LP & Contrast MRI

[4Nikki]

Will be paying for both procedures for a little while and they yealded negative tests. Except for when DD was sick with strep throat, fever or had a bacteria infection, no tests have ever yealded any definative results.

 

We still don't have a diagnosis on what DD has that can give us some direction on treatment. No doc has been able to tell us why Ibprophen with phenylephrine HCl 30 mg keeps the rage away. Ibprophen by itself seems to help but in higher dosages 600-1000mg. Ibprophen 200 mg with phenylephrine HCI is more effective in the lower dosage. DD is going on 5 months with only a few rage episodes compared to multiple times a day without it.

 

Stuck!

[DsMom]

Interesting. We had a Dr tell us to be extra cautious, or just keep DS away from Sudafed due to pretty extreme reactions hed had to Attivan, and then to Benedryl in his 1st IVIg drip....it can cause Anxiety; CNS depression; convulsions; dizziness; excitability; fear; hallucinations; headache; insomnia etc. I know I've had enough of all that from DS without instigating more. That said, When I give it to DS I start with a Half dose, which he tolerates just fine, but I've not noticed it HELP him. Ibu has helped many, us included, so I get that one. Its really been a miracle worker for some kids, not mine, but no other anti inflammatorys seem to do what it does. I'm jealous that, you're getting such good results from low dose Ibu, I hammered my DS with tons for a very small positive. He's doing a bit better mentally, so I've paused on the IBU, but if it's working I'd stay the course! Dr.K told me once that PANDAS kids often have 'paradoxical' reactions to meds....maybe that's what your DD is having to the Phen HCI...?

 

What about the Cunningham, have you done that one yet? Perhaps that will help you pause, or go forward with a PANS treatment depending upon results? That was our fork in the road...Dr T ordered for us. Dr. L Rx'd PEX last Dec, and now we are testing for AE. Such a process of elimination, so slow, I totally feel your pain.

Good luck, and hang in there.

[4Nikki]

DD is overloaded with Anxiety and the main reason she can not attend school. We were introudced to Benedryl by an ER Doctor after we brough her in due to rage episodes which helped with DD's sleep issues and amaizingly it made her more alert the next morning. If we gave her 25mg it would help a little, if I increased it to 50mg, it did the trick for her to be able to sleep through the night but by afternoon the next day she would have trouble focusing. If she continued symptoms and had an episode, it would be more intense so we gave Benedryl only when needed. At the time, when I explained the use of Benedryl to DD's neurologist, he prescribed just the part that helped her to sleep. Much better than using Benadryl.

 

I didn't consider the possibility of the Ibprophen and phenylephrine HCI could be reacting with her other medications which is Abilify, Doxepin and Fluoxetine. I'm concerned that nothing will show up doing the Cunningham panel like her blood test that nothing shows up unless she is having full blown symptoms.

[sf_mom]

Have you tested her IgG subclasses yet? If so, was she deficient?

 

Those with low immune function have low antibody response and why they often test negative when testing for antibodies.

 

Our DD who had CAM Kinase of 158 was also serologically negative for everything. We started to test via other means for positive results. She is also treatment responsive to combination antibiotics and regresses when antibiotics are taken away.

[4Nikki]

Thank you. I will ask the doc. I dont have any understanding of IgG levels and i dont recall seeing it on the blood tests.

[LexMom]

My DS never had any abnormal tests results aside from low IGg levels. CBC, EEG, MRI, Cat scan, even strep titers. His titers weren't even high when he had strep. I always thought it was unusual. Then my daughter started getting sick and the doctor checked her for h. pylori and she was positive. Our whole family was treated and we have seen significant improvement in our DS. He had very high anxiety. I'm wondering if we were fighting the wrong infection. Anyway, my point is that I think it doesn't hurt to check for bacterial infections of the stomach. They can affect your immunity. Probably the reason I also had low IGg.