RJ's Treatment Journal

September 2000 - Hello Everyone, I want to let everyone know what medication RJ is on now and what kind of equipment he is using:

RJ's Equipment:
Kidcart and highchair base suction machine, neubulizer*, oxygen*, hospital bed, lots of tiny pillows,
toddler recliner, special carseat, pulse oximeter*.

*These items are only used when he is coming down with something.  In the last week or so RJ has only had to use the neubulizer once.

RJ's Medications:
- Robinul tablets for secretions - 1/3 tablet 3x daily
- Albuterol & saline for his breathing treatments - can be given every 4 hours as needed. Sometimes we do every two hours but only use the saline.Albuteral makes him nervous.  His legs tend shake (tremble) after a treatment.
- We have morpine on hand for his coughing seizures - Since we've got it we have not had to use it (murphey's law)
- We also have valium on hand just in case - we have used this about 3 times

Seizures: We have been resorting to his homeopathic doctor and have changed his remedy several times as his seizures change.  Currently, he is on cina pronounced (China) We have had some success in treating his seizures this way.  Some days are good and somedays are not so good but that seems to be
the case with all seizure med's.

Constipation: RJ's body adapts quickly to everything so what works this week may not work next week.  I have constantly been changing to keep up with him.  Mango juice, watermelon juice (thickened) have worked wonders in the past. Now we are trying the senakot, flax seed oil, olive oil, and if all the above
fail we resort to an enema. 

Most of you have heard of the Tay-Sach study that was circulating last year. RJ has been a part of this study since February 1999 shortly after his diagnosis (1 week) to be exact.  From this study RJ is on the following products:

Ambrotose - We used this as his primary thickener up until his last bad spell July 1.  Rhonda mentioned to me that because this is a brain stimulater it may be the cause of RJ having so many seizures.  We stopped the ambrotose and lessened his seizures.  We now use Thick It to thicken his liquids.

Phytaloe - He was getting this regularly until recently.  Since his eating has become more difficult we want him to take in as much food as possible. He is very particular and RJ wants hot, good food (who doesn't) so I only give this time him he has been around new people or large crowds to boost up his immune system.  RJ has not been sick other than aspirating...

Multi vitamin called plus 3, flaxseed oil, dha oil (fish capsules),

Now, I have a quesiton for you Tina, what kind of injectible do you have for
Colton for the Robinul.  What tube is it given through?

The more medication that I can give RJ rectally or otherwise the better it is for him.

Thanks everyone for sharing and allowing me to share too!
Ingrid