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New hope for the new year


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I've not posted much recently because I had little good news to post. However, things seem to be turning around.

 

DS15 was heading downhill over the summer and into the Fall. Life was not good here. Rages, school refusal, fatigue, failing grades and no motivation. He had gained a ton of weight, ate nothing but junk, and spent much of his time ordering me to go out and buy more junk or raging that we only had healthy food in the house. When he wasn't doing that he was on x-box swearing and killing people. I am not joking. I need to tell you, also, that this is NOT what I have tried to raise!

 

He gets IVIG every 6-8 weeks and in October Dr. B confirmed that the "stretch" marks he was developing on his trunk were indeed bartonella. A look back at lyme testing showed the bands that are bartonella specific were the bands that were "indeterminate" in the lyme testing 2 years ago - before IVIG.

 

I have to admit that atl that point I was really giving up hope that he would every pull out of this. As a high school sophomore who did not go to school and did not do work, his time seemed to be running out to make something of himself and I was, frankly, burned out and tired of fighting for him. My dream for him went from hoping he would find a career that he was passionate about to hoping he would someday get his GED and that he would not hurt himself. Most of my family had given up at this point and even those closest to me really started to placate me more than support me. I think my mother and my mother-in-law were the only people left really believing that a good kid was left in that sad body.

 

Fortunately, I had a chat with a friend who has a son with Chron's disease, who set me straight and gave me the motivation to get back into the ring and fight for my son. Dr. B changed his meds to bactrim and azith - and I saw a huge rage for about 3 days when he first started, so I know something was happening. The lyme doctor added in a few more supplements and also convinced him to start on a gluten free, dairy free, low sugar diet. The pediatrician (who has other kids with bartonella and PANS) wrote for him to go on home instruction from mid-october until Jan. 2. The psychologist continued with CBT and focused on coping with chronic illness.

 

He slept ALOT and had about 2 hours a day of home instruction. At first he went right back to sleep after home instruction. Gradually, he started to have more energy. By November he was asking to go back to school before winter break. He was able to go back for 3 days before Christmas. He is working hard to get caught up in his assignments.

 

Over the past week he has developed a new passion for carpentry. He planned a large wood project for his skateboard. To fund this, he sold some of his collections on ebay. He found you tube video instructions on creating the project, used the home depot website to find the materials and budget to for it, talked to the folks at home depot to purchase the materials and have them cut appropriately, and has spent the past few days in the garage drilling and screwing the wood. He has not been at all frustrated and is so proud of his work! At first I was afraid it was OCD kicking in, but he is able to leave it at night to get to bed at a decent hour because he wants to get a full night sleep before school.

 

He has not sworn at me in about 2 weeks and says "thank you" when I do something nice for him. His level of exectuive function has gone from 1 to 8 (out of 10) in two months time. He still has trouble with time management and is forgetful, but so SO much better than what he'd been dealing with before.

 

The purple stretch marks are quite a bit lighter, so I really think the bartonella has been ONE of his infections. I really think he was hit with multiple infections all at once in 2010 and I believe that started a cascade of immune issues, including his PANS exacerbation.

 

Well... if you've hung on and read this post this long, then I thank you and I hope and pray that your child is doing well or will begin to do well very soon. This forum has been my lifeline and you all are my inspiration!

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Kimballout --

 

So glad to hear from you again with good news (I've been wondering what you've been up to?! ;) )! I'm only sorry you were going through such a tough spot for the last little while.

 

Wonderful news, terrific that you've found a new, productive tributary to go down of this stream/torrent that is auto-immune dysfunction.

 

No jinxing . . . just celebrating! :D

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I am so thankful you wrote this post. DS, 13, has not been doing well since his insurance denied his last IVIg in early December. I broke down this morning after seeing the comments section of his grade card; I thought what is the point of this... We are not getting anywhere, he is mean, he is gaining weight, he has one real friend. Your post is the point of this; we must keep trying.

 

Thank you for the great news.

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So glad you kept at it until you found another piece to the puzzle! What a wonderful Mom!!

