Anyone for Kisses?
Sunday, February 28, 2010
Friday, February 26, 2010
Good news on such a bad day...
Today I received an email that Maddie had been approved for a worker to come in and stay with Maddie 1 on 1 at daycare for 20 hours a week! This means that Maddie will have adequate someone to provide safety and supervision just for her for most of her day at daycare! We are so happy! I just received our 1st 2 resumes from potential Care Workers. Maddie's Medical Social worker helped us apply for this only a few weeks ago and we already got an answer! We also got a very nice email from the woman who processed it. We really are blessed to have such an unbelievable team for Maddie. She truly has a lot of people who care about her.
This could not have come at a better time. Maddie had the worst day at daycare that she had ever had. I really feel guilty because I had such a busy day at work, I didn't even call to check in on her. I usually do but her headaches have been minimal lately and she was doing well with her eyes. When I went to pick her up, her teacher at daycare was shaking her head and said Maddie had a TERRIBLE day. She had a migraine in the morning and slept for just over an hour. When she woke up she needed to be held for a long time before she could open her eyes...At lunchtime they said that her eyes were so bad that she couldn't really open them to see her food and did not finish. They put her back to sleep after she had another migraine and she slept for OVER 3 hours!!! She barely sleeps that long at night. Again needed a lot of time to open her eyes upon wakening. I wish they would have called me. I was so sad when I saw her and we couldn't leave for a while because her eyes hurt too bad to bring her out of her room (They always keep the lights off when she has her problem in her room.)
I hate this...There is NOTHING I can do and she is in so much pain...on top of this, she cannot have IB Profin until after her eye procedure in just over a week. I can only give her Tylenol which does nothing. When she has bad days I just want to scream for her. It is taking over her life and I can not stand it. She has such great days in between these attacks that I tend to forget how hard it is until it comes back.
I do think that I may have uncovered a real possibility on what she has...I don't know just yet though so I am waiting until after her eye exam. I have done a lot of research since this started...I know more than any parent should know about a million childhood diseases. This time, I am more confident than I have been about other things. I sent the pediatrician an email about my thoughts...I think he is feeling better about her getting the eye exam now than he was before. This thing is called Thygeson's Disease...It is rare but has a lot of similar symptoms Maddie has with her eyes. There is not much on the internet when searching for it and I have found a group on Facebook called Thygeson's who have their stories to read. It all sounds similar to what Maddie is going through. When I look it up on line it says that it causes minimal symptoms in some, and debilitating symptoms in others. Lasts up to 20 plus years and there is no "cure" or known cause. It can cause years of pain with some relief using steroid drops. Yes this would suck...However, the good news would be that once it is gone, it does not cause any long term effects on her eyes.
This is just 1 more thing to add to the list of possibilities but I think it sounds much more probable in my opinion. We will see. Either way I need to figure out a way to help her through these bad days. The bad one's are literally unreal. I think the daycare may call her doctor as well to get some extra advice on what to do for her. I am SO glad that this extra care person got approved to help them at daycare. It may take Maddie months to allow the new person to touch or interact with her, but eventually she will love the extra attention.
So, other than all that Maddie before today, had been having a great few days. The only issues we have been having with her is that she is CONSTANTLY sick with runny nose and cough. Because she throws up easy, whenever she has a couch, she projectile vomits...Tonight was the first no throw up night in 5 nights :)
Oh, that is right...A few nights ago she threw yet another fit and fell hitting the exact spot on the opposite side of her head and had another one of those hitting head seizures. We were so much calmer this time. She convulsed while flat on her face so she hurt her nose a little but is completely fine now (by the time I got to her she had stopped). Paige was SOOO funny...She remembered everything that happened last time and said, "Is Maddie turning green? Do I need to go to Aunt Tiffy's? Is Maddie going to the big Doctor's?" It was good to laugh a little as it does look so scary.
Paige of course is doing super as usual. Going through a real whiney phase but that is about it. We certainly can handle that :) She is also starting to fib a lot...I knew the day would come. I am taking her on a Paige only day soon so we can spend some alone time together. She loves it when we do this...even though she always asks "Where is Maddie" a bunch of times when we are out.
