the previous IVIgs which were preapproved. I also faxed his bloodwork to the doc and have asked for a phone consult to ask about the thyroid. Sometimes action makes me feel better.

 

 

 

LLM...Thank you so much for your words of encouragement. I have been at this for 4 1/2 years, but things are better than they were several years ago. We are still not in a great place but we are taking baby steps!