She got a 102 on her math test!

[browneyesmom]

I never did share just how low her grades dropped in math class while my daughter was sick these last several weeks (she would have been horrified if I had at the time), but the same child who earned an A+ first quarter, was bringing home tests in the 60's, 40's and yes, even 20's during all this struggle. She told me the test questions were just easy this time... division instead of multiplication. I quizzed her on some multiplication though and she snapped them off, just like that with absolutely no hesitation whatsoever. Subtraction seemed a little tougher, but that's ok, I reassured her. Again, she told me that I just asked her simple multiplication facts... no, I know better. She would not have been able to do those 3 weeks ago. No way.

 

I shared the good news with her dad as I was on the way to drop her off there for a Valentine's date with him. His response was that she had some struggles, but "we worked on it and now she is doing better". No. She never struggled like this before. Never. Interesting that she improved when she took the antibiotic.

 

I think I am going to have to add to my research to obtain her math grades for 1st & 2nd quarters to show him what I am talking about here and compare it with the timeline in question.

 

I now know there is usually a huge decrease in math skills with PANDAS kids when they have an episode, but at the time, I did not know what was happening to her and so worried as she had never struggled like this in school before and my heart just broke for her as I searched my mind for answers.

 

She completed the antibiotic this morning. I wish I could say that everything else is back to normal too, but it is not and I know it may take quite a while for the rest to resolve for her... through a gradual improvement. She did not have her usual "I knew I could do it" attitude about the test... I could tell that she is still convinced that she is not so bright and we are going to need to work on her self-esteem to help her resolve that successfully. I hope this is the beginning of things improving for her, but from what I have learned, I will not be shocked if she has another dip as most kids need low-dose antibiotics long-term as well as other treatments. Those are more complex, so our pediatrician will have to discuss with the research docs first. I am waiting to hear back from him about that as I am anxious to keep her moving in a positive direction and get her fully recovered.

 

My huge worry with all this is that one never knows in brain cases just how much will be recovered and how much might be lost. It's a wait and see situation and there is much for which we still have to wait and see and that is not easy and I realize I may have a battle on my hands for treatment with her dad as he is not as convinced as I am that this is PANDAS, so I am continuing to work on that aspect as well. This is one of the most challenging, stressful and painful things I've ever experienced.

 

But, I wanted to share the good news that she really IS still in there somewhere!!!!!

[browneyesmom]

Sooo... can others who have been through this tell me... is this one of the first signs that things are improving? I know we still have a long way to go and I still believe she needs more treatment, but I am just wondering. It certainly is a positive sign.

 

 

I never did share just how low her grades dropped in math class while my daughter was sick these last several weeks (she would have been horrified if I had at the time), but the same child who earned an A+ first quarter, was bringing home tests in the 60's, 40's and yes, even 20's during all this struggle. She told me the test questions were just easy this time... division instead of multiplication. I quizzed her on some multiplication though and she snapped them off, just like that with absolutely no hesitation whatsoever. Subtraction seemed a little tougher, but that's ok, I reassured her. Again, she told me that I just asked her simple multiplication facts... no, I know better. She would not have been able to do those 3 weeks ago. No way.

 

I shared the good news with her dad as I was on the way to drop her off there for a Valentine's date with him. His response was that she had some struggles, but "we worked on it and now she is doing better". No. She never struggled like this before. Never. Interesting that she improved when she took the antibiotic.

 

I think I am going to have to add to my research to obtain her math grades for 1st & 2nd quarters to show him what I am talking about here and compare it with the timeline in question.

 

I now know there is usually a huge decrease in math skills with PANDAS kids when they have an episode, but at the time, I did not know what was happening to her and so worried as she had never struggled like this in school before and my heart just broke for her as I searched my mind for answers.

