We saw the LLMD last night, and based on continuing night sweats, and the resurgence of behavioral sx, we well be starting with babs treatment for our son.
On one hand, I'm optomistic about hitting yet another infection, but at the same time we are anxious about what the treatment experience will bring to us.
I'm hoping someone out there can give us the low down, so we can at least be psychologically prepared for what is about to come.
Also we have a timing issue, treatment will be starting one week before a planned trip to disney, would it be best to wait until we return, before commencing tx?
Thanks for your guidance, kp
Posted by painted turtle (Member # 7801) on :
Hi Lymemommy,
I would wait.
Because the treatment is really hard.
The most significant problem I ran into was the heart issues and increased shortness of breath.
I could not vacum half a room.
My heart felt really swollen during that treatment.
Psychologically, there is always the frustration and the confusion. Sometimes the despair. I think it might depend on what his psychological manifestations already are.
Posted by lymemommy (Member # 12495) on :
painted turtle,
Thank you for the advice.
I did a search on the medication that he is going to be taking, and saw a lot of the same, so now of course I'm nervous as all get out.
The course of his symptoms has been a funky zigzag. First the classic lyme sx, tired, headaches, legs to tired to walk, angry, knee pain, whole body hurt, down right belligerent, ect.
over time, the physical faded, then it was almost pure psych: we had bouts of ocd, hyper activity mixed in with tiredness, that proesented almost like bipolar, threatening statements (like I'm going to cut you into pieces) aggression towards his sibling.
Then a med change (taken off of zith), psych symptoms did a total flip, went to episodes of emotional fragility ie: cried easily, and a return of physical symptoms, felt like he was being stung by bees, episodes of too tired to walk, bad stomach aches, head aches.
Put back on zith, belligerance, physical aggression, and mild treatening statements are returning.
Through all of this, he has had encopresis(BM incontinence) which has responded to some degree to the zith, and night sweats almost every night since he was dx'd with lyme. Prior to Dx, he ran high fevers for 9 days (105).
I'm having a hard time imagining the behavioral stff getting much worse, unless he starts assaulting us on a daily basis.
Ugghhh. So far he is CDC positive for lyme, and subseqently diagnosed with bart and now babs.
I know that we are fortunate that he isn't as sick as many other kids get, but I guess it's kind of like being glad that your outside in a tumultuous downpouring storm, rather than out in a hurricane.
Any words of wisdom on survival, for our little one, and for us, are always welcome.
kp
Posted by painted turtle (Member # 7801) on :
kp,
That kind of zigzag sounds familiar.
The best advice I can offer is to be really observant and clear on when it may seem to be too much,
That is, when you might need to ease up on dosage if it gets too out of hand.
I remember this mostly during bicillin/flagyl when I got dangerously suicidal.
I don't remember exactly the exact emotional etc. responses with the babesia treatment,
But there was a very overwhelming amount of crying and pain.
Prior to babs treatment and during lyme treatment, there was more of the rage.
I honestly don't know how loved ones do it. Witness such drastic changes in someone you love.
I am sure it requires saintly patience and understanding.
It's the disease. Not the person. It took me a really long time to realize that much!
Who knows, the worst of it could be over for him! It's impossible to predict.
And I don't know if duration of time infected before diagnosis makes a difference in outcome or treatment prognosis.
Good luck to you.
Posted by daise (Member # 13622) on :
Hi Lymemommy,
He's very ill.
I'd be crabby, too, if the people around me pushed me into doing things I was not capable of, or which would be a trial.
And now you want to haul him off to Disneyland?
He is ill.
You put psych problems on his head? My God!
Be a mom.
Give that child a break. He needs rest. He needs understanding. Most of all he needs to have his mommy in this corner.
daise Posted by justwondering (Member # 12813) on :
I agree with Painted Turtle.
Very very tough during Babs treatment.
Major chest and heart issues. Major.
I am so sorry your son has to go undergo the treatment. As a Mom, I know how hard it would be for you and for your child.
Post about his progress, please!
