re: I just want to throw them all away....

I didnt read it all, how old is your daughter? have you heard of Dravet Syndrome? I only ask because I have a friend whos daughter has it

Quoting Mayhem.:" <blockquote><b>Quoting ☮ Phuket:</b>" im not crying over you... get over yourself.. ... [snip!] ... to stop worrying yourself abot a possible diagnosis and stop comparing her to "normal"kids. She's normal by her own standards."

Thanks... i hope its just her meidicne effecting her blood count like they sayd COULD be a possibility. its just all these other symptoms that throw me off..

and we are all a little nuts.. some more than others...

Quoting Patti.:" I didnt read it all, how old is your daughter? have you heard of Dravet Syndrome? I only ask because I have a friend whos daughter has it"

yes we have heard of it, and its been ruled out by genetic testing.. she is 5.

<blockquote><b>Quoting ☮ Phuket:</b>" Thanks... i hope its just her meidicne effecting her blood count like they sayd COULD be a possibility. ... [snip!] ... a possibility. its just all these other symptoms that throw me off.. and we are all a little nuts.. some more than others..."</blockquote>

I wouldn't even think about it being cancer. Put the word out of your mind. Don't even consider it an option for now, worrying wont make things any better ya know?

Quoting Mayhem.:" <blockquote><b>Quoting ☮ Phuket:</b>" Thanks... i hope its just her meidicne ... [snip!] ... cancer. Put the word out of your mind. Don't even consider it an option for now, worrying wont make things any better ya know?"

i know, all her symtoms go to that... ya know.. wouldnt you worry if your kid was full of bruises, and has bloody noses from time to time, and pale face and bags, complaingin of stomach pain and then go google it and see what it says..

then find out that her chromosome 7 gene deletion can cause lukemia too. its hard NOT to think the worse..

anyway im waiting for a call back from her nuero to see if they can test if its the medicie causing it, and then if not i will call the speicalist numebr they gave me and go from there..

Quoting ☮ Phuket:" yes we have heard of it, and its been ruled out by genetic testing.. she is 5."

Gotcha. I dont know for sure if they did genetic testing on her daughter or not. I recognized the meds your daughter is on because thats what her daughter is on. Some of them anyways.

I hope they can figure something out and find out whats wrong. Ive never seen my friends daughter have a seizure and dont know what I would do if I did. Hang in there

Neuorologist called and said she put in oderes for more blood tests to check liver function and to see if the meds are causing this.... Thank the lord, we can go in tonight or tomorrow and get the blood tests done. She said her meds might need tweakkng and that we should probably start weaning her off topamax...

Thats a releif, i hope it is the meds.

Quoting Ailey+Lennon+Renner's Mom:" im sorry sweetie ::hugs:: maybe talk to the doctor about safely weaning her off and try accupuncture ... [snip!] ... dietary change? i know that eating clean really helps. love you <3 so sorry. its not fair at all i can totally relate."

Thanks love...

  Thinking of you guys, Hannah. I hate that she has to go through this and I wish I had words of wisdom to bring some comfort.

Stay off Google. It always gives worst-case scenario and just makes your anxiety start up all the "what ifs", you know? Talk to the specialist and ask for 2nd and 3rd opinions about weaning her off.

I'm sure you've already looked into this, but do you guys have a juicer? Will she drink juice? If she will drink it, you could give her a lot of extra nutrition since she only eats certain things.

Quoting -Kaysay-:"   Thinking of you guys, Hannah. I hate that she has to go through this and I wish I had words of wisdom ... [snip!] ... Will she drink juice? If she will drink it, you could give her a lot of extra nutrition since she only eats certain things."

Thanks girl, yea she does drink juice, and i specifically buy the bolthouse juices, she will drink the green goodness and carrot juices and stuff, i am working on getting a vitamix, probably with my tax returns and i will be juicing and making our own almond milk and stuff too.

Im staying off google for a while thats for sure, I feel a bit relieive talking to her nuero about her symptoms and stuff instead of her pedi, she said its most likely whtas causing it... im starting to act like my mom thinking everything is cancer.. poor woman wont talk on a cell phone for fear of the "waves" and getting a brain tumor. lol

Quoting ☮ Phuket:" Thanks girl, yea she does drink juice, and i specifically buy the bolthouse juices, she will drink ... [snip!] ... mom thinking everything is cancer.. poor woman wont talk on a cell phone for fear of the "waves" and getting a brain tumor. lol"

Good! Bahaha, I feel you, I'm the same way dude. I'm a smurfing hypochondriac. It drives dh cray.

OP from you're post you say that she has a deletion in the 7th chromosome.
Did they say from that if it's Williams Syndrome or they aren't sure?

I can't imagine what your going through but I do hope you get some answers and treatment that work's soon.

<blockquote><b>Quoting Monkey Nuts:</b>" OP from you're post you say that she has a deletion in the 7th chromosome. Did they say from that if ... [snip!] ... they aren't sure? I can't imagine what your going through but I do hope you get some answers and treatment that work's soon."</blockquote>




Thank you. No they never said where it was if it it had a name or anything. And actually after a couple blood tests and a talk to the neuro we are weaning her off topamax because she said its the medicinces causing her rbc to be low, and once she is weaned she will do more tests. But it will take a good month and a half or so to get her off of it, ever two weeks we get rid of "pill" currently shew was at 4 of them twice a day and now she is on 3 twice a day, and in two weeks i will wean down more. So far i see no change in seizure activity. So we will see

Quoting ☮ Phuket:" <blockquote><b>Quoting Monkey Nuts:</b>" OP from you're post you say that she has a ... [snip!] ... now she is on 3 twice a day, and in two weeks i will wean down more. So far i see no change in seizure activity. So we will see"

I would only say williams syndrome because some of her features are similar to that of other children who I have it?
I really hope that's not offensive in anyway.

My cousin had a rare genetic disorder called fanconi anemia and he was sick a lot.

It's good that your going through the process of trying to wean her down off different things, and get your own answers. Lots of people just believe what doctors say is god. But your her mom and you know her and what's best for her.

<blockquote><b>Quoting Monkey Nuts:</b>" I would only say williams syndrome because some of her features are similar to that of other children ... [snip!] ... own answers. Lots of people just believe what doctors say is god. But your her mom and you know her and what's best for her."</blockquote>




Yes i have noticed her features are similar. Itw not offensive. I take what alotof doctors say with a grain of salt and try to do my own reserch. But thank you. I just want her to look pink and healthy nd i think ints all the meds in her system...