So next week will be a bit busy. Maddie has a pre-anesthesia physical and a team meeting at school to go over a bunch of transition stuff. I will update more soon.
This could not have come at a better time. Maddie had the worst day at daycare that she had ever had. I really feel guilty because I had such a busy day at work, I didn't even call to check in on her. I usually do but her headaches have been minimal lately and she was doing well with her eyes. When I went to pick her up, her teacher at daycare was shaking her head and said Maddie had a TERRIBLE day. She had a migraine in the morning and slept for just over an hour. When she woke up she needed to be held for a long time before she could open her eyes...At lunchtime they said that her eyes were so bad that she couldn't really open them to see her food and did not finish. They put her back to sleep after she had another migraine and she slept for OVER 3 hours!!! She barely sleeps that long at night. Again needed a lot of time to open her eyes upon wakening. I wish they would have called me. I was so sad when I saw her and we couldn't leave for a while because her eyes hurt too bad to bring her out of her room (They always keep the lights off when she has her problem in her room.)
I hate this...There is NOTHING I can do and she is in so much pain...on top of this, she cannot have IB Profin until after her eye procedure in just over a week. I can only give her Tylenol which does nothing. When she has bad days I just want to scream for her. It is taking over her life and I can not stand it. She has such great days in between these attacks that I tend to forget how hard it is until it comes back.
I do think that I may have uncovered a real possibility on what she has...I don't know just yet though so I am waiting until after her eye exam. I have done a lot of research since this started...I know more than any parent should know about a million childhood diseases. This time, I am more confident than I have been about other things. I sent the pediatrician an email about my thoughts...I think he is feeling better about her getting the eye exam now than he was before. This thing is called Thygeson's Disease...It is rare but has a lot of similar symptoms Maddie has with her eyes. There is not much on the internet when searching for it and I have found a group on Facebook called Thygeson's who have their stories to read. It all sounds similar to what Maddie is going through. When I look it up on line it says that it causes minimal symptoms in some, and debilitating symptoms in others. Lasts up to 20 plus years and there is no "cure" or known cause. It can cause years of pain with some relief using steroid drops. Yes this would suck...However, the good news would be that once it is gone, it does not cause any long term effects on her eyes.
This is just 1 more thing to add to the list of possibilities but I think it sounds much more probable in my opinion. We will see. Either way I need to figure out a way to help her through these bad days. The bad one's are literally unreal. I think the daycare may call her doctor as well to get some extra advice on what to do for her. I am SO glad that this extra care person got approved to help them at daycare. It may take Maddie months to allow the new person to touch or interact with her, but eventually she will love the extra attention.
So, other than all that Maddie before today, had been having a great few days. The only issues we have been having with her is that she is CONSTANTLY sick with runny nose and cough. Because she throws up easy, whenever she has a couch, she projectile vomits...Tonight was the first no throw up night in 5 nights :)
Oh, that is right...A few nights ago she threw yet another fit and fell hitting the exact spot on the opposite side of her head and had another one of those hitting head seizures. We were so much calmer this time. She convulsed while flat on her face so she hurt her nose a little but is completely fine now (by the time I got to her she had stopped). Paige was SOOO funny...She remembered everything that happened last time and said, "Is Maddie turning green? Do I need to go to Aunt Tiffy's? Is Maddie going to the big Doctor's?" It was good to laugh a little as it does look so scary.
Paige of course is doing super as usual. Going through a real whiney phase but that is about it. We certainly can handle that :) She is also starting to fib a lot...I knew the day would come. I am taking her on a Paige only day soon so we can spend some alone time together. She loves it when we do this...even though she always asks "Where is Maddie" a bunch of times when we are out.
So next week will be a bit busy. Maddie has a pre-anesthesia physical and a team meeting at school to go over a bunch of transition stuff. I will update more soon.
Saturday, February 20, 2010
Friday, February 19, 2010
And the Rollercoaster Continues
I am not super happy today in writing this post. We just got back from Boston today as Maddie had her apt with Dr. Sahin (The Tuberous Sclerosis neuro.) I thought this was a wrap of the great news about the genetic testing and how we wouldn't really have to worry about TSC and just move forward. Apparently not.
