So Frustrated

[Tamistwins]

Hi All,

 

I have been on here for some time just reading the vast amount of information that you all have to offer. I usually sit back on sidelines taking everything in but it is so hard dealing with all these issues that I thought I would ask for some help. So HELP!!! I have 7 year old boy/girl twins and they both have been diagnosed with PANDAS. As young children before the age of 2 they kept getting recurrent positive rapid strep cultures. I am one of those parents that is always at the pediatrician and I usually always would ask them to do a culture even if their throat wasn't red, and low and behold the doctor was shocked to find out it was positive. Anyway in 2008 my son all of a sudden began to show ocd behavior. After seeing therapist with no help I took him to a psychiatrist who put him on prozac and then switched to zoloft. The reason why was because he could not enjoy his life or childhood, he was so preoccupied with his ocd. But, before the meds I asked the Dr. about PANDAS because I felt he might have that. He was not knowledgeable about it but he had heard about it. Anyway, my son out of the blue began banging his head on hard objects, granite, bathroom shower door. Bang, bang bang..I was terrified so I took him to a neurologist ran eeg and mri everything was normal. He then began with some vocal noises so I'm thinking tourettes. But bingo he tells me his throat hurts has a positive on rapid strep. We rechecked 10 days later rapid strep negative but lab test positive. Eventually is head banging ceased. But what I'm dealing with now is a completely changed child from the sweet loving caring empathetic child I had. He is so nasty, oppositional, talks down to people, corrects adults if they don't say a word how he thinks it should be said. I have been reading of exacerbations. My son dosen't have exacerbations he is chronic. Every day my house is a battle field. He is constantly hitting my daughter and she is constantly whining, screaming and tattertaling which just makes him hit her again. He dosen't hit her hard for the most part. I am embarassed to go anywhere with them. We did IVIG recently and they are worse , I am praying and waiting for it to turn around.

My daughter didn't have as obvious signs as my son so I wasn't so sure she had pandas until we got cunningham test back. She is a big whiner and cries loudly when she dosen't get her way, this may be normal for some kids but with her she will not stop. It is excessive!!! She also needs to urinate frequently I took her to urologist just thinking that she would outgrow this but now i realize it is her symptom of pandas. She got a head/neck tick which went away on zithromax. She was also doing a snapping movement with her fingers which seems to have gone away too. She blinks her eyes excessively and the seperation anxiety is extreme. OMG I can not leave the house without them screaming carrying on and running out the door after me. And, I have never left them with a sitter other than family. She will keep herself up so late because she's terrified I will leave and I have never given her a reason to think I would. This has been such a rough year it seems like every day is miserable and I am crying all the time. I hate how I feel towards them because I have loved and adored them. And, I know they are sick and can't help it but its so hard when they abuse me and I get angry and sad. I am just venting, we all have issues but so much of my sons is behavioral and aggression and odd how do u differentiate between pandas and bad behavior? where do we draw the line and if its pandas dosent it also become a learned behavior that they are used to?

 

HELP

[saidie10]

Gosh, reading your post makes me think of the my boys...I know how you feel. DH and I used to go to war over whether our boys behavior was normal boys just being boys, or whether some or all of the raging behavior was all part of PANDAS. After finally getting the Cunningham Tests, and hearing other parents on this board talk about the anger, frustration, whining, fit throwing kids and that it seemed fairly consistent for a lot of these children that were dx with PANDAS, we totally had to change how we were dealing with these behaviors and it was not easy.

 

Hang in there. I understand some of the toughest times can come after IVIG. We are 3 wks out of IVIG for our oldest who is 7 and I think I am starting to see a lot more of the sweet boy I remember before he turned 5 1/2 and all of our lives changed forever. One thing we did that may or may not work for you is when we start to see the anger swelling up in him and we know he is going to blow...and I mean blow...or if he already is going ballistic, we give him his eye protection and a hammer and we send him to the creek bed in our back yard to bang rocks. He tears them up!! We tell him he can go out there and get it all out until he feels better. THEN, once he has calmed down, we sit down and we talk about what he did or was doing or about to do that was wrong and we do discipline for the behavior. It is impossible to settle him down during one of his meltdowns though and trying to reason with him or threaten discipline never works.

