Update on Jessie

[susiestar]

Finally got a call from the neuro. His nurse wanted to know what was going on, is going to fax a note to school, talk to the doctor and call us back with what the doctor wants us to do.

We have an appointment with the pediatrician in an hour. I will problem cancel it because the pediatrician just keeps saying "do whatever the neuro suggests" and that makes me want to SCREAM.

Anyway, her face is less swollen today, and we are going to try to do whatever the neuro wants us to do. I REALLY don't want to do the ER - based on past trips ALL they will do is give her benadryl. And it doesn't help.

If it helped I would gladly pay the copay of $100 for a shot of benadryl, but it doesn't.

Anyway, thanks for all the good wishes and thoughts.

Susie

 

[Star*]

Susi -

Do you think an ice pack would help her head? When I get migraines I pack my head in ice and OMG it helps the most.

It makes me sleepy too. Seems like the swelling in my head dissipates.

 

[lovemysons]

Thinking of you and your Jess, Sus. Sorry your baby girl has been in so much pain, hoping it gets better soon.

Hugs and love,
Tammy

 

[1 Day At a Time]

Susie,

Sending gentle hugs to you both. I hope you can get some relief.


Valerie

 

[TerryJ2]

So sorry about the pain, and the pediatrician deferring so much to the neuro.

How did it go?

 

[susiestar]

Please pardon me while I SCREAM!! AAAAAAAHHHHHHH!

OK. After taking 5 hourse, and telling us to cancel the appointment iwth the local pediatrician, the neuro wants us to take Jess to the local pediatrician tomorrow so that he can somehow work with the pediatrician to help this.

Yesterday she was throwing up to much to leave the house (any movement made her vomit), so we changed the appointment to today. Today the neuro's office told us to cancel with the pediatrician so that the neuro could figure something out. NOW the neuro wants us to see the pediatrician?

WTH?????????

I am very frustrated. Have tried cold. Hot. All of the medications she is allowed. Nothing helps very much or for very long. She is crying in her sleep - not loud, just quiet crying. I have been rubbing her head when she can tolerate that.

Why can't they just recommend something to try at this point?

Jess wants to go back to homeschooling, or go to homebound school. She has missed so much, and every time she gets caught up she gets a migraine or gets a virus. It is frustrating, to say the least. I was really hoping school would work out. Next year there is a FREE online school, offered by the state. This year I would have to find an online program for most classes. Just really not ready to teach 8th grade to her.

Sigh.

Thanks for letting me vent.

Susie

 

[mrscatinthehat]

Poor Jess, Poor you. Sending gentle hugs.

beth

 

[Wiped Out]

Aww, poor Jess. I'm so sorry she is in all of this pain. Hugs to you both. I hope something helps soon.

 

[everywoman]

Okay, I'm going to throw this out there and hope I don't offend you. I know that Jess has had a rough go of things lately. First, being hit by a car. Second, being fell on in the store. But, could a lot of this have to do with belated PTSD from Wiz. I know she had such a horrible time when he was home, and now he is doing much better, and you are glad to see him doing better, so I'm sure you're expressing that, and he is contacting and interacting more with the family, and maybe, just maybe, on top of everything else she is anxious that if she goes to school, she'll come home and he'll be there permanently again. I know when pcdaughter was much younger, and her anxiety was at its worse, she developed numerous real illnesses one after another. Looking back, I wonder if it was her body's reaction to the stress caused by difficult child.

 

[amazeofgrace]

oh my this poor kid has not had a break lately has she?

Prayers for healing and hugs!

 

[susiestar]

Thanks for all the good thoughts.

EW - I think it very well may be the PTSD from Wiz, or from the accident. Either one causing real illnesses is a strong possibility in MY mind. She had an appointment with a therapist we know and trust yesterday, but was vomiting again so we have had to reschedule it. I DO plan to ask the docs about her anxiety. Thank you for suggesting it - and NO offense taken.

Susie

 

[Hound dog]

Susie I'm also beginning to worry this may be a PSTD anxiety thing. Just the getting hit by the car would be enough, add on her other stressers and things.......and yeah, not a huge stretch. Or could be making what would normally be much milder symptoms much worse. (I'm tired don't know if I worded that right)

Right at the time I got hit by the truck I had alot going on. We bought our first house. Travis was having issues and got his polycythemia diagnosis, and we discovered the stroke....Nichole was on her downhill plunge.... And my body seemed to take all that and ran with it.

