We're getting more desperate...

[_Misty_]

DD7 is in her first flare after her initial PANS episode. We're not sure what her trigger was/is. She's been on amoxicillin with great success since her first episode in June. We ramped it up this time and it hasn't helped. She's getting worse. We took away her 5-MTHF and methyl b12 thinking she was getting too much. No improvement. We saw her pediatrician today and he added Zithromax for 5 days to see if it has any effect. I am feeling very anxious and alone. My husband and I just don't understand why this is happening. She is screaming right now over obsessions about her nose. She compulsively picks it and dabs it with tissues. I don't know what to do. We are in North Alabama, so there is no one we can see within driving distance. Did I mention I'm feeling really alone?

[ThinkGutBacteria]

It's awful, I know. For a quick fix, use melatonin to quell the anxiety and help everyone sleep. It's very safe for kids, they even give it to infants and it's really hard to overdose on it. Most people who don't find it effective use too high a dose, like 3 mg. Buy the 1 mg liquid, I think Natrol is the brand we use--it's cheap and widely available. It requires 4 droppers full to reach 1 mg. BUT only give her 1 dropper full 20 minutes before bed (total dose will be 0.25 mg). We put it in chamomile tea w/honey for our DD7. She wakes up well rested and has far fewer anxiety issues in the evening. Magnesium works well too. If she doesn't eat magnesium rich foods like almonds or sunflower seeds, you can even try nightly baths with 2 cups of epsom salts/tub. A little magnesium may absorb into her skin.

 

Then buy yourself some Baby Jarro-dophilus probiotics. Give her 1/4 tsp/day. Do you have her on vitamin D?

 

Does your daughter still have her tonsils? Does she snore?

 

Hang in there. There's nothing worse than watching your child suffer. But don't give up and you'll find a plan that works eventually.

John

[_Misty_]

Thanks for your reply. We do use melatonin as needed, sometimes we use benadryl. She is allergic to all nuts, so very little dietary magnesium. She gets a daily powder magnesium, though, and has for months. She is on probiotics...not the ones you mentioned. We use vitacost kid's chewable at a double dose - it's multiple strains. She has her tonsils and only snores when very congested. she does have a cold right now, which is what has caused this current episode, I suspect. Her flare started 8 or 9 days before she had any symptoms, though. We're not doing an extra vitamin D right now.

 

She gets

multivitamin

magnesium

inositol

fish oil

amoxicillin

choline

probiotics

5-HTP

zithromax-started today

ibuprofen- during flare

 

Besides Vitamin D, am I missing anything?

[Hopeny]

First hugs to you, I know from personal experience it is so awful watching a child that young suffering and feeling so helpless. My daughter suddenly became suicidal at age 8 and there are just no words to describe how awful it was. It's hard to even think about but she prayed every night to die. But she is better and your DD will get better. Amox helped initially (DD's first Dx was Lyme, then PANDAS)and then actually started making my DD much much worse, at one point she told me she was afraid her clothes would hurt her.

 

We did 5 days of Doxy that brought her back from the brink and then combo of Augmentin/Biaxin which was INCREDIBLY effective. Your ped may be reluctant to do the combo but it worked. Even though Augmentin contains Amox, and I was sceptical/scared to try it, it really worked. Biaxin has anti imflammatory activity and it was like a miracle for us.

 

I think I would stop the multivitamin, I have had times when this made DD worse.

Do you have a PANDAS doc on board?

[Dedee]

I understand there arent any specialist near by. However, I think it may be time to consider a road trip. This may only be your second flare but most likely won't be your last. Many of us here travel to find someone who really knows how to treat this illness. It is worth the time and expense. I think your daughter may need to get a work up for infections other than strep. Perhaps she has been exposed to myco or something viral. You might consider a steriod burst after consulting with one of the specialist. I completely understand your desperation and your sense of lonliness. Check out the list of providers and make the investment. It is worth it.

 

BTW, in terms of supplements.....the latest and greatest for us has been acetyl glutathione. Has helped my daughters OCD tremendously. Normally glutathione can not be absorbed orally, but the acetyl glutatione is a new form that can be and it has been awesome for my daughter. It is rather expensive, but I was eventually able to find it for $45 for a two month supply. Best of luck.

 

Dedee

[airial95]

Sorry you're going through this - but I can relate - we've been on this path for 3 years, and my son responds very well to abx, but he keeps getting strep anyway. Even while on abx. Do you have an understanding ped? Did he run a throat culture? Sometimes my kids react to a strain of strep that is resistant to the particular abx we are using for proph. (My son has been through Azith, Cefdinir, Augmentin, Augmentin/Azith combo and Rifampin - he's currently on Cipro.)

There are TONS of ammox resistent strains of strep out there - and I'm not sure that ammox fights myco either.

