The Histamine Factor

[Mommy2MCL]

Hello All,

I was wondering if someone could help me understand this and offer some suggestions .

 

DD. was diagnosed PANS in Dec. 2013. She has a IgE of 600. But our only know allergy is from a mold mix on and allergy RAST test. This past spring she did flare and have an increase in tics on some of our most pollinated days. We then put her on Singulair to help with this. The docs latest suggestion is Singulair at night and benadryl. Then Zyrtec in the morning.

 

We did the Real Time Labs Mytotoxin test and it came back negative.

 

She is always itchy and recently broke out into a rash across her chest and back...

Is there something else I Should be doing or looking into?

[Missmom]

Please search this forum about the singular. Was this a pandas specialist who suggested singulair? I know it has been at least a year ago but there was a few threads on here that singulair is not a good choice for pandas kids. I believe benedril and Zyrtec are fine but I stopped giving my ds singulair after reading the threads. My son now takes vistaril nightly for allergies and anxiety. I can't remember but it was something about how the brain reacts to the singulair.

[Mommy2MCL]

Thank you, I appreciate that... I am going to research more. So far we have had only positive effects and nothing negative. And the little I looked at on the forum seems about the same...

 

IDK why this has to be so hard... I appreciate this forum so much and all the knowledge it brings.

[qannie47]

Singular made my Pandas child look autistic...

[MaryAW]

I went to the Q & A in Mass. a couple of weeks ago and asked the panel about histamines and our PANS/PANDAS children. I explained how my daughter had allergy testing prior to onset and was allergic only to dust mites. After 2 years of PANS she is now testing allergic to everything and had very bad flairs last pollen season. I asked if this was related to PANS/PANDAS. Dr. Swedo nodded her head as I asked. She explained that her immune system was in an inflammatory state because of the PANS. Her recommendation was to work at modulating the immune system. The entire panel was in agreement that immunotherapy was not the right thing. It is not that they are actually allergic, so much as their immune systems are in such a state of inflammation, that they react to the allergens. (I do not remember the exact wording, but this is the gist). They recommended antihistamines (I use Zyrtec for my DD). I have read that vitamin C is a natural antihistamine, so I have been giving that as well. Nordic Naturals Ultimate Omega Jr. is a great source of Omega 3's which is an anti-inflammatory. Also, getting your child's vitamin D level to 50 - 80 ng/ml will help. During bad flairs ibuprofen or aspirin can help too. The Neilmed nasal rinse at night was excellent too, but a bit tricky!

[mar]

Mommy2mcl

I don't know how young your child is but I went thru this to and what to let you have a heads up. My ds had no allergies then he started getting real bad at 8 with tics and everything and I was told to put him on singular and what not. I heard so many bad side affects about singular and did not go that route. He probably had pans /panda back then because I took him in for igg testing and he was reacting to everything under the sun. And had strep many of times . Told I is coming up as ashma prone. His immune system was shot basically and the gut. My boy was bad and it was scary tried Claritin but did not stop anything . Total diet helped! I do not want to sound like a commercial and say life is perfect but please don't listen to allergy meds as a cure . I remember ped and allergist saying he will be on sigulair and allergy meds all year bc of his reactions and I was not okay and really scared! We went full blown diet and salt bathes and what not and he has not taken 1 allergy med since then and has been doing well. He has been doing well and has not had strep in several years. He will be 12 next week and I will never regret not listening to doctors and and not putting him on singular and other allergy meds. I cleared up the gut and went thru many of fights and it was real hard I will not lie. I wish I could send a picture or show you how bad he was! He couldn't even go by a dog bc he reacted but now will get licked and is fine! Look into straiting the immune system and not hiding the issue. Pm me if u have questions.

Mar

[4Nikki]

She explained that her immune system was in an inflammatory state because of the PANS. Her recommendation was to work at modulating the immune system.

 

 

 

I would like to know more about this. State.

[MomWithOCDSon]

With regard to how some kids react to Singulair, etc., I'm becoming increasingly convinced that how our kids (and we) react to medications has something to do with the methylation cycle and what mutations may be involved, causing and/or enhancing "disconnects" in it.

 

I've heard Dr. Swedo make similar statements about immune dysfunction, and in our experience, it can be a chicken and egg thing; in my DS's case, he was displaying hefty seasonal allergies prior to our discovering PANDAs, and his sensitivity to those allergy triggers has diminished significantly since we've been dragged into the world of immune dysfunction! Maybe it's partially an age thing.

 

When the pollen is high, we use Zyrtec in addition to the quercitin we use pretty much year 'round. DS also has a propensity to hives, eczema and reflux when he's exposed to illness or experiencing high stress levels (ACT's, a new social situation, etc.). We've found Pepcid (an H2 receptor antagonist) to be tremendously helpful during those periods.

[mar]

I don't know it all and wish I did but the immune system to me is a huge one. That is what I focused on and tried to fix without meds but naturally . I read about and looked into methylation cycle and feel my kids fell into that but I guess I just took took the route of diet and probiotics. My ds turned 12 today and at his party I look at him as he is is interacting and want to cry bc he is not ticking and doing well!! He has had eggs and has actually been frying them up himself for past week new thing we introduced and something he hasn't had in 4 years. And in past several months can handle soy , he is not ticking nor getting congested!! At party every one is complaining of allergies and sniffing. Ds had every outdoor allergy you can name but guess what he is fine without a sniffle this is crazy and amazing!! I am crossing my fingers 100 times but what I was told 4 years ago and how he was this is not what I expected and I am not complaining. I have to mention he has not had strep in several years and I do have dd who is 9 and and as not gotten it to. She is at the age ds would get it or bring it home . But am crossing fingers and they seam to not be that susceptible anymore. I don't know if it's due to immune systems being stronger but defienetly not being as sick anymore which means no antibiotics and guts healing and being stronger.

Mar

[Califamily]

Hi Mar,

 

Can you share which things you did to improve the gut and immune function. What probiotics, etc and dosages did your child take?

 

Thanks,

 

Califamily

[EAMom]

Here's a thread on Singulair and allergies http://latitudes.org/forums/index.php?showtopic=13536

 

Also, Dr. Murphy (at one of the IOCDF conferences, either Chicago or San Diego?) advised against using Singulair in PANDAS kids as it can cause OCD (or something like that).