Autism and Epilepsy

[Pbaker]

My daughter is 22 years old and has Autism and Epilepsy. She is non-verbal and can't tell me how her meds make her feel so I would like to hear from anyone else in this situation. She is on Topamax and Trileptal and now has 2 kidney stones. Her seizures come and go, she didn't have any the entire month of May but had 7 in one day a few weeks ago and ended up in the ER. Also would like to hear from anyone who had kidney stones due to Topamax and what you did? Thanks!

 

[Cint]

I've taken Topamax off and on for a over 10 years and it can/does cause kidney stones, although I haven't experienced any yet. The best thing a person can do is drink plenty of fluids to reduce the formation of stones. Tell her dr. She may need to change meds.

Kidney Stones
An explanation for the association of TOPAMAX® and kidney stones may lie in the fact that topiramate is a carbonic anhydrase inhibitor. Carbonic anhydrase inhibitors (e.g., zonisamide, acetazolamide, or dichlorphenamide) can promote stone formation by reducing urinary citrate excretion and by increasing urinary pH. The concomitant use of TOPAMAX® with any other drug producing metabolic acidosis, or potentially in patients on a ketogenic diet, may create a physiological environment that increases the risk of kidney stone formation, and should therefore be avoided.

 

[kirsten]

Hi, P. I don't have info for you about kidney stones but I wanted to give you a suggestion. Given that your daughter can't communicate with you, please do ask your doctors for a U&E/electrolyte level every four or six months, and watch whether she starts drinking a lot more fluids. Topomax can cause syndrome of inappropriate anti-diuretic hormone, which can really make you feel horrible. If she starts drinking a massive amount of fluids, get a sodium level, and prevent her from going overboard with the drinking as much as you can.

 

[valeriedl]

I really don't know anything about Autism but how do you communicate with her in general? Can she write words or draw pictures? Can you ask her to point to a part of her body and tell you if it hurts, doesn't feel good or right? I wish I could be more help to you on this.

I've always drank a lot. My nuero said that one of the meds I'm on can make you thirsty but I don't remember which one. One of the meds I take is Topamax so I don't know if that's the one or not. He said it was ok but stay away from caffeine and sugary beverages. I drink mostly water and things like Crystal Light. He said that carbonated beverages are ok but don't drink a lot of them.

I've never had kidney stones. My mom did have them a good while back, she doesn't have epilepsy, her dr told her to drink a lot because it made it easier to pass them.

 

[MAB]

My daughter is 22 years old and has Autism and Epilepsy. She is non-verbal and can't tell me how her meds make her feel so I would like to hear from anyone else in this situation. She is on Topamax and Trileptal and now has 2 kidney stones. Her seizures come and go, she didn't have any the entire month of May but had 7 in one day a few weeks ago and ended up in the ER. Also would like to hear from anyone who had kidney stones due to Topamax and what you did? Thanks!

Is your daughter able to read and communicate with an I-Pad to tell you how she feels?

 

[masterjen]

Is your daughter able to read and communicate with an I-Pad to tell you how she feels?

Many speech-language pathologists will help a non-verbal child or adult learn to communicate with a communication board (electronic, on a computer, or even an actual board) as well, if an iPad isn't an option. The board can be simple or complex, depending on the person, and different boards can be developed for different situations. The nonverbal individual can be taught which pictures represent, for example: pain, thirst, hunger, bathroom, etc. Many nonverbal people can be taught sign language as well.

 

[MAB]

Many speech-language pathologists will help a non-verbal child or adult learn to communicate with a communication board (electronic, on a computer, or even an actual board) as well, if an iPad isn't an option. The board can be simple or complex, depending on the person, and different boards can be developed for different situations. The nonverbal individual can be taught which pictures represent, for example: pain, thirst, hunger, bathroom, etc. Many nonverbal people can be taught sign language as well.

My 4 year old grandson is non-verbal. I am not familiar with all the things you mentioned but we found out that even though he can't talk he has taught himself to read. He just got a mini I-Pad and an app and is learning to use it.

 

[Pbaker]

Kirsten, thanks for your information! My daughter drinks A LOT!! I have always worried about her drinking so much but no one has ever said anything. They just say to make sure she drinks plenty which has not been an issue. I will mention this to her doctor. Thank you so much!!!

 

[Pbaker]

Thanks everyone, appreciate your replies My daughter does use a few pictures to communicate but that is it (PECS system). She does not point either. We had years of Speech Tx and did some sign but her cognitive level is that of a 2-3 year old in most things. She has an ipad and a large touch screen desktop but we have not been able to teach her to use them to communicate Makes it very difficult as you can imagine. Again, thanks for your great suggestions!

 

[MAB]

Kirsten, thanks for your information! My daughter drinks A LOT!! I have always worried about her drinking so much but no one has ever said anything. They just say to make sure she drinks plenty which has not been an issue. I will mention this to her doctor. Thank you so much!!!

There is also an illness named diabetes insipidus which causes a person to consume large amounts of water. There are days I will drink between 2-3 gallons of liquid. When my sodium level gets too low I am miserable.

 

[vixen]

double dose~

look up hoovfour her&son has the same situation