 

She completed the antibiotic this morning. I wish I could say that everything else is back to normal too, but it is not and I know it may take quite a while for the rest to resolve for her... through a gradual improvement. She did not have her usual "I knew I could do it" attitude about the test... I could tell that she is still convinced that she is not so bright and we are going to need to work on her self-esteem to help her resolve that successfully. I hope this is the beginning of things improving for her, but from what I have learned, I will not be shocked if she has another dip as most kids need low-dose antibiotics long-term as well as other treatments. Those are more complex, so our pediatrician will have to discuss with the research docs first. I am waiting to hear back from him about that as I am anxious to keep her moving in a positive direction and get her fully recovered.

 

My huge worry with all this is that one never knows in brain cases just how much will be recovered and how much might be lost. It's a wait and see situation and there is much for which we still have to wait and see and that is not easy and I realize I may have a battle on my hands for treatment with her dad as he is not as convinced as I am that this is PANDAS, so I am continuing to work on that aspect as well. This is one of the most challenging, stressful and painful things I've ever experienced.

 

But, I wanted to share the good news that she really IS still in there somewhere!!!!!

[peglem]

Wow, its great to celebrate those bright spots! It may be a step towards recovery. Its sounds like you're pretty realistic though. Recovery, I think tends to be rather saw toothed- going good, going good, setback, improve, improve, setback. I'm not trying to discourage you, just giving you an idea what to expect. Hopefully the improvment will gain ground over the setbacks. But, really, really delight in the good things that happen!

[michele]

I am so glad she did so well on her test. I know my son who struggles in Math says he is dumb sometimes and it breaks my heart because he is only7! I have to add that his school work is very inconsistant. Sometimes he is much better on the writing, and Math and other times it is just not clicking and is illegible. I don't know if it is a lack of concentration? I can say he is reading really well and likes it. He asks to read to me aloud all the time. He is no longer complaining about Math. He says he is getting better at Math.

 

I agree the recovery is saw toothed and that is just how Dr. Murphy diagnoses PANDAS. The exacerbations come on and improve slowly and then return sometimes not quite as bad as other episodes. It kind of peaks and then gets slightly better. Just when you think it is better then bam! it's back!

 

Also for your info, my husband wasn't on board right away. he was in denial for sometime, and still has little involvement. In fact he has only been to one appointment in six years. He has me handling it all. He won't even discuss his medical history as a child. Can you trace any tic disorders in either side of the family? After about five years my husband told me he had it on his dad's side, and I started to notice some cracking tics in my husband too. His family never discuss illness or my son. His mother has never discussed how my husband was as a child. Maybe he had immune issues, tics, ADHD? So just know even if you don't get the support from family we will be here to listen! Just last night when I was explaining my son's recent meltdown to my sister and how it is hard to deal with because of the brain inflammation, she said well he was used to getting his way all the time so this is new to him that you are making him wait for rewards. Okay, regardless of the fact that yes he has been spoiled, he would not have a giant meltdown like a baby that had gone crazy out in public at age 7 if he was in his right mind!

 

Yesterday the psych told me to quit the ADHD med Concerta because of the moods and inability to sleep over the weekend. She told me to call her Fri. I mean if we just start , stop, what does this do to his little body? That was the second ADHD med in two weeks. It is just a guessing game I think. Interestingly, yesterday he was not as angry. I did not have the Abilify in the morn. He only took the Concerta AM , Omnicef and the Abilify PM. It is so hard to know!

 

Michele

 

 

Michele

 

 

Enjoy the good days!

Wow, its great to celebrate those bright spots! It may be a step towards recovery. Its sounds like you're pretty realistic though. Recovery, I think tends to be rather saw toothed- going good, going good, setback, improve, improve, setback. I'm not trying to discourage you, just giving you an idea what to expect. Hopefully the improvment will gain ground over the setbacks. But, really, really delight in the good things that happen!

[browneyesmom]

My daughter also calls herself "stupid" and "dumb" at times and it breaks my heart also. I tried to talk with her this morning about it. She did a couple of multiplication problems. They were the exact two she had missed on a test about 3 weeks ago. She made one mistake on the first one, but corrected it and got them both right this morning - no struggling in total confusion like she was a few weeks ago. I encouraged her that she is getting well and her math skills are coming back, that when she was struggling a few weeks ago, it was because she was sick, but that she really is smart and is doing better now.

