So lost! Now what?

[T_Anna]

DS15 looked like he was turning a corner a little over a week ago. We ran blood test (strep went down, coxsackie down). We sent out a sample to Moleculera (havent heard anyhting). He was talkative, cleaner, etc.

 

This week has been terrible.

 

Insomnia - He cannot fall asleep at all (even after taking out the folinic acid).

 

Head hitting - he hits his head at night, and when he is desperate to go to sleep in the morning.

 

He can only calm down when I sit with him at night and even that doesn't seem to help the head hitting anymore.

 

His appetite is bad and I'm losing my mind!!!

 

He hasn't left the house since February 11.

 

Sorry about the vent, but I'm starting to lose faith that things will get better! I am up all hours of the night checking on him and then I need to get myself up and dressed to get others to school and myself to work.

 

T.Anna

[rowingmom]

Have you ever tested for lyme and coinfections with a LLMD? Lyme and bartonella are notorious for down-regulating the immune system and allowing other infections to proliferate. It sounds as if you have been working on strep for a while and not seeing much in the way of results.

 

When DD11 reacted so obviously to strep, and improved with strep treatment, I was sure we were dealing with PANDAS. But because we were unable to find treatment for PANDAS in Ontario we headed across the border to a LLMD. 2 years worth of bartonella treatment has improved her PANDAS to a huge extent.

[qannie47]

I am so sorry that you are going through this. I read your post and I can feel your pain. When children are in the grips of this, I think the most difficult part is not knowing if there is a light at the end of the tunnel. I know that is how I feel. I unfortunately, like the docs, have no great answers for you in respect to when it ends. However, sounds like you and yours are overdue for a goodnight's sleep. I might get some flack for this, but a pediatrician friend of mine said that every once in awhile, when it has really hit the fan, I can give my child a dose a kid's benadrill at night to help him sleep. I know this sounds like your drugging your kid, and "isn't that bad?", but as she conceded, "You must eventually sleep, if you don't get some sleep, it is only going to make the situation worse for all involved". something like that.....so when my son is just off the wall, his brother, father and I have all just had enough, I give my son Benedrill to sleep...without guilt.

[Hopeny]

Im so sorry. On the medical side if I recall correctly your sons lyme results showed positive for Lyme specific reactivity. It seems like it would be worth a shot to consult with a Lyme literate medical doctor, Dr T while I am sure is wonderful does not treat Lyme.

[mdmom]

My son is also 15 and we originally consulted with 4 PANDAS-only docs. While 2 of the docs were willing to treat strep and try steroid bursts, neither looked deeper for other infections.

 

We finally ended up at a Lyme-literate doc that clinically diagnosed my son with Babesia, Bartonella, Lyme. She also serologically found Mycoplasma (high IGG that other docs brushed off), Epstein Barr, Parvo.

 

We treated infections one-by-one for 2 years and then my son started HD-IVIG monthly this past January. My son made huge progress as we aggressively knocked down infections, addressed detoxing issues, cleaned up diet (we are gluten/dairy free), and supported his immune system with medications and supplements. It requires a lot of patience and he still has a long way to go.

 

He now tests positive for Babesia (WA-1) and I suspect as his immune system continues to regulate with IVIG, he will mount antibody responses to other infections over time.

 

My point is this: many children with PANDAS/PANS have suppressed immune systems that are often suppressed by infections (like Bartonella and Babesia, both of which mess with immune function). Just because your son doesn't test clearly positive for some infections (and most typical tests for infections through Quest or LabCorp are antibody-based tests), doesn't mean the infections aren't there.

 

I highly suggest you find an LLMD to look deeper for infections. My son was seen by Dr. T and we occasionally still consult with him; however, he is not a Lyme-literate doc. Many folks on this forum consult with a PANDAS/PANS doc + an LLMD for treatment. We just happened to find one-stop shopping in our Lyme doc.

 

Is it costly, time-consuming, sleep-depriving, stressful, scary, confusing, etc. to dig deeper and make the commitment to find and knock-down infections one-by-one? Absolutely. But the life-long gains of getting to the root of the problem are immeasurable.

 

I also remind myself and my son that he didn't get sick overnight nor will he get well overnight. He had the misfortune of being diagnosed very late at age 13 when 5 docs agreed he probably originally developed PANDAS/PANS at age 4.

 

Hang in there and keep digging. You will find answers.

[LNN]

Even tho my kids are too old to sleep with a parent, I am guilty of falling asleep next to them on anxiety-filled nights. Sleep trumps political correctness, IMO.

I think methylation issues seem to be a part of your son's struggles and MTHFR is only one piece of the picture. If you haven't done 23andme, it seems like it could be a well-spent $99 for you. And I agree with mdmom - you would probably really benefit from seeing an LLMD. I work with a great one ( who gets lyme and Pandas) in central CT. PM me if you want his name.

 

In the meantime, hang in there. We've all hit rock bottom more than once. it will get better again. But it can be a very slow process. Believe in him and believe in yourself.