 

Be patient and continue to seek help on this board. It is a great source for venting and getting some excellent advice. Hope mine helps a little.

[kimballot]

Hello - This is one of those situations where I want to say "welcome to the forum"... but that is always difficult when I am sure you would rather be somewhere else... so instead I'll say... I think you are an amazing parent, and I read your post with awe and I have a great deal of respect for you. I am glad you posted and I am sure we can learn much from you and sure you will learn (and already have learned)much from the folks on this board.

 

I can remember my son's darkest days when we dealt with absolute terror at night, fear of me leaving (coupled with rage toward me when I was there), my own fear that he would hurt himself or someone else if I left him, and that aweful feeling in the pit of my stomach that I would not be able to fix this for him and he would never know happiness or satisfaction. I read your post and wondered how it would have been if I had two children experiencing those same issues at that time. I cannot imagine being hit with two exacerbations at once. You are a very strong person- and I say that because somehow you have managed to find this forum and negotiate your way through to getting cunningham tests on your kids.

 

You are correct that it is difficult to separate the medical issues from the learned behaviors. It seems that it takes weeks sometimes to overcome a simple cold - 5 days for the cold to run its course, and 10 days (or more) to undo all the behaviors that were learned during the illness - and that is without a major PANDAS exacerbation being triggered. I have used medical intervention, behavior management for my kids, and counseling for my own mental health in the past and I think they are all needed during major exacerbations.

 

Regarding medical issues - You do not mention if you are working witha PANDAS specialist. I hope you have found one. We have worked with a couple of PANDAS docs and I cannot tell you the relief I felt when I first spoke with someone who understood the pattern... someone who could ask the right questions. It is quite likely that your children are still have infections somewhere (especially your son). I don't know if you've had a complete blood workup, but a good PANDAS doc will check for more than just strep - they will check for things like mycoplasma and lyme. Also, I think it is important to have an immune status panel to see if your child is having trouble fighting infections and if there are any signs of autoimmune reactions. It sounds like your son may have trouble with fighting infections, given his frequent (and young) strep throat issues.

 

Regarding behavioral issues - Many parents on this forum have used different OCD programs. I did not know about those when my son was younger and I wish I did. Perhaps some other parents will add their ideas about that or perhaps you could use the search feature on the forum or post a new thread. We did do lots of behavior modification (my son's behaviors looked more like ADHD when he was younger)... and we did do parent training for ADHD, which was very helful. I found the best thing was for my husband and me to attend the same parent training class - that way we were both on the same page when we addressed the issuse.

 

Regarding support for yourself -- It is important to find someone who is open minded about PANDAS. It is easy for professionals to assume that the problem is that we (as parents) are overly anxious about our kids and that we are somehow causing the behaviors in our children by over reacting to strep throat. So... my advice is to find someone who is a good listener who can help you sort things out and support you while you are supporting the rest of your family.

 

I wish you all the best -

[Tamistwins]

Gosh, reading your post makes me think of the my boys...I know how you feel. DH and I used to go to war over whether our boys behavior was normal boys just being boys, or whether some or all of the raging behavior was all part of PANDAS. After finally getting the Cunningham Tests, and hearing other parents on this board talk about the anger, frustration, whining, fit throwing kids and that it seemed fairly consistent for a lot of these children that were dx with PANDAS, we totally had to change how we were dealing with these behaviors and it was not easy.

