First Neurologist Appointment!

[Farmwife]

Little Farmgirl will be going to see a neurologist for the first time for daily headaches.
It's going on 6 months and a few medicines but still no relief.

What should I expect from the visit?
Is there anything I could do ahead of time to prepare?

Thanks:dusty:

 

[Maya142]

I'll tag my little penguin - I know her kiddo has seen a neurologist.

Good luck - I hope they can figure out how to help Grace!! Daily headaches sound miserable.

 

[my little penguin]

Bring Headache diary
Otherwise they will do a neurological exam
Then more than likely brain mri to rule out extras from biologics /onset of headaches
After that
Some neuros like to use mild versions of anti seizure meds
These can cause brain fog and trouble concentrating etc...

Others use b2/magnesium
Some use periactin/elavil

That’s about it
Easy
Elavil requires ekg

Some will order eeg
But most don’t

 

[Pilgrim]

I hope you get answers! Post them here. We never saw Neuro for H's headaches but GP gave her a prescription for amitriptyline which mostly takes care of the problem. I still really wish we knew WHY she gets them.
Hope little Farmgirl gets a quick fix.

 

[polly13]

Good luck with the appointment farmwife and hope you get a solution that works for little farm girl. Hope she is doing ok otherwise

 

[kimmidwife]

Good luck!!! Dealing with headaches here too. We have heard that Humira might cause headaches so we are wondering if my daughters might be from that.

 

[Pilgrim]

I really think H's are caused by Humira. I noticed the morning after the shot, the headache breaks through her meds a little.But I guess dropping Humira is a huge risk so that's why we added the headache med.

 

[Farmwife]

Just an update.
Grace meant with the new neurologist for her head aches.
We've tried Topamax. Didn't work.
Now on Pamalor for 2 months. No big help but keeping the big ones away.
Tried Botoxs injections. Worked but only for two weeks.
Waiting for the 3 month mark to get the injections at a higher dose.

The neurologist said lead doctor/specialist has been doing everything right and she said he's a genius according to the other docs (I knew this of course,lol).
She wants an mri and an mra to rule out vascular issues in the brain.
Venlafaxine was added for meds. In a week or so we are to drop the Pamalor.
She said some kids just can't use meds to deal with headaches. We need to work harder to find triggers.
She asked about her bowels and Grace said it hurts when she eats.
So now I need to call the GI to get a still sample done.

So, good appointment over all. We've decided to keep her on but she said her lead doc can still head her care. :thumleft:

 

[my little penguin]

Hugs farmwife
Ds has had similar experiences
If he isn’t flaring then headaches are mostly ok
The more systems flaring (domino effect )
Worse it is

 

[Maya142]

The med you are adding, Venlafaxine or Effexor, has a lot of GI side effects. So just watch out for them.

It is often used for chronic pain but our doc did not want to use it for M because of the GI side effects. There is a newer version - desvenlafaxine - which is supposed to have fewer side effects.

 

[Farmwife]

Update:

So Venlafaxine did cause gi upset and worsening of her migraines at night (go figure).
Now in 2 weeks she'll start a new med for migraines.
She dropped 5 lbs in a week and a half and is dealing with abdominal pains.

Good new is her mri and mra should no other than issues seen with chronic migraines. :dance:

 

[my little penguin]

Have you done magnesium/b2 combo ??
Seen an allergist for allergy testing ?

 

[Farmwife]

We've done the magnesium but not with the b2.
Grace had been run thru the gamut of allergy testing but it has been two years.

So......
As far as food testing my only other idea is with docs permission of course; switch her back to EO28 Splash and take food away for a set time and add the foods back.... again. See if we can find a trigger.
I hate the idea. It seems extreme but so are ALL these migraines meds.

I just wish the botox lasted longer than 2 weeks. Grrr

 

[my little penguin]

As far as food there are lists of very specific triggers so you wouldn’t have to eliminate all food ...
Your neuro should have given you a list

Given her ages she could have developed allergies recently
Most kids take time to test postive
Ds was out of the oridnary and tested positive at age 2
Allergist was shocked
My other kiddo was 9-10 after being negative earlier

The word of caution pure een could fix it
Only because you are eliminating inflammation
And not necessarily a food trigger

Food triggers for migraines are very specific
https://my.clevelandclinic.org/health/articles/9648-headaches-and-food

 

[Farmwife]

Thank mlp.
We've been given list and journals and symptom journals.
Nothing stands out yet with foods.
But I hear ya and getting allergies later. I got a dairy allergy in my 20's. Not happy about that!

 

[Maya142]

I also wanted to add that at the pain program we did, all the headache kids were put on a special headache diet - no nitrates or nitrites, no caffeine etc.

For some of them, that plus the program REALLY helped.

For the Botox, do they do that while she is awake or do they use sedation?? Because she requires sedation, that may be why they are not willing to do it more frequently.

