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2 steps forward, 1 step back


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Many of you may have seen my vent last week about my husband's titres being high, our son being positive for Lyme and then finding mold in the A/C and getting the unit replaced, ducts sanitized and carpets ripped out to clear it.

 

Well, we did all that...and after many struggles, with the help of a $15 special cup, we even got our son to swallow his 2 abx that Dr. B put him on that are too strong for suspensions.

 

He's been humming along great - over a week taking his medicine with no rituals, routines, or struggles. And on Sunday afternoon, he pulled out his crayons, asked if he could color and didn't freak out when the paper I gave him was recyled placemats from a restaurant (our neighbor was a distributor and gives us the left overs). He then proceded to draw a picture of our family, and you could actually tell he was drawing people (up until now, eventhough he's almost 5 - all pictures have been nothing but scribbles), and then he wrote his name at the top. These are all things that we couldn't have even imagined him doing even a month ago. (He refuses to even attempt to write his name because he can't make the "B" exactly right.)

 

He started gymnastics with his sister last week (thank's NBC Olympic coverage!) and we were amazed at how focused he was and how well he listend. His teacher told us that he listened really well, and suggested we put him right into the all boys group that starts at 5 years old, even though he won't be 5 for a couple of months. It's been great.

 

I don't know if it was the new abx, dad being on abx and getting treated, or the mold removal that made a difference, but quite frankly, I didn't care.

 

Until Monday night - my hubby left on a 3 month work trip, and I was working late. He gave my father a hard time taking his augmentin, spit it out, gagged, eventually my sister got him to take it crushed up on a peanut butter sandwich. The next morning, same thing, started to see some signs of anxiety about it, but managed to get it into him with some struggle. Tuesday night - he threw it up after swallowing it the anxiety was so high. The pattern continued, until this morning - over 90 minutes of struggle, one missed school bus, a sweaty mom covered in chocolate ice cream (one of our "go to" tricks when he struggles - it failed), and still no medicine. I packed his augmentin laced peanut butter sandwich in his lunch and he eventually ate it at school - but I couldn't go through it again.

 

I called the ped, and he filled a rx for lquid suspension in a lower dose, but taking more of it. He used to love taking his "yummies" before we went to the higher dose pills - but tonight it took me over 2 hours - and a promise of 48 stars on his star chart (what he needed to get his PSP that he's been trying to earn) to get him to try it. It was classic OCD, and he even admitted HArvey was making him scared (we named his OCD "Harvey"). After he took it, he remembered he liked it, so I'm PRAYING that it goes fine tomorrow morning - but based on so far this week, I'm not holding my breath.

 

The odd thing is - in every other aspect he's improved significantly, it's just medicine refusal, and it's just the augmentin. We're on Azith, and he'll still take that every morning with no issues. So I know that this is an OCD thing. He did GREAT at gymnastics again - and while mommy cringes as she thinks of all the germs on the equipment - he really enjoys it and it's a good motivation for him so I'm all for it.

 

He's never had medicine refusal this bad before - anyone else deal with it on this scale? What have you done?

Edited by airial95
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This happens with my dd too it seems-

We put her back on 2 antibiotics for Lyme, after initial die off, leveled for awhile (still issues)

but then off the chain 2 nights ago.

 

Speaking from a Lyme perspective, Lyme and co- infections cycle in reproduction. When I see this 'off the chain' come up, without any real recent changes, presuming detox is being kept up,

I think it is Lyme cycle (roughly every 4-6 weeks)

Bartonella and Babesia cycle much more frequently.

 

Just a thought- hang in there, PV's--

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We had some refusal issues with bactrim, which dissolves very quickly and has a nasty taste. If it didn't get swallowed fast enough, out it came onto the kitchen table, a gross pile of mush and water. We'd frantically mash it into an oreo cookie hoping to get it down before the bus came up the street.

 

I agree with S&S - we see issues crop up in cycles even when nothing has changed with meds.

 

It could be some issues related to stirring things up with mold, could be herxing. Welcome to the world of "Just when I thought I had this figured out, now I need to go learn about more of this cr*p?"

 

But it's great that you've seen so many other improvements! That awakening you're seeing? Write it down! Burn it into your memory! Because it shows you what he's capable of. Some of this may very well disappear again as you go thru cycles of treatment. But you know what's possible. Lyme & co. is a long series of 2 steps forward, 1 back. Sometimes, for many weeks, it's actually 10 steps backward. It's like remodeling the house - you make a huge mess of things during the process of making lasting improvements.

 

DeeDee probably has a few good tricks for getting meds into a kid. Her DD struggled with this for a long time.

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We are experiencing the same type of thing. We started Lyme treatment a few weeks ago. After the first week, my dd started having physical symptoms like headache, joint pain, fatigue, etc. Then the next week the behavior issues started. I always know we are in trouble when she starts refusing her medications. This is a recurrent issue with her. She is 8 and takes only capsules. No liquids, no pills. Sometimes we have to put pills into an empty capsule so she can't "taste" the pill. I'm not sure I have any magical advice. We allow her to have cola when she takes her medicine, that is the only time she can have it. Also, of course, she can't play or do any other activities until her morning medicine (or afternoon) has been taken. That often causes severe meltdowns and rages, but we stay firm through it all. This is one of the hardes issues we deal with, as I am sure you do as well. At this point the only time we have problems is when she is in a flare. Unfortunately she has been in a flare for about 2 weeks now while on the lyme treatment. We are working really hard at detoxing. I think that is going to be key for us. I will be calling her LLMD today to see if there is anything else we can do to help us through this herxing.

 

In some ways, the things you are seeing are good news that you are on the right track. On the other hand, it doesn't make it any easier. Please keep us updated. Best of luck.

 

Dedee

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Thanks deedee, sounds like your approach is similar to ours. He cant do anything until he gets his meds, and he's only allowed to have pop when he takrs them too!

 

It escalated severely this morning. He took his azith with a bit of hesitation, but not much, swallowed it, but about 30 seconds later vomitted it up. I somehow still managed to get him to attempt the mew liquid augmentin after that - which after 20 min of puaging he finally did - only to promptly gag and vomit again.

 

I did manage to get motrin in hin this am - but now faced with the vomitting - I'm out of ideas! My hubby is going to try to call Dr B and I'm likely going to have my daughter in the ped for a strep test since she atarted doing some questionable things (afraid to brush her teeth the last 2 days, impulsive at school yesterday, topped by a complete seperation meltdown in car line this AM - ugh!) So I'll be asking him for suggestions too...

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