Jackie
Posted by AZURE WISH (Member # 804) on :
I am so sorry your son (and your family) has to endure all this.
For me the babs herxes have been much worse than the lyme. For me i think increased shortness of breath, palpatations, high heart rate, lightheaded/dizzy (sometimes with nausea), coordination and ballance issues, weakness, tremors, headaches is all babs related. but this is mostly my guess cuz i also have lyme but to me it seems like these symptoms are more babs.
I hope you, your son, and the rest of your family have fun at disney. hopefully he is well enough to have some fun and be a kid and the whole family can be distracted from the illness.
Best wishes Posted by lymemommy (Member # 12495) on :
Thank you for your feedback everyone.
Ouch Daise!!
Please understand that my description of the course of my son's illness covers what we have been through over the past year.
I would never dream of taking my son to Disney, or anywhere else for that matter if I didn't think that he could handle it.
His symptoms, physical and emotional, have always been transitory, by that I mean they come briefly, then he's ok. (like most people, when I talk about illness, I talk about the bad stuff, and forget to mention the good parts that come in between the bad moments).
He has not had any physical symptoms in close to a month. The behavioral stuff is just starting up again, and is relatively mild at this point, the night sweats never stopped.
We thoought that things were starting to clear up, but the recent resurgence of moodiness and mild agression, coupled with the night sweats, has led his doc to believe that there is something more going on.
I have to be honest, it hurts to have someone come down on you because you ask for help, in trying to be there for your child.
I love my child very much, and would not do anything to hurt him or make this harder on him.
It has been hard enough already.
Thank you to everyone else for your words of wisdom.
kp
Posted by mtree (Member # 14305) on :
Kp....
Take that little boy to Disney!!..... I'm sure even with that trip you'll know how well he'll be able to handle the days adventure....
it might just be a good thing for the family....and for him...especialy if he is having "good" moments....
ya still need to grab on to those happy times...when you can....unfortunatly the illness will go with you....but just take it along....and make the best out of it....
maybe you could wait until you get back to treat.... ask his doctor....
mtree
ps..... I have "listened" to you talk about your son on several posts...I know your a great mom and would do only whats best for your little guy... Posted by lymemommy (Member # 12495) on :
Thank you mtree,
I needed that.
kp
Posted by painted turtle (Member # 7801) on :
Daise, maybe you are projecting? Because you feel you wouldn't be able to handle a trip to Disney, then you think kp's son can't??
Honestly, these cognitive confusions (and defensiveness and anger from all the discrimination) have been a part of the disease for me. But I don't know about Daise....
All I know is I never got the impression, kp, that you were nothing but a concerned and loving mom!!
I wish you a lovely trip with your family, to have a nice time and hopefully upon return, your son will shore all this up with the babs treatment!
Posted by groovy2 (Member # 6304) on :
Hi All
I think I would wait till after trip to start treatment --
Babs TX can be Really tuff -
Many people dont start herxing till weeks or months into treatment -
But some people herx right away -
If he can do the trip now I would go for it-
But have a plan for what to do if the trip gets to be to much for him -- Jay --
Posted by daise (Member # 13622) on :
Everyone,
Someones got to speak for the child, here.
This child is crabby. Yes, that can denote tick-borne diseases. Clearly, it can also mean the child is trying to tell mommy something: is he crabby because he's being pushed?
Sure, every kid wants to see Disney anything. But that child is ill!
quote: Painted turle said:
I wish you a lovely trip with your family, to have a nice time and hopefully upon return, your son will shore all this up with the babs treatment!
"Will shore all this up with babs treatment?" The human body doesn't work that way.
He's ill.
It sounds like he's being pushed to go to Disneyland to perform like a boy is supposed to.
And he's got a long plane trip or drive to get there and back.
Reality vs. fantasy.
Yes: A hard babesia herx very well can happen in the first week. That'll be about the time you get to Disneyland. Then will there be complaints about the crabby child?
What on Earth is wrong with waiting several months until is body and brain are much better, when he can enjoy it?
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