He said the genetic test can detect 85% of TSC cases and he wants Maddie to have MORE tests...She will need a heart test and a kidney ultrasound. I know these are not invasive tests but I just want the TESTS to be over! I thought this was a thing of the past...except waiting for the MRI at 2. Maddie IS going to have an eye exam under anesthesia on March 10 and he wants the pediatric opto to look for signs of TSC in her eyes as well.
Totally bummer news. Not what I was expecting at all. I went with my friend Stacia so Rob could stay with Paige and we tried to make it as fun as possible. This is our plan now because it really makes it easier on Paige. Maddie did great and did not freak out much at all. Boston Children's always has the best food and Maddie loves all the fun things they have there. She loves it now that she can walk around and point to all the fun pictures and fish. They really have an interesting lobby.
On top of all this Maddie just started to get pink eye! Worst timing with her eye issues already. Hopefully the antibiotics kick in soon!
So there it is...not horrible news but bummer news. It felt great for a few days to forget about the possibility of this being TSC. I am still very hopeful and optomistic that it is not. I never thought it was...but want the for sure to get this behind us. I will post some pics soon too. Below is the pic of Maddie's eye dots that we have been talking about.
He said the genetic test can detect 85% of TSC cases and he wants Maddie to have MORE tests...She will need a heart test and a kidney ultrasound. I know these are not invasive tests but I just want the TESTS to be over! I thought this was a thing of the past...except waiting for the MRI at 2. Maddie IS going to have an eye exam under anesthesia on March 10 and he wants the pediatric opto to look for signs of TSC in her eyes as well.
Totally bummer news. Not what I was expecting at all. I went with my friend Stacia so Rob could stay with Paige and we tried to make it as fun as possible. This is our plan now because it really makes it easier on Paige. Maddie did great and did not freak out much at all. Boston Children's always has the best food and Maddie loves all the fun things they have there. She loves it now that she can walk around and point to all the fun pictures and fish. They really have an interesting lobby.
On top of all this Maddie just started to get pink eye! Worst timing with her eye issues already. Hopefully the antibiotics kick in soon!
So there it is...not horrible news but bummer news. It felt great for a few days to forget about the possibility of this being TSC. I am still very hopeful and optomistic that it is not. I never thought it was...but want the for sure to get this behind us. I will post some pics soon too. Below is the pic of Maddie's eye dots that we have been talking about.
Sunday, February 14, 2010
We are back in business :)
Ok...so after over a week of hell with Madeline's headaches and bad eyes, we have been headache free for 2 days and her eyes were great today. I am not yet convinced that the meds are helping her eyes with photophobia just yet but they are possible helping with the headaches. Maddie woke up with such energy and I knew we were on a turn around. I am optimistic that the meds help keep her in a good place for a while. It is such a great feeling to look in her eyes when they are bright and full of personality.
Maddie started on Magnesium and Riboflavin (B-2). I am keeping my fingers crossed. For now the only side effect is massive water poops...and a red bum :(
We are thrilled of the great news with the TSC test results. Apparently we are 90 percent out of the woods and we will be 100 percent certain it is not TSC when Maddie turns 2 and has her last (hopefully last) MRI. I am certain she only has Cortical Dysplasia (and heterotopias) as a neurological issue....
Now for her eyes:
The patch is gone as it did nothing. The opto talked to me about having Maddie's eyes looked at under anesthesia. I wasn't too excited about the anesthesia but I have been wanting her eyes to be closely looked at since this started so I absolutely agreed. She will have this done in the beginning of next month. I truly believe they will find something in there. I just feel like there is an eye issue and because she has neurological issues, it is easy to say her behavior is neurological.
Maddie's pediatrician disagrees with me and is convinced that she has nothing in her eye. I think this may be the first time through all this that he may be wrong...But we will see...I am glad it can get done and we will know for sure. I know I see what look like little spots on her eyes and have been saying this for a while. Her ped looked at them after putting green dye in her eyes but he couldn't find anything. I am really thinking it may be deeper than the first layer but we will see.
