When your child was first being diagnosed.....

[JennyC]

When your child was first diagnosed how did you feel? Isa has the tics and vocal tics, epilepsy and sensory issues, now they are saying she is on the autism scale. Im fighting with insurance to get her to a better team of docs, been fighting for that for a month, there has been a doctors appt every week this month, constant ear infections and high fevers, meeting with the early education intervention team and while I think Im taking it all in stride and its not bothering I dont think I really am okay. I feel like all Ive done is fight people, first my own family when they were in denial and then the doctors and the insurance...Ive gotten so serious that my husband cant joke with me, at the end of the day after dealing with her constant hyperactivity and over and over questions that she asks even though she was just told the answer, I am frazzled and worn out and snippy. I dont want this to take over my whole life and let this happen to me and my marriage but at the same time I feel like right now in the beginning I HAVE to be on top of everything until we get all the diagnoses , get her doctors and all that in place....did you all go through this?? Does it get better?? What were your coping methods? Does it level out?

[CSP]

Jenny,

 

I totaly understand how you feel. First I want to say that Great plains Lab now take Blue cross Blue Shield.

 

My feelings in the beginning were a lot like yours. I had panic attacks, and almost had to be medicated myself. My Dr. told me not to fill the prescription unless I really needed to. That I was just in fear of the unknown. He was right and I never filled the prescription. When my husband would try to make me laugh I would start to cry, because what he said was funny, but I could not enjoy anything happy, I just felt too sad. Yes, I do believe you are on the right track getting all your duck in a row, and then peace will come when you know you have done all that can be done for your child.

 

Coping for me was/is running to our Lord.

 

He always finds a way to give me hope with my son or something wonderful would happen with my daughters, and finally a way to enjoy life again.

 

C.P.

[Chemar]

((((((Jenny)))))

 

I was devastated when my son was going thru the diagnostic process. At the time we truly did not recognize the tics as TS as such (my hubby and grandpa's dx fell into place when my son got his) and it was more the blending with OCD, depression etc that was so bewildering and overwhelming and exhausting for me as a mom

 

honestly all that kept me from falling apart at that time was God.

 

I did learn along the way tho that I simply HAD to take it a step and a day at a time for my own sanity as well as for the family, and especially for my son's sake. I quickly discovered that if I was "on edge" it made things way worse for him. I had to go thru that very hard phase of acceptance that something was seriously "wrong" with my child and then also accept that I couldnt be "in control" of it all...it wasnt easy but it sure helped me get the balance that was so needed to be able to help my child where I could, without it being obsessive for me to be able to "fix" it all. It's in my nature to do that, and so I really had to work hard on getting that balance.

 

 

I deeply sympathize and hope you will soon have the right team of physicians, educators etc in place to guide you and that Isa will respond well and make much positive progress.

Hoping too that you and she will be able to have special times together each day to just enjoy one another!

[JennyC]

Its just totally weird because I FEEL like Im okay with it but obviously Im not because I cant enjoy things and am snippy and on edge all the time. Im not really worrying about her future or anything like that but maybe I am subliminaly (sp) or something. Im not all upset because Isa isnt the perfectly healthy child you expect...I just dont know what it is. Is it fighting for her all of the time? Is it running around to all these different appts?? I just wish I knew exactly what it was that is making me like this. Maybe its just a mix of everything.

 

Its funny because she see seems so normal to me that when I tell people that she has autism (like her playmates parents so they can better understand her) I feel like Im lying to them, like she doesnt really have it and Im saying she is lol. Its like Im going through the motions of doing everything I need to for her (dr, school, insurance etc.) but emotionally Im in denial. I know that there are different degrees of autism and some are super highly functioning but I still feel like she should be worse off if she had autism. Or maybe its because she is my only child and I have super limited knowledge of children and thats why she seems so normal?? Or maybe she is going to get worse? (she hit all her milestones and its only in the past 8 months that things have been changing for her)

 

Thanks for letting me vent and babble, it means more than you know

[JennyC]

I had to go thru that very hard phase of acceptance that something was seriously "wrong" with my child

 

I think thats what Im having trouble with, accepting that something seriously different about Isa. Im not mourning who she could have been without it because I adore her with it but Im having trouble believing there is something wrong. I feel like an imposter lol if that makes any sense at all. I feel like my child is perfectly fine and some how its in my mind even though the docs agree....its odd.