 

[Farmwife]

No Maya, she did it without sedation.
Insurance will only cover every three months.
I've never heard of the headache diet but it makes sense.
I do know she has hotdogs and lunch meat. :yfaint:
I wonder if boost could be a culprit.:yrolleyes:
I hate this! We went thru all this 5 years ago. :ymad:Took her off all food and stuck a tube in her.
But like I said, all these meds aren't helping, except botox.

 

[my little penguin]

Definitely No hotdogs /lunch meats
Before pulling regular food
No additives
No preservatives
No histamines
No yeast extract
No msg
No caffeine

Whole Foods minimal processing
No junk

 

[Maya142]

You can get lunch meats/hot dogs without nitrates and nitrites (I buy them for my daughter) but in your kiddo's case, it might be best to stop them entirely for a while.

We get them at Whole Foods - more expensive, but M is able to tolerate them/

 

[Maya142]

Does she still have her G tube? Because if she does, you could stop Boost and use Neocate through her tube easily. EO28 or Neocate Splash (which is relatively new and what my daughter uses) could be options.

 

[Farmwife]

Yes, she stil has the tube.

I'll look thru the no food to see if there is a culprit.
But I'm also thinking her AMPS is a big factor.
Her eds is worsening (she uses a wheelchair now)... which flares her pain.........which flares her jia.....which flares her gi tract.

Grace is nothing if not an overachiever.:wink:

 

[my little penguin]

Is she in daily swimming and pt ???
A must when in a wheelchair

 

[Maya142]

Yes - we were told our girls absolutely HAD to be doing PT when using a wheelchair. No excuses. And in fact, they were supposed to be in PT 2-3x per week.

Usually when they were bad enough to need a wheelchair, independent swimming did not happen enough (more than once a week) for us, so their rheumatologist insisted on PT.

If she has EDS, it is absolutely essential for her to have strong muscles to support her joints and so PT is a must.

 

[Farmwife]

Yes
Sorry haven't updated much in the past year.
Grace goes to pt once a week. Monthly pt evaluations.
She also has a ridged pt schedule at home 4 days a week.
Her rheumatologist and pain doc oversee everything to do with Grace's care.
Grace is not wheelchair bound but has to use it when needed.
She has a strict protocol when she subluxing or dislocations happen.
A wheelchair helps her keep freedom in town or on trips.

 

[my little penguin]

Even occasional wheelchair use
Or Eds dx requires pt multiple days a week with a therapist
Not just at home exercise

 

[Maya142]

Glad there is a plan in place. Poor kiddo - I hate that she requires a wheelchair at such a young age. Is there anything else you could do to prevent dislocations? Braces for the worst joints?

 

[Farmwife]

Maya, grace had multiple custom braces but we try to limit bracing because of her jia.
Mlp, for now it works and her strength and muscle tone are continually monitor.
If she needs more she'll get it.
Thanks to you both for the info.

 

[Maya142]

When you say braces, are you talking about the stiff ones made by PT/OT/pain management or orthopedics? Because I can see those making an inflamed joint stiff and sore. M was given a gigantic knee brace that was rigid and uncomfortable when she was first diagnosed. I think she wore it once .

Our rheumatologist (actually multiple rheumatologists we have seen) do not like splints/hard braces for that reason - they can make the joints more stiff and painful.

That said, sometimes they are absolutely necessary to prevent joint deformities.

I was really talking about the soft OTC braces when a joint hurts a lot - some that we use are recommended by doctors, some we just by from Rite Aid/CVS. For example, right now when M does a lot of walking, she needs an ankle brace to support her ankle (recommended by her foot and ankle surgeon).

She also uses a wrist brace for typing since finals are coming up in college. That we just got from a pharmacy.

 

[my little penguin]

Yeah that ^^^
Ds has soft ankle /knee braces (wraps /socks /sleeves)
And hard resting hand splints to keep hands/fingers from contractures
During sleep

 

[Farmwife]

Lol, we've bought every soft brace from the pharmacy and online.
Her rheumatologist also HATES ridged braces or bracing in general for the same reasons as you said.
But EDS changes everything. :frown:
She had afo's and others I can't recall the names of right now,.
Her custom made ankle braces are awesome because the plastic bends to keep some movement but keeps the joint in.
Her ankles no longer have constant pain. :thumleft:
Still haven't found a brace to help her knees much.
She has oval8 finger splints. They're great.
She had a wrist brace as well but ace bandages still are her go to. Her PT lady showed us how to use them properly.

 

[Maya142]

We have the same - today I found 5 elbow braces, 3 ankle braces, 3 wrist braces (all right handed :ybatty and 6 (!!!) knee braces.

Honestly, we have bought a LOT of knee braces because both girls initially had bad knee involvement and were soccer players (not a good mix). They still like the knee sleeves best.

We also use Ace bandages but find the sleeves work best and stay on more easily.

You could try kinesiology tape for her knees too - her PT should be able to show you how.

The other thing M has started using for pain in her ankles (which swell daily) is Lidoderm patches. You can get them OTC now I believe, though ours are prescribed. She also uses them on her knees sometimes. Worth a try for Grace.