 

She went to the sofa and covered with a blanket without a word and when I asked her if she heard me, she just said "I'm tired." I asked if she remembered struggling with math over the last several weeks and she just shook her head and said she wanted to go to sleep. I went and sat with her and stroked her hair and asked if she was having some "awkward" feelings right then, because she seemed to be in a negative mood, but she kind of pulled away from me, which is unusual for her and said she was tired. I gave her some space for a little while as I packed her lunch.

 

A few minutes later, it seemed to pass and she came back to the kitchen, asked for a hug as she finished her breakfast, then she got her school things together with a good bit of direction from me and got off to school ok... cutting it close to get there on time, but I think she made it, bless her heart.

 

She's also worried about our 14 month old golden retriever, who had a very high fever in the middle of the night. I was up a lot of the night with her, packing her in ice packs and feeding her ice chips as she would not take water. My husband brought her to our vet this am where they will watch her for the day. I'm sure she'll be fine, but my daughter has had increased worry over so many things in recent months and she asked me a couple of times this morning if they would have to put her to sleep! I reassured her, but it's hard to know what sinks in and what doesn't. She wanted me to call her if I get any news during the day, but I told her I probably would not know much until she got home... hope she will be able to put this out of her mind and focus today. Poor dear... so much for a young child to manage at one time! I don't think we really have any idea what they really endure day in and day out... all we can do is watch from the outside and although we see them suffering and ache for them to be well again, it isn't the same as walking in their shoes. I hate to think what it must be like for her to go through this confusion.

 

Thanks for sharing about your husband, Michele... it does make it harder to be the only one who sees/believes there is a medical issue. I do not mean this to sound arrogant in any way, but neither my husband nor my ex have any medical background (nor are they inclined to do much research) and I am an RN, so I admit I can get a little frustrated with both of them suggesting that they have more insight than I do, who has always spent much more time with her than either of them. It just seems to me that I am with her more and more tuned in to things they are not. When I told my ex about the math test, his take on it was that she was having some trouble and he helped her with math and now she is doing better. No. We helped her here at home too (almost every single night!), but it made no difference and she did not do better with his help either - until she took that antibiotic last couple of weeks. Further, she never struggled like this in the first place before now, so what caused that??? It would take some clear data to convince me that it wasn't due to her being sick and the antibiotic is NOT the intervention that made the difference.

 

Oh yes, peglem, I do realize that this may be only a bright spot in the midst of a lot more darkness and confusion, but yeah, hey, at least we got a bright spot and that is a blessing right now!

 

 

 

I am so glad she did so well on her test. I know my son who struggles in Math says he is dumb sometimes and it breaks my heart because he is only7! I have to add that his school work is very inconsistant. Sometimes he is much better on the writing, and Math and other times it is just not clicking and is illegible. I don't know if it is a lack of concentration? I can say he is reading really well and likes it. He asks to read to me aloud all the time. He is no longer complaining about Math. He says he is getting better at Math.

 

I agree the recovery is saw toothed and that is just how Dr. Murphy diagnoses PANDAS. The exacerbations come on and improve slowly and then return sometimes not quite as bad as other episodes. It kind of peaks and then gets slightly better. Just when you think it is better then bam! it's back!

 

Also for your info, my husband wasn't on board right away. he was in denial for sometime, and still has little involvement. In fact he has only been to one appointment in six years. He has me handling it all. He won't even discuss his medical history as a child. Can you trace any tic disorders in either side of the family? After about five years my husband told me he had it on his dad's side, and I started to notice some cracking tics in my husband too. His family never discuss illness or my son. His mother has never discussed how my husband was as a child. Maybe he had immune issues, tics, ADHD? So just know even if you don't get the support from family we will be here to listen! Just last night when I was explaining my son's recent meltdown to my sister and how it is hard to deal with because of the brain inflammation, she said well he was used to getting his way all the time so this is new to him that you are making him wait for rewards. Okay, regardless of the fact that yes he has been spoiled, he would not have a giant meltdown like a baby that had gone crazy out in public at age 7 if he was in his right mind!