[faith]

Jenny,

What I'm seeing is that this is a GOOD thing what you are feeling. You are exactly right in that you are feeling like your child is perfectly normal -- because she IS. You are where I wish we could all be. Just because they have some issues, eventually we are shown by the Grace of God that it is not as frightening and terrible thing as we first fear. I think someone once told me fear is the opposite of faith.

 

Maybe she has some motor and a vocal tic. Maybe she has some sensory issues. Maybe a little ocd. Perhaps she is very mildly autistic, which in her case, it is probably the asbergers type in which they are a little behind in the social aspect. But, what you are experiencing is your beautiful little girl as exactly the adorable little one she is, and you woudl probably not have her any other way. You are doing a magnificent job of just being her mother and getting her all the help she may need.

 

Trust me, you don't want to go down that dark road, its not fun. In time when most of educational things are in place, then you will exhale a little better and further enjoy how awesome and wonderful she is and not feeling like you are fighting anymore.

 

Blessings,

Faith

[JennyC]

Faith,

 

It made me laugh when you said "you probably wouldnt want her any other way". I laugh because that is one of my struggles, I DONT want her any other way because if she didnt have problems she wouldnt be the Isa that I know but my struggle with that is it makes me feel like a bad mom, like I want her to have these issues.People at church keep telling me to pray for healing but I kind of hesitate to pray for healing because I feel like God made her this way on purpose and I dont want a different girl, I want MY girl. So I pray that the rough patches in her life because of this wont be so rough and that she will have the strength to deal with what is throw at her....but that make me feel guilty like why wouldnt I want my kid healed??? Its an inner struggle for me.

 

Jenny

[Dedee]

Jenny,

 

I just wanted to add to the great advice you have already received. It has been a while since my sons diagnosis (PANDAS with OCD & tics). However, I can still remember it like yesterday. I kept thinking how hard it was going to be on him at school and with friends. I would cry every day and I was horrible to my poor husband. He just didn't understand any of it and was so willing to take what the doctors said (which was useless) as gospel. I think when I finally just accepted that this is what we have to deal with and he is still my sweet, loving little boy, things started to get better. I continued to fight with doctors until I found the right help, but I wasn't so crazy and uptight. It is so difficult when you can't get the proper care for your child. It is such a helpless feeling. I look back on all of that now and realize that I am a much stronger mother and I am more accepting of my children as they are. I think in many ways the entire struggle was a blessing for my spirtual growth. Of course, no way could I have seen that then. I will pray for you and your daughter. I hope the road smooths out for you. Good luck in your efforts.

 

Dedee

[Pamela Kay]

When I first found out about my sons tics etc. I was so very mad at God. My son was already having issues with learning why would he do this to him too? I researched a ton and was lucky enough to find this board, but when I say I researched my husband would say I was obsessed. I made a promise to my son that I would help find answers for him. Along the way I came to realize that his tics were a clue, they helped me learn about allergies/intolerances and how they can really mess with the mind. I have come so far in the past two years and I have learned so much. I know now that it all is a lesson that God is teaching. My husband who thought I was losing it and was obsessed learned not to question me anymore. He is behind me 95% of the time now. The rest of the time he knows just to let me be. Sometimes when my son gets moody or emotional I wonder what is going on what did he have to eat etc. but then I have to stop and remember that he is a kid and kids do just have meltdowns and attitudes on occasion.

[CSP]

I feel like God has educated me to pass down to my kids and grandkids that food can cause a lot of illnesses. He may have reversed cancer in anyone of us.

 

C.P.