 

Hang in there. I understand some of the toughest times can come after IVIG. We are 3 wks out of IVIG for our oldest who is 7 and I think I am starting to see a lot more of the sweet boy I remember before he turned 5 1/2 and all of our lives changed forever. One thing we did that may or may not work for you is when we start to see the anger swelling up in him and we know he is going to blow...and I mean blow...or if he already is going ballistic, we give him his eye protection and a hammer and we send him to the creek bed in our back yard to bang rocks. He tears them up!! We tell him he can go out there and get it all out until he feels better. THEN, once he has calmed down, we sit down and we talk about what he did or was doing or about to do that was wrong and we do discipline for the behavior. It is impossible to settle him down during one of his meltdowns though and trying to reason with him or threaten discipline never works.

 

Be patient and continue to seek help on this board. It is a great source for venting and getting some excellent advice. Hope mine helps a little.

Thank you Sadie, wow a hammer hmm..my son helps himself to tools but I don't think that idea would work with us. He is so oppositional doesn't listen to a thing I wish I could offer him an outlet to vent but unfortunately his anger is geared at me. I do get a "sorry mommy" and s few tears in his eyes later, i don't really feel he wants to act that way. He is a smart boy and I can not reason with him it is so frustrating.

[Tamistwins]

Hello - This is one of those situations where I want to say "welcome to the forum"... but that is always difficult when I am sure you would rather be somewhere else... so instead I'll say... I think you are an amazing parent, and I read your post with awe and I have a great deal of respect for you. I am glad you posted and I am sure we can learn much from you and sure you will learn (and already have learned)much from the folks on this board.

 

I can remember my son's darkest days when we dealt with absolute terror at night, fear of me leaving (coupled with rage toward me when I was there), my own fear that he would hurt himself or someone else if I left him, and that aweful feeling in the pit of my stomach that I would not be able to fix this for him and he would never know happiness or satisfaction. I read your post and wondered how it would have been if I had two children experiencing those same issues at that time. I cannot imagine being hit with two exacerbations at once. You are a very strong person- and I say that because somehow you have managed to find this forum and negotiate your way through to getting cunningham tests on your kids.

 

You are correct that it is difficult to separate the medical issues from the learned behaviors. It seems that it takes weeks sometimes to overcome a simple cold - 5 days for the cold to run its course, and 10 days (or more) to undo all the behaviors that were learned during the illness - and that is without a major PANDAS exacerbation being triggered. I have used medical intervention, behavior management for my kids, and counseling for my own mental health in the past and I think they are all needed during major exacerbations.

 

Regarding medical issues - You do not mention if you are working witha PANDAS specialist. I hope you have found one. We have worked with a couple of PANDAS docs and I cannot tell you the relief I felt when I first spoke with someone who understood the pattern... someone who could ask the right questions. It is quite likely that your children are still have infections somewhere (especially your son). I don't know if you've had a complete blood workup, but a good PANDAS doc will check for more than just strep - they will check for things like mycoplasma and lyme. Also, I think it is important to have an immune status panel to see if your child is having trouble fighting infections and if there are any signs of autoimmune reactions. It sounds like your son may have trouble with fighting infections, given his frequent (and young) strep throat issues.

 

Regarding behavioral issues - Many parents on this forum have used different OCD programs. I did not know about those when my son was younger and I wish I did. Perhaps some other parents will add their ideas about that or perhaps you could use the search feature on the forum or post a new thread. We did do lots of behavior modification (my son's behaviors looked more like ADHD when he was younger)... and we did do parent training for ADHD, which was very helful. I found the best thing was for my husband and me to attend the same parent training class - that way we were both on the same page when we addressed the issuse.

 

Regarding support for yourself -- It is important to find someone who is open minded about PANDAS. It is easy for professionals to assume that the problem is that we (as parents) are overly anxious about our kids and that we are somehow causing the behaviors in our children by over reacting to strep throat. So... my advice is to find someone who is a good listener who can help you sort things out and support you while you are supporting the rest of your family.