Paige is the best big sister there is...I just need to say this because she is so amazing! With all of the focus always on worrying about Maddie, she just loves her sister so much and is such a trooper. She is always asking, "Is Maddie not feeling so well?" "Do you want me to rub your back Maddie?" She is such a wonderful little girl. I took Paige out with me the other day to go shopping and Paige asked why Maddie couldn't come with us. She just really loves her sister so much!
Her lip continues to look great. She is now enjoying me taking pictures of her so I have been able to get some of her beautiful smile. She always hated me taking her picture so I have had a hard time getting any of her smiling.
Today is Valentine's Day so we all decided to go bowling as a family. Maddie was headache free and her eyes looked great and Paige really was excited. Of course I can't bowl but it was a lot of fun having us all there together and being able to get out of the house as a family. It has really been hard to do that with Maddie's unpredictable behaviors. Paige accidentally threw the ball in the people next to us' gutter once but overall we had a great time. Daddy beat his record and bowled a 248 (not sure how that is possible other than on the Wii) and Paige beat me twice. Maddie was just happy to get out and as long as no adults talked to her she was just perfect :)
I will update more soon. We have a busy week ahead. Maddie goes back to Boston Friday, but at least this time we know we don't have to be so nervous...now that TSC is behind us that is. Well almost :)
Maddie started on Magnesium and Riboflavin (B-2). I am keeping my fingers crossed. For now the only side effect is massive water poops...and a red bum :(
We are thrilled of the great news with the TSC test results. Apparently we are 90 percent out of the woods and we will be 100 percent certain it is not TSC when Maddie turns 2 and has her last (hopefully last) MRI. I am certain she only has Cortical Dysplasia (and heterotopias) as a neurological issue....
Now for her eyes:
The patch is gone as it did nothing. The opto talked to me about having Maddie's eyes looked at under anesthesia. I wasn't too excited about the anesthesia but I have been wanting her eyes to be closely looked at since this started so I absolutely agreed. She will have this done in the beginning of next month. I truly believe they will find something in there. I just feel like there is an eye issue and because she has neurological issues, it is easy to say her behavior is neurological.
Maddie's pediatrician disagrees with me and is convinced that she has nothing in her eye. I think this may be the first time through all this that he may be wrong...But we will see...I am glad it can get done and we will know for sure. I know I see what look like little spots on her eyes and have been saying this for a while. Her ped looked at them after putting green dye in her eyes but he couldn't find anything. I am really thinking it may be deeper than the first layer but we will see.
Paige is the best big sister there is...I just need to say this because she is so amazing! With all of the focus always on worrying about Maddie, she just loves her sister so much and is such a trooper. She is always asking, "Is Maddie not feeling so well?" "Do you want me to rub your back Maddie?" She is such a wonderful little girl. I took Paige out with me the other day to go shopping and Paige asked why Maddie couldn't come with us. She just really loves her sister so much!
Her lip continues to look great. She is now enjoying me taking pictures of her so I have been able to get some of her beautiful smile. She always hated me taking her picture so I have had a hard time getting any of her smiling.
Today is Valentine's Day so we all decided to go bowling as a family. Maddie was headache free and her eyes looked great and Paige really was excited. Of course I can't bowl but it was a lot of fun having us all there together and being able to get out of the house as a family. It has really been hard to do that with Maddie's unpredictable behaviors. Paige accidentally threw the ball in the people next to us' gutter once but overall we had a great time. Daddy beat his record and bowled a 248 (not sure how that is possible other than on the Wii) and Paige beat me twice. Maddie was just happy to get out and as long as no adults talked to her she was just perfect :)
I will update more soon. We have a busy week ahead. Maddie goes back to Boston Friday, but at least this time we know we don't have to be so nervous...now that TSC is behind us that is. Well almost :)
Monday, February 8, 2010
A Day to Remember!!!!
