Help with Meds

[Wilma Jenks]

This is what I am giving my child. Daytime looks better but she gets very impulsive and mean with aunts/uncles at night. A bit uninhibited. What one of these things would make her be this way? Just need some advice. Thanks

 

9am Nystatin

10am 2 Charcoal

12pm Azithromycin

12:30 Lamictal

3pm Nystatin

4pm 2 Charcoal

6pm Nystatin

7pm 1 Charcoal

9pm 3mg. Melatonin

9:30pm 25mg Seroquel

[kimballot]

This is what I am giving my child. Daytime looks better but she gets very impulsive and mean with aunts/uncles at night. A bit uninhibited. What one of these things would make her be this way? Just need some advice. Thanks

 

9am Nystatin

10am 2 Charcoal

12pm Azithromycin

12:30 Lamictal

3pm Nystatin

4pm 2 Charcoal

6pm Nystatin

7pm 1 Charcoal

9pm 3mg. Melatonin

9:30pm 25mg Seroquel

 

 

One thing that strikes me is that you are not using any probiotics (such as acidophilus or bifidus). These probiotics help to repopulate the gut with good bacteria. Perhaps others can comment better on this, but my understanding is that the antibiotic removes all bacteria (good and bad), leaving plenty of room for yeast to take over and for anarobic bacteria to take over (like C-dificil, a nasty colon infection) Nystatin helps to kill the yeast, but that still leaves room on the surface for yeast or for anarobic bacteria to take over... so it is important to repopulate with good bacteria like acidophilus. It is imporatant to give acidophilus at least 2 hours away from antibiotics so the antibiotics don't kill the good bacteria. Many people give acidophilus over night to try to repopulate while the child is sleeping.

[Stephanie2]

Hi Wilma, yes I agree with kimballot. Was it suggested that you give probiotics? We were told to give www.customprobiotics.com, D-Lactate Free Formula. I give my boys 750 billion cfu's per day. It is hard to fit into the schedule b/c it has to be given away from charcoal and antibiotics. But it is so necessary. After you get on top of the gut issues, then you can drop the charcoal, making it a bit easier to schedule this stuff.

 

Also, can you give one of the nystatin doses with the azithromycin? That way you are attacking the yeast that is being created by the azith right away. Then give the charcoal about 1.5 hours later.

 

Are you waiting for some labs? Will you be getting some OAT results soon? That will help you to identify what is going on in the gut.

 

Regarding your daughter getting worse at night, maybe she is tired and crabby. I know that when my 6yo has an infection, the behaviors are worse at night. Looking at the schedule, I don't know what would make her worse at night, except that maybe the seroquel is wearing off...? Is that a psych med?

[Stephanie2]

BTW, what is the reason that you only give one charcoal at night? I always give my boys two 500mg capsules at a time and they are only 30 and 50 lbs. Maybe ask the doc about increasing this? Again, the charcoal is a temporary measure, anyway, but maybe increasing the night time dose will help.

[Wilma Jenks]

pharmacist said to give the azith. 3 hours apart from nystatin. i will try giving both together. i will also up the charcaol. thanks. her insomnia is getting worse and i am starting to wonder if its not the lamictal doing it.

[pathfinder]

1) probiotics and more probiotics. We are doing Align( probiotics) from costco and sacchaaomyces boulaadii+mos from Jarrow.

probiotics really helped with yeast bebavior (mean and arouse in a bad way at night or acting drunk)

2) I don't know but every single book I read and every single person I came to contact with is using fish oil ( omega 3) so we do fish oil as an insurance. ( if it does not help at least it does not harm)

3) Nystatin did not work for my son for some reason but Diflucan did so you may want to look for other yeast med if Nystatin did not deliver ( after certain time table) Diflucan made a huge difference in my son's yeast behavior( you may need something that will help yeast problem natural way but I will leave that with someone who is more experience in that area)

4) My son who is 17 and 170pounds is doing 1mg melatonin. we started with 3mg but we found that 1mg was enough. You may want to play with melatonin dose as more is not always better.

5) same thing with seroquel. I am not familiar with this med but again pandas kids do better in a low dose or no med( as per my own research and own experience) Drs tend to prescribe high dose of med to see the result asap but I(my son) had many many bad experience with high dose meds ( since I did not know better I did not question drs and that was a huge mistake. If one needed to use meds, one might as well use it effectively so I am not arguing about med being high dose)but pure and simple effectiveness of dosage prescribed by doctors as one size fits all.

[peglem]

Also, melatonin works with reduced light or darkness. What works best for my daughter is to give 1.5mg of melatonin and if she's not headed for sleep 1/2 hour later then I give another 1.5mg. Giving the 3mg all at once seems to slam her into grouchy tiredness before she's had a chance to ease into sleep mode. I also give her something to eat with it-she's sleepier w/ a full tummy.

Can you move the lamictal to the morning? I suspect that it is not the culprit since it is given so far away from bedtime. What's the dose on the lamictal? When my daughter 1st started lamictal, I think it caused sleep problems, but that SE went away after she was on it for a month or so.

[KaraM]

Have you considered adding ibuprofin for the brain inflammation - at least on a short term basis? Maybe try that around supper time and see if it helps with the evening.

I don't know what the Lamictal and Seroquel are - so this recommendation may not make sense if they are designed to do the same thing.

Are either of them an SSRI? Some PANDAS parents report that SSRIs make their children worse.

 

Ditto on the probiotic recommendation. At a minimum, we do Culturelle once a day and usually try to also give yogurt and Yum Yum Dophilus as well.

 

Kara

[LNN]

I am by no means experienced in this, but it seems like a lot of charcoal. Giving charcoal so frequently, so close to other meds - is it possible you are absorbing the meds before they have full effect? I'm curious why you're giving it so many times throughout the day.

 

My son's doctor prefers other detox agents (e.g. glutathione or alpha lipoic acid) but when I asked about charcoal, he said it'd be ok to use on bad days, but to only give one pill, two max, once per day and as far away from other meds as possible. Maybe others have info on this, and I could be wrong, but that's what stood out most. Just something to check on. Hate to see you canceling out the benefits of the others meds.

[JAG10]

I am by no means experienced in this, but it seems like a lot of charcoal. Giving charcoal so frequently, so close to other meds - is it possible you are absorbing the meds before they have full effect? I'm curious why you're giving it so many times throughout the day.

 

My son's doctor prefers other detox agents (e.g. glutathione or alpha lipoic acid) but when I asked about charcoal, he said it'd be ok to use on bad days, but to only give one pill, two max, once per day and as far away from other meds as possible. Maybe others have info on this, and I could be wrong, but that's what stood out most. Just something to check on. Hate to see you canceling out the benefits of the others meds.

 

 

The frequent use of charcoal jumped out at me too, but we hardly have any experience with it. Johnsmom might know.

[thereishope]

I tried to scan all responses before posting, but I may have missed something so sorry for any duplication.

 

I also give fish oil for Omega 3's. You should also give at least a multivitamin. I've found a lot of children's multi's don't have enough vitamin c or d so even more supplementation than the multi is up to you depending on how cooperative your child is with taking multiple things and what their diet is like.

[Stephanie2]

Others mentioned concern about charcoal. If used long-term these are issues, but short-term (ie during the die-off phase of yeast) it is used at high doses to get through the day! Personally, I use it 1-2 days at most, but then I am further down this path than you and you may need it more frequently for now until you get lab results and get on top of this gut stuff, which could take a few weeks or more.

[Wilma Jenks]

OK. So giving her 6 per day. For a few weeks is ok?