 

I see you're using ibuprofen - are you dosing regularly or only as needed. Our doc has suggested regular dosing longer term - being careful not to exceed the recommended daily dosage. We usually give a dose in the AM, and leave it at that - but during flares, we often dose every 4-6 hours or so. You may want to consider that until things calm down.

 

Also - check the labels on your supplements/vitamins. Dr. M's office cautioned us specifically against supplements that have Omega 6 in them - as it can CAUSE inflammation in some folks. Many fish oils and Omega 3 supplements (which are helpful to reduce inflammation) also have Omega 6 and 9 in them as well. Just a thought.

 

Another thing we have used to help quell the OCD/rages is a sensory swing. It's sort of a lycra hammock that hangs from a single hook on the cieling. He gets in and it cocoons him in darkness and it's snug, it's also suspended from the ground so it swings/rocks gently. It makes me think of what it might have been like in the womb. We've found that this has helped settle his anxiety and even has been helpful in stopping some compulsions.

 

Are you doing any CBT or ERP? That has also helped us. Some kids aren't very responsive when in the throws of an active flare (like mine) but it has ben helpful between flares to work on coping techniques/mechanisms that we can employ when the stuff really does hit the fan again.

 

Just some thoughts and suggestions...I feel for you - it's been my life for 3 years!!!

[ThinkGutBacteria]

Sleep is the key. Deep sleep too, (not merely a measure of how long her eyes are closed) which requires clear breathing. Do whatever you can--Vicks Vapor rub on the soles of the feet, a humidifier, Benadryl, ALL of the above. (I probably wouldn't mix melatonin with an antihistamine, though.) Unfortunately sleep is not something we take seriously as a society, but it's probably a little more important to good health than eating well and exercising. It has HUGE effects on autoimmunity too. I like the glutathione idea someone raised, that'll help fix her sleep too.

 

Do you know about the work of Dr. Karen Bonuck?

 

“We found that children with sleep-disordered breathing were from 40 to 100 percent more likely to develop neurobehavioral problems by age 7, compared with children without breathing problems.”

-Dr. Bonuck

 

Source:

http://www.einstein.yu.edu/news/releases/771/kids-abnormal-breathing-during-sleep-linked-to-increased-risk-for-behavioral-difficulties/

[LNN]

You may also want to discuss tonsils/adenoids with an ENT. Some kids get deep sinus infections that aren't helped by the first tier of abx. You can ask for a cephalosporin like Ceftin, omnicef or a mycin like clindamycin to see if that might help. You can also ask for a nasal swab/culture - not pleasant but could guide you in a choice of abx.

 

My DS had been on and off abx for 8 months and then on constantly for 6 weeks and still had an infection in his adenoids or tonsils that wasn't being reached with a swab. He had a T&A and saw remarkable improvement (until he was dx'd with lyme).

 

Hang in there. I know you feel alone and that's understandable. I know it must make you very anxious to think that your child isn't getting well and that you could face years fighting this disease. But those of us who've been here a long time will tell you that each battle gets easier because you gather more tools, discover weak spots that you can shore up in their health, use CBT therapy to help fight the behaviors and thoughts, and slowly, it does get better. You find the unique keys for your child and they do get better.

[pr40]

it is hard to be calm when you child is having an exacerbation but that is one thing you can do, try not to show how distressed you are. that was quite impossible for us but I think we learned how to do it after a year or so. Second thing that you can do is try a steroid taper. They might help. Third, complete bloodwork with all immune stuff but also vitamins and minerals. Fourth, think about pets, mold, gluten, etc.

[hugs2day]

is she getting in any teeth? that is a trigger for a lot of kids when you can't quite figure out the trigger. If so, xylitol helps kill the mutans. gum, rinse and toothpaste is made with xylitol. xclear/spry is very good brand.

 

Everyone gave you good suggestions just want to say Omnicef has helped my kids when other abx stops working. Hopefully the azithro will do it for her but she will need more than 5 days so you may want to get a pandas doc on the phone soon.

 

Sleep is very important you can dose melatonin as high as 3mg but I have never gone higher than 1mg when my kids were at there worst and it sill worked.

 

 

B vitamins are activating when in pans so keep those at bay until she is better. Also Coq10 is activating so if its in your multivitamin stay away from that until she is better.

 

We supplement Taurine, vit d and vit c and magnesium when in flare. When not in flare we use all the rest etc. etc.

 

Is she constipated? Gut issues sometimes cause flares too.

 

Hang in there and try to keep her comfortable. If she is focused on her nose maybe you can get her a saline spray to help clean it out. Xclear makes a good one and it will strep in sinus cavity too..

[_Misty_]

Thanks for the suggestions. I've read them all. It's been a busy day so I can't respond in depth yet- hopefully tomorrow will be a little slower. She is slightly better today. We are anxious to see if the trend continues.

[_Misty_]

Things have finally slowed down a little. I've spent the last couple of days talking to NIH about the PANDAS study.

