worried about my young son...would love input from other lyme parents (or anyone)

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tickbattler
Regular Member


Date Joined Jul 2007
Total Posts : 327
   Posted 3/9/2009 7:06 PM (GMT -7)   
Hi all,

All three of my young children are being treated for lyme/coinfections by Dr. J.

I am most worried about one of my twin boys, as it seems he is not improving with many of his symptoms. He started to show symptoms about a year ago and started treatment in June 2008. Before treatment, he had very little stamina, was becoming very emotional and would complain of migrating short muscle pains.

Soon after starting on zith and bactrim, he started getting night sweats and got a positive FISH test for babs.

about three weeks into treatment, he started getting constant headaches and visual hallucinations (colored spots). Mepron and artemisinin were added to the mix and he has been on all for drugs since the summer.

He also tested positive for bart henselae and quintana.

I am trying to figure out if he is getting better or not. His stamina has improved which I'm guessing is because we could be making progress on the babesia. His appetite is much better too. Despite a recent negative FISH test, he still has night sweats but his muscle tone has apparently improved (per Dr. J).

BUT the poor little guy has a constant bad headache and seems to be getting more and more angry. While his muscle tone and stamina are better, I feel that his behavior and mood are worse.

The slightest thing will set him off now. He has become very difficult and oppositional and a little violent towards his siblings (kicking and hitting at the slightest provocation). When he is asked to do something, he stomps his feet or kicks something and says, "I don't feel well," or "I'm angry."

He cannot concentrate very well at school during circle time but is fine when he has a project to do on his own. He is manic some days and the teachers notice that he fidgets and can't seem to help himself sometimes.

He is able to manage a 50 minute sports class at the YMCA with his brother once a week and loved it a couple of months ago. But for the past three weeks, He has had terrible tantrums when he misses a goal or a basket or something sets him off. He then starts kicking things and talking back and acting horrible. He becomes completly irrational and starts crying.

I was able to avert it today because I told him ahead of time that if he got upset, he could sit with me and watch his brother until he felt like playing again. I brought some cookies for this purpose and that was the ONLY thing that calmed him down temporarily, at least so he didn't start a screaming, crying tantrum like the last two times.

The past two days have been very rough. Both of my boys have been fighting constantly and crying and acting pretty horrible, but especially my one twin I described above. He must have told me 20 times today that he didn't feel well. I feel like crying myself during the day because I feel so bad for my little guy, as well as my other two, who also have symptoms. This is not a way for a child to go through life.

But when upsets me the most is that I have no idea if the meds are working on his brain. His headaches are worse and his behavior is worse. Today he told me that his whole body hurt too.

I wonder if perhaps the bart is coming out now because the babs is getting knocked down? But we have been treating the bart all along with the bactrim, so shouldn't that be getting better by now?!

Should I ask Dr. J to switch meds? I just don't know what to do. I have a call with him tomorrow. I would hate to switch the protocol if it is working and these symptoms are herxes, but how long do I need to wait until I see some improvement?! I know my husband has backslid when on the wrong drugs and I'm afraid this is happening with my son.

Did any of you experience this pattern of some symptoms getting better but others getting worse? If so, how long did it last?

Thanks for any input. Also would love other drug ideas that worked for your young children. Can anything else be used for bartonella?

Thanks,

tickbattler

nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 3/9/2009 8:18 PM (GMT -7)   
I am really sorry that you and your children are so sick. I don't have much to offer in the way of advice but am sending thoughts your way. When my bart flared up I also felt very irritable and when I started treatment for it, my fuse became very short.

GLbaby
Regular Member


Date Joined Aug 2006
Total Posts : 188
   Posted 3/10/2009 8:24 PM (GMT -7)   

Hey Tickbattler,

I have a friend who is going through the SAME Thing with her son.  I think you two could really...really help each other.  I am going to e-mail you.

 


GLbaby
Regular Member


Date Joined Aug 2006
Total Posts : 188
   Posted 3/10/2009 8:47 PM (GMT -7)   
I think its the full moon coming up because my twins are fighting constantly this week!! JK... But I think these symptoms will wax & wane for a while. It sounds like you son is suffering a lot....its good his mom knows whats going on. I would consider trying something new but keep treatment up. What ever treatment you do it has to be pretty long term at this point. He will get better, I saw it with my brother when he was young. I did e-mail you. Hang in there!!
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