I am so tired so this is going to be brief but I needed to get exciting news out. Today we got a call from the geneticist in Boston...She had both of our test results and Rob carries the variant on the TSC1 gene. It is NOT causing Tuberous Sclerosis!!!!!! It IS the genetic link to her having Cortical Dysplasia which we already knew she had. This is such great news! We needed it as Maddie has had a terrible week thus far with headaches and bad eyes. Her pediatrician is going to start Maddie on a bit of a cocktail...no not really, but a combo of Magnesium and something else to try and prevent these migraines. He is actually thinking that her photophobia may be caused from having a migraine problem. Migraines are common in cortical dysplasia....Maddie is just pretty young for migraines but we will see. I am glad we are trying something other than nothing.
There is a lot more going on and I will blog more about it soon...Maddie has been a nightmare with her loopiness, headaches and crying so I am pooped. I am just extremely excited about this news!!! We can move forward and put that behind us all!
There is a lot more going on and I will blog more about it soon...Maddie has been a nightmare with her loopiness, headaches and crying so I am pooped. I am just extremely excited about this news!!! We can move forward and put that behind us all!
Friday, February 5, 2010
Transition Meeting...
We had a team meeting yesterday at Maddie's Dr's office to discuss where things are at for her medically and what to do to support her transition to the Toddler room. I think it went well as we covered a lot of information in a short period of time. We talked about how well Maddie was doing in terms of her strength and beginning to problem solve.
I was relieved to discuss the nap issues in the Toddler room. This is one of the biggest concern I have with her transition. In the toddler room they only take 1 nap and it is at a specific time. Well that would never work with Maddie. She NEEDS more than 1 nap and it has to be when she starts getting loopy, not at a specific time. Either way everyone agreed she needed this and we will be able to bring a little play pen in for them to use for her when this happens.
In the next 2 weeks we should if Maddie has TS or not. I have a feeling she does not have this...but am not quite sure how I will feel if she does. I can only imagine that her case would be mild as she has yet to develop significant problems that most with TS have at her age. Her doctor reminded me that TS has a mind of it's own and can manifest at different times in different people. However, Maddie is doing so well compared to many other kid's her age who have TS, I would imagine that it would be mild for her...that is just my opinion. I am sure I will feel different if I hear that she does have TS, and probably freak out...I don't know.
I am trying really hard to not obsess about it like I used to. It is too hard on everyone and we are just going to take everything one day at a time from now on. Maddie has made huge improvements despite her medical issues. I am so proud of her for that.
Maddie has had headaches 3 days in a row :( I am home with her today and she is doing a little better. Her eyes have been bad last 3 days on and off as well. I am giving her a lot of motrin which I think helps with the headaches.
On another note I am still trying to finish painting all the kitchen cabinets to get our place ready to sell. We would like to move eventually but are really struggling on where to. We love Maddie's workers but they only work in the town we live in. I am not super thrilled with living in Milton...and not convinced I love the schools. With that said, we really need to get a bigger place for the girls to have their own rooms. Maddie waking Paige up at night really does not help Paige at school....So we will be thinking about this...even though we are a long ways away from moving at this point.
I was relieved to discuss the nap issues in the Toddler room. This is one of the biggest concern I have with her transition. In the toddler room they only take 1 nap and it is at a specific time. Well that would never work with Maddie. She NEEDS more than 1 nap and it has to be when she starts getting loopy, not at a specific time. Either way everyone agreed she needed this and we will be able to bring a little play pen in for them to use for her when this happens.
In the next 2 weeks we should if Maddie has TS or not. I have a feeling she does not have this...but am not quite sure how I will feel if she does. I can only imagine that her case would be mild as she has yet to develop significant problems that most with TS have at her age. Her doctor reminded me that TS has a mind of it's own and can manifest at different times in different people. However, Maddie is doing so well compared to many other kid's her age who have TS, I would imagine that it would be mild for her...that is just my opinion. I am sure I will feel different if I hear that she does have TS, and probably freak out...I don't know.
I am trying really hard to not obsess about it like I used to. It is too hard on everyone and we are just going to take everything one day at a time from now on. Maddie has made huge improvements despite her medical issues. I am so proud of her for that.
Maddie has had headaches 3 days in a row :( I am home with her today and she is doing a little better. Her eyes have been bad last 3 days on and off as well. I am giving her a lot of motrin which I think helps with the headaches.
