Frustration with psychiatrist!!! UPDATE!!

[Just keep swimming]

Hi family,

I've not been around much, but you have all been in my thoughts and prayers.

We have been dealing with an unmedicated Aly for the last week! As you know, we moved to a new county this past September. So, that means all new docs. Had to wait 3 months for an appointment with with the new psychiatrist, that appointment is this afternoon, finally!!!!!!!!!

Her psychiatrist from the other county was refilling her medications, but as of last week refused stating we are out of their county and her case was closed and just "go to the emergency room" if no one else here will refill. New psychiatrist couldn't refill as she has not seen her yet. Pediatrician is great but feels uncomfortable prescribing psychiatric medications. The main one Aly needs is Trileptal, as she is having multiple seizures daily. pediatrician said "take her to the ER". So, we took her to the ER. They gave her one dose of medication while she was there, called the new psychiatrist to get an new Rx and the new psychiatrist denied it till we see her today.

I find all of this incredibly ridiculous and dangerous for my daughter. Those of you who know of Aly's history, know that this most likely will cause enough problems for her that she will end up hospitalized.

I have kept her home from school as she is dizzy, has a headache and is having a hard time concentrating. Her seizures are I guess what you can Abscense seizures, she just looks "blank" for a little while, sometimes she does alot of lip smacking or swallowing, that is what I am seeing the most. Then she is exhausted, she has napped alot in the last few days.

Anyways, have a good thought for us about 2pm west coast time today that I don't go in there blasting the psychiatrist with both barrels!!

Shaking my head,
Vickie

 

[Dara]

I am so sorry this has happened. We are sending good thoughts for you and your family. I hope the psychiatrist goes well today and that it was just a misunderstanding or something on their part... Heres hoping they redeem themselves! Anyways, I hope that the medication and everything gets Straightened out for Aly. Let us know how it goes and our thoughts are with you.

 

[smallworld]

Oh, Vickie, I'm so sorry for you and Miss Aly. What a bureaucractic nightmare just to get Aly the medications she needs. I hope you like the new psychiatrist and she gets Aly on the right treatment ASAP. Hugs!

 

[saman]

Good gravy...you would think someone that can do something to help her WOULD. Good gravy.

I'm so sorry and here's to some good thoughts for the new psychiatrist appointment.

 

[LittleDudesMom]

Geeze Vickie, I cannot believe that noone caring for Aly would give her enough medications to make it one more week :hammer:

Fingers crossed, along with whatever else I can get crossed.

Give us an update tonight.

Sharon

 

[Just keep swimming]

UPDATE!!

What a great experience! The new psychiatrist was unaware of Aly being out of medications, said if she had been in the office she would have ok'd a few till today!

Anyways, a few new things: Aly's liver enzymes were high, I guess both the Depakoke and the Trileptal can affect that. So, she wants her to be back on all current medications for 2 weeks then do a repeat blood test. Most likely will end up with some major medication changes if it is still high.

Her Thyroid was once again too low, wants to refer her to an Endocrinologist (sp?) is what I think she said. Concerned that her Thyroxine is up to 50mg and she is still testing low.

Wants her to have an EKG, guess the Abilify can affect the heart. She has a heart murmur that she has had since birth, but she has not had it rechecked since she was an infant.

Concerned that she went into so many seizures after just 5 days of being off the Trileptal, wants a new referral to a Neurologist.

Lastly, she was very concerned that Aly's school progress has actually regressed and she is testing lower than she did in 1st grade, she is now in 5th grade. She is referring us to Regional Center services for further studies and services.

So, once I pick up the refill of Trileptal, hopefully things will quiet down a bit, till all the new appts are set up that is!!

All in all I think it was a good visit, I felt heard, Aly spoke up about how anxious she is and how much the seizures scare her.

Thanks everyone for being here, as always!!

Hugs,
Vickie

 

[klmno]

It sounds like you found a very concerned and thorough psychiatrist- Congratulations! You needed some reassurance that they weren't "leaving you and difficult child by the wayside". I hope that all the different professionals involved can find better answers for the two of you soon and you can get some peace of mind and rest. This change could turn out to be a blessing in disguise.

 

[busywend]

Vicki! She sounds so thorough! Fingers crossed new psychiatrist is yet another positive to the move you made to the country!

 

[jannie]

It sounds like a good visit...I'm glad this new psychiatrist seems knowledgable and encouraging further explanations with things. :gingerbread:

 

[Wiped Out]

I'm so glad the appointment went so well-sorry for the struggle the last few weeks. Hugs.

 

[happymomof2]

So glad the new doctor is great. Still can't believe she had to go without medications.

Hope all the testing comes out well.

 

[Sara PA]

FWIW, the lip smacking is considered a complex partial seizure. If she zones out for a few seconds, it's an absence seizure. More than 5 seconds or so, complex partial seizure.

The most common type of seizure in temporal lobe epilepsy is complex partial seizures. Children with TLE most commonly pause in whatever they're doing and do not respond if spoken to. About 40% to 80% of people with TLE also perform repetitive, automatic movements (called automatisms), such as lip smacking and rubbing the hands together.

Three-quarters of people with TLE also have simple partial seizures, in which they remain fully conscious. Some people have only simple partial seizures and never have a change in consciousness.

http://www.epilepsy.com/learn/types-epilepsy-syndromes/temporal-lobe-epilepsy

 

[LittleDudesMom]

Vickie,

Fabulous!!!! Sounds like you found a good one! Thanks for the update.

Sharon