I'm tired

[lboll]

Hi all,

It's been so long since I've posted anything. We tried our first steroid burst and round of antibiotics with my son (10 and autistic). It worked! In fact, my husband had said, "If this works, I'll bring you coffee in bed for life." Ha! I'm enjoying my coffee.

When I say it worked, I simply mean that he stopped urinating every minute, stopped taking 8 showers a day, and just seemed overall, a much happier little boy.

In the last week though, his behavior has shot down again. He is now obsessing with putting all his clean underwear in the wash machine. He can't tell us why as he's autistic and not very verbal. He is urinating every minute or so, and is just running from one spot in the house to the other. He is also having sleeping difficulties (waking each morning at 3:00 a.m. and runs full steam ahead from then on).

 

Our doctor is on vacation until Saturday, so we can't get in to get him the antibiotics he needs (he responds best to Ceftriaxone given via injection- after several trials of others). 7 days of shots is not fun, but it helps so much.

 

Anyway, I just needed to vent. So tired...so tired. I know you all know how I'm feeling.

 

Thanks for 'listening'.

[kimballot]

lboll-

 

I am relatively new here so I do not know your history - but I just wanted to wish you well as you work through this and wait for meds. I hope you are working with a good PANDAS doc who can help you find longer-term solutions now that you know the steroids helped!

 

Best wishes -

[saidie10]

So sorry your son is suffering right now and your family too. Sending positive thoughts your way and hoping he gets back to that good place again soon.

 

Hi all,

It's been so long since I've posted anything. We tried our first steroid burst and round of antibiotics with my son (10 and autistic). It worked! In fact, my husband had said, "If this works, I'll bring you coffee in bed for life." Ha! I'm enjoying my coffee.

When I say it worked, I simply mean that he stopped urinating every minute, stopped taking 8 showers a day, and just seemed overall, a much happier little boy.

In the last week though, his behavior has shot down again. He is now obsessing with putting all his clean underwear in the wash machine. He can't tell us why as he's autistic and not very verbal. He is urinating every minute or so, and is just running from one spot in the house to the other. He is also having sleeping difficulties (waking each morning at 3:00 a.m. and runs full steam ahead from then on).

 

Our doctor is on vacation until Saturday, so we can't get in to get him the antibiotics he needs (he responds best to Ceftriaxone given via injection- after several trials of others). 7 days of shots is not fun, but it helps so much.

 

Anyway, I just needed to vent. So tired...so tired. I know you all know how I'm feeling.

 

Thanks for 'listening'.

[thereishope]

I'm sorry. It's hard to get a taste of what it could be like to then have it taken away again.

 

May I ask what other antibiotics you have tried? Do you see improvement in PANDAS symptoms with the injections? It doesn't seem right that your son has to suffer because the doctor is on vacation. Usually, they will have someone fillling in for emergencies.

 

Can your son take Ibuprofen?

[Mary M]

Tired...I think that may be the hardest part of this for all of us. I think few families outside of our circumstances can truly understand the effect of limited/disrupted sleep on the whole family. I would like to think that someone could prescribe the abx to your son while his Dr is away.

[Stephanie2]

I'm feeling the same way. Both of my son's have had a "brush" with autism and they both have PANDAS. Their PANDAS is relatively under control right now but their yeast and gut bacteria is not which brings a whole other set of behavioral symptoms. Sometimes I just want to leave town for a month. Can't even get away for a day b/c no one can handle my kids...

 

Just wanted to say you are not alone. This is quite a battle...

 

Stephanie

 

Hi all,

It's been so long since I've posted anything. We tried our first steroid burst and round of antibiotics with my son (10 and autistic). It worked! In fact, my husband had said, "If this works, I'll bring you coffee in bed for life." Ha! I'm enjoying my coffee.

When I say it worked, I simply mean that he stopped urinating every minute, stopped taking 8 showers a day, and just seemed overall, a much happier little boy.

In the last week though, his behavior has shot down again. He is now obsessing with putting all his clean underwear in the wash machine. He can't tell us why as he's autistic and not very verbal. He is urinating every minute or so, and is just running from one spot in the house to the other. He is also having sleeping difficulties (waking each morning at 3:00 a.m. and runs full steam ahead from then on).

 

Our doctor is on vacation until Saturday, so we can't get in to get him the antibiotics he needs (he responds best to Ceftriaxone given via injection- after several trials of others). 7 days of shots is not fun, but it helps so much.

 

Anyway, I just needed to vent. So tired...so tired. I know you all know how I'm feeling.

 

Thanks for 'listening'.

[lboll]

Hi everyone,

I appreciate all your thoughts and kindness. Vickie, we have tried the usual antibiotics. The Amoxicillin had no results at all. My son won't swallow pills and if you crush up Augmentin it tastes horrific, so he wouldn't try that. So we were left with the injections. Last night we tried giving him some chewable Ibuprofen. He screamed and protested, but we got one down him. Unfortunately, his dose is 2 1/2 tablet. Any ideas on that?