 

I wish you all the best -

Thank you Kimballot for your sweet words although I do not feel like an amazing parent, in fact I feel like a failure. I have always loved children and thought my family and children would be so different. The way they behave at home or with me in general makes me feel as if I have not diciplined them or taught them right from wrong. There is no respect, manners empathy for one another. It is so sad. I have seen Dr. B in Ct. He is very compassionate. When I told him how angry I get at my son for the way he speaks to me he told me not to that he can't help it it is the illness. I am praying that it is just that and he will improve dramatically. He complains to me every night that he dosen't feel well and I tell him he will feel better soon. I feel so helpless. What more can I do, he is on antibiotic, we did IVIG. There is no point in seeing the pediatrician what can they do?

 

My son, not daughter, does have an immunodeficiancy. This year alone he had strep, mycoplasma and mono a 7 year old that's insane.

 

Anyway thank you for all your advice, your sweet. I did previously try the therapy route but no one wanted to listen to what I was dealing with. One psychologist met with me alone then with my son 2x alone for an evaluation. He told me he dosen't feel there is a need to continue to be seen but if a situation arises I should contact him. What the heck is that??? I had to pay 150.00 for that advice? Then another person I saw did not like to label kids. Ummm ok so how do u plan on helping. I just felt therapy was a waste of money that I didn't have.

[T_Mom]

Tamistwins--Welcome and I am sorry you had to be here too--

 

We have been through it and as I read your post tonight I can't help feeling the frustration and hurt that this causes...We are in the midst of a "bad spell" right now--with both of our daughters...I want to encourage you that healing takes time.

 

Even as I write that -- I am reminding myself, as this is so darn hard and I am scared of it getting worse. It takes time to heal though-- I remember Diana P. telling me to hang in there, that it takes months sometimes, and she was right.

 

We are a compassionate group here on the forum. One thing we have seen is that for many of our children healing takes time. Plan the treatment steps and then hold steady and give them time--I am telling myself that tonight as well.

Edited September 12, 2010 by T.Mom

[Tamistwins]

Tamistwins--Welcome and I am sorry you had to be here too--

 

We have been through it and as I read your post tonight I can't help feeling the frustration and hurt that this causes...We are in the midst of a "bad spell" right now--with both of our daughters...I want to encourage you that healing takes time.

 

Even as I write that -- I am reminding myself, as this is so darn hard and I am scared of it getting worse. It takes time to heal though-- I remember Diana P. telling me to hang in there, that it takes months sometimes, and she was right.

 

We are a compassionate group here on the forum. One thing we have seen is that for many of our children healing takes time. Plan the treatment steps and then hold steady and give them time--I am telling myself that tonight as well.

Thank you T. Mom I am sorry for your difficult times as well, You mention "bad spell" as many mention episode or exacerbation. Is there anyone else that has chronic children. I don't get the bad and the good it seems like its all bad. Just wondering if anyone else has similar situation.

[kimballot]

Thank you Kimballot for your sweet words although I do not feel like an amazing parent, in fact I feel like a failure. I have always loved children and thought my family and children would be so different. The way they behave at home or with me in general makes me feel as if I have not diciplined them or taught them right from wrong. There is no respect, manners empathy for one another. It is so sad. I have seen Dr. B in Ct. He is very compassionate. When I told him how angry I get at my son for the way he speaks to me he told me not to that he can't help it it is the illness. I am praying that it is just that and he will improve dramatically. He complains to me every night that he dosen't feel well and I tell him he will feel better soon. I feel so helpless. What more can I do, he is on antibiotic, we did IVIG. There is no point in seeing the pediatrician what can they do?

 

My son, not daughter, does have an immunodeficiancy. This year alone he had strep, mycoplasma and mono a 7 year old that's insane.

 

Anyway thank you for all your advice, your sweet. I did previously try the therapy route but no one wanted to listen to what I was dealing with. One psychologist met with me alone then with my son 2x alone for an evaluation. He told me he dosen't feel there is a need to continue to be seen but if a situation arises I should contact him. What the heck is that??? I had to pay 150.00 for that advice? Then another person I saw did not like to label kids. Ummm ok so how do u plan on helping. I just felt therapy was a waste of money that I didn't have.