 

Yesterday the psych told me to quit the ADHD med Concerta because of the moods and inability to sleep over the weekend. She told me to call her Fri. I mean if we just start , stop, what does this do to his little body? That was the second ADHD med in two weeks. It is just a guessing game I think. Interestingly, yesterday he was not as angry. I did not have the Abilify in the morn. He only took the Concerta AM , Omnicef and the Abilify PM. It is so hard to know!

 

Michele

 

 

Michele

 

 

Enjoy the good days!

Wow, its great to celebrate those bright spots! It may be a step towards recovery. Its sounds like you're pretty realistic though. Recovery, I think tends to be rather saw toothed- going good, going good, setback, improve, improve, setback. I'm not trying to discourage you, just giving you an idea what to expect. Hopefully the improvment will gain ground over the setbacks. But, really, really delight in the good things that happen!

[browneyesmom]

My ex is not inclined to provide me with any medical history on his side of the family either. I've asked at times in the last several months and the only response I've gotten is that he is not going to bother his dad with that right now. His mother passed in May and the family MO seems to be that they are not talking about her at all around their father.

 

 

 

My daughter also calls herself "stupid" and "dumb" at times and it breaks my heart also. I tried to talk with her this morning about it. She did a couple of multiplication problems. They were the exact two she had missed on a test about 3 weeks ago. She made one mistake on the first one, but corrected it and got them both right this morning - no struggling in total confusion like she was a few weeks ago. I encouraged her that she is getting well and her math skills are coming back, that when she was struggling a few weeks ago, it was because she was sick, but that she really is smart and is doing better now.

 

She went to the sofa and covered with a blanket without a word and when I asked her if she heard me, she just said "I'm tired." I asked if she remembered struggling with math over the last several weeks and she just shook her head and said she wanted to go to sleep. I went and sat with her and stroked her hair and asked if she was having some "awkward" feelings right then, because she seemed to be in a negative mood, but she kind of pulled away from me, which is unusual for her and said she was tired. I gave her some space for a little while as I packed her lunch.

 

A few minutes later, it seemed to pass and she came back to the kitchen, asked for a hug as she finished her breakfast, then she got her school things together with a good bit of direction from me and got off to school ok... cutting it close to get there on time, but I think she made it, bless her heart.

 

She's also worried about our 14 month old golden retriever, who had a very high fever in the middle of the night. I was up a lot of the night with her, packing her in ice packs and feeding her ice chips as she would not take water. My husband brought her to our vet this am where they will watch her for the day. I'm sure she'll be fine, but my daughter has had increased worry over so many things in recent months and she asked me a couple of times this morning if they would have to put her to sleep! I reassured her, but it's hard to know what sinks in and what doesn't. She wanted me to call her if I get any news during the day, but I told her I probably would not know much until she got home... hope she will be able to put this out of her mind and focus today. Poor dear... so much for a young child to manage at one time! I don't think we really have any idea what they really endure day in and day out... all we can do is watch from the outside and although we see them suffering and ache for them to be well again, it isn't the same as walking in their shoes. I hate to think what it must be like for her to go through this confusion.

 

Thanks for sharing about your husband, Michele... it does make it harder to be the only one who sees/believes there is a medical issue. I do not mean this to sound arrogant in any way, but neither my husband nor my ex have any medical background (nor are they inclined to do much research) and I am an RN, so I admit I can get a little frustrated with both of them suggesting that they have more insight than I do, who has always spent much more time with her than either of them. It just seems to me that I am with her more and more tuned in to things they are not. When I told my ex about the math test, his take on it was that she was having some trouble and he helped her with math and now she is doing better. No. We helped her here at home too (almost every single night!), but it made no difference and she did not do better with his help either - until she took that antibiotic last couple of weeks. Further, she never struggled like this in the first place before now, so what caused that??? It would take some clear data to convince me that it wasn't due to her being sick and the antibiotic is NOT the intervention that made the difference.

 

Oh yes, peglem, I do realize that this may be only a bright spot in the midst of a lot more darkness and confusion, but yeah, hey, at least we got a bright spot and that is a blessing right now!

