Losing my son

[ibcdbwc]

Have been dealing with this in retrospect since age 5. Diagnosed by Dr. T at age 10. My son is now 12 1/2. We never identified a trigger but he had clear episodes of compulsions, OCD and anxiety about twice a year-- the worst being in the spring. Azith helped (as did motrin).. During one flare his ferritin plummeted and his TSH was 7. With synthroid those values stabilized. We had been doing very well - knew the animal-- knew what to do. We had been symptom free for 8 months.

 

Five weeks ago, my son had a hard time falling asleep. It freaked him out and he stayed up until 3-- not wanting to leave my side. Anxiety through the roof but it was not the PANDAS stare that I had been familiar with-- despite occurring a few days after a cold. He was just very concerned about upcoming tests et cetera. The episode spiraled though, and he ended up with short term Klonopin and Melatonin as Rx'd by pediatrician. This helped the sleep but made him wired and weird during the day. He missed several days of school and then lucky for us -- 2 week vacation. It was good timing. He got better after weaning from the benzo and within 2 weeks he was fine (and of course I had also started him on antibiotics this time).

 

Went back to school without issue for 10 days. Went to a very stimulating party and he had trouble sleeping again afterward. This triggered the entire scenario again. He also developed bronchitis one day following the first insomnia night. Klonopin made things worse. Rage, pupils dilated. We tried valerian and melatonin. We resorted to a tiny dose of ambien. I had thought "...if I could get get him thru the week... we'll be fine.."

 

He's not fine. Severe separation anxiety. Severe moodiness and brain fog and now wetting himself. Now it's looking like the PANS I remember. But the nights are the worst. He won't sleep but he desperately wants too. I don't know if the melatonin and valerian are making him worse? I don't what is up or down anymore. I don't know right from left. I myself haven't slept in a week.

 

I may have to take him to the hospital, because I don't know what to do. But I know they will diagnose him with something like bipolar and pump him full of drugs. I will lose my son. We have a new psychiatrist that is a PANS believer but she is out of town on vacation.

 

I have him on antibiotics and motrin. I don't know what else to do. I am so very scared.

[mama2alex]

Is he back on the Azith? If so, maybe he needs to try another antibiotic this time. Have you done testing for underlying chronic infections such as strep, mycoplasma, Lyme and viruses?

 

I'm so sorry you're going through this. Hang in there!

[ibcdbwc]

Yes back on Azith. I have always thought Azith response was primarily helpful purely for its anti-inflammatory properties. But yes perhaps I need to try a different agent. He does still have the tail end of a major cold - now a cough in his chest. Though he has a long history with strep infections, we've never been able to document high titers. And his testing for most other culprits via Dr. T have been negative. He does have the fairly common G subclass 2 immune deficiency so he has frequent infections. His nasal turbinates always seems swollen but no doctor ever seems to want to do anything other than prescribe nasal inhalers for him. We are in NC-- if anyone knows a PANS MD. As said, our new psych is a believer but doesnt know much what to do about it. And because we had been sailing - relatively - managing episodes we have not pushed any further.

 

This time just feels different though. All his other flares have been compulsion based with just right OCD, hyperactivity and anxiety. This just seems different in the way it presented and the way he is acting. He has no compulsions but does feel as if his hair is falling out and dust is stuck to his body. The separation anxiety is full tilt. The brain fog (which I have seen often before) is not lifting. The sleep issue is huge. He is coming unglued by the second.

[tpotter]

We spent years doing traditional tx (abx, IVIG, PEX), and they certainly made a huge difference, but never really gave long term relief. We are getting much more, now that we have gone "alternative", e.g. homeopathic, chiropractic, acupuncture, and ayurvedic (we're not all doing everything, for instance, my older son and DH are doing ayurvedic, while my younger son and I are doing homeopathic, plus we have been doing the other 2 off and on for several years.) Personally, I think they all help, but we chose what each would do based on personal preference. DS20 chose ayurvedic, because it cleans up the gut through diet, herbs, and spices, primarily (his gut has been a mess since the day he was born), DH does it, because I told him he had to...lol (and it is making a difference), and DS17 and I chose homeopathic, because it suited us better. We are now off abx, and most of our supplements. I see a HUGE difference when DS20 "forgets" to eat properly and take his herbs (he claims he doesn't feel the difference, but it is noticeable to everyone else around him, so he's sticking to it right now.)

 

Will it last forever? Will we be cured? I really don't know, but I do know that what we are doing now feels more like we are in control than the illness being in control.