On another note I am still trying to finish painting all the kitchen cabinets to get our place ready to sell. We would like to move eventually but are really struggling on where to. We love Maddie's workers but they only work in the town we live in. I am not super thrilled with living in Milton...and not convinced I love the schools. With that said, we really need to get a bigger place for the girls to have their own rooms. Maddie waking Paige up at night really does not help Paige at school....So we will be thinking about this...even though we are a long ways away from moving at this point.
Wednesday, February 3, 2010
Closure
Miss Madeline had an apt. today that I had been extremely anxious to attend...in fact I had asked her pediatrician if I could cancel it as I really did not think she needed it. He disagreed and wanted me to bring Maddie. This apt was with Dr. Bingum, who is a pediatric neurologist here in Burlington VT. There are only 2 practicing pediatric neuros in VT and they both are colleagues who work out of the same children's hospital portion at Fletcher Allen. The other neuro is Dr. K, the neuro Maddie saw in the beginning of all this who we had struggled with early on.
I was dreading this apt but also respect what her pediatrician had to say about the possibility of needing a neuro close by and to eventually not have to trek back and forth to Boston. My stomach was in knots when I was there and I don't even know what I was afraid of. I think all those unresolved emotions about our experience with Dr. K was getting the best of me. I also remember that time in our life as an extremely emotional time...we had no answers and knew something was wrong. I think that perhaps Dr. K may be a bit of a trigger in bringing back those feelings.
Anyway, the apt went SO WONDERFUL!!!! Dr. Bingum could sense my anxiety and asked just the right questions for me to be able to express what had happened with Dr. K without sounding unprofessional and nosey. He may have been manipulating me a bit to get me to talk, but it worked and he sounded extremely supportive. I finally started to breath when he said exactly what I wanted to hear..."invalidated"..."this is how your family must have felt after discussing the diagnosis with Dr. K. and I can see how that would really be disturbing to you all."
He nailed it...
After almost 6 months of pleading the neuro to take us seriously, and video taping every weird movement she made...I had known all along that something just wasn't right...and here it was clear as day on a picture of her brain...A small white circle and 2 white stripes...just in the right places to cause a whole lot of problems.
IF I could have only heard the words from her, "your Mommy instincts were right, something is wrong." We would all be in a much different place now. Instead she was clearly upset at Maddie's pediatrician for ordering the MRI when she said not to...and wanted to convince me that she was right by making it sound like this thing in her brain was like a damn splinter or something. She tried to make me feel guilty about agreeing for more testing. I knew she was wrong and could not trust her at that point. That appt. is what lead me to fear the worst...and it shouldn't have.
I do hope to someday put together a support group for parents who go through this. I have connected to so many parents who are still emailing me about issues they have with doctors for this same reason. It isn't fair for families to go through that...We have enough on our plates with dealing with the issues our children have.
OK- so I feel so good that it has all come out. I may not have told her directly, but I know the intent was for Dr. Bingum to find out for her...which is fine by me...She will know now and I hope it effects the way she works with other patients. I have the closure I needed.
As far as the appt...Maddie did pretty well...She had a bad headache this morning and her eyes are really bad today. They turned off the lights in the room and she was better.
He talked to me about how things were going and had some great incite on Maddie's situation. He actually agreed that Maddie will probably have a lot of weird neurological behaviors due to her cortical dysplasia and sensory issues and that people may suspect that she is having seizures when she isn't. He said he generally sees kids who have Cortical Dysplasia come in at the age of 4 or 5 with the seizures. He said by then we would certainly know if she was actually having seizures...It is harder to tell in babies because babies do weird things :) and Maddie does really weird things.
I asked if it was possible that she may never have seizures and he said it was possible.
I told him about the research I found on changes on the TSC1 gene being associated with a type of Cortical Dysplasia, and he actually knew about this! I was really impressed with this guy. He agreed that it is probable that Maddie ONLY has Cortical dysplasia and that may be the reason for the gene change. Oh I was psyched because this is what I was trying to convince myself after MY OWN research. Of course he understood that if Rob's test comes back negative for the same gene change that Maddie is likely to have a Mild case of TS and she would get tests on her kidney's and such if so....I am feeling in my heart that it is likely Cortical Dysplasia....I just am feeling that but we will see.