 

Oh Tamistwins.... I wish I could give you a real hug and find a way to tell you that I felt that way for years. When my son was younger and so very disrespectful to me and always hurting others I just could not believe that he was my child and kept wondering what I did to deserve this. He is not that way anymore, but he does still have rages when he is in an exacerbation. Only now he and I both know what it is and he is old enough to talk with me about it.

 

Dr. B is right that it is not your son's fault, but that does not mean that your son should not be responsible for any parts of his behavior. It is so difficult to sort out how much to expect and when to start expecting more. I wish we had child psychologists that specialized in PANDAS. We have a few physical doctors treating it across the country, but I don't know of any psychologists or behavioral counselors.... does anyone else?

 

 

Now, you said your son has had IVIG and is on antibiotics. How long ago was the IVIG, and what antibiotic is he on? Is he taking anything else, like diflucan? Probiotics?

 

Also, do you have a way of keeping track of behaviors every day. It is important to keep track of behaviors so you can see when there are small changes. Sometimes our kids are getting better or worse and we do not realize it right away.

 

I am sorry to hit you with so many questions. You have been reading this forum for a while, so I am sure you have thought of these things, but perhaps there are suggestions that others can make in the way of supplements or timing of medication that could help you.

 

I will be looking for you reply!

[thereishope]

Welcome to the forum! May I ask if you saw a PANDAS specialist for the IVIG and did you say what antibiotics he was on before IVIG and if he is still on antibiotics now?

 

Did you test yourself and everyone else in the house for strep?

[Buster]

We rechecked 10 days later rapid strep negative but lab test positive

 

So does this mean that you treated your children with an antibiotic when they first tested positive? Was the "lab test positive" a statement about running a agar culture or something else?

 

The behavior you describe certainly matches the OCD symptoms on this forum. Have you tested kids 3 weeks after treatment to ensure they are clear? Were they clear in the summer (easiest time to clear kids typically)?

 

Regards,

 

Buster

[Tamistwins]

We rechecked 10 days later rapid strep negative but lab test positive

 

So does this mean that you treated your children with an antibiotic when they first tested positive? Was the "lab test positive" a statement about running a agar culture or something else?

 

The behavior you describe certainly matches the OCD symptoms on this forum. Have you tested kids 3 weeks after treatment to ensure they are clear? Were they clear in the summer (easiest time to clear kids typically)?

 

Regards,

 

Buster

Hi Buster,

 

he was on antibiotic after he tested positive on rapid culture. After a 10 day course on antibiotic we rechecked to make sure strep was gone. The rapid showed a negative culture but they also swabbed for the lab and that came back positive after finishing a 10 day course. Then he was given another antibiotic to treat as a carrier, we did not recheck after that.

[Megs_Mom]

Thank you Kimballot for your sweet words although I do not feel like an amazing parent, in fact I feel like a failure. I have always loved children and thought my family and children would be so different. The way they behave at home or with me in general makes me feel as if I have not diciplined them or taught them right from wrong. There is no respect, manners empathy for one another. It is so sad. I have seen Dr. B in Ct. He is very compassionate. When I told him how angry I get at my son for the way he speaks to me he told me not to that he can't help it it is the illness. I am praying that it is just that and he will improve dramatically. He complains to me every night that he dosen't feel well and I tell him he will feel better soon. I feel so helpless. What more can I do, he is on antibiotic, we did IVIG. There is no point in seeing the pediatrician what can they do?

 

My son, not daughter, does have an immunodeficiancy. This year alone he had strep, mycoplasma and mono a 7 year old that's insane.

 

Anyway thank you for all your advice, your sweet. I did previously try the therapy route but no one wanted to listen to what I was dealing with. One psychologist met with me alone then with my son 2x alone for an evaluation. He told me he dosen't feel there is a need to continue to be seen but if a situation arises I should contact him. What the heck is that??? I had to pay 150.00 for that advice? Then another person I saw did not like to label kids. Ummm ok so how do u plan on helping. I just felt therapy was a waste of money that I didn't have.