 

 

 

I am so glad she did so well on her test. I know my son who struggles in Math says he is dumb sometimes and it breaks my heart because he is only7! I have to add that his school work is very inconsistant. Sometimes he is much better on the writing, and Math and other times it is just not clicking and is illegible. I don't know if it is a lack of concentration? I can say he is reading really well and likes it. He asks to read to me aloud all the time. He is no longer complaining about Math. He says he is getting better at Math.

 

I agree the recovery is saw toothed and that is just how Dr. Murphy diagnoses PANDAS. The exacerbations come on and improve slowly and then return sometimes not quite as bad as other episodes. It kind of peaks and then gets slightly better. Just when you think it is better then bam! it's back!

 

Also for your info, my husband wasn't on board right away. he was in denial for sometime, and still has little involvement. In fact he has only been to one appointment in six years. He has me handling it all. He won't even discuss his medical history as a child. Can you trace any tic disorders in either side of the family? After about five years my husband told me he had it on his dad's side, and I started to notice some cracking tics in my husband too. His family never discuss illness or my son. His mother has never discussed how my husband was as a child. Maybe he had immune issues, tics, ADHD? So just know even if you don't get the support from family we will be here to listen! Just last night when I was explaining my son's recent meltdown to my sister and how it is hard to deal with because of the brain inflammation, she said well he was used to getting his way all the time so this is new to him that you are making him wait for rewards. Okay, regardless of the fact that yes he has been spoiled, he would not have a giant meltdown like a baby that had gone crazy out in public at age 7 if he was in his right mind!

 

Yesterday the psych told me to quit the ADHD med Concerta because of the moods and inability to sleep over the weekend. She told me to call her Fri. I mean if we just start , stop, what does this do to his little body? That was the second ADHD med in two weeks. It is just a guessing game I think. Interestingly, yesterday he was not as angry. I did not have the Abilify in the morn. He only took the Concerta AM , Omnicef and the Abilify PM. It is so hard to know!

 

Michele

 

 

Michele

 

 

Enjoy the good days!

Wow, its great to celebrate those bright spots! It may be a step towards recovery. Its sounds like you're pretty realistic though. Recovery, I think tends to be rather saw toothed- going good, going good, setback, improve, improve, setback. I'm not trying to discourage you, just giving you an idea what to expect. Hopefully the improvment will gain ground over the setbacks. But, really, really delight in the good things that happen!

[michele]

I've told this story before but thought I'd repeat it for you because you can relate. We were out to dinner with my family and his family for my birthday. My son had been sick recently with the blinking and adventitous movements and had an EEG. My inlaws had never inquired to how he was so I thought I'd bring it up. They stormed out of the restaurant after ordering steak and lobster (I had to pay for it of course) and said they never know anything that is going on. (They did this in front of my parents and grandma too)It was like conversation closed. Never again and it has been years have they ever inquired about him to me again. I don't know what my husband tells them or what they know but it is a conversation they don't want to have. Recently my husband mentioned his dad having a movement disorder as a kid. I see my husband cracking his wrists in a certain order and his brother does his knuckles too, his mom and other brother make a facial grimace with their lips. Some people try to sweep things they are embarrased about under the rug. Maybe this runs in your husbands family. Could that be his denial? Remember this is the first (hopefully the last) episode. Maybe after time and repeat course of symptoms your family will come to grips with this.

 

My son seems so much better again tonight. Yeh! That is the hardest thing that the symptoms wax and wane so much! We never can guess the triggers. It maybe self regulation(sensory) and without proper rest, exercise and nutrition those it is hard for them to do. We went to Ot tonight and it helps too.

Michele

My ex is not inclined to provide me with any medical history on his side of the family either. I've asked at times in the last several months and the only response I've gotten is that he is not going to bother his dad with that right now. His mother passed in May and the family MO seems to be that they are not talking about her at all around their father.

