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How to get out AND to the doctors?


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DS hasn't left the house since February 11. We may have an appointment with Dr. Schulman in Brooklyn, NY on Friday (squeezing us in). Any advice how to get him there? Last time DH simply explained he was going whether it was on his own or he would carry him. Anyone else ever have to deal with this? As it is DS will probably have to wear DH's crocs as he hasn't worn shoes since February and they were tight then. We won't know until the morning of the appointment so that settles whether we work on this is advance or not.

 

Thanks,

T.Anna

DS15

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T.Anna,

We lived this for so long. I get a churning in my stomach, imagininzing the stress you are feeling now- just thinking about Friday. My daughter would not leave the house (or even her room!) for months at a time. She was carried into her doctor's over my husband's shoulder many a time. We left hours in advance, bought her junk food to try to coax her. She would sit sideways in the car, no seatbelt under a blanket, screaming, cursing at us. We always took a car that had child locks in the back. There were times when she was not aggressive, just would not leave the house.

We would sit in the car with it running for so long, just waiting. Due to her OCD, if she saw us she would run back upstairs to her room. It was a nightmare. all we wanted to do was get her to the PANDAS doc to get her better & we could not get her out of the house!

My daughter went barefoot for years (no kidding). even in winter. we had to drop her at the doctor's door and she would go in and hide in the corner of the office. At least the doctor knew we were not exaggerating her severity. :blink:

I have been following your posts for a while & I think our kids are similar. I want to give you hope. My daughter is 15 and after pex twice, a few IVIgs, and a few other things: she is doing really well. By the standards of a non-PANS parent, she has a lot of room for improvement, but she is showering, went to school this year (mostly), swims, goes out for ice cream with friends, emails, has hobbies. She still has OCD, some tics, depression and other psychiatric symptoms, but we are still hoping for more improvement.

Her nightmare started in 2008 and here, almost 5 years later, she has lost a lot, but I think we finally have solid hope for her future.

Feel free to PM me if you want to talk more!

I will be saying a few prayers for you this Friday, T.Anna.

A big hug for you, too, dear. I know the H E double-hockey-sticks you are feeling and he is living now.

Edited by PowPow
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I feel your pain! If not wearing shoes helps, just take them with you just in case the pavement is hot. Sometimes I can get my son to cooperate if his feet never touch he ground. He will even ride on a pink stroller over walking himself in.

Is there anyway you could try a few smaller trips between now and then for a reward or whatever motivates him? I wish I had a solution for you. Just do t give up.

Have you ever tried to get a behavioralist come to the house for help, therapy, and CBT? I think I would pursue that avenue if you haven't already. Sometimes as parents were are just too close, too frustrated, and emotionally fried to help them through these hurdles. Are there any services available through the state? And in a worst case scenario, would the doc be willing to Skype or FaceTime? Just trying to think outside the box.

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TAnna,

I am so sorry!! I am new to all of this so I have no idea what to tell you to help but that I will be praying for you. My DS is 23 now and we are going through the same thing. Yesterday I found a dr here in Birmingham,Al that was willing to see us and said to have in in at 1pm. Went upstairs to his room where he "lives" and told him I finally had him an appt with a dr. but it was at 1:00 so he needed to start getting ready to go. He blew up!!! Yelling, he said that I knew he had to have more time than that to prepare himself! I asked how long and he said a week. I told him good, because we have one a a week from today too at 8:45. He screamed THERE IS NO WAY I CAN BE THERE THAT EARLY! His sleep is always off. One week he sleeps during the day, the next at night. He is down to only eating toast and stick cheese. He has never been ugly, dissrespectful or mean towards anyone especially me! It is because he Can't do it! I cried the whole day! I just don't know what to do anymore! He is an adult, in age, so he can refuse treatment! He has! To get him to his first Psychiatrist appt. I went through the same thing with him. I told him he had 30 minutes. He could get in the car and go with me or pack up and leave, Two options, that's it and he went! Mad as CRAP the whole time, but went. He is so much worse now just don't know if that will work. All these years of this and just putting all things together and without a doubt, it is Pandas! I don't know how to start a DM but if you do, message me and we can chat. I am LOST on how to handle this!!! I can't just let him stay in his room forever and not help him but cant drag a 6'3 man out and make him do it either!

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DS hasn't left the house since February 11. We may have an appointment with Dr. Schulman in Brooklyn, NY on Friday (squeezing us in). Any advice how to get him there? Last time DH simply explained he was going whether it was on his own or he would carry him. Anyone else ever have to deal with this? As it is DS will probably have to wear DH's crocs as he hasn't worn shoes since February and they were tight then. We won't know until the morning of the appointment so that settles whether we work on this is advance or not.

 

Thanks,

T.Anna

DS15

Is there anyway to kind of use his OCD to get him there? Like mapping/planning the trip? Just trying to throw something out there that may help. We've had to use valium sometimes to get my daughter to the doctor. I don't like to use it, but no doctor=no better, so I suck it up and do what I've got to do.