[michele]

Jenny,

 

I felt very alone and overwhelmed from the first strep/PANDAS episode. My son couldn't even walk yet and was having all these finger and eye tics. I was very scared and anxious and read online constantly day and night. It was during that time that my own polyarthritis began from the stress. Looking back that was a dark time. I also called around and went Dr. to Dr. It was years before things fell into place for us. My husband has never been supportive of me on this. I've done all the sacrificing. He doesn't go to Dr's or research any of it. I have gone to all the school meetings and set up every Dr. appointments. He is very detached so I feel resentment towards him. I even traveled to Florida alone with my son by airplane. My husband never felt the need to see Dr. Murphy. It puts a lot of strain on your marriage. I hate to say it but you do need to be on top of this for your daughter. You are her best advocate. I also felt exhausted at the end of the day when dealing with my son's constant temper tantrums and battles. Just know all the work you are doing will pay off. It does level off eventually but there is always that unknown lurking over your shoulder. I wait for the next episodes or symptoms to begin. It is a rough road but when you finally find something that works it is like magic! That is the payback you will feel like you figured out a piece in the puzzle. God and prayers are huge ifor me in this recovery for my son. I can remember sitting in church and all the children go up and sing in the junior choir. My son could never do it. I remember just balling for the child he will never be. He can't go along with that sort of structure. Little children age three are up there but he can't stand still long eneough at age five. He acts up in the pews during church. I agree you ask why him God? Remember to keep up that fight it will get you ahead. Sitting back and doing nothing will get you nowhere. I know what you mean about denial in family members. Even my own mom thought he was spoiled and that is why he cied for things. People don't get the neurological issue and how it affects their brain and behaviors. Don't worry about them, pray for them too. I know you are going through alot right now. Remember the people here are wonderful and are willing to be your sounding board. They are what got me through alot of dark days. Blessings to you and your daughter.

 

Michele

 

When your child was first diagnosed how did you feel? Isa has the tics and vocal tics, epilepsy and sensory issues, now they are saying she is on the autism scale. Im fighting with insurance to get her to a better team of docs, been fighting for that for a month, there has been a doctors appt every week this month, constant ear infections and high fevers, meeting with the early education intervention team and while I think Im taking it all in stride and its not bothering I dont think I really am okay. I feel like all Ive done is fight people, first my own family when they were in denial and then the doctors and the insurance...Ive gotten so serious that my husband cant joke with me, at the end of the day after dealing with her constant hyperactivity and over and over questions that she asks even though she was just told the answer, I am frazzled and worn out and snippy. I dont want this to take over my whole life and let this happen to me and my marriage but at the same time I feel like right now in the beginning I HAVE to be on top of everything until we get all the diagnoses , get her doctors and all that in place....did you all go through this?? Does it get better?? What were your coping methods? Does it level out?

[Andy]

When your child was first diagnosed how did you feel? Isa has the tics and vocal tics, epilepsy and sensory issues, now they are saying she is on the autism scale. Im fighting with insurance to get her to a better team of docs, been fighting for that for a month, there has been a doctors appt every week this month, constant ear infections and high fevers, meeting with the early education intervention team and while I think Im taking it all in stride and its not bothering I dont think I really am okay. I feel like all Ive done is fight people, first my own family when they were in denial and then the doctors and the insurance...Ive gotten so serious that my husband cant joke with me, at the end of the day after dealing with her constant hyperactivity and over and over questions that she asks even though she was just told the answer, I am frazzled and worn out and snippy. I dont want this to take over my whole life and let this happen to me and my marriage but at the same time I feel like right now in the beginning I HAVE to be on top of everything until we get all the diagnoses , get her doctors and all that in place....did you all go through this?? Does it get better?? What were your coping methods? Does it level out?

 

I do not know your child but you mentioned that the doctor stated that she is on the autism scale. There are doctors who place Tourette Syndrome on the autism scale and others who place learning disabilities, ADD,ADD/HD as well. Sometimes that scale is used to freely.

[michele]

I agree with Andy. The DAN Dr.'s treat the immune issue PANDAS/tourettes kids like the autistic kids. Maybe because some of the symptoms overlap between asbergers and OCD and ADD and tourettes syndromes. I know when I was trying to explain my sons compulsions to the new principal she was envisioning the autistic students she has in the building who have strong likes, sensitivity to new environments and transitions. Also the fears. Autism is a wide spectrum. Our principal we have this year keeps calling my son's medical diagnosis one of the strange 'new" syndromes. PANDAS is not very understood by the medical profession so it really confuses the schools. Schools really need some inservice on this. TSA will do workshops. The newer teachers have more background because they require them to take classes and workshops on autism/Special Ed etc. All you can do is explain your child and their unique qualities. Don't get hung up on a label or diagnosis. They are beneficial for qualifying for school help. Your daughter is your daughter so don't see her through their labels. Just fight to get her the best Dr.'s and schooling you can!