[4Nikki]

T.Anna my DD15 finished her Abx seems like a few weeks ago now and her raging has persisted but at much lower rate so I feel your pain about wanting to turn the corner. During DD rages I have to keep her from banging her head, choking herself or pulling out her hair. She hates the rages and wants it out of her head. A few days ago DD started for her bed as she does when she needs to control her rage except this time she started gathering her things. bags, tablet, cords spray bottles etc. with her in her bed. She was afraid they would be taken away and kept pulling and holding everything close to her body saying "mine" including tray tables she uses. She started crying and kept pulling everything closer saying mine. She didn't rage but her crying was pretty intense. She just had this obsession about her things. That night I fell asleep at ~1am waiting for her to sleep. I woke up about 3am and she still was not asleep. Finally I gave her a benadryl at 4am, she finally slept at 5am. I was able to sleep for 30 mins. I woke up at 6am and made coffee and started reading my email. DD came down the stairs at 7am. She has not slept since but she also hasn't had any rage. I have a very big headache from lack off sleep myself. She gathered up belts and strings any kind of rope she could find and tied all of her things together. I am apprehensive about disturbing this obsession, I also dread the rage. We have been trying to get her to see the allergist for the past couple of weeks but her anxieties take hold. So I'm hoping this week we can get her at least to see Dr, B and get new lab tests.

[T_Anna]

Thanks everyone! I think I may try the Benadryl, problem is that DS is very inquisitive about what pills he's taking, so he'll say "I dont have allergies" so it might not work .

 

I posted a separate post, I would love to take him off Luvox, but need to see if I should taper or switch with Lexapro. Truth is that I'd have to switch something.

 

T.Anna

DS15

[airial95]

Have you been journaling/logging his symptoms daily? I found that this helped us a lot, especially as things were getting better and then we had a backslide, it was helpful to see how that backslide compared to previous flares. (We were even able to identify patterns associated with full on strep infection vs. exposure to strep, etc...)

 

What I found most interesting, is the longer the periods of improvement, the more devastating the backslide felt emotionally (and physically!). But when I objectively scored his symptoms, it was still a marked improvement from where we left off after the last strep infection. The better he did, the more devastating the backslides were.

 

He has been doing phenomenally since IVIG - pretty much 100%. The last week, we started to see problems start to creep back in. It was devastating, but when we looked at our daily notes, and compared them to pre-IVIG, we are still so much more better off, just a minor bump in the road maybe 1-2x per day (typically around food or getting dressed), but he's still eating regularly (even if dinner a couple of times this week was a bit hairy), taking his meds without any rituals, taking baths on his own, and even getting dressed most of the time by himself.

 

while the setbacks seem huge - the gains are still bigger. That's why the journal can really help.

[T_Anna]

Airial95, I completely agree regarding the longer things are improving the harder it is to see a slide. Just exasperated with the up and downs.

 

LLM, I'm notorious for falling asleep with each kid when I say good night and chat with them. But DS15 will only sleep on the couch and it definitely gets cramped.

 

4Nikki, I totally feel your pain!!!!!

 

Thanks everyone. It does mean a lot that so many are veterans and have survived the dark times.

 

T.Anna

[cobbiemommy]

I still fall asleep by my ds, 14, when things are not going well. I look at as a small price to pay for sleep for him and myself. I feel for you and am sending hugs your way!

[mama2alex]

I'm so sorry he's backsliding. In the last week you've mentioned treating for yeast and low vitamin D. Have you added the Diflucan and/or D in the last week - or changed anything else? If so, did the new medicine/supplement coincide with worsening symptoms? I know its hard to track all these things - especially when you're sleep deprived and stressed.

 

If it's not something along those lines, I agree with others on consulting with an LLMD. This didn't make any sense to us back at the beginning, but of all the things we've tried, treating Lyme/coinfections has made the biggest difference for our son.

[EAMom]

I agree with the others re. investigating lyme and other tick borne diseases.

 

Also, if there are sibling(s) (also adults can be carriers) if any one of them is "carrying strep" (throat culture positive, no symptoms) your PANDAS child will react...that was a problem in our household (younger dd is a strep carrer, does clear with Azith). This even happened when I myself got strep (although I wasn't asymptomatic)...PANDAS dd reacted. Once I was treated, her symptoms improved quickly.

 

Mycoplasma is another big trigger with PANDAS kids. My PANDAS dd (even while on azith) got mycoplasma last summer. Her only symptom was increased PANDAS symptoms (we figured out it was mycoplasma later on via bloodwork).

Edited May 29, 2013 by EAMom

[peglem]

Thanks everyone! I think I may try the Benadryl, problem is that DS is very inquisitive about what pills he's taking, so he'll say "I dont have allergies" so it might not work .

 

I posted a separate post, I would love to take him off Luvox, but need to see if I should taper or switch with Lexapro. Truth is that I'd have to switch something.

 

T.Anna

DS15

Benedril is dyphenhydramine and it is also sold OTC as a sleep aid. Same med, different label.

[mama2alex]

Our ds gets angry/aggressive on Benadryl. And after giving it to him ONE time 3 years ago for sleep, he has never forgotten and begged me for it a few times since. He does not remember being aggressive - thinks I'm making it up - and seems to crave or be attracted to it for some reason. I think we are the exception, but just wanted to mention it.

 

 

Thanks everyone! I think I may try the Benadryl, problem is that DS is very inquisitive about what pills he's taking, so he'll say "I dont have allergies" so it might not work .

 

I posted a separate post, I would love to take him off Luvox, but need to see if I should taper or switch with Lexapro. Truth is that I'd have to switch something.

 

T.Anna

DS15

Benedril is dyphenhydramine and it is also sold OTC as a sleep aid. Same med, different label.