Either way, I left the appt feeling the way every parent should feel leaving a doctor's apt....Satisfied, supported, and comfortable with the information given to me.
Tomorrow is Maddie's team meeting to discuss how she is doing and her newest transition (in the next few months) to the toddler room...dun dun dunnnnnn. I think I will need more of a transition :)
I was dreading this apt but also respect what her pediatrician had to say about the possibility of needing a neuro close by and to eventually not have to trek back and forth to Boston. My stomach was in knots when I was there and I don't even know what I was afraid of. I think all those unresolved emotions about our experience with Dr. K was getting the best of me. I also remember that time in our life as an extremely emotional time...we had no answers and knew something was wrong. I think that perhaps Dr. K may be a bit of a trigger in bringing back those feelings.
Anyway, the apt went SO WONDERFUL!!!! Dr. Bingum could sense my anxiety and asked just the right questions for me to be able to express what had happened with Dr. K without sounding unprofessional and nosey. He may have been manipulating me a bit to get me to talk, but it worked and he sounded extremely supportive. I finally started to breath when he said exactly what I wanted to hear..."invalidated"..."this is how your family must have felt after discussing the diagnosis with Dr. K. and I can see how that would really be disturbing to you all."
He nailed it...
After almost 6 months of pleading the neuro to take us seriously, and video taping every weird movement she made...I had known all along that something just wasn't right...and here it was clear as day on a picture of her brain...A small white circle and 2 white stripes...just in the right places to cause a whole lot of problems.
IF I could have only heard the words from her, "your Mommy instincts were right, something is wrong." We would all be in a much different place now. Instead she was clearly upset at Maddie's pediatrician for ordering the MRI when she said not to...and wanted to convince me that she was right by making it sound like this thing in her brain was like a damn splinter or something. She tried to make me feel guilty about agreeing for more testing. I knew she was wrong and could not trust her at that point. That appt. is what lead me to fear the worst...and it shouldn't have.
I do hope to someday put together a support group for parents who go through this. I have connected to so many parents who are still emailing me about issues they have with doctors for this same reason. It isn't fair for families to go through that...We have enough on our plates with dealing with the issues our children have.
OK- so I feel so good that it has all come out. I may not have told her directly, but I know the intent was for Dr. Bingum to find out for her...which is fine by me...She will know now and I hope it effects the way she works with other patients. I have the closure I needed.
As far as the appt...Maddie did pretty well...She had a bad headache this morning and her eyes are really bad today. They turned off the lights in the room and she was better.
He talked to me about how things were going and had some great incite on Maddie's situation. He actually agreed that Maddie will probably have a lot of weird neurological behaviors due to her cortical dysplasia and sensory issues and that people may suspect that she is having seizures when she isn't. He said he generally sees kids who have Cortical Dysplasia come in at the age of 4 or 5 with the seizures. He said by then we would certainly know if she was actually having seizures...It is harder to tell in babies because babies do weird things :) and Maddie does really weird things.
I asked if it was possible that she may never have seizures and he said it was possible.
I told him about the research I found on changes on the TSC1 gene being associated with a type of Cortical Dysplasia, and he actually knew about this! I was really impressed with this guy. He agreed that it is probable that Maddie ONLY has Cortical dysplasia and that may be the reason for the gene change. Oh I was psyched because this is what I was trying to convince myself after MY OWN research. Of course he understood that if Rob's test comes back negative for the same gene change that Maddie is likely to have a Mild case of TS and she would get tests on her kidney's and such if so....I am feeling in my heart that it is likely Cortical Dysplasia....I just am feeling that but we will see.
Either way, I left the appt feeling the way every parent should feel leaving a doctor's apt....Satisfied, supported, and comfortable with the information given to me.
Tomorrow is Maddie's team meeting to discuss how she is doing and her newest transition (in the next few months) to the toddler room...dun dun dunnnnnn. I think I will need more of a transition :)
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