 

Oh Tamistwins.... I wish I could give you a real hug and find a way to tell you that I felt that way for years. When my son was younger and so very disrespectful to me and always hurting others I just could not believe that he was my child and kept wondering what I did to deserve this. He is not that way anymore, but he does still have rages when he is in an exacerbation. Only now he and I both know what it is and he is old enough to talk with me about it.

 

Dr. B is right that it is not your son's fault, but that does not mean that your son should not be responsible for any parts of his behavior. It is so difficult to sort out how much to expect and when to start expecting more. I wish we had child psychologists that specialized in PANDAS. We have a few physical doctors treating it across the country, but I don't know of any psychologists or behavioral counselors.... does anyone else?

 

 

Now, you said your son has had IVIG and is on antibiotics. How long ago was the IVIG, and what antibiotic is he on? Is he taking anything else, like diflucan? Probiotics?

 

Also, do you have a way of keeping track of behaviors every day. It is important to keep track of behaviors so you can see when there are small changes. Sometimes our kids are getting better or worse and we do not realize it right away.

 

I am sorry to hit you with so many questions. You have been reading this forum for a while, so I am sure you have thought of these things, but perhaps there are suggestions that others can make in the way of supplements or timing of medication that could help you.

 

I will be looking for you reply!

 

If you want to add a psychologist or therapist, to learn tools to deal with OCD and all the related issues, as well as the issues that high anxiety can create - you are looking for a Pediatric ERP therapist. You can check the OCFoundations Website. To be frank, they are hard to find, depending on your area. If the don't understand ERP therapy (as well as CBT), then you really are wasting your money (IMO!!). ERP is not a cure for a PANDAS child, but you - and your child - can learn a ton of tools that can take the edge off the disease. We found it very helpful. We went to Duke in NC, at the worst of it (PCAAD), and while they did not specialize in PANDAS (we used medical doctors for that) they do specialize in ERP. In a lot of ways, they were most helpful to me - I sat in every session, as often my daughter could not respond well, and I learned pretty amazing techniques to use with her. These were not intuitive parenting skills - having a child with OCD, whatever the cause, is a pretty overwhelming situation.

[EAMom]

We did IVIG recently and they are worse , I am praying and waiting for it to turn around.

 

 

So they both had IVIG? what dose? How long ago? Sometimes things get worse for the first few weeks post-IVIG.

 

I am surprised they are not both currently on antibiotics. Many PANDAS parents find their kids do much better (regardless of whether they've had IVIG or not) when kept on full-strength antibiotics (long term). Azith. and Augmentin are popular ones on this forum. Also, my fear is that if (esp. you son) is still strep positive (even with having IVIG) the benefits of IVIG will be lost if he continues to have a strep infection (or colonization).

 

Could I ask where you live? Are you already working with a PANDAS doc?

 

Then he was given another antibiotic to treat as a carrier, we did not recheck after that.

 

How long ago was this? Do you remember what antibiotic and dose was used.

 

Also, have you tried Advil (ibuprofen)? Sometimes that helps PANDAS symptoms.

Edited September 13, 2010 by EAMom

[Bio and adopt]

I am so sorry you are going through this. I know exactly how you feel. My PANDAS kids now 20 and 15 have a very similiar history to your kids. There were days when I did not like my kids (always loved them). I knew back in late 90's that is was strep related but no doctor believed me. They were always treated for Tourettes, OCD, ADD, ODD. etc. They were treated with prozac, zoloft, imiprimine, and many many more. My daughter got worse until about 12 and son started becoming easier around 9. My son now 15 still has some small issues (slight motor tic, frequent uriniation, food issues) but is a wonderful, sweet, easy teen. My 20 yo daughter has more issues but has just been diagnosed with Lyme. She is on her own, has a great job, goes to college and has good days and bad. She still has some motor tics that come and go. Has some OCD with clothes feeling right, hair isnt right, etc. Continue to fight for treatment for them. Things do get better. We have only recently gotten an official diagnosis and treatment.