 

 

 

My daughter also calls herself "stupid" and "dumb" at times and it breaks my heart also. I tried to talk with her this morning about it. She did a couple of multiplication problems. They were the exact two she had missed on a test about 3 weeks ago. She made one mistake on the first one, but corrected it and got them both right this morning - no struggling in total confusion like she was a few weeks ago. I encouraged her that she is getting well and her math skills are coming back, that when she was struggling a few weeks ago, it was because she was sick, but that she really is smart and is doing better now.

 

She went to the sofa and covered with a blanket without a word and when I asked her if she heard me, she just said "I'm tired." I asked if she remembered struggling with math over the last several weeks and she just shook her head and said she wanted to go to sleep. I went and sat with her and stroked her hair and asked if she was having some "awkward" feelings right then, because she seemed to be in a negative mood, but she kind of pulled away from me, which is unusual for her and said she was tired. I gave her some space for a little while as I packed her lunch.

 

A few minutes later, it seemed to pass and she came back to the kitchen, asked for a hug as she finished her breakfast, then she got her school things together with a good bit of direction from me and got off to school ok... cutting it close to get there on time, but I think she made it, bless her heart.

 

She's also worried about our 14 month old golden retriever, who had a very high fever in the middle of the night. I was up a lot of the night with her, packing her in ice packs and feeding her ice chips as she would not take water. My husband brought her to our vet this am where they will watch her for the day. I'm sure she'll be fine, but my daughter has had increased worry over so many things in recent months and she asked me a couple of times this morning if they would have to put her to sleep! I reassured her, but it's hard to know what sinks in and what doesn't. She wanted me to call her if I get any news during the day, but I told her I probably would not know much until she got home... hope she will be able to put this out of her mind and focus today. Poor dear... so much for a young child to manage at one time! I don't think we really have any idea what they really endure day in and day out... all we can do is watch from the outside and although we see them suffering and ache for them to be well again, it isn't the same as walking in their shoes. I hate to think what it must be like for her to go through this confusion.

 

Thanks for sharing about your husband, Michele... it does make it harder to be the only one who sees/believes there is a medical issue. I do not mean this to sound arrogant in any way, but neither my husband nor my ex have any medical background (nor are they inclined to do much research) and I am an RN, so I admit I can get a little frustrated with both of them suggesting that they have more insight than I do, who has always spent much more time with her than either of them. It just seems to me that I am with her more and more tuned in to things they are not. When I told my ex about the math test, his take on it was that she was having some trouble and he helped her with math and now she is doing better. No. We helped her here at home too (almost every single night!), but it made no difference and she did not do better with his help either - until she took that antibiotic last couple of weeks. Further, she never struggled like this in the first place before now, so what caused that??? It would take some clear data to convince me that it wasn't due to her being sick and the antibiotic is NOT the intervention that made the difference.

 

Oh yes, peglem, I do realize that this may be only a bright spot in the midst of a lot more darkness and confusion, but yeah, hey, at least we got a bright spot and that is a blessing right now!

 

 

 

I am so glad she did so well on her test. I know my son who struggles in Math says he is dumb sometimes and it breaks my heart because he is only7! I have to add that his school work is very inconsistant. Sometimes he is much better on the writing, and Math and other times it is just not clicking and is illegible. I don't know if it is a lack of concentration? I can say he is reading really well and likes it. He asks to read to me aloud all the time. He is no longer complaining about Math. He says he is getting better at Math.

 

I agree the recovery is saw toothed and that is just how Dr. Murphy diagnoses PANDAS. The exacerbations come on and improve slowly and then return sometimes not quite as bad as other episodes. It kind of peaks and then gets slightly better. Just when you think it is better then bam! it's back!

 

Also for your info, my husband wasn't on board right away. he was in denial for sometime, and still has little involvement. In fact he has only been to one appointment in six years. He has me handling it all. He won't even discuss his medical history as a child. Can you trace any tic disorders in either side of the family? After about five years my husband told me he had it on his dad's side, and I started to notice some cracking tics in my husband too. His family never discuss illness or my son. His mother has never discussed how my husband was as a child. Maybe he had immune issues, tics, ADHD? So just know even if you don't get the support from family we will be here to listen! Just last night when I was explaining my son's recent meltdown to my sister and how it is hard to deal with because of the brain inflammation, she said well he was used to getting his way all the time so this is new to him that you are making him wait for rewards. Okay, regardless of the fact that yes he has been spoiled, he would not have a giant meltdown like a baby that had gone crazy out in public at age 7 if he was in his right mind!