 

We are the ones living in China, so no other doctor here really understands what we're doing. The doctor we're working with is helping us because we are also working long distance with Dr. T.

 

My son is so out of control that my normally incredibly patient husband said last night, "If the next set of antibiotics doesn't work, I think we should drug him so he's a zombie or give him away." I know that sounds horrific, but that's where we're at right now. It would never happen of course, but it just goes to show how normally very sane people can just be "tired".

[lboll]

Hi Stephanie,

What does that mean that your kids have had a brush with autism? Are their gut problems so bad that they have autistic like symptoms? Just curious. I'm sure you've tried gluten free diet. We did the same, but it didn't work for our son. Sadly...

 

I've read about cruises for autistic families. I wonder if that includes PANDAS kids and families! Respite!!!!

 

 

I'm feeling the same way. Both of my son's have had a "brush" with autism and they both have PANDAS. Their PANDAS is relatively under control right now but their yeast and gut bacteria is not which brings a whole other set of behavioral symptoms. Sometimes I just want to leave town for a month. Can't even get away for a day b/c no one can handle my kids...

 

Just wanted to say you are not alone. This is quite a battle...

 

Stephanie

 

Hi all,

It's been so long since I've posted anything. We tried our first steroid burst and round of antibiotics with my son (10 and autistic). It worked! In fact, my husband had said, "If this works, I'll bring you coffee in bed for life." Ha! I'm enjoying my coffee.

When I say it worked, I simply mean that he stopped urinating every minute, stopped taking 8 showers a day, and just seemed overall, a much happier little boy.

In the last week though, his behavior has shot down again. He is now obsessing with putting all his clean underwear in the wash machine. He can't tell us why as he's autistic and not very verbal. He is urinating every minute or so, and is just running from one spot in the house to the other. He is also having sleeping difficulties (waking each morning at 3:00 a.m. and runs full steam ahead from then on).

 

Our doctor is on vacation until Saturday, so we can't get in to get him the antibiotics he needs (he responds best to Ceftriaxone given via injection- after several trials of others). 7 days of shots is not fun, but it helps so much.

 

Anyway, I just needed to vent. So tired...so tired. I know you all know how I'm feeling.

 

Thanks for 'listening'.

[Fixit]

The sadder part that your son is in there!!!!...ANd he can't find a way to help himself or help you help himself.

In jenny mcarthies book...she asked her kid something like.."why didn't you talk before?"...and he said "i couldn't find the words"""

 

IT IS TRULY TERRIBLE to be essentially trapped in your own body!!!!

[Stephanie2]

Well, when my 5 yo was evaluated he did not receive an autism diagnosis but she said he has a lot of autistic traits (scored 1 point away from the spectrum). When he was younger he would stand at the table and spin rings, throw toys, etc. He didn't socialize all that appropriately, etc. So he received the diagnosis of cognitive disorder-not otherwise specified (which is a bogus dx and has gotten us no support). In actuality, he has OCD, Tourettes and also ADHD/SPD.

 

My 2 yo started to regress and lose all babbling and back and forth communication at the age of 4 months. By 12 months I realized that all he did was sit in the corner and play silently by himself. He did not seek out social contact and he did not attempt any form of communication. We did, however, still have eye contact but I figured that would be the next to go. So I did not go through with his 12-month vaccines and I immediately started the GFCF diet and the DAN protocol. He has made a dramatic turnaround. He is now very social and communicative, but he has not recovered speech yet (he is now 26 months old and only has a handful of words). He also has OCD and Tourettes and maybe a little ADD (hard to tell in a 2 yo).

 

They both have PANDAS and I feel that pandas makes them more "autistic-looking" if that makes any sense. When they are not in pandas exacerbation they appear quite normal except for hyperactivity and speech delay.

 

I need to find out about these cruises!!! OMG, do I need that!

 

Stephanie

Hi Stephanie,

What does that mean that your kids have had a brush with autism? Are their gut problems so bad that they have autistic like symptoms? Just curious. I'm sure you've tried gluten free diet. We did the same, but it didn't work for our son. Sadly...

 

I've read about cruises for autistic families. I wonder if that includes PANDAS kids and families! Respite!!!!

 

 

I'm feeling the same way. Both of my son's have had a "brush" with autism and they both have PANDAS. Their PANDAS is relatively under control right now but their yeast and gut bacteria is not which brings a whole other set of behavioral symptoms. Sometimes I just want to leave town for a month. Can't even get away for a day b/c no one can handle my kids...

 

Just wanted to say you are not alone. This is quite a battle...

 

Stephanie

 

Hi all,

It's been so long since I've posted anything. We tried our first steroid burst and round of antibiotics with my son (10 and autistic). It worked! In fact, my husband had said, "If this works, I'll bring you coffee in bed for life." Ha! I'm enjoying my coffee.

When I say it worked, I simply mean that he stopped urinating every minute, stopped taking 8 showers a day, and just seemed overall, a much happier little boy.

