So lost! Now what?

[T_Anna]

Tried Benedryl last night and it helped. He only took it at 4am, but was much more relaxed.

 

Spoke to Dr.T this morning to go over latest labs. EAMom, you were on the money! He has elevated Mycoplasma and very low vitamin D (14).

 

We have dropped Doxcycline and are adding Biaxin as well as vitamin D (prescrition1 x week for 8 weeks).

 

I am also in the process of looking into Lyme and possibly the NYU neuroligist although it looks like no one has openings until July.

 

Hope this helps.

 

I decided to titer him off the Luvox and wait before trying an SSRI again,

 

Oh and I asked about pursuing PEX, but we are still waiting to see the Moleculera results.

 

T.Anna

[EAMom]

T.Anna,

 

Wow! YAY! I hope he is feeling better soon. Mycoplasma is so tricky, it'd be nice if these kids at least coughed or got a fever so we knew they had something. But no, just increased PANDAS symptoms.

[peglem]

 

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.

Oh no, my kiddo goes berserk on it, too. I think if you're a person who already has low histamine its not a good idea to take antihistamine. Ours can't take the reflux meds that are antihistamine either.

[SurfMom]

T. Anna...I PM'd you but wanted to add for the benefit of everyone that if you are not seeing positive changes, which is the case for us, you might really want to keep broadening your circle of experts....pediatric neurology, rheumatology, immunology....if you haven't done so. Sometimes it worries me that we get locked into a diagnosis and let the tail wag the dog when it could be something more.

 

We just hit the seven month mark with nary a break in DD 15's symptoms. Sigh.

 

Have a good day. If we as mothers of these kids earned a medal for all we are doing while we trudge our way through this we would look like third world dictators. This one isn't real...but you would have earned something akin to it..hopefully without the beard .