 

Don't be discouraged if treatment takes a while. Everything you address with respect to methylation, detoxing, proper diet will help. Our LLMD allows us to use herbal protocols along with abx - hit them from all directions and don't let up. We have been treating bart for 1.5 years, and have now switched to a protocol that addresses lyme/bart/protozoan infections (even though DD11 tested positive only for bart, and IND for lyme) and are finally doing really well. DD11 is happy most of the time. She interacts appropriately with her peers. Rages and frustration are disappearing at a rapid rate. It is so nice to finally see your beautiful child emerge from all the pain and mental anguish these infections cause.

 

Also good to see that you have several good doctors working for your son.

Edited by rowingmom
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I've not posted much recently because I had little good news to post. However, things seem to be turning around.

 

DS15 was heading downhill over the summer and into the Fall. Life was not good here. Rages, school refusal, fatigue, failing grades and no motivation. He had gained a ton of weight, ate nothing but junk, and spent much of his time ordering me to go out and buy more junk or raging that we only had healthy food in the house. When he wasn't doing that he was on x-box swearing and killing people. I am not joking. I need to tell you, also, that this is NOT what I have tried to raise!

 

He gets IVIG every 6-8 weeks and in October Dr. B confirmed that the "stretch" marks he was developing on his trunk were indeed bartonella. A look back at lyme testing showed the bands that are bartonella specific were the bands that were "indeterminate" in the lyme testing 2 years ago - before IVIG.

 

I have to admit that atl that point I was really giving up hope that he would every pull out of this. As a high school sophomore who did not go to school and did not do work, his time seemed to be running out to make something of himself and I was, frankly, burned out and tired of fighting for him. My dream for him went from hoping he would find a career that he was passionate about to hoping he would someday get his GED and that he would not hurt himself. Most of my family had given up at this point and even those closest to me really started to placate me more than support me. I think my mother and my mother-in-law were the only people left really believing that a good kid was left in that sad body.

 

Fortunately, I had a chat with a friend who has a son with Chron's disease, who set me straight and gave me the motivation to get back into the ring and fight for my son. Dr. B changed his meds to bactrim and azith - and I saw a huge rage for about 3 days when he first started, so I know something was happening. The lyme doctor added in a few more supplements and also convinced him to start on a gluten free, dairy free, low sugar diet. The pediatrician (who has other kids with bartonella and PANS) wrote for him to go on home instruction from mid-october until Jan. 2. The psychologist continued with CBT and focused on coping with chronic illness.

 

He slept ALOT and had about 2 hours a day of home instruction. At first he went right back to sleep after home instruction. Gradually, he started to have more energy. By November he was asking to go back to school before winter break. He was able to go back for 3 days before Christmas. He is working hard to get caught up in his assignments.

 

Over the past week he has developed a new passion for carpentry. He planned a large wood project for his skateboard. To fund this, he sold some of his collections on ebay. He found you tube video instructions on creating the project, used the home depot website to find the materials and budget to for it, talked to the folks at home depot to purchase the materials and have them cut appropriately, and has spent the past few days in the garage drilling and screwing the wood. He has not been at all frustrated and is so proud of his work! At first I was afraid it was OCD kicking in, but he is able to leave it at night to get to bed at a decent hour because he wants to get a full night sleep before school.

 

He has not sworn at me in about 2 weeks and says "thank you" when I do something nice for him. His level of exectuive function has gone from 1 to 8 (out of 10) in two months time. He still has trouble with time management and is forgetful, but so SO much better than what he'd been dealing with before.

 

The purple stretch marks are quite a bit lighter, so I really think the bartonella has been ONE of his infections. I really think he was hit with multiple infections all at once in 2010 and I believe that started a cascade of immune issues, including his PANS exacerbation.

 

Well... if you've hung on and read this post this long, then I thank you and I hope and pray that your child is doing well or will begin to do well very soon. This forum has been my lifeline and you all are my inspiration!

 

 

Just saw this post. YEAH!!! For all of you who have kids who rage (mine included), I would seriously check out bartonella and mycoP. They both cause rages.

 

Kimballot, I think it's incredible what your son did with the carpentry, and funding it, etc.

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