In the last week though, his behavior has shot down again. He is now obsessing with putting all his clean underwear in the wash machine. He can't tell us why as he's autistic and not very verbal. He is urinating every minute or so, and is just running from one spot in the house to the other. He is also having sleeping difficulties (waking each morning at 3:00 a.m. and runs full steam ahead from then on).

 

Our doctor is on vacation until Saturday, so we can't get in to get him the antibiotics he needs (he responds best to Ceftriaxone given via injection- after several trials of others). 7 days of shots is not fun, but it helps so much.

 

Anyway, I just needed to vent. So tired...so tired. I know you all know how I'm feeling.

 

Thanks for 'listening'.

[lboll]

The sadder part that your son is in there!!!!...ANd he can't find a way to help himself or help you help himself.

In jenny mcarthies book...she asked her kid something like.."why didn't you talk before?"...and he said "i couldn't find the words"""

 

IT IS TRULY TERRIBLE to be essentially trapped in your own body!!!!

 

 

Yes, I agree with you 100% We have lived with his pain for about 8 years now. He is truly trapped and with all the interventions we've tried, he is still trapped. The PANDAS treatment is the only thing that we've found that can break him out of this trap. Please don't get me wrong. We love our son and have tirelessly worked to help him. My husband and I are huge advocates for him. I have changed my career and opened a school for children with special needs here in China. Our son is an inspiration.

 

We are just feeling overwhelmed by it all at the moment.

[Fixit]

OH..I Get it...I Get It!!!

[lboll]

OH..I Get it...I Get It!!!

'

Thank you, Fixit. But I'm a little afraid to put up postings now. I thought this could be a place where we could voice our trials and be hard and not judged. Maybe I'm taking the wrong thing out of your posting. I certainly understand your advocating for the child...but it's hard to feel judged all the time as a parent.

 

If you could take a walk down the street with my son and me, you would see what I mean. The stares, the looks of disgust...it's painful. And, I know my son sees them, but as you said, he's stuck. As a mom I want the people to be staring at me and giving me the dirty looks instead (though many do that as well). But constantly being judged is so hard.

[peglem]

OH..I Get it...I Get It!!!

'

Thank you, Fixit. But I'm a little afraid to put up postings now. I thought this could be a place where we could voice our trials and be hard and not judged. Maybe I'm taking the wrong thing out of your posting. I certainly understand your advocating for the child...but it's hard to feel judged all the time as a parent.

 

If you could take a walk down the street with my son and me, you would see what I mean. The stares, the looks of disgust...it's painful. And, I know my son sees them, but as you said, he's stuck. As a mom I want the people to be staring at me and giving me the dirty looks instead (though many do that as well). But constantly being judged is so hard.

Iboll...I can't speak for exactly what fixit means, but I thought she meant that she understands how you feel. This is a place where you can give voice to your difficulties without being judged, so don't be afraid to post.

 

When you said this:

My son is so out of control that my normally incredibly patient husband said last night, "If the next set of antibiotics doesn't work, I think we should drug him so he's a zombie or give him away." I know that sounds horrific, but that's where we're at right now. It would never happen of course, but it just goes to show how normally very sane people can just be "tired".

 

I flashed back to probably the worst times in our lives as my 7yo 40lb daughter was so outrageously out of control us big folks seriously considered that institutionalization was imminent. Its so heartbreaking- I can't think about it, even now w/o getting teary. And that's when we decided to use psych meds- we were stuck between a rock and a hard place (did not have an inkling about PANDAS yet) and chose the hard place, because maybe we could make it a little softer. And your right it sounds horrific...it IS horrific! I'm so sorry you're in that place right now. I wish I could tell you that we found a psych med that helped- Lord, we tried so many...a few have helped a little, but I feel guilty using the valium, feel guiltier knowing it could help her and not using it.

Sorry I didn't answer you sooner to sympathize- it still hurts to think about it, so I try not to.

[kimballot]

We are the ones living in China, so no other doctor here really understands what we're doing. The doctor we're working with is helping us because we are also working long distance with Dr. T.

 

Wow! I have so much respect for you. I am frequently feeling all alone and so far from my PANDAS doc (7 hours away). I cannot imagine half a world away.

 

It sounds like you have been down this path many times. You have less than a week left until the doc gets back on Saturday. You know you can hold it together and keep your son safe until that time... and keeping him safe is the main goal until the doc gets back.

 

It sounds like your son will not take any pills for meds. Do you ever use liquid versions (maybe mixed in a milkshake or something like that)? Even just childrens motrin until the doc gets back. Is there a pharmacy that can give you liquid augmentin - the baby version? I am sure you have thought of all this and if you do not want to reply I understand. I am just curious as to what you have tried and how you handle this usually.

 

Is there anyone that you can call in for some respite? Someone from the school you started? Maybe another parent or a teacher? It would be good if you could get a break for a few hours of sleep.