 

My suggestion is to consider alternative treatment as a possibility (possibly in conjunction with allopathic, if you are hesitant,) and see where it takes you.

[rowingmom]

Which tests did Dr T test for? I don't think he is known as being lyme literate, I'm just wondering if he used the proper tests and whether he then read the results properly.

 

I only ask because when you mention bronchial involvement along with very low ferritin levels, babesia comes to mind.

 

http://hubpages.com/hub/Lyme-Disease-And-Babesia-Steps-To-Take-To-Help-Beat-Them

 

You should suspect Babesia if:

• You have – or strongly suspect you have – Lyme Disease.
• The onset of your Lyme symptoms was severe.
• You have low iron or ferritin levels: Babesia ‘feeds’ on iron and can deplete your store. (but low iron or ferritin by itself does NOT indicate infection – only use this as an indication if you also have a tick-borne illness).
• If you have a tick-borne illness and one of your symptoms is breathing difficulties. This is a complex symptom, because Lyme Disease itself can cause breathing difficulties, and also low iron levels from any cause can cause ‘air hunger’ – the feeling that you cannot take a deep enough breath.

 

[ibcdbwc]

Many thanks for the replies. This forum is such a valuable community! Now that he is off Valerian, Ambien and Klonopin he is somewhat more manageable during the day. The rage is gone and he is able to put on a brave face in front of others. He does still obsess over tiny hairs everywhere and dust being stuck to his skin. In addition he is generally still in over drive. He is able to sleep with Melatonin and me in the room. Though it is not without struggle. He begs to be knocked out. His pupils dilate every evening as he anticipates the dread of night. Honestly the only thing that helps him is Motrin.

 

We have switched him from Azith to Augmentin to see if that helps. We are considering a steroid burst if the rage returns or if he becomes dysfunctional again. I agree that we need to look into alternative treatments and I do think we need to search for more underlying infections as well.

 

Rowing Mom, Dr. T said "no lyme" as DS had only one band present on both IgG P41 and IgM P23 ??? I admit that I am NOT lyme literate. ???

 

I also grow increasingly concerned that his thryoid is a bigger player than I thought. He is still on synthroid and although his latest labs are WNL, I just can't help but wonder if there is more to it. Of course that thyroid issue is still my best card when talking to doctors who do not believe in the autoimmune nature of PANS.

 

Lastly, he is complaining that "screens" cause headaches and vision problems (when in the past it was hard to tear him away from a screen). And both is legs are sore all the time limiting his ability to do much of anything physical.

 

Any thoughts?

 

Thank you to everyone!

[ibcdbwc]

I should add that the pupils dilate in the evening several hours before Melatonin. And the headache and vision problem is all day.

[EAMom]

Vision problems and headaches sound like Lyme (or other tick borne infections) to me.

 

What part of NC are you in? Some counties have a lot more Lyme than others. Has any human or pet in the family ever had a known tick bite? http://www.capcvet.org/parasite-prevalence-maps/

Edited October 21, 2013 by EAMom

[tu4four]

I am so sorry that you Are going through this. We are right in the thick of it, and it is incredibly difficult. Prayers for you!

 

I wanted to mention that band 23 is thought to be lyme-specific.....so that a positive on that band wouldn't be from anything except Lyme. You might want to look into lyme if you haven't done so.

 

Good luck!

[nicklemama]

Check for Lyme, coinfections and mycoplasma. Might want to check viruses too. Don't know how long it's been since you've had a consult with Dr T, but now he does a lot more testing for a lot more things.

 

My DS also has/had very low ferritin levels. We are supplementing under a doctors supervision.

 

Try adding taurine 1000 mg with the melatonin. It works well for my DS. Low ferritin causes restless leg syndrome. My son slept terribly and was all over the bed.

[rowingmom]

I always end up saying "lyme" when I'm really talking about the whole package - coinfections too. Bartonella, babesia, ehrlichia, mycoplasma. You need to at least take a look for these. They can cause real problems, but most doctors don't think to check for them. They just assume if lyme is not positive, that coinfections will not be present. This is a false assumption.

[qannie47]

I had a horrible "rebound" reaction to melatonin. I remember it working really well for a couple of weeks, but them, "bam", I suddenly felt like my skin was crawling. The worst part is that I became wired and then I could not fall asleep at all. I quickly stopped the melatonin, (it was the only med/supplement I was on), and it took about a week to feel better. Now I use benedrill for sleep, or I might suggest advil/nighttime for sleep.....I am so sorry you are going through all of this. I hope you find some relief soon. To watch our children go through this is just so hard. Hugs to you and your child.