 

Yesterday the psych told me to quit the ADHD med Concerta because of the moods and inability to sleep over the weekend. She told me to call her Fri. I mean if we just start , stop, what does this do to his little body? That was the second ADHD med in two weeks. It is just a guessing game I think. Interestingly, yesterday he was not as angry. I did not have the Abilify in the morn. He only took the Concerta AM , Omnicef and the Abilify PM. It is so hard to know!

 

Michele

 

 

Michele

 

 

Enjoy the good days!

Wow, its great to celebrate those bright spots! It may be a step towards recovery. Its sounds like you're pretty realistic though. Recovery, I think tends to be rather saw toothed- going good, going good, setback, improve, improve, setback. I'm not trying to discourage you, just giving you an idea what to expect. Hopefully the improvment will gain ground over the setbacks. But, really, really delight in the good things that happen!

[browneyesmom]

Oh Michele,

 

What a difficult situation for you. Yes, I can totally relate. That is very similar to how my ex's family is.

 

Amazingly, she has been much better most of this afternoon & evening. There have been a couple of instances where we could see she was starting to get spun up, so we just kind of ignored them and gave her some space and they blew over. They were MUCH milder than they have been in the last few weeks. She completed her homework by 8:30, and we got home a bit late, because I had to stop by the hospital for labs on myself and then we had to pick up our dog from the vet and have dinner, so she really did GREAT this evening and for most of the time, has been very happy!

 

Yes, my husband and I were just talking this evening about how nice it is to see her so happy, but I also cautioned that we are not out of the woods yet and told him about what happened this morning when I was encouraging her about math and how she withdrew out of the blue for a few minutes. I think we need to continue to watch her as while she certainly seems to be improving, she is not what I would call back to normal yet.

 

 

I've told this story before but thought I'd repeat it for you because you can relate. We were out to dinner with my family and his family for my birthday. My son had been sick recently with the blinking and adventitous movements and had an EEG. My inlaws had never inquired to how he was so I thought I'd bring it up. They stormed out of the restaurant after ordering steak and lobster (I had to pay for it of course) and said they never know anything that is going on. (They did this in front of my parents and grandma too)It was like conversation closed. Never again and it has been years have they ever inquired about him to me again. I don't know what my husband tells them or what they know but it is a conversation they don't want to have. Recently my husband mentioned his dad having a movement disorder as a kid. I see my husband cracking his wrists in a certain order and his brother does his knuckles too, his mom and other brother make a facial grimace with their lips. Some people try to sweep things they are embarrased about under the rug. Maybe this runs in your husbands family. Could that be his denial? Remember this is the first (hopefully the last) episode. Maybe after time and repeat course of symptoms your family will come to grips with this.

 

My son seems so much better again tonight. Yeh! That is the hardest thing that the symptoms wax and wane so much! We never can guess the triggers. It maybe self regulation(sensory) and without proper rest, exercise and nutrition those it is hard for them to do. We went to Ot tonight and it helps too.

Michele

My ex is not inclined to provide me with any medical history on his side of the family either. I've asked at times in the last several months and the only response I've gotten is that he is not going to bother his dad with that right now. His mother passed in May and the family MO seems to be that they are not talking about her at all around their father.

[Dedee]

I agree with Michele about the saw toothed pattern. That was what we saw in my son for several years. We would have a few good months followed by a strep exposure and many bad months before leveling back off. This went on for several years before he had a tonsilectomy and started daily antibiotics. Now the peaks and valleys are more like bumps in the road. Not nearly as severe and life altering. We had all those same homework / math and handwriting issues you describe. Hang in there. You are on the right track. Just don't let anyone derail you. YOU are the one that is right here and your daughter needs you to fight for her. You are a great mother. She is lucky to have you.

 

Dedee