For about the first year I was just one big reaction waiting to happen. And believe me, it didn't take much. By the 2nd year just leaving the house became a feat unto itself. Riding in a car had become a nitemare, both for me and anyone else in the car. By the time I forced myself to the psychiatrist I was literally a basket case. Even had to include in the appointment to be patient with me, I might cancel a few times before I actually made it. And it's a good thing my first psychiatrist was a excellent one, cuz I'd not been able to force myself for a 2nd opinion. My body was doing it's own thing and there wasn't anything I could do about it. I hope to God I never feel that out of control again. It was nitemarish. And thankfully medications and good therapy retraining my brain worked or I'd probably be in a padded room right now.

But my body had had all it could take and it wasn't going to take anymore.

That facial swelling has me a bit concerned though. Has anyone offered an opinion on why her face is swollen?

Saying prayers and sending hugs. I hope you're able to sort out what is what soon. Poor kid. She's been thru enough.

 

[susiestar]

Saw the pediatrician. Got sample of Maxalt, and scrip for same. She discussed amitryptiline for prevention, but wanted to speak with the pediatrician neuro before doing anything on that level. She did say that Jess is fine taking phenergan just before the maxalt, and if it doesn't work to try her hydrocodone again (from the car accident).

She is a stymied as we are as to what is safe for Jessie to take as a preventative, given the seizures. I think the amitryp would be fine if the neuro OK's it. It would help with the anxiety and the sleep issues (Jess has NEVER been a good sleeper, actually none of my kids are).

Hugs to all of you. Thanks.

 

[Star*]

The medicine I took for migraine prevention WAS an anti-seizure medicine - Topomax.

Can't they give her that? I took somewhere between 2000 - 2500 mg to not have the migraines and it helped so much. I even lost a little weight!

 

[susiestar]

Jessie really doesn't do well on topomax. It doesn't help her seizures and it upsets her stomach in a HUGE way. It was a real mess when she took it.

She is on an anti-seizure and until this last year it was controlling her migraines. She has to start any medication at a very LOW dose and can only tolerate VERY small increases about once a month, so it took us a YEAR to get her seizures controlled and since she just grew, and is in the process of increasing the keppra again, well, we don't want to switch anti-seizure medications if we don't have to.

The Lyrica that I take is also an anti-seizure, though I take it to control my migraines and to help with the nerve pain from the fibro. Anti-seizure medications are being used for a lot of things.

Amitryptyline (or Elavil) is often used to help control migraines. It is also helpful with anxiety and other symptoms of PTSD, so we think it is a pretty good choice in this case. Both docs and I think that elavil is a safe choice that will not increase her seizures and may help target any/all causes of the migraines. One thing we looked at is medications that helped me. Jess is NOT me, but if your mom or dad or sibling had a positive reaction to a medication, odds are increased that you will have a good reaction. Same for bad reactions.

I will hate the week on the steroid dose pack, but the rationale seems logical (though I HATE HATE HATE the verbal "slap on the wrist" the neuro gave for me "letting the headache go on for so long" when I TRIED to get his office to help, TRIED to get the Urgent Care AND the pediatrician office to help and was told, Oh, it will go away by ALL of them!) . I DID send an email to the doctor with a record of the times I called and what I was told by each doctor, and asked what I was supposed to do different next time so that I "would not be letting it go on too long" . I think his front office will get a verbal spanking because THEY told me not to "bother" the doctor with a child's migraine unless it didn't respond to treatment for several days - which is the OPPOSITE of what he wants! And even the office mgr has an RN, so she should KNOW better!

Done ranting.

Thanks for the suggestions, I really do appreciate them!

Susie

 

[Josie]

My daughter's migraines were controlled by Elavil for at least a year. We tried stopping it for a while to try an SSRI to work on her Obsessive Compulsive Disorder (OCD) and we haven't been able to get her headaches under control since then. We are still trying to increase the dose to see if it will help.

I hope it helps your daughter.