 

Deedee- her glutathione is normal...we checked it in October. I assume it would only help if she was low? She has been checked for myco- the doc we see for PANDAS (from the PANDAS resource network list, but not one of the top ones, he's 2.5hrs from us) interprets that she had an active infection around the time of her initial episode...her pediatrician says he wouldn't consider her labs to indicate active infection, but prescribed zith just in case (5 days only) - we also have resp stuff going on right now. She had pneumonia last January, too, which could have triggered her first episode in May. She had a severe illness in Feb of last yr that had a pos rapid strep, but the culture didn't grow. NIH says that is likely her trigger and that she prob did have strep. PANDAS doc also has checked EBV, Chlamydia, Herpes, rechecked Anti-DNASE B, Immunity stuff, MTHFR, glutathione and I think some others. The only abnormalities were mildly elevated anti-DNASE B and homozygous MTHR A1298C.

 

arial95- He did swab for strep on Monday and it was neg. he also x-rayed her sinuses and cked her urine. I don't know about the amox resistant thing - it worked magically when we started it. May be time for a change, but the NIH doc recommended that we NOT stop taking it. Sensory swing is interesting...might look into that. We do ibuprofen morning and evening. We did it 3x a day for a few days. checked her fish oil for omega 6 or 9 and it doesn't have them. We arent' doing any therapy rt now. We went several times last summer, but it didn't seem that helpful. I tried to find a therapist locally from the OC Foundation website and the only one doesn't take our insurance. We can't afford to pay out of pocket. I need to try to get her back in with the one we were going to.

 

Staying calm around her is tricky. I can usually (not always!) stay very calm. It appears very cold to others. My MIL practically has a panic attack around dd. That's not helpful, but she's our main support person. I've tried to get my husband to talk to her about not showing her anxiety. Steroid taper is an idea...I wonder is our PANDAS doc would consider it. We are frustrated with him over wanting to do the phone conference, but he is cheaper than flying to someone and he seems to be on track overall.

 

hugs2day- b vitamins are activating?? Can you point me where to read about that? She was worse today and had a methyl b12 this morning. hmmmmm. we have stopped her multivitamins the last few days.

[3boysmom]

Did you do stool testing for yeast or fungal?

[kimballot]

I don't know if she is still congested and picking at her nose, but one thing that I did not see in the suggestions was mucinex. It thins the mucus and that can really help. Don't over use or they will become dried out. Try 600mg dose and see if it helps.

 

Also, when she is wound up you can try valerian root. It does help to calm and I've not hear of any side effects with it.

 

Finally, please remember that ibuprofen is a very good anti inflammatory agent and can be very helpful when our kids flare. You don't want to use it long-term unless your child is followed closely for liver issues, but a few days of ibuprofen during a flare can be very helpful to decrease inflammation and close the blood-brain barrier (theoretically). All I know is it really helps us.

 

And... in the middle of the night when you feel all alone, know that there are lots of other PANS parents who are also awake and feeling the same way and also know that there are many PANS parents who are sleeping soundly because they have made it through the worst of it - so there is hope.

[tpotter]

One thing I found that helped during the worst time (I know it sounds weird, but would work within minutes) was 1 T of peanutbutter or a handful of peanuts. My son HATED peanuts, so I know it wasn't a placebo effect (he would fight me having to take them, and then he was calm within 2- 5 minutes!) I later found out that it was full of tryptophan, which is a precursor to seratonin. Plus, my theory is that between the tryptophan, and the fact that it is full of good fat, which is taken straight to the brain, we were getting the best of both worlds. All I know is that it stopped the rages, and helped him calm down. I started carrying peanuts around. I knew he was getting better when one day I realized I wasn't having to take peanuts with me anymore (if I ever found myself without them, and couldn't find the peanuts, I used peanut m&M's.) Obviously that won't work if your child is allergic to them.

 

I would also suggest that since you found that abx worked initially, but now having trouble again, that there is probably something else going on, too. Until you deal with all the issues, plus improve the immune system, there's going to be a lot of ups and downs. My suspicion is that she may have been exposed to something.

 

The NIMH website mentions that there may be other things causing it...not just strep. I would look for viruses, lyme, co-infections of lyme (like bartonella, babesia, Rocky Mt Spotted fever, erlichiosis, etc. Is there a possibility of mold in your house, in her school, sometime in the past or present? Do you live in an old house...could there by lead based paint? Look for environmental triggers, metabolic issues, as well as infection. But, you do have to dig. Most of us on the forum have found more than one issue, because this is an immunological disorder, so the body is susceptible to so many onslaughts.

 

I would encourage you to keep looking, because although difficult to deal with, it does get easier when you start finding answers. If you want to PM me, you can, and I can give you some other ideas, as well.

 

In the meantime, you and your daughter are in my prayers.

Edited February 9, 2013 by tpotter