[Tamistwins]

Thank you Kimballot for your sweet words although I do not feel like an amazing parent, in fact I feel like a failure. I have always loved children and thought my family and children would be so different. The way they behave at home or with me in general makes me feel as if I have not diciplined them or taught them right from wrong. There is no respect, manners empathy for one another. It is so sad. I have seen Dr. B in Ct. He is very compassionate. When I told him how angry I get at my son for the way he speaks to me he told me not to that he can't help it it is the illness. I am praying that it is just that and he will improve dramatically. He complains to me every night that he dosen't feel well and I tell him he will feel better soon. I feel so helpless. What more can I do, he is on antibiotic, we did IVIG. There is no point in seeing the pediatrician what can they do?

 

My son, not daughter, does have an immunodeficiancy. This year alone he had strep, mycoplasma and mono a 7 year old that's insane.

 

Anyway thank you for all your advice, your sweet. I did previously try the therapy route but no one wanted to listen to what I was dealing with. One psychologist met with me alone then with my son 2x alone for an evaluation. He told me he dosen't feel there is a need to continue to be seen but if a situation arises I should contact him. What the heck is that??? I had to pay 150.00 for that advice? Then another person I saw did not like to label kids. Ummm ok so how do u plan on helping. I just felt therapy was a waste of money that I didn't have.

 

Oh Tamistwins.... I wish I could give you a real hug and find a way to tell you that I felt that way for years. When my son was younger and so very disrespectful to me and always hurting others I just could not believe that he was my child and kept wondering what I did to deserve this. He is not that way anymore, but he does still have rages when he is in an exacerbation. Only now he and I both know what it is and he is old enough to talk with me about it.

 

Dr. B is right that it is not your son's fault, but that does not mean that your son should not be responsible for any parts of his behavior. It is so difficult to sort out how much to expect and when to start expecting more. I wish we had child psychologists that specialized in PANDAS. We have a few physical doctors treating it across the country, but I don't know of any psychologists or behavioral counselors.... does anyone else?

 

 

Now, you said your son has had IVIG and is on antibiotics. How long ago was the IVIG, and what antibiotic is he on? Is he taking anything else, like diflucan? Probiotics?

 

Also, do you have a way of keeping track of behaviors every day. It is important to keep track of behaviors so you can see when there are small changes. Sometimes our kids are getting better or worse and we do not realize it right away.

 

I am sorry to hit you with so many questions. You have been reading this forum for a while, so I am sure you have thought of these things, but perhaps there are suggestions that others can make in the way of supplements or timing of medication that could help you.

 

I will be looking for you reply!

Hi Kimballot,

sorry it's taking me so long to respond. I am so happy to hear that your son is no longer the way he used to be with regards to disrespect and being "mean" to people. How old is your son? I just feel how can my son not be aware of how he is treating us? He is a smart boy. But he is totally different from how he was before he got really sick so I am praying he too will no longer act this way in time.

 

With regards to keeping track of things, I am so bad with that , do u have any suggestions as to how I can keep record of behaviors?

 

My son had IVIG Aug 25 and 26th and my daughter had it a week later. Since the IVIG my daughter is so much worse. She has become so defiant and willful. SHe screams on top of her lungs and is relentless. Her eye blinking has gotten so much worse and it seems as if she has some sort of throat tick that she never had before, I am feeling sorry that I ever had her do it. My son was so much worse he needed it done, but, because of my daughter's high scores on the cunningham tests, the dr. felt we should go ahead with ivig for her as well before things get worse.

 

Both my children are on Zithromax and after the ivig I got a script for diflucan because my sons finger nails were discolored and falling off, might have been due to the augmentin xr he was on previously.

 

Again thank you for your compassion and responses.