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2 wks post IVIG update


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Getting caught back up with everything now, so wanted to give an update on 9 y/o son. IVIG done with Dr K two weeks ago now. Pre-IVIG my sons symptoms were not in wax/wane mode anymore they just seemed continous, he has had PANDAS we are guessing since prob around 2 y/o. Augmentin 875 twice a day pre-ivig seemed to subside the violent rages ( almost flipped to opposite end with bouts of silly insanity-literally) ,and his remaining symptoms were still placing him nonfunctional.

It was much smoother than I could have imagined with Dr K's office/staff -I just love that doctor and his nurses could just hug and squeeze them ( : . Luckily, son's mood was pretty good on the days we went. Before IVIG my husband was living in a separate house with our son, away from myself and the other kids and ds could only function for about 2 hours when he was back in the home. ds was sick one day ( nausea and small headache) on day 2 post ivig- no other side effects. We brought him home directly after returning from Chicago so that 'coming back home' would not be a hurdle to overcome. Amazingly- it is now two weeks post ivig and he has done better ( beings he couldn't do longer than 2 hrs before in the home - wow)

We are only two weeks out- and have had only 2 rages ( not even restraining ones) , many ups/downs and fits, but also see times of normal age behavior. His down times are MUCH shorter and more controlled. His tics are gone, there are still some motor movements ( chorea type- body constantly in motion but not tic'ing) He is doing one sheet of schoolwork every day ( impossible before) There are some new things we are experiencing right now- nightmares and very scared of his room- wanting to sleep with us or siblings. Overall though, we aren't close to being healed all the way- BUT we see changes and that feels good.

Also, we were under the understanding that his sleep center tests were all negative but they contacted us and informed us he does have sleep apnea 4-5 x's / hr. They are recommending tonsillectomy. Dr K says once healing is stabilized ( more towards end of summer) and then contact him for ok , high dose antib before and after. So until he can go thru with t&a , they will be giving him a sleep mask for the apnea. Hopefully this will also help him feel much better! Have been reading up on posts about what other parents experienced and/or recommend when it comes to t&a's. Thank you all for sharing your stories and experiences it is so great to be able to resource information here. Everyone's story is so valuable in helping the next child without even knowing it!!!!

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Thank you for that. Its so good to hear! So, no weeks of worsening before getting better?

 

 

So far, it is def not worse and I keep praying it just continues to get better !! It is hard when he's had a pretty good day and then starts to spiral down, I have to remind myself what it was like before ( we didn't have good days hardly at all ) We are also working on sorting out now what is PANDAS and what is behavioral- this was very difficult before to distinguish between.

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Thank you for the update!

 

I know you probably posted this already, but did you do the Cunningham test? I did find where you said your son's Lymphs were always high during bloodwork (as are my daughters). I probably did not go back far enough to find the Cunningham info.

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Thank you for the update!

 

I know you probably posted this already, but did you do the Cunningham test? I did find where you said your son's Lymphs were always high during bloodwork (as are my daughters). I probably did not go back far enough to find the Cunningham info.

 

We didn't do the cunningham- we were sure with his dnase titers and past history that he did have pandas. I'm sure there are other reason why parents get it done also, but I wasn't that familiar with the ins and outs of the numbers yet. I struggled with feeling so lost in the whole process and pulled in so many different directions until one day it just clicked for me, this is whats wrong -this is what we need to do and everything else has just sorta fallen into place after that.

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Thank you for the update!

 

I know you probably posted this already, but did you do the Cunningham test? I did find where you said your son's Lymphs were always high during bloodwork (as are my daughters). I probably did not go back far enough to find the Cunningham info.

 

We didn't do the cunningham- we were sure with his dnase titers and past history that he did have pandas. I'm sure there are other reason why parents get it done also, but I wasn't that familiar with the ins and outs of the numbers yet. I struggled with feeling so lost in the whole process and pulled in so many different directions until one day it just clicked for me, this is whats wrong -this is what we need to do and everything else has just sorta fallen into place after that.

 

cool....someone said something like.....it's like looking for hay in a hay stack...if i got that right!!!

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So happy to hear such great news from you and Alex today!

 

On a side note in terms of the T&A surgery, we were told by several people to do the same surgery for the same reasons and we held off and our son's tonsils did go down after long-term antibiotics and IVIG. So, I hope the same thing happens to your son.

 

Again, I am so happy for your family post IVIG.

 

Elizabeth

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Great update!!!!

 

AND, I concur with Elizabeth.... We debated T & A due to how swollen our son's tonsils were and PANDAS situation. Ultimately, we decided against doing the surgery and things are fine now.

 

Since you have such a large family I wanted to remind you how important we felt checking the entire family for strep was to our success. After our second IVIG we found DH to have high titers and he has been treated for active strep as a result. His rapid/cultures were negative.

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Great update!!!!

 

AND, I concur with Elizabeth.... We debated T & A due to how swollen our son's tonsils were and PANDAS situation. Ultimately, we decided against doing the surgery and things are fine now.

 

Since you have such a large family I wanted to remind you how important we felt checking the entire family for strep was to our success. After our second IVIG we found DH to have high titers and he has been treated for active strep as a result. His rapid/cultures were negative.

 

Did you run family titers just the one time or do you do this every so often ( like every 3 mths for ex) on everyone ??

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YEAH!!!!!!

I am so happy for you!!!

Keep us posted..

Lauren is 10 week post IVIG and I am getting ready to take her to register her for

kindergarten(again) and she is so excited!

Tracie

 

This made me smile that she is excited about kindergarten- that has to feel so happy for you!!! I can't wait for the day he is excited to go back to school ( :

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We only retested DH to determine if titers dropped after antibiotics. SLOWLY MOVING DOWN. We will keep testing every couple months to make sure they drop to sub negative.

 

-Wendy

 

Great update!!!!

 

AND, I concur with Elizabeth.... We debated T & A due to how swollen our son's tonsils were and PANDAS situation. Ultimately, we decided against doing the surgery and things are fine now.

 

Since you have such a large family I wanted to remind you how important we felt checking the entire family for strep was to our success. After our second IVIG we found DH to have high titers and he has been treated for active strep as a result. His rapid/cultures were negative.

 

Did you run family titers just the one time or do you do this every so often ( like every 3 mths for ex) on everyone ??

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