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I understood that a few of these specialists would do phone consults or skpe appts when things got really bad. Is that correct? I know our immuno would do one if a need really arose, but we are already established now so that may make a difference.

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I have certainly been there only my son was small and he was carried kicking, screaming, hitting to the car and my husband held him down in the backseat. He settled before we got there.

 

I know it will be difficult but I'd take him, no matter if he is willing or not, shoes or not. You have been given some good ideas. I'll be thinking about you and your family on Friday. Hugs.

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Thanks everyone!! We have been doing this "remotely" since February with home IVIGs (not much help), home blood draws, genetic testing, Moleculera, etc. Lately, we have seen some improvements. He no longer has insomnia, rather he falls asleep (against his will sometimes) between 11:30 -1am, and sleeps until noon. I have no idea how that happened, but nothing else seems to have changed.

 

Unfortunately, he has also basically cut his pills by half. He hasn't slid at all (yet?), but maybe that's because he is taking such high doses of Augmentin, Biaxin and Valtrex that it doesn't make so much of a difference?!

 

If the appointment is available (we will know Friday at 7am), then we will go...I am strengthened by the fact that others have succeeded in this before me. Thankfully, DH is a very strong/big guy so DS, although already 5'6" or taller, is so slight that it should be manageable. Hopefully, our seriousness will be enough and DS will just walk out in his own.

 

Thanks for the hugs and prayers!!!

T.Anna

 

PS. BamaMom, did you get my PM?

Edited by T.Anna
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Not being able to get my nephew out of the house and to doctor appointments has been the absolute biggest challenge so far for my sister and me.

 

We have no family living around here and no friends available to help us physically get him out when he refuses.

 

I tried to lift him off his bed one time and he was like a ninja, not attacking me....but escaped and hid very well. I don't know what I was thinking.....I knew it would never work....but I felt I had to try anyway.

 

So, after not ring able to get him out of the house for a few very, very important appointments.....we decided he needed to go to the emergency room. We were desperate to get him seen! We had it all planned in our head how it would play out.

I called an ambulance and explained that we needed to take my nephew to the hospital. I tried to tell them that he is not in any immediate danger and we just need help getting him there.

They have their own protocol and did not want to talk to me until I dialed 911.

To make a long story short......after calling 911......two police officers arrive. It was devastating for my nephew. He was hysterical and sooooooooooo mad at my sister and me. One of the worst days of my life, really.

We did not give him any advance warning so he would not try and run inside a closet. He was just sitting there playing a video game when two armed cops come up behind him and tell him to shut the game off. The look on his little face was something I will try very are to forget. I mean this is a little boy that weighs 73 pounds and is an angel. A gem of a child.....just very sick.

He ended up getting in my car and we got him to the ER.

 

The hospital ended up being an extremely, amazingly disappointing experience. But.....the one good thing that came of this experience.....the next morning my nephew got in the car to, finally, meet a pediatrician that was going to help us.....once he met my nephew in reason, that is. My nephew was too scared to not get in the car.....afraid the police would come again.

That appointment proved to be pivotal in getting my nephew the help he needs.

I completely understand what you are going through.

We are gong to see a pediatric neurologist soon and I am terrified that he will not go. My nephew was given some Xanax to calm him down......it does quiet him a bit.....his tics are literal,y non- stop......some last 25 minutes or more....verbal tics.

We also started him on Luvox and it seemed to take the edge off of his madness enough to get him out of the house.

But....,he is now refusing the medication......his whole sensory system is on fire.....he cannot swallow pills....so we crush the Luvox and give it to him jello. Well, the grittiness is too much for him to handle and he refuses to take it. Our pediatrician is working with a local pharmacy that does compounding....they are working on producing a liquid form of Luvox, custom made for my nephew.....they are trying to make it in a nice flavor...my nephew is requesting bubble gum. So, we shall see.......without the Luvox, my nephew is just a complete mess.....with it, he is a bit quieter.

 

So, I am praying that he will like and take the new form of Luvox before the neurologist appointment. Otherwise, I do not know if we will be able to eat him out of the house. My nephew wears shoes.....no socks....it would ate him half an hour to choose a 'good' pair of socks........he decided to skip the socks one at and it eloped. But now it raked him 20 minutes to put his sneakers on.

My nephews reasoning skills are completely out the window. We cannot punish him or argue with him.....he is not capable of reasoning at all...pretty much an impossible task.

So, sorry for the long post.....it is my first time posting about my nephew since this all suddenly started in March.

I just wanted to let you know that I know exactly what you are going through!

You finally get an appointment and when the day comes....the kid will not go. It has been a complete nightmare!

Hope more people write of their experience in getting our sick children out the door.

Thanks for the post.

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TAnna,

I am so glad you got an appointment for today! Good luck and I am praying for you and your son! You are a wonderful mama! Let me know how it goes and what dr. says.

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Karenna16,

I am sorry you and your sis are having to go through all of this with your nephew! Not having family around to help makes it even harder! Your sister is lucky to have you for support. Keep being the sweet aunt that you are. This support group has really given me some wonderful advise and information. I have hope now!

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