Topic: Worried about my young son..input needed from other lyme parents (or anyone)...
tickbattler
Unregistered
posted
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?
kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
I am so sorry you and your little one is going through this. I am exhausted for both of you!
I am really glad that you have a call with the doc tomorrow. If this was my son, I would be discussing a med change. We change meds when we stop seeing progress and it seems like that is happening here.
I am amazed your little one can go to school and do this gym class. Kids must be more resilient.
Hang in there, Mom! You are doing a great job!
Best, Karen
Posts: 1848 | From Maine | Registered: Jun 2004
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tickbattler
Unregistered
posted
Thanks for your input, Karen. It helped encourage me to suggest a possible med change.
I had the call today with DR. J. Dr. J suggested that as a first we stop the artemisinin to see if it is the cause of the angry behavior. (I am afraid it is not, but we will see.)
I did ask if perhaps we can consider a different bartonalla medication at our next appointment in a month, after we see what happens with the artemisinin. I have not heard of this causing such a reaction, but plan to post about this.
I was concerned that there might not be many good bart drugs for young children but the first one he mentioned was rifampin. From what I have read it is pretty strong but also normally pretty effective against bart, so this is encouraging.
After a week or so off the artemisinin, if the behavior is still bad, I may see if we can do a trial of rifampin even before our next appointment. I just hate to waste even two weeks on these meds if they are not working!
I find that so much of the treatment protocol depends on my hunches and observations since my kids are so young. It is very hard!
I do give motrin or tylenol for pain and it may help a tiny bit, but not much. Thankfully, today was a better day than the last two days, which were very rough.
2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
I am going through the very same thing with my 6 year old.
It seems so nauseating to give all these meds, not be sure if they're working or what's left to fight....perhaps mycoplasma or some other thing you may not have checked TBD related.
Even so, the tests suck, so much of the diagnosis seems subjective.
I think you handled the bump in the road correctly. I too would begin Rifampin before you see him after this trial removal of artemesinin.
It would yield more info at your appointment, and lets face it that's one long day all the way around.
I too, would suspect Bart.
Hang in there, and trust your intuition.
2roads
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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posted
I posted this on the other post, but here it goes again... I had to reduce the amount of artemisinin I was taking because it made me too anxious. Once I reduced the amount, my anxiety went away.
Be careful with the Rifampin and Tylenol. I believe it was in an earlier post - can cause serious problems when taken together.
Posts: 28 | From New Jersey | Registered: Oct 2008
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