 

 

 

Michele

When your child was first diagnosed how did you feel? Isa has the tics and vocal tics, epilepsy and sensory issues, now they are saying she is on the autism scale. Im fighting with insurance to get her to a better team of docs, been fighting for that for a month, there has been a doctors appt every week this month, constant ear infections and high fevers, meeting with the early education intervention team and while I think Im taking it all in stride and its not bothering I dont think I really am okay. I feel like all Ive done is fight people, first my own family when they were in denial and then the doctors and the insurance...Ive gotten so serious that my husband cant joke with me, at the end of the day after dealing with her constant hyperactivity and over and over questions that she asks even though she was just told the answer, I am frazzled and worn out and snippy. I dont want this to take over my whole life and let this happen to me and my marriage but at the same time I feel like right now in the beginning I HAVE to be on top of everything until we get all the diagnoses , get her doctors and all that in place....did you all go through this?? Does it get better?? What were your coping methods? Does it level out?

 

I do not know your child but you mentioned that the doctor stated that she is on the autism scale. There are doctors who place Tourette Syndrome on the autism scale and others who place learning disabilities, ADD,ADD/HD as well. Sometimes that scale is used to freely.

[PANDAS_Denmark]

Jenny,

 

I felt very alone and overwhelmed from the first strep/PANDAS episode. My son couldn't even walk yet and was having all these finger and eye tics. I was very scared and anxious and read online constantly day and night. It was during that time that my own polyarthritis began from the stress. Looking back that was a dark time.... Michele"

 

Hi Michele -

Have you ever considered and/or talked to the doctors about the fact, that your polyarthritis might not come from stress but from the very same streptococcus, that caused your sons PANDASepisode ??

I my self had one of my first MDEMattacks (multiphasic disseminated encephalomyelitis - causing sclerosislike symptoms) when my son had his first PANDASattack - both caused by streptococcus. We are now both treated with Zithromax - and life wouldn´t be the same without it !

Zithromax/Penicillin might help you as well !!!?

Best wishes -

PANDAS_Denmark

[michele]

I never thought the two could be connected but it is possible. My arthritis began summer 2003 it was a few months after his first strep infection. OMG my daughter had positive strep at the same time I came down with all this! I never thought the two could be related. We were on vacation and she and I both got sick. I never tested for strep. My joints were hot and ached and cramped in my fingers and feet so I couldn't do much. I was fevered and was bed ridden for a couple weeks. I went Dr. to Dr. and finally got a diagnosis of RA/ polyarthritis because of a positive RF. I was put on predisone, methothrexate, mobic, viox at some point. Now I opt to go med free because none of them worked very well but I am always in pain. Any extra activity will kick up the arthritis. I am always swollen in my hands and feet. Lately I was going to a chiropracter because my neck is always aching. He didn't help me though. I may try acupuncture next. I take six Aleve per day. Recently the rheumatologist called it fibromyalgia. He gave me some sleeping meds but I don't take them because I have a baby that sometimes needs me in the night. So you take daily antibiotics too? How did Dr's make the connection? It is hard enough to convince our Dr's to put Andrew on a daily antibiotic I don't know how I could get them to write me one? Do you and your son see the same Dr? Thanks for pointing the connection out to me. I am glad you are doing well now.

 

Michele

Jenny,

 

I felt very alone and overwhelmed from the first strep/PANDAS episode. My son couldn't even walk yet and was having all these finger and eye tics. I was very scared and anxious and read online constantly day and night. It was during that time that my own polyarthritis began from the stress. Looking back that was a dark time.... Michele"

 

Hi Michele -

Have you ever considered and/or talked to the doctors about the fact, that your polyarthritis might not come from stress but from the very same streptococcus, that caused your sons PANDASepisode ??

I my self had one of my first MDEMattacks (multiphasic disseminated encephalomyelitis - causing sclerosislike symptoms) when my son had his first PANDASattack - both caused by streptococcus. We are now both treated with Zithromax - and life wouldn´t be the same without it !

Zithromax/Penicillin might help you as well !!!?

Best wishes -

PANDAS_Denmark