Sleepless in South Bend

[billn]

I am a very recently widowed father of a 11 year old girl who I believe among other things is dealing with PANDAS. I am interested in support/ideas which might speed the treatment of my daughter.

 

In March her debilitating behaviours / fears / oversensitivities abated while on augmentin 500mg twice day for a positive strep throat culture. I didn't know about PANDAS at that time. Her 6 year history and bad OCD closely matches many of the published criteria for PANDAS. She had been better at the end of March, not so better I would say "all done" but better. However then the 20 day extended course of augmentin 500 finished and I could not get any more for her from her pediatritian. The contact with a pediatric neurologist who knows PANDAS has been made, but nothing sooner than mid May.

 

I can reason no legal way to restart the antibiotics to relieve my childs pain and suffering. These last 2 weeks without antibiotics she's been steadily loosing the ground she gained. Is my only choice to watch my child suffer until mid May? Perhaps some others have been in this position, hopeful but helpless to help their child...

 

 

 

[Chemar]

Hi

I am bumping up your first post so others can respond

[laure]

I'm sorry for your loss and now to have this illness to cope with - my heart goes out to you!

Someone will slap my wrist for posting this, but we were in your boat some years ago, and were able to find sites online for antibiotics without a prescription. It was expensive but worth it to tide us over.

[billn]

any words from parents in the same position are welcome, I understand there are many options. I believe the practitioners here in South Bend are skilled and caring but with such a long lead time for appointments my child gets caught in the middle.

 

if anybody can share their story of having to wait for a month while their child regresses and how they got through that time, and functioned, it would be helpful.

 

If anyone knows a Pandos sensitive doctor in South Bend who doesn't have a four week waiting list that also would be helpful.

[MomWithOCDSon]

I don't know anyone in South Bend, but if your child can withstand a car-ride to Chicago, there may be a couple of viable options in this area. If you check the pinned threads, you'll find PANDAS-knowledgable practitioners, and perhaps one of those can help you sooner than your standing neuro appointment.

 

As for hunkering down and making it through without abx assistance until mid-May, if unavoidable, I would try the following:

• try regular dosing with ibuprofen (anti-inflammatory);
• try adding olive leaf and/or coconut oil to vitamin regimen (natural anti-bacterials);
• if your DD is having trouble sleeping, try adding a low dose (1 mg) of melatonin about one hour prior to lights out.

I'm so sorry you're going through this, and as a single parent, to boot. In general, pushing anti-inflammatory agents in all forms (through supplements, through diet, through OTC meds) may help you weather the storm. But if you have the option to travel perhaps a relatively short distance and see a doctor in the next week or so, I would give that a shot. We know from experience that lost time is very difficult to regain. Hang in there!

[billn]

It is so sad how frightened she is, pupils wide. I wish I were 1/2 as brave as she is to go out into the world. Each day has happy moments and sad.

 

You in the east coast are so lucky if you have at least trained ped docs to give pandas antibiotics. The midwest has a lot of catching up to do

[kmacdonald34]

I am sorry for your loss and all you are dealing with. If you could find a PANDAS dr, even if it is long car ride away, it is worth it. One of the dr we are seeing gave me a year long prescription to antibiotics so that we would never run out. Hope you can find some help.

[billn]

We visited her ped gp today and he agreed to bridge the 3 remaining wks with anti-biotics. So mid may we hopefully will meet with local ped neu who has treated pandas before and consults with dr k.

 

I hope to sleep better in 2 or 3 days as my daughter is less tormented by her fears, ocd, sensation. However i would welcome meeting anyone in region, esp sb area, who has delt with this... Hardly anyone knows the horror and helplessness.

[WorriedDADNMOM]

billn, not sure if Columbus,OH is close enough, but I can advise of good DAN, Integrative Pedi that has the whole approach.

 

Reply or PM me and I can give you link for him, website, videos and other info.

[riffleshell]

I also am so sorry for your recent loss and you are real warrior dad to fight PANDAS and your grief at the same time.

 

In addition to MomWithOCDSon's suggestions, here some things you can try in addition to your prescription antibiotics

• vitamin C
• turmeric/curcumin
• a touch of benadryl at night -- helps with sleeping and the anti-histamines help some with PANDAS symptoms.
• anti-inflammatory diet

You can see what supplements we take in my signature below, but not every kid has the same reaction to every nutritional supplement or medicine.

[billn]

The neurologist appt is 10 days away. On Friday my daughter went to the park across the street, of her own will and alone, and played around the crabapple tree with the neighbor kids. This is 10 days after anabiotic started (for the second time ). She also spent Sunday with a friend raking leaves out of the garden. In many ways I can see she's getting better.

 

Tomorrow I see the psychiatrist who eight weeks ago was telling me she had OCD and I needed to be ready for the long haul. I have now seen her get better twice (after being allowed to get worse by professionals who said they knew better) and I know of no circumstance where OCD is cured with antibiotics except pandas. I am not sure how I will cope with the meeting tomorrow, it is hard being thought a crank -A desperate parent and a crank. It would be so much easier if my daughter would perform like a monkey to an organ grinder and act completely cured. But I don't know any normal 11-year-old who would do such a thing much less somebody who I think has suffered so much already.

Edited May 5, 2015 by billn

[MomWithOCDSon]

Billn -

 

Stick to your guns. Wear the mantle of "Crank" loud and proud, if you must.

 

When my DS was going through what your DD is now going through, I failed to do just that. There was less information, less back-up, less support, and I took the words and advice of "professionals" to heart and abandoned my better instincts. We couldn't "prove" PANDAS sufficiently, and we couldn't find anyone local to help. So we did things their way for another 6 years. As a result, my DS and our entire family were forced through tougher experiences than might have otherwise been the case, and my DS's return to health and functionality was a steeper climb than it needed to be.

 

Now I'm a full-grown Crank, and I'm never going back.

[billn]

I desperately want to keep as many professional resources open and available as I can, you can call this diplomacy. It amazes me how so many are using the 2010 white paper which is almost completely contradicted by panel discussions such as the April 2014 pandas breakfast with the key players speaking.

 

The appointment with the psychiatrist went well but he was quite unacquainted with pandas. He did say "if I were a parent my child got better on anabiotic's I would act according to that information" or something to that effect.

 

Unfortunately because of virus or stronger strep my daughters now flaring while on the 500x2 augmentin. Yesterday she had an OCD panic attack such that I had to carry her limp to the car while her tongue hung out her mouth and she made clacking noises. When this happens she loses the ability to select words and form sentences. She ends up sounding like some old movie version of Indian speak with backwards word orders like Yoda.

 

After a couple hours she calmed down and was able to move her arms and legs again but her system was so upset she threw up everything she had eaten for supper including the anabiotic I've given her.

 

I wish the neurologist appointment were happening sooner so she wouldn't have to suffer so much. I can't see asking the general pediatrician for more higher anabiotic those at this point. ( I did give her some peanut butter hoping that would help)

[billn]

Ah ha. .... 99.5 fever along with the flare. Thats wit an advil in her. For sure something is going on.

 

Fiddlesticks.

 

Update 9pm: the fever abated and the pans flair decreased substantially. I think i saw this sort of thing a couple of times before in previous months but didn't know what it was. It is nasty that flu or a cold will also set off her symptoms.

 

Will see how she is after a nights sleep

Edited May 7, 2015 by billn

[billn]

After two days she sis till having some trouble but at least no fever. She says that she feels very tired.

 

1) assuming this was viral what would be helpful to speed her health?

 

2) if it was not viral but rather hiding resistant strep is there anything I can do